Schaap, Feija; Dijkstra, Geke; Fokkens, Andrea; Reijneveld, Sijmen; Finnema, Evelyn
Background: The number of people with intellectual disability and dementia in-creases; this combination causes behavioural changes. Dementia Care Mapping (DCM) supports staff in dementia care in nursing homes and may be useful in intel-lectual disability-care. This qualitative study examines the
Quasdorf, Tina; Riesner, Christine; Dichter, Martin Nikolaus; Dortmann, Olga; Bartholomeyczik, Sabine; Halek, Margareta
To evaluate Dementia Care Mapping implementation in nursing homes. Dementia Care Mapping, an internationally applied method for supporting and enhancing person-centred care for people with dementia, must be successfully implemented into care practice for its effective use. Various factors influence the implementation of complex interventions such as Dementia Care Mapping; few studies have examined the specific factors influencing Dementia Care Mapping implementation. A convergent parallel mixed-methods design embedded in a quasi-experimental trial was used to assess Dementia Care Mapping implementation success and influential factors. From 2011-2013, nine nursing units in nine different nursing homes implemented either Dementia Care Mapping (n = 6) or a periodic quality of life measurement using the dementia-specific instrument QUALIDEM (n = 3). Diverse data (interviews, n = 27; questionnaires, n = 112; resident records, n = 81; and process documents) were collected. Each data set was separately analysed and then merged to comprehensively portray the implementation process. Four nursing units implemented the particular intervention without deviating from the preplanned intervention. Translating Dementia Care Mapping results into practice was challenging. Necessary organisational preconditions for Dementia Care Mapping implementation included well-functioning networks, a dementia-friendly culture and flexible organisational structures. Involved individuals' positive attitudes towards Dementia Care Mapping also facilitated implementation. Precisely planning the intervention and its implementation, recruiting champions who supported Dementia Care Mapping implementation and having well-qualified, experienced project coordinators were essential to the implementation process. For successful Dementia Care Mapping implementation, it must be embedded in a systematic implementation strategy considering the specific setting. Organisational preconditions may need to
Full Text Available Claire A Surr, Alys W Griffiths, Rachael Kelley Centre for Dementia Research, School of Health and Community Studies, Leeds Beckett University, Leeds, UK Abstract: Dementia Care Mapping (DCM is an observational tool set within a practice development process. Following training in the method, DCM is implemented via a cyclic process of briefing staff, conducting mapping observations, data analysis and report preparation, feedback to staff and action planning. Recent controlled studies of DCM’s efficacy have found heterogeneous results, and variability in DCM implementation has been indicated as a potential contributing factor. This review aimed to examine the primary research evidence on the processes and the barriers and facilitators to implementing DCM as a practice development method within formal dementia care settings. PUBMED, PsycINFO, CINAHL, The Cochrane Library-Cochrane reviews, HMIC (Ovid, Web of Science and Social Care Online were searched using the term “Dementia Care Mapping”. Inclusion criterion was primary research studies in any formal dementia care settings where DCM was used as a practice development tool and which included discussion/critique of the implementation processes. Assessment of study quality was conducted using the Mixed Methods Appraisal Tool. Twelve papers were included in the review, representing nine research studies. The papers included discussion of various components of the DCM process, including mapper selection and preparation; mapping observations; data analysis, report writing and feedback; and action planning. However, robust evidence on requirements for successful implementation of these components was limited. Barriers and facilitators to mapping were also discussed. The review found some consensus that DCM is more likely to be successfully implemented if the right people are selected to be trained as mappers, with appropriate mapper preparation and ongoing support and with effective leadership for
Schaap, Feija D; Fokkens, Andrea S; Dijkstra, Geke J; Reijneveld, Sijmen A; Finnema, Evelyn J
The number of people with intellectual disability and dementia increases; this combination causes behavioural changes. Dementia Care Mapping (DCM) supports staff in dementia care in nursing homes and may be useful in intellectual disability-care. This qualitative study examines the feasibility of DCM for older people with intellectual disability and dementia. The present authors obtained data in focus groups and interviews with professional users and analysed using a framework for feasibility studies. With experts in dementia and intellectual disability researches, the present authors determined the overall feasibility. DCM was found to be feasible in intellectual disability-care, regarding five domains of feasibility. Staff reported DCM to be useful and valuable and addresses to their demand for skills and knowledge. All professional users found DCM feasible in intellectual disability-care, which was confirmed by experts. DCM is feasible in intellectual disability-care. When fully tailored to intellectual disability-care, DCM is useful and provides opportunities to assess its effectiveness. © 2018 The Authors. Journal of Applied Research in Intellectual Disabilities Published by John Wiley & Sons Ltd.
Background The effectiveness and efficiency of nursing-home dementia care are suboptimal: there are high rates of neuropsychiatric symptoms among the residents and work-related stress among the staff. Dementia-care mapping is a person-centred care method that may alleviate both the resident and the staff problems. The main objective of this study is to evaluate the effectiveness and cost-effectiveness of dementia-care mapping in nursing-home dementia care. Methods/Design The study is a cluster-randomised controlled trial, with nursing homes grouped in clusters. Studywise minimisation is the allocation method. Nursing homes in the intervention group will receive a dementia-care-mapping intervention, while the control group will receive usual care. The primary outcome measure is resident agitation, to be assessed with the Cohen-Mansfield Agitation Inventory. The secondary outcomes are resident neuropsychiatric symptoms, assessed with the Neuropsychiatric Inventory - Nursing Homes and quality of life, assessed with Qualidem and the EQ-5D. The staff outcomes are stress reactions, job satisfaction and job-stress-related absenteeism, and staff turnover rate, assessed with the Questionnaire about Experience and Assessment of Work, the General Health Questionnaire-12, and the Maastricht Job Satisfaction Scale for Health Care, respectively. We will collect the data from the questionnaires and electronic registration systems. We will employ linear mixed-effect models and cost-effectiveness analyses to evaluate the outcomes. We will use structural equation modelling in the secondary analysis to evaluate the plausibility of a theoretical model regarding the effectiveness of the dementia-care mapping intervention. We will set up process analyses, including focus groups with staff, to determine the relevant facilitators of and barriers to implementing dementia-care mapping broadly. Discussion A novelty of dementia-care mapping is that it offers an integral person
van de Ven Geertje
Full Text Available Abstract Background The effectiveness and efficiency of nursing-home dementia care are suboptimal: there are high rates of neuropsychiatric symptoms among the residents and work-related stress among the staff. Dementia-care mapping is a person-centred care method that may alleviate both the resident and the staff problems. The main objective of this study is to evaluate the effectiveness and cost-effectiveness of dementia-care mapping in nursing-home dementia care. Methods/Design The study is a cluster-randomised controlled trial, with nursing homes grouped in clusters. Studywise minimisation is the allocation method. Nursing homes in the intervention group will receive a dementia-care-mapping intervention, while the control group will receive usual care. The primary outcome measure is resident agitation, to be assessed with the Cohen-Mansfield Agitation Inventory. The secondary outcomes are resident neuropsychiatric symptoms, assessed with the Neuropsychiatric Inventory - Nursing Homes and quality of life, assessed with Qualidem and the EQ-5D. The staff outcomes are stress reactions, job satisfaction and job-stress-related absenteeism, and staff turnover rate, assessed with the Questionnaire about Experience and Assessment of Work, the General Health Questionnaire-12, and the Maastricht Job Satisfaction Scale for Health Care, respectively. We will collect the data from the questionnaires and electronic registration systems. We will employ linear mixed-effect models and cost-effectiveness analyses to evaluate the outcomes. We will use structural equation modelling in the secondary analysis to evaluate the plausibility of a theoretical model regarding the effectiveness of the dementia-care mapping intervention. We will set up process analyses, including focus groups with staff, to determine the relevant facilitators of and barriers to implementing dementia-care mapping broadly. Discussion A novelty of dementia-care mapping is that it offers an
Ven, G. van de; Draskovic, I.; Adang, E.M.M.; Donders, R.; Post, A.; Zuidema, S.U.; Koopmans, R.T.C.M.; Vernooij-Dassen, M.J.F.J.
BACKGROUND: The effectiveness and efficiency of nursing-home dementia care are suboptimal: there are high rates of neuropsychiatric symptoms among the residents and work-related stress among the staff. Dementia-care mapping is a person-centred care method that may alleviate both the resident and the
Yasuda, Mami; Sakakibara, Hisataka
To assess the effects of care staff training based on person-centered care (PCC) and dementia care mapping (DCM) on the quality of life (QOL) of residents with dementia in a nursing home. An intervention of staff training based on PCC and DCM was conducted with 40 care staff members at a geriatric nursing home. The effects of the staff training on the QOL of residents with dementia were evaluated by the DCM measurements of 40 residents with dementia three times at about one-month intervals (first, baseline; second, pre-intervention; third, post-intervention). The well-being and ill-being values (WIB values) of the residents with dementia measured by DCM were not different between the first and second rounds before the staff training (p = 0.211). Meanwhile, the WIB values increased from the first and second rounds to the third post-intervention round (p = 0.035 and p Staff training based on PCC and DCM could effectively improve the QOL of residents with dementia.
Lorenz, Klara; Freddolino, Paul P; Comas-Herrera, Adelina; Knapp, Martin; Damant, Jacqueline
The extent to which technology may be able to support people with dementia and their carers along the care pathway and in different care settings is of interest to policy makers and governments. In this paper we provide an overview of the role of technology in dementia care, treatment and support by mapping existing technologies - by function, target user and disease progression. Technologies identified are classified into seven functions: memory support, treatment, safety and security, training, care delivery, social interaction and other. Different groups of potential users are distinguished: people with mild cognitive impairment and early stages of dementia, people with moderate to severe dementia and unpaid carers and health- and social care professionals. We also identified the care settings, in which the technologies are used (or for which the technologies are developed): at home in the community and in institutional care settings. The evidence has been drawn from a rapid review of the literature, expert interviews and web and social media searches. The largest number of technologies identified aim to enhance the safety and security of people with dementia living in the community. These devices are often passive monitors, such as smoke detectors. Other safety interventions, such as panic buttons, require active intervention. The second largest number of interventions aims to enhance people's memory and includes global positioning systems devices and voice prompts. These technologies mostly target people in the early stages of dementia. A third group focusing on treatment and care delivery emerged from the literature. These interventions focus on technology-aided reminiscence or therapeutic aspects of care for people with dementia and their carers. While the review found a range of technologies available for people with dementia and carers there is very little evidence of widespread practical application. Instead, it appears that stakeholders frequently rely
Aberdeen, Suzanne M; Byrne, Graeme
The incidence of behavioural and psychological symptoms of dementia in residential aged care facilities is high. Effective team work and knowledgeable staff are cited as important facilitators of appropriate care responses to clients with these symptoms, but to achieve this within a resource-poor workplace can be challenging. In the study reported in this paper, concept mapping was trialled to enhance multifocal person-centred assessment and care planning as well as team learning. The outcomes of team concept mapping were evaluated using a quasi-experimental design with pre- and post-testing in 11 selected Australian residential aged care facilities , including two control residential aged care facilities , over a nine-month period. It was demonstrated that use of concept mapping improved team function, measured as effectiveness of care planning, as well as enhancing learning, with increased knowledge of dementia care even amongst staff who were not directly involved with the process. It is suggested that these results may be generalizable to other countries and care settings.
Ridder, Hanne Mette Ochsner
This seminar presents music therapy in person centered dementia care. In the first part focus is on research and documentation. How can short term music therapy document changes in symptoms of depression? Is Dementia Care Mapping a valid assessment tool for documenting group music therapy......? In the next part focus is on clinical music therapy – in group work as well as in individual work – and how the music therapist works in the interdisciplinary field....
Bökberg, Christina; Ahlström, Gerd; Leino-Kilpi, Helena; Soto-Martin, Maria E; Cabrera, Esther; Verbeek, Hilde; Saks, Kai; Stephan, Astrid; Sutcliffe, Caroline; Karlsson, Staffan
To describe available and utilized formal care and service at home for persons with dementia, from diagnosis to end-of-life stage, in eight European countries. A descriptive cross-country design concerning eight European countries as a part of the European research project RightTimePlaceCare. The research team in each country used a mapping system to collect country-specific information concerning dementia care and service system. The mapping system consists of 50 types of care and service activities. Sixteen of the 50 predefined activities concerning care and service at home were selected for this study and subdivided into three categories, following the stages of dementia. Availability was reported to be higher than utilization, and the findings indicated more similarities than differences among the eight countries involved. Even though there were several available activities of "basic care and services" and "healthcare interventions," they were utilized by few in most countries. Furthermore, "specialized dementia care and services" were sparsely available and even more sparsely utilized in the participating countries. The findings indicated that persons with dementia in Europe received formal care and service on a general, basic level but seldom adjusted to their specific needs. This study describes the gap between service provision and utilization enabling nurses to develop individually adjusted care plans for persons with dementia during the progress of the disease. The findings do not include matters of quality of care or how to best organize effective care and services. However, the activities of care and services presented here should shed light on what room there is for improvement when it comes to enabling persons with dementia to go on living at home. © 2015 Sigma Theta Tau International.
Geertje van de Ven
Full Text Available BACKGROUND: Dementia-care mapping (DCM is a cyclic intervention aiming at reducing neuropsychiatric symptoms in people with dementia in nursing homes. Alongside an 18-month cluster-randomized controlled trial in which we studied the effectiveness of DCM on residents and staff outcomes, we investigated differences in costs of care between DCM and usual care in nursing homes. METHODS: Dementia special care units were randomly assigned to DCM or usual care. Nurses from the intervention care homes received DCM training, a DCM organizational briefing day and conducted the 4-months DCM-intervention twice during the study. A single DCM cycle consists of observation, feedback to the staff, and action plans for the residents. We measured costs related to health care consumption, falls and psychotropic drug use at the resident level and absenteeism at the staff level. Data were extracted from resident files and the nursing home records. Prizes were determined using the Dutch manual of health care cost and the cost prices delivered by a pharmacy and a nursing home. Total costs were evaluated by means of linear mixed-effect models for longitudinal data, with the unit as a random effect to correct for dependencies within units. RESULTS: 34 units from 11 nursing homes, including 318 residents and 376 nursing staff members participated in the cost analyses. Analyses showed no difference in total costs. However certain changes within costs could be noticed. The intervention group showed lower costs associated with outpatient hospital appointments over time (p = 0.05 than the control group. In both groups, the number of falls, costs associated with the elderly-care physician and nurse practitioner increased equally during the study (p<0.02. CONCLUSIONS: DCM is a cost-neutral intervention. It effectively reduces outpatient hospital appointments compared to usual care. Other considerations than costs, such as nursing homes' preferences, may determine whether they
Montessori-based Dementia Care is an approach used in Alzheimer's care that does not involve chemical or physical restraints. This program works by giving the elder with Alzheimer/Dementia a purpose by getting them involved. When staff/families care for a confused Alzheimer/Dementia patient, who is having behaviors, the Montessori program teaches them to look at what is causing the behavior. When assessing the elder to determine what is causing the behavior, the goal is to find the answer, but the answer cannot be dementia. The goal of the program is to bring meaning to the life of an Alzheimer/Dementia elder.
Last month, viewers saw the first-ever TV advertisement about providing care for people with dementia. Screened as part of Bupa's initiative, bringing the issue of dementia care 'out of the shadows,' the ad features Ernie visiting his sister June, who has dementia, in a Bupa care home and shows the personalised care being delivered by specially trained staff.
Morgan, Robert O; Bass, David M; Judge, Katherine S; Liu, C F; Wilson, Nancy; Snow, A Lynn; Pirraglia, Paul; Garcia-Maldonado, Maurilio; Raia, Paul; Fouladi, N N; Kunik, Mark E
Dementia is a costly disease. People with dementia, their families, and their friends are affected on personal, emotional, and financial levels. Prior work has shown that the "Partners in Dementia Care" (PDC) intervention addresses unmet needs and improves psychosocial outcomes and satisfaction with care. We examined whether PDC reduced direct Veterans Health Administration (VHA) health care costs compared with usual care. This study was a cost analysis of the PDC intervention in a 30-month trial involving five VHA medical centers. Study subjects were veterans (N = 434) 50 years of age and older with dementia and their caregivers at two intervention (N = 269) and three comparison sites (N = 165). PDC is a telephone-based care coordination and support service for veterans with dementia and their caregivers, delivered through partnerships between VHA medical centers and local Alzheimer's Association chapters. We tested for differences in total VHA health care costs, including hospital, emergency department, nursing home, outpatient, and pharmacy costs, as well as program costs for intervention participants. Covariates included caregiver reports of veterans' cognitive impairment, behavior problems, and personal care dependencies. We used linear mixed model regression to model change in log total cost post-baseline over a 1-year follow-up period. Intervention participants showed higher VHA costs than usual-care participants both before and after the intervention but did not differ significantly regarding change in log costs from pre- to post-baseline periods. Pre-baseline log cost (p ≤ 0.001), baseline cognitive impairment (p ≤ 0.05), number of personal care dependencies (p ≤ 0.01), and VA service priority (p ≤ 0.01) all predicted change in log total cost. These analyses show that PDC meets veterans' needs without significantly increasing VHA health care costs. PDC addresses the priority area of care coordination in the National Plan to Address Alzheimer
Full Text Available Dementia is one of the major causes of disability and dependence amongst older people and previous research has highlighted how the well-being of people with dementia is inherently connected to the quality of their relationships with their informal carers. In turn, these carers can experience significant levels of emotional stress and physical burden from the demands of caring for a family member with dementia, yet their uptake of formal services tends to be lower than in other conditions related to ageing. This paper is based on a qualitative study undertaken in the Australian state of Queensland and explores issues of access to and use of formal services in dementia care from the perspective of the informal family carers. It identifies three critical points at which changes in policy and practice in the formal care system could improve the capability of informal carers to continue to care for their family member with dementia: when symptoms first become apparent and a diagnosis is sought; when the condition of the person with dementia changes resulting in a change to their support needs; and when the burden of informal care being experienced by the carer is so great that some form of transition appears to be immanent in the care arrangement.
Phung, Kieu T T; Chaaya, Monique; Prince, Martin
INTRODUCTION: In North Africa and the Middle East, studies about dementia prevalence are scarce. A pilot study was conducted in Lebanon to assess dementia prevalence, using the Arabic-validated 10/66 Dementia Research Group (DRG) diagnostic assessment for case ascertainment. The study also examined...... care arrangement and access to care. METHODS: A random sample of 502 persons older than 65 years and their informant were recruited from Beirut and Mount Lebanon governorates through multistage cluster sampling. RESULTS: The crude and age-standardized dementia prevalences were 7.4% and 9.......0%, respectively. People with dementia were mainly cared for by relatives at home. Access to formal care was very limited. DISCUSSION: Dementia prevalence in Lebanon ranks high within the global range of estimates. These first evidence-based data about disease burden and barriers to care serve to raise awareness...
Leng, Fong Yoke; Yeo, Donald; George, Stacey; Barr, Christopher
Professionals working with people with dementia need to develop new activities that occupy patients and increase positive emotions. Dementia care mapping is a reliable method of measuring well-being during activities with people with dementia. The iPad has many applications that may be suitable as a group activity for persons with dementia. Six people with dementia took part in two traditional and two iPad activities over two days. Well-being was recorded using dementia care mapping. Subjects displayed similar or better levels of well-being during iPad activities than traditional activities. A larger variation of behaviors was seen during iPad activities than traditional activities. With detailed planning using a person-centred care approach, iPad group activity has the potential to be as effective and engaging as other conventional activities in achieving well-being.
Full Text Available Kritika Samsi, Jill ManthorpeSocial Care Workforce Research Unit, King’s College London, London, UKAbstract: Uncertainty appears to typify the experience of living with dementia. With an uncertain illness trajectory and unpredictable levels of deterioration and stability in symptoms, people with a diagnosis of dementia may live with uncertainty and anxiety and find it hard to make plans or decisions for their future. People with memory problems and caregivers seeking a diagnosis of dementia may also potentially find themselves navigating a labyrinth-like maze of services, practitioners, assessments, and memory tests, with limited understanding of test scores and little information about what support is available. In this context of uncertainty, the apparent clarity and certainty of a “dementia care pathway” may be attractive. However, the term “dementia care pathway” has multiple and overlapping meanings, which can potentially give rise to further confusion if these are ill-defined or a false consensus is presumed. This review distinguishes four meanings: 1 a mechanism for the management and containment of uncertainty and confusion, useful for the professional as well as the person with dementia; 2 a manual for sequencing care activities; 3 a guide to consumers, indicating eligibility for care activities, or a guide to self-management for dementia dyads, indicating the appropriateness of care activities; and 4 a manual for “walking with” the person. Examples of these approaches are presented from UK dementia services with illustrations of existing care pathways and associated time points, specifically focusing on: 1 early symptom identification and first service encounters, 2 assessment process, 3 diagnostic disclosure, 4 postdiagnostic support, and 5 appropriate interventions. We review the evidence around these themes, as well as discuss service pathways and referral routes used by some services in England and internationally. We
Dichter, Martin Nikolaus; Trutschel, Diana; Schwab, Christian Günter Georg; Haastert, Burkhard; Quasdorf, Tina; Halek, Margareta
The Dementia Care Mapping (DCM) method is an internationally recognized complex intervention in dementia research and care for implementing person-centered care. The Leben-QD II trial aimed to evaluate the effectiveness of DCM with regard to caregivers. The nine participating nursing home units were allocated to three groups: (1) DCM method experienced ≥ 1 year, (2) DCM newly introduced during this trial, and (3) regular rating of residents' quality of life (control group). Linear mixed models were fit to cluster-aggregated data after 0, 6, and 18 months, adjusting for repeated measurements and confounders. The primary outcome was the Approaches to Dementia Questionnaire (ADQ) score; the secondary outcomes were the Copenhagen Psychosocial Questionnaire (COPSOQ) and the Copenhagen Burnout Inventory (CBI). The analysis included 201 caregivers with 290 completed questionnaires (all three data collection time points). The ADQ showed a significant time and time*intervention effect. At baseline, the estimated least-square means for the ADQ were 71.98 (group A), 72.46 (group B), and 71.15 (group C). The non-linear follow-up of group A indicated an estimated-least square means of 69.71 (T 1) and 68.97 (T 2); for group B, 72.80 (T 1) and 72.29 (T 2); and for group C, 66.43 (T 1) and 70.62 (T 2). The DCM method showed a tendency toward negatively affecting the primary and secondary outcomes; this finding could be explained by the substantial deviation in adherence to the intervention protocol.
Lee, Sang E; Casado, Banghwa Lee; Hong, Michin
This focus group study explored experience of Korean American personal care aides caring for older Korean Americans with dementia symptoms. Personal care aides described dementia caregiving as challenging, demanding and stressful, yet they cared for their clients with love and affection, particularly with jeong (i.e., a Korean cultural concept of love, affection, sympathy, and bondage). They learned about dementia mostly through their caregiving experience and expressed their need and strong desire to learn more about dementia. They felt for family struggle and observed family conflict and filial obligation. They advocated the value of personal care aides' involvement in dementia care. This study revealed a pressing need for dementia training for personal care aides and called for an outreach effort to recruit and train direct care workers with potential of providing culturally competent care for traditionally underserved ethnic minorities.
Jones, Cindy; Moyle, Wendy; Stockwell-Smith, Gillian
To ascertain care staff's knowledge of dementia relating to aetiology and/or pathology, symptoms and care/treatment; and explore their perceptions of the importance and adequacy of dementia education and training opportunities. Thirty-five care staff working in three secure dementia care facilities were recruited. Dementia knowledge was surveyed using the Staff Knowledge of Dementia Test (SKDT). Perceptions of dementia education and training were examined via semi-structured individual interviews. An average of 21 out of 33 SKDT questions (SD = 4.0) was correctly answered. Knowledge discrepancy was attributed to participants' cultural and ethnic origin and the length of residency in Australia of migrant care staff. Participants acknowledged the importance of dementia education and training but were critical of the content relevancy to direct care practices. There is a need to improve care staff knowledge of dementia, and dementia education and training should include direct practical competencies required for effective care delivery. © 2012 The Authors. Australasian Journal on Ageing © 2012 ACOTA.
Tropea, Joanne; LoGiudice, Dina; Liew, Danny; Roberts, Carol; Brand, Caroline
Best practice dementia care is not always provided in the hospital setting. Knowledge, attitudes and motivation, practitioner behavior, and external factors can influence uptake of best practice and quality care. The aim of this study was to determine hospital staff perceived barriers and enablers to implementing best practice dementia care. A 17-item survey was administered at two Australian hospitals between July and September 2014. Multidisciplinary staff working in the emergency departments and general medical wards were invited to participate in the survey. The survey collected data about the respondents' current role, work area, and years of experience, their perceived level of confidence and knowledge in dementia care and common symptoms of dementia, barriers and enablers to implementing best practice dementia care, job satisfaction in caring for people with dementia, and to rate the hospital's capacity and available resources to support best practice dementia care. A total of 112 survey responses were received. The environment, inadequate staffing levels and workload, time, and staff knowledge and skills were identified as barriers to implementing best practice dementia care. Most respondents rated their knowledge of dementia care and common symptoms of dementia, and confidence in recognizing whether a person has dementia, as moderate or high dementia. Approximately, half the respondents rated access to training and equipment as low or very low. The survey findings highlighted hospital staff perceived barriers to implementing best practice dementia care that can be used to inform locally tailored improvement interventions.
Gilster, Susan D; Boltz, Marie; Dalessandro, Jennifer L
This article is one in a series of articles in this supplement addressing best practice for quality dementia care. The Alzheimer's Association, in revising their Dementia Care Practice Recommendations for 2017 has identified staff across the long-term care spectrum as a distinct and important determinant of quality dementia care. The purpose of this article is to highlight areas for developing and supporting a dementia-capable workforce. The Alzheimer's Association Principles For Advocacy To Assure Quality Dementia Care Across Settings provide a framework to examine interventions to support the dementia care workforce in long-term care settings. Evidence-based approaches that represent these principles are discussed: (a) staffing, (b) staff training, (c) compensation, (d) supportive work environments, (e) career growth and retention, and (f) engagement with family. Although not all settings currently require attention to the principles described, this article proposes these principles as best practice recommendations. Recommendations and future research considerations to further improve the lives of those who live and work in nursing homes, assisted living, hospice, and home care, are proposed. Additional areas to improve the quality of a dementia care workforce person-centered care information, communication and interdepartmental teamwork, and ongoing evaluation are discussed. © The Author(s) 2018. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: firstname.lastname@example.org.
Sengupta, Manisha; Decker, Sandra L; Harris-Kojetin, Lauren; Jones, Adrienne
This article aims to describe potential racial differences in dementia care among nursing home residents with dementia. Using data from the 2004 National Nursing Home Survey (NNHS) in regression models, the authors examine whether non-Whites are less likely than Whites to receive special dementia care--defined as receiving special dementia care services or being in a dementia special care unit (SCU)--and whether this difference derives from differences in resident or facility characteristics. The authors find that non-Whites are 4.3 percentage points less likely than Whites to receive special dementia care. The fact that non-Whites are more likely to rely on Medicaid and less likely to pay out of pocket for nursing home care explains part but not all of the difference. Most of the difference is due to the fact that non-Whites reside in facilities that are less likely to have special dementia care services or dementia care units, particularly for-profit facilities and those in the South.
Judge, Katherine S.; Bass, David M.; Snow, A. Lynn; Wilson, Nancy L.; Morgan, Robert; Looman, Wendy J.; McCarthy, Catherine; Kunik, Mark E.
Purpose: This article provides a detailed description of a telephone-based care coordination intervention, Partners in Dementia Care (PDC), for veterans with dementia and their family caregivers. Essential features of PDC included (a) formal partnerships between Veterans Affairs (VA) medical centers and Alzheimer's Association Chapters; (b) a…
Rokstad, Anne Marie Mork; Vatne, Solfrid; Engedal, Knut; Selbæk, Geir
The aim of this study was to investigate the role of leadership in the implementation of person-centred care (PCC) in nursing homes using Dementia Care Mapping (DCM). Leadership is important for the implementation of nursing practice. However, the empirical knowledge of positive leadership in processes enhancing person-centred culture of care in nursing homes is limited. The study has a qualitative descriptive design. The DCM method was used in three nursing homes. Eighteen staff members and seven leaders participated in focus-group interviews centring on the role of leadership in facilitating the development process. The different roles of leadership in the three nursing homes, characterized as 'highly professional', 'market orientated' or 'traditional', seemed to influence to what extent the DCM process led to successful implementation of PCC. This study provided useful information about the influence of leadership in the implementation of person-centred care in nursing homes. Leaders should be active role models, expound a clear vision and include and empower all staff in the professional development process. © 2013 John Wiley & Sons Ltd.
Lin, Pei-Chao; Hsieh, Mei-Hui; Chen, Meng-Chin; Yang, Yung-Mei; Lin, Li-Chan
The quality of dementia care in hospitals is typically substandard. Staff members are underprepared for providing care to older people with dementia. The objective of the present study was to examine dementia care knowledge, attitude and behavior regarding self-education about dementia care among nurses working in different wards. This was a descriptive cross-sectional study. The present study was carried out from July 2013 to December 2013. In total, 387 nurses working in different wards were recruited from two hospitals in Taiwan by using convenience sampling. The nurses completed a self-report questionnaire on demographic data, experience and learning behavior, and attitude towards dementia care, and a 16-item questionnaire on dementia care knowledge. Descriptive and inferential statistics were used to analyze the status and differences in dementia care knowledge among nurse in different wards. The average dementia care knowledge score was 10.46 (SD 2.13), with a 66.5% mean accuracy among all nurses. Dementia care knowledge was significantly associated with age, nursing experience, possession of a registered nurse license, holding a bachelor's degree, work unit, training courses and learning behavior towards dementia care. The dementia care knowledge of the emergency room nurses was significantly lower than that of the psychiatric and neurology ward nurses. A significantly lower percentage of emergency room nurses underwent dementia care training and actively searched for information on dementia care, compared with the psychiatric and neurology ward nurses. Hospital nurses show a knowledge gap regarding dementia care, especially emergency room nurses. Providing dementia care training to hospital nurses, particularly emergency room nurses, is crucial for improving the quality of care for patients with dementia. Geriatr Gerontol Int 2018; 18: 276-285. © 2017 Japan Geriatrics Society.
Full Text Available Jacob HG Grand¹, Sienna Caspar², Stuart WS MacDonald11Department of Psychology, University of Victoria, Victoria, BC, Canada; 2Interdisciplinary Graduate Studies, University of British Columbia, Vancouver, BC, CanadaAbstract: Dementia is a clinical syndrome of widespread progressive deterioration of cognitive abilities and normal daily functioning. These cognitive and behavioral impairments pose considerable challenges to individuals with dementia, along with their family members and caregivers. Four primary dementia classifications have been defined according to clinical and research criteria: 1 Alzheimer’s disease; 2 vascular dementias; 3 frontotemporal dementias; and 4 dementia with Lewy bodies/Parkinson’s disease dementia. The cumulative efforts of multidisciplinary healthcare teams have advanced our understanding of dementia beyond basic descriptions, towards a more complete elucidation of risk factors, clinical symptoms, and neuropathological correlates. The characterization of disease subtypes has facilitated targeted management strategies, advanced treatments, and symptomatic care for individuals affected by dementia. This review briefly summarizes the current state of knowledge and directions of dementia research and clinical practice. We provide a description of the risk factors, clinical presentation, and differential diagnosis of dementia. A summary of multidisciplinary team approaches to dementia care is outlined, including management strategies for the treatment of cognitive impairments, functional deficits, and behavioral and psychological symptoms of dementia. The needs of individuals with dementia are extensive, often requiring care beyond traditional bounds of medical practice, including pharmacologic and non-pharmacologic management interventions. Finally, advanced research on the early prodromal phase of dementia is reviewed, with a focus on change-point models, trajectories of cognitive change, and threshold models of
Russell, Paul; Banerjee, Sube; Watt, Jen; Adleman, Rosalyn; Agoe, Belinda; Burnie, Nerida; Carefull, Alex; Chandan, Kiran; Constable, Dominie; Daniels, Mark; Davies, David; Deshmukh, Sid; Huddart, Martin; Jabin, Ashrafi; Jarrett, Penelope; King, Jenifer; Koch, Tamar; Kumar, Sanjoy; Lees, Stavroula; Mir, Sinan; Naidoo, Dominic; Nyame, Sylvia; Sasae, Ryuichiro; Sharma, Tushar; Thormod, Clare; Vedavanam, Krish; Wilton, Anja; Flaherty, Breda
Improving dementia care is a policy priority nationally and internationally; there is a 'diagnosis gap' with less than half of the cases of dementia ever diagnosed. The English Health Department's Quality and Outcomes Framework (QOF) encourages primary care recognition and recording of dementia. The codes for dementia are complex with the possibility of underidentification through miscoding. We developed guidance on coding of dementia; we report the impact of applying this to 'clean up' dementia coding and records at a practice level. The guidance had five elements: (1) identify Read Codes for dementia; (2) access QOF dementia register; (3) generate lists of patients who may have dementia; (4) compare search with QOF data and (5) review cases. In each practice, one general practitioner conducted the exercise. The number of dementia QOF registers before and after the exercise was recorded with the hours taken to complete the exercise. London primary care. 23 (85%) of 27 practices participated, covering 79 312 (19 562 over 65 s) participants. The number on dementia QOF registers; time taken. The number of people with dementia on QOF registers increased from 1007 to 1139 (χ(2)=8.17, p=0.004), raising identification rates by 8.8%. It took 4.7 h per practice, on an average. These data demonstrate the potential of a simple primary care coding exercise, requiring no specific training, to increase the dementia identification rate. An improvement of 8.8% between 2011 and 2012 is equivalent to that of the fourth most improved primary care trust in the UK. In absolute terms, if this effects were mirrored across the UK primary care, the number of cases with dementia identified would rise by over 70 000 from 364 329 to 434 488 raising the recognition rate from 46% to 54.8%. Implementing this exercise appears to be a simple and effective way to improve recognition rates in primary care.
Huschilt, Julie; Clune, Laurie
Innovative solutions for dementia care are required to address the steady rise in adults living with dementia, lack of adequate staffing to provide high-quality dementia care, and the need for family caregivers to provide care for their loved ones in the home. This article provides an overview of the use of socially assistive robots (SARs) to offer support as therapists, companions, and educators for people living with dementia. Social, ethical, and legal challenges associated with the use of robotic technology in patient care and implications for the use of SARs by nurses are discussed. These items considered, the authors conclude that SARs should be considered as a viable way to assist people living with dementia to maintain their highest possible level of independence, enhance their quality of life, and provide support to overburdened family caregivers. Further research is needed to evaluate the merits of this technological approach in the care of adults with dementia. Copyright 2012, SLACK Incorporated.
Full Text Available The overall aim of this 2-year Norwegian action research study was to improve the interaction between care workers and patients with dementia in a nursing home by means of sensory stimulation. Furthermore, the aim was to investigate how the staff experienced the interaction with patients suffering from behavioral and psychological symptoms of dementia before, under, and after introduction of sensory stimulation methods in clinical practice. An intervention program consisting of lectures and practical guiding in sensory stimulation was implemented. The care workers participated in group meetings to reflect on the progress. Focus group interviews and participant observations were conducted initially to map exciting practice, and at the end to evaluate potential changes in attitude and skills. Observation notes and interview transcripts were analyzed by means of thematic analysis which revealed a gradual emergence of person-centered care. A phenomenological life-world perspective may serve as a theoretical basis to deepen the understanding of the use of sensory stimulation.
Lykkeslet, Else; Gjengedal, Eva; Skrondal, Torill; Storjord, May-Britt
The overall aim of this 2-year Norwegian action research study was to improve the interaction between care workers and patients with dementia in a nursing home by means of sensory stimulation. Furthermore, the aim was to investigate how the staff experienced the interaction with patients suffering from behavioral and psychological symptoms of dementia before, under, and after introduction of sensory stimulation methods in clinical practice. An intervention program consisting of lectures and practical guiding in sensory stimulation was implemented. The care workers participated in group meetings to reflect on the progress. Focus group interviews and participant observations were conducted initially to map exciting practice, and at the end to evaluate potential changes in attitude and skills. Observation notes and interview transcripts were analyzed by means of thematic analysis which revealed a gradual emergence of person-centered care. A phenomenological life-world perspective may serve as a theoretical basis to deepen the understanding of the use of sensory stimulation.
Connor, Karen; McNeese-Smith, Donna; van Servellen, Gwen; Chang, Betty; Lee, Martin; Cheng, Eric; Hajar, Abdulrahman; Vickrey, Barbara G
For health organizations (private and public) to advance their care-management programs, to use resources effectively and efficiently, and to improve patient outcomes, it is germane to isolate and quantify care-management activities and to identify overarching domains. The aims of this study were to identify and report on an application of mixed methods of qualitative statistical techniques, based on a theoretical framework, and to construct variables for factor analysis and exploratory factor analytic steps for identifying domains of dementia care management. Care-management activity data were extracted from the care plans of 181 pairs of individuals (with dementia and their informal caregivers) who had participated in the intervention arm of a randomized controlled trial of a dementia care-management program. Activities were organized into types, using card-sorting methods, influenced by published theoretical constructs on self-efficacy and general strain theory. These activity types were mapped in the initial data set to construct variables for exploratory factor analysis. Principal components extraction with varimax and promax rotations was used to estimate the number of factors. Cronbach's alpha was calculated for the items in each factor to assess internal consistency reliability. The two-phase card-sorting technique yielded 45 activity types out of 450 unique activities. Exploratory factor analysis produced four care-management domains (factors): behavior management, clinical strategies and caregiver support, community agency, and safety. Internal consistency reliability (Cronbach's alpha) of items for each factor ranged from.63 for the factor "safety" to.89 for the factor "behavior management" (Factor 1). Applying a systematic method to a large set of care-management activities can identify a parsimonious number of higher order categories of variables and factors to guide the understanding of dementia care-management processes. Further application of this
Full Text Available PURPOSE: It is largely unknown how the medical treatment of patients diagnosed with dementia is followed up in primary care. Therefore, we studied patient medical records from two dementia clinics and from the referring primary care centres. METHODS: A retrospective study of 241 patients was conducted from April to October 2011 in north west Stockholm, Sweden. Over half (51.5% of the patients had Alzheimer's disease (AD, the remainder had mixed AD/vascular dementia (VaD. Eighty-four medical reports from primary care (35% of the study group were analysed at follow-up 18 months after diagnosis. RESULTS: All four dementia drugs available on the Swedish market (three cholinesterase inhibitors [donepezil, rivastigmine and galantamine] and memantine were prescribed at the two dementia clinics. The most commonly used dementia drug was galantamine. There were differences between the two dementia clinics in preference and combination of drugs and of treatment given to male and female patients. At follow-up, 84% were still on dementia medication. Drug use was followed up by the general practitioners (GPs in two-thirds of the cases. Eighteen per cent of the GPs' medical records made no reference to the patient's dementia or treatment even though dementia drugs were included in the list of medications prescribed. CONCLUSIONS: The results indicate that the Swedish guidelines for treatment of cognitive symptoms in AD are being followed in primary care. However, documentation of follow-up of drug treatment was sometimes insufficient, which calls for development of guidelines for complete medical records and medication lists.
Robinson, Jennifer; Longden, Jane; Murphy, Jayne
Walsall Healthcare NHS Trust was one of nine trusts selected to take part in the RCN development programme transforming dementia care in hospitals during 2013. The programme aimed to improve the experience of care for people with dementia and their carers in hospital. This article outlines a two-day training programme delivered to staff on two pilot wards with a larger cohort of adults with dementia than other wards in Manor Hospital. A range of staff were trained including nurses, clinical support workers and allied health professionals and also, in a bespoke format, housekeepers, porters and security staff. The programme has led to a noticeable cultural change and significantly improved care and management of patients with cognitive impairment and/or dementia on the two pilot wards. As a result, the training programme has been implemented more widely across the hospital.
This article first argues that quality of life is possible despite the onset of dementia in late life. It also demonstrates how core concepts of social work practice, such as family systems theory, the strengths perspective, and use of self, can be applied to practice with dementia-affected persons. In addition, it provides practical suggestions for supporting care partners in nurturing "we-ness", focusing on what remains rather than was is lost, and remaining authentic. When strengths-based social work practice is integrated into dementia care protocols, wellbeing can increase. As a result, the more than 40 million persons worldwide who are affected by dementia do not have to resign themselves to the despair, devastation and inevitable demise of quality of life that dominate perception of the illness.
Schüssler, Sandra; Dassen, Theo; Lohrmann, Christa
Chronic diseases, like dementia, can lead to care dependency and nursing care problems. This study aims to compare the degree of care dependency and the prevalence of nursing care problems (pressure ulcer, incontinence, malnutrition, falls, restraints) between residents with and without dementia and between the stages of dementia. A cross-sectional design was chosen and a total of 277 residents with and 249 residents without dementia from nine Austrian nursing homes were assessed by staff using standardized instruments. Significantly more residents with than without dementia are completely or to a great extent care dependent (54.5 vs. 16.9 %). The comparison of care dependency between the stages of dementia indicates a large difference between moderate and severe dementia (completely care dependent: 9.3 vs. 44.3 %). The comparison of the assessed nursing care problems between residents with and without dementia reveals a significant difference only with regard to incontinence (urinary: 84.2 vs. 53.2 %, fecal: 50.9 vs. 17.7 %, double: 49.1 vs. 14.9 %). Urinary incontinence is high even in early dementia at 64 %, reaching 94 % in severe dementia. Fecal- and double incontinence are comparatively much lower in early dementia (both types 12 %) and rise to more than 80 % (both types) in severe dementia. These results highlight areas in which dementia care needs further improvements. The authors suggest maximizing residents' independence to stabilize care dependency and improve incontinence care. Furthermore, longitudinal studies are recommended to deepen insight into the development of care dependency and nursing care problems in dementia residents.
MacNeil-Vroomen, J.L.; Bosmans, J.E.; van Hout, H.P.J.; de Rooij, S.E.
Background: Crisis is a term frequently used in dementia care lacking a standardized definition. This article systematically reviews existing definitions of crisis in dementia care literature to create a standardized definition that can be utilized for research, policy and clinical practice.
Vroomen, Janet MacNeil; Bosmans, Judith E.; van Hout, Hein P. J.; de Rooij, Sophia E.
Crisis is a term frequently used in dementia care lacking a standardized definition. This article systematically reviews existing definitions of crisis in dementia care literature to create a standardized definition that can be utilized for research, policy and clinical practice. We systematically
Full Text Available Risk Assessment and Management for Living Well with Dementia. Charlotte L. Clarke, Heather Wilkinson, John Keady and Catherine E. Gibb. Foreword by Murna Downs. Part of the Bradford Dementia Group Good Practice Guides series. London: Jessica Kingsley Publishers, 2011, pp. 128, ISBN: 978-1-84905-005-0Key Issues in Evolving Dementia Care. International Theory-based Policy and Practice. Edited by Anthea Innes, Fiona Kelly and Louise McCabe. Foreword by Professor June Andrews. London: Jessica Kingsley Publishers, 2012, pp. 264, ISBN: 978-1-84905-242-9
Kindell, Jacqueline; Burrow, Simon; Wilkinson, Ray; Keady, John David
Life story work has a relatively long tradition in the caring sciences and is recognised as an important component of dementia care and practice. However, to date, there has not been a review of accessible life story resources. The paper aims to discuss these issues. Following a systematic approach to identification and inclusion, 11 life story resources were reviewed to ascertain areas of commonality and divergence between the materials. The authors were able to group the analysis under eight areas and at the end of this process, it was uncertain if life story work is a formal staff intervention or an informal activity that people with dementia and their families could engage in. Resources also varied in terms of whether the life story information was organised in a chronological way, or with topics of interest/discussion or with a combination of both. Life story evaluation and its impact on the life of the person with dementia is in need of development. Across the resources the authors identified four reasons to do life story work which the authors have named as: emotional connections; interactional connections; building new connections and practical care connections. There was limited guidance aimed at helping people with dementia to develop and compile their own life story. This paper provides new insights into the usefulness, future directions and content of life story resources in dementia care. It will be of interest to those in health and social care as well as people living with dementia.
Full Text Available This paper examines the provision of integrated advanced dementia care within seven European countries and critically reviews the potential contribution of the Prudent Healthcare perspective as a starting point for reform. Progressive efforts to innovate, promote quality and integrate care are tempered with the reality of resource constraints. Some policy makers in Europe and North America have turned their attention to the principles of Prudent Healthcare as a potential mechanism to maximise benefits for patients within available resources. As dementia progresses, living well requires increasing levels of support and care, people living with advanced dementia have complex health and social care needs, are highly dependent on others but are not yet at the terminal end stage of the condition. People with advanced dementia can benefit from a dementia specific palliative approach to care ('Palliare', that helps them to live the best life possible for the months and often years they live with advanced dementia. It is also highly desirable to align policy innovations with integrated palliative care practice models and the education of the dementia workforce to accelerate informed improvements in advanced dementia care. There may be some coherence, at least superficially between Prudent Healthcare and integrated palliative care models such as Palliare. It is argued that for successful implementation, both require practitioners to be equipped with knowledge and skills and be empowered to deliver high quality care often within impoverished care environments. Adoption of the prudent perspective will however require development of a repertoire of approaches to hear the voice or proxy voice of people living with advanced dementia and to commit to the development and implementation of new evidence for advanced dementia practice. Evidence informing this policy debate draws upon contemporary literature and policy and the findings from research activities
Low, Lee-Fay; Fletcher, Jennifer
Worldwide trends of increasing dementia prevalence, have put economic and workforce pressures to shifting care for persons with dementia from residential care to home care. We reviewed the effects of the four dominant models of home care delivery on outcomes for community-dwelling persons with dementia. These models are: case management, integrated care, consumer directed care, and restorative care. This narrative review describes benefits and possible drawbacks for persons with dementia outcomes and elements that comprise successful programs. Case management for persons with dementia may increase use of community-based services and delay nursing home admission. Integrated care is associated with greater client satisfaction, increased use of community based services, and reduced hospital days however the clinical impacts on persons with dementia and their carers are not known. Consumer directed care increases satisfaction with care and service usage, but had little effect on clinical outcomes. Restorative models of home care have been shown to improve function and quality of life however these trials have excluded persons with dementia, with the exception of a pilot study. There has been a little research into models of home care for people with dementia, and no head-to-head comparison of the different models. Research to inform evidence-based policy and service delivery for people with dementia needs to evaluate both the impact of different models on outcomes, and investigate how to best deliver these models to maximize outcomes.
Poirier, Annie; Voyer, Philippe; Légaré, France; Morin, Michèle; Witteman, Holly O; Kröger, Edeltraut; Martineau, Bernard; Rodríguez, Charo; Giguere, Anik Mc
To improve the care of seniors living with dementia, current initiatives typically target better identification and treatment of the patient. Our recent survey, however, shows we should also focus more on the needs of the informal caregivers who care for this population in primary care settings. This three-round Delphi survey sought caregivers' views on the most frequent and difficult decisions that seniors with dementia, their informal caregivers, and health care providers face in primary care settings in the province of Quebec. Respondents consisted of 31 health care professionals, informal caregivers, managers, representatives of community-based organizations devoted to these seniors, and clinical researchers involved in the organization of care or services to seniors with dementia. When we asked respondents to rank 27 common but difficult decisions involving benefit/harm trade-offs, 83% ranked the decision to choose an option to reduce the burden of informal caregivers as one of the five most important decisions. Choosing a treatment to manage agitation, aggression or psychotic symptoms followed closely, with 79% of respondents selecting it as one of the five most important decisions. Our results point to the importance of attending to the needs of informal caregivers and improving the management of behavioural and psychological symptoms of dementia.
Travers, Catherine M; Beattie, Elizabeth; Martin-Khan, Melinda; Fielding, Elaine
Positive attitudes of healthcare staff towards people with dementia promote higher quality care, although little is known about important factors that underlie positive attitudes. Key aims of this project were to explore the relationships between staff attitudes towards dementia, self-confidence in caring for people with dementia, experience and dementia education and training. A brief online survey was developed and widely distributed to registered nurses and allied health professionals working in Queensland in 2012. Regression analyses were performed to identify important predictors of self-confidence in caring for people with dementia and positive attitudes towards people with dementia. Five hundred and twenty-four surveys were completed by respondents working in a range of care settings across Queensland. Respondents were predominantly female (94.1%), and most were registered nurses (60%), aged between 41 and 60 years (65.6%). Around 40% regularly worked with people with dementia and high levels of self-confidence in caring for this population and positive attitudes towards people with dementia were reported. The majority of respondents (67%) had participated in a dementia education/training activity in the past 12 months. More experience working with people with dementia predicted greater self-confidence while recent participation in a dementia education/training and higher self-confidence in caring for a person with dementia significantly predicted more positive attitudes towards people with dementia. These results confirm the importance of self-confidence and dementia education in fostering positive attitudes and care practices towards people with dementia. Our results also indicate that the demand for ongoing dementia education is high amongst health care workers and it is recommended that regular dementia education/ training be provided and promoted for all healthcare personnel who work with people with dementia.
E.E. Bron (Esther); M. Smits (Marion); J.C. van Swieten (John); W.J. Niessen (Wiro); S. Klein (Stefan)
textabstractSupport vector machine significance maps (SVM p-maps) previously showed clusters of significantly different voxels in dementiarelated brain regions. We propose a novel feature selection method for classification of dementia based on these p-maps. In our approach, the SVM p-maps are
Full Text Available This article gives an in-depth description of the service delivery model of Geriant, a Dutch organization providing community-based care services for people suffering from dementia. Core to its model is the provision of clinical case management, embedded in multidisciplinary dementia care teams. As Geriant's client group includes people from the first presumption of dementia until they can no longer live at home, its care model provides valuable lessons about how different mechanisms of integration are flexibly put to use if the complexity of clients” care needs increases. It showcases how the integration of services for a specific sub-population is combined with alignment of these services with generalist network partners. After a detailed description of the programme and its results, this article builds on the work of Walter Leutz for a conceptual discussion of Geriant's approach to care integration.
Nakanishi, Miharu; Nakashima, Taeko
The Ministry of Health, Labour, and Welfare of the Japanese national government announced a "Five-Year Plan for Promotion of Measures Against Dementia (Orange Plan)" in September 2012. This article described features of the Japanese dementia strategy in comparison with international dementia policies. An international comparative study was implemented on national dementia policies to seek suggestions for Japanese national strategy. The study consisted of a bibliographical survey, a field survey, and an online case vignette survey in several countries. The Japanese health- and social-care system had multiple access points in the dementia care pathway, as did Australia, France, South Korea, and the Netherlands. Contrary to Japan, a simplified access point was observed in Denmark, England, and Sweden. The Orange Plan aimed to establish specific health-care services, social-care services, and the coordination of agencies for persons with dementia. However, fragmentation remains in the dementia care pathway. The national government should examine fundamental revisions in health, social-care services, and advocacy in joint initiatives with Alzheimer's Association Japan to improve the national dementia strategy. Copyright © 2014 The Alzheimer's Association. Published by Elsevier Inc. All rights reserved.
Brooke, Joanne; Cronin, Camille; Stiell, Marlon; Ojo, Omorogieva
To understand the intersection of healthcare professionals' and care workers' culture and their provision of person-centred care for people with dementia. Due to the nature of global immigration and recruitment strategies, health care is provided by a culturally diverse workforce. Consequently, there is a need to understand healthcare professionals' and care workers' cultural values of illness, disease and dementia. Cultural values and beliefs regarding dementia and care of the older person differ, and currently, there is a lack of clarity regarding the intersection of culture in the provision of person-centred dementia care. A search of the following databases was completed: Medline, CINAHL, Psychology and Behavioural Sciences, PsycINFO and PubMed for papers published from 1st January 2006 to 31st July 2016. A total of seven qualitative studies met the inclusion and exclusion criteria, all explored the impact of healthcare professionals' and care workers' culture in relation to their provision of person-centred dementia care. A meta-synthesis of the data from these studies identified four themes: cultural perceptions of dementia, illness and older people; impact of cultural perceptions on service use; acculturation of the workforce; and cross-cultural communication. Limited evidence was found on the impact of healthcare professionals' and care workers' culture on their provision of person-centred dementia care. The intersection of culture and dementia included the understanding of dementia, care and family roles. Acculturation of migrant healthcare workers to the culture of the host country, workplace, and support with the communication was identified as necessary for the provision of person-centred dementia care. Open access education and training to support communication is required, alongside the development of robust interventions to support the process of acculturation of migrant healthcare professionals and care workers to provide culturally competent person
Downs, M; Capstick, A; Baldwin, P C; Surr, C; Bruce, E
There is now widespread concern about the inadequate care and support provided to people with dementia from diagnosis to death. It is acknowledged that while there is a range of effective ways to care for and support people with dementia and their families from diagnosis to death, these have yet to become integral to practice. In England, for example, the National Dementia Strategy seeks to transform the quality of dementia care. One of the key components to transforming the quality of care is to ensure we have an informed and effective workforce. We argue here that in order to transform the quality of care we need to distinguish between the aims of training and education. Whilst there is a place for skills-based workplace training, Higher Education in dementia studies has a key role to play in the provision of specialist knowledge and skills in dementia care emphasizing as it does the development of critical thinking, reflection and action. In this paper we describe dementia studies at Bradford University available at both undergraduate and postgraduate levels. We outline their aims and learning outcomes, curricula, approach to teaching, learning and assessment. We describe the nature of students who study with us, noting their fit with the Higher Education Funding Council in England's agenda for widening participation in higher education. Higher Education in dementia studies has a unique role to play in equipping practitioners and professionals with the information, skills and attitudes to realize the potential for quality of life for people with dementia and their families.
Kosteniuk, Julie G.; Morgan, Debra G.; O'Connell, Megan E.; Dal Bello-Haas, Vanina; Stewart, Norma J.
Home care staff who provide housekeeping and personal care to individuals with dementia generally have lower levels of dementia care training compared with other health care providers. The study's purposes were to determine whether the professional role of home care staff in a predominantly rural region was associated with preferences for delivery…
Xiao, Lily Dongxia; Habel, Lesley; De Bellis, Anita
The majority of Vietnamese Australians migrated to Australia as refugees to escape a war and this unique migration background may affect their ability to access and utilize healthcare services in Australia. Inability to utilize dementia services is associated with higher levels of caregiver burden, higher rates of morbidities and mortality and hospitalization. The aim of the study was to explore the perceived challenges of dementia care from Vietnamese family caregivers and Vietnamese care workers. Gadamer's philosophical hermeneutics was used to interpret and describe the experiences of the participants. Data were collected from in-depth interviews with six Vietnamese family caregivers and a focus group with Vietnamese care workers using purposive sampling. Participants were recruited from a Vietnamese community care organization in South Australia. Five themes were identified from the data analysis namely: (1) a need for culturally and linguistically appropriate dementia education programs; (2) a willingness and unwillingness to seek help; (3) poor knowledge of health care service availability related to dementia; (4) the effect of language barrier in accessing services; and (5) the main sources of services utilized. The study revealed that Vietnamese family caregivers and Vietnamese care workers held different views on the association of stigma with dementia. Findings also revealed factors that impacted accessing and utilizing dementia services. These findings facilitate a more comprehensive understanding of Vietnamese family caregivers' needs and have implications for developing individualized support for family caregivers and for consumer-directed dementia services in Australia.
Hadjri, Karim; Rooney, Cliona; Faith, Verity
This article reviews the current state of housing for people with dementia by exploring housing choices available to this group, and identifying potential issues with design of care homes. Older people who wish to age in place are faced with the challenge of adapting their domestic environment to ensure independence, accessibility, and social connectivity. This is even more challenging for people with dementia who continue to live at home, given the risks of self-harm and getting lost. More imaginative and inclusive forms of collective housing are needed. For people with dementia, a move to a new environment is often a stressful experience that causes shock, withdrawal, and anger. Hence, more research is needed to develop more fitting long-term housing options for people with dementia. This article presents a brief review on housing choices and housing design for people with dementia. Interviews with managers of 22 care homes were conducted to explore housing choices and design issues. Results show that the main housing choices available to people with dementia offer different levels of care. The choice of care homes relates to the atmosphere of a home as some occupants favor a homely or relaxing environment and others prefer dynamic settings. A combination of appropriate level of care, a good atmosphere, and design quality within the care home are elements that lead to a more enabling environment. Design of a successful caring environment also requires appropriate care and a positive therapeutic and domestic-looking environment. © The Author(s) 2015.
Brown, Anna; Kirichek, Oksana; Balkwill, Angela; Reeves, Gillian; Beral, Valerie; Sudlow, Cathie; Gallacher, John; Green, Jane
Electronic linkage of UK cohorts to routinely collected National Health Service (NHS) records provides virtually complete follow-up for cause-specific hospital admissions and deaths. The reliability of dementia diagnoses recorded in NHS hospital data is not well documented. For a sample of Million Women Study participants in England we compared dementia recorded in routinely collected NHS hospital data (Hospital Episode Statistics: HES) with dementia recorded in two separate sources of primary care information: a primary care database [Clinical Practice Research Datalink (CPRD), n = 340] and a survey of study participants' General Practitioners (GPs, n = 244). Dementia recorded in HES fully agreed both with CPRD and with GP survey data for 85% of women; it did not agree for 1 and 4%, respectively. Agreement was uncertain for the remaining 14 and 11%, respectively; and among those classified as having uncertain agreement in CPRD, non-specific terms compatible with dementia, such as 'memory loss', were recorded in the CPRD database for 79% of the women. Agreement was significantly better (p primary care (CPRD) than in hospital (HES) data. Age-specific rates for dementia based on the hospital admission data were lower than the rates based on the primary care data, but were similar if the delay in recording in HES was taken into account. Dementia recorded in routinely collected NHS hospital admission data for women in England agrees well with primary care records of dementia assessed separately from two different sources, and is sufficiently reliable for epidemiological research.
Zimmerman, Sheryl; Sloane, Philip D; Reed, David
Assisted living residences have become prominent sites of long-term residential care for older adults with dementia. Estimates derived from national data indicate that seven out of ten residents in these residences have some form of cognitive impairment, with 29 percent having mild impairment, 23 percent moderate impairment, and 19 percent severe impairment. More than one-third of residents display behavioral symptoms, and of these, 57 percent have a medication prescribed for their symptoms. Only a minority of cognitively impaired residents reside in a dementia special care unit, where admission and discharge policies are more supportive of their needs. Policy-relevant recommendations from our study include the need to examine the use of psychotropic medications and cultures related to prescribing, better train assisted living staff to handle medications and provide nonpharmacological treatments, use best practices in caring for people with dementia, and promote consumer education regarding policies and practices in assisted living.
Goh, Anita M Y; Loi, Samantha M; Westphal, Alissa; Lautenschlager, Nicola T
Touchscreen technology (TT) is a resource that can improve the quality of life of residents with dementia, and care staff, in residential aged care facilities (RACF) through a person-centered care approach. To enable the use of TTs to engage and benefit people with dementia in RACFs, education is needed to explore how these devices may be used, what facilitates use, and how to address barriers. We sought to provide education and explore RACF staff views and barriers on using TT to engage their residents with dementia. An educational session on using TT with residents with dementia was given to staff from three long-term RACFs in Melbourne, Australia. A cross-sectional convenience sample of 17 staff members (personal care attendants, registered nurses, enrolled nurses, allied health clinicians, and domestic staff) who attended were administered questionnaires pre- and post-sessions. As a result of the education seminar, they were significantly more confident in their ability to use TT devices with residents. TT, and education to staff about its use with residents with dementia, is a useful strategy to enhance RACF staff knowledge and confidence, thereby enhancing the use of technology in RACFs in order to improve care standards in people with dementia.
Hughes, Julian; Common, Jill
This article discusses issues that might count as 'ethical' in the care of people with dementia and some of the dilemmas that occur. Ethical theories, such as virtue ethics, deontology and consequentialism are discussed, and ethical approaches that can be useful are outlined. Thinking about matters case-by-case is another approach, one that forms the first component of the Nuffield Council's ethical framework for dementia care, which is described. Case examples are provided, raising issues of autonomy, diagnosis, restraint and withholding treatment. The notion of personhood and the need to understand the person with dementia as broadly as possible are emphasised. Recommendations for nursing practice are included.
Risco, Ester; Zabalegui, Adelaida; Miguel, Susana; Farré, Marta; Alvira, Carme; Cabrera, Esther
To describe the implementation of the Balance of Care model in decision-making regarding the best care for patients with dementia in Spain. The Balance of Care model was used, which consists of (1) describing the profile of the typical cases of people with dementia and their caregivers, (2) identifying the most suitable care setting for each of the cases (home-care or long-term care institution), (3) designing specific care plans for each case, and (4) evaluating the cost of the proposed care plans. A total of 1,641 people with dementia and their caregivers from eight European countries were used in the case design. The evaluation of cases was conducted by 20 experts in different medical fields of dementia. In Spain, the results indicated that initially the most suitable placement to take care of people with dementia was the home, however in cases with higher dependency in activities of daily living, the long-term care setting was the best option. For the best care plan, the following resources were chosen: professional help to perform basic activities; day center; multidisciplinary home care team; financial support; community nurse; and social worker. The Balance of Care method allows us to assess the most appropriate place of care for people with dementia systematically, objectively and with a multidisciplinary team. Other cost-effective interventions should be integrated in patients with dementia care in order to improve home care. Copyright © 2016 SESPAS. Publicado por Elsevier España, S.L.U. All rights reserved.
Tang, Eugene Yee Hing; Birdi, Ratika; Robinson, Louise
ABSTRACTConsiderable international governmental support is focused on the timely diagnosis of dementia and post-diagnostic care of people with dementia. Identifying those at high risk of dementia is one approach to timely diagnosis. General practitioners (GPs) are well-placed clinicians in the community to provide both pre- and post-diagnostic dementia care. However, GPs have in the past consistently demonstrated low confidence in both diagnosing dementia and providing care for these complex patients particularly for patients in the post-diagnostic phase. It is currently unclear how future GPs view dementia care. We aimed to evaluate the current attitudes and experiences of future GPs in dementia care and their views on targeting high risk groups. All (n = 513) GP trainees were approached by email to participate in a cross-sectional web and paper-based survey in the North of England. A further reminder was sent out two months after the initial invitation. We received 153 responses (29.8% response rate, 66.7% female, average age 31 (range 25-55 years old). The main difficulties encountered included coordinating supporting services for carers and the person with dementia and responding to co-existing behavioral and psychiatric symptoms. Further education in dementia management was considered to be important by respondents. GP trainees were generally very positive about their future role in caring for people with dementia, particularly in the area of earlier diagnosis via identification of high-risk individuals. Future GPs in one area of England are very positive about their key role in dementia care. In order to facilitate the delivery of high quality, community-based care, work is required to establish core post-diagnostic dementia support services. Further research is needed to identify effective systems to enable accurate assessment and to ensure earlier diagnosis in high-risk groups.
Surr, C A; Smith, S J; Crossland, J; Robins, J
People with dementia occupy up to one quarter of acute hospital beds. However, the quality of care delivered to this patient group is of national concern. Staff working in acute hospitals report lack of knowledge, skills and confidence in caring for people with dementia. There is limited evidence about the most effective approaches to supporting acute hospital staff to deliver more person-centred care. This study aimed to evaluate the efficacy of a specialist training programme for acute hospital staff regarding improving attitudes, satisfaction and feelings of caring efficacy, in provision of care to people with dementia. A repeated measures design, with measures completed immediately prior to commencing training (T1), after completion of Foundation level training (T2: 4-6 weeks post-baseline), and following Intermediate level training (T3: 3-4 months post-baseline). One NHS Trust in the North of England, UK. 40 acute hospital staff working in clinical roles, the majority of whom (90%) were nurses. All participants received the 3.5 day Person-centred Care Training for Acute Hospitals (PCTAH) programme, comprised of two levels, Foundation (0.5 day) and Intermediate (3 days), delivered over a 3-4 months period. Staff demographics and previous exposure to dementia training were collected via a questionnaire. Staff attitudes were measured using the Approaches to Dementia Questionnaire (ADQ), satisfaction in caring for people with dementia was captured using the Staff Experiences of Working with Demented Residents questionnaire (SEWDR) and perceived caring efficacy was measured using the Caring Efficacy Scale (CES). The training programme was effective in producing a significant positive change on all three outcome measures following intermediate training compared to baseline. A significant positive effect was found on the ADQ between baseline and after completion of Foundation level training, but not for either of the other measures. Training acute hospital staff in
Sandberg, Linda; Borell, Lena; Edvardsson, David; Rosenberg, Lena; Boström, Anne-Marie
An increasing number of older persons worldwide live at home with various functional limitations such as dementia. So, home care staff meet older persons with extensive, complex needs. The staff's well-being is crucial because it can affect the quality of their work, although literature on job strain among home care staff is limited. To describe perceived job strain among home care staff and to examine correlations between job strain, personal factors, and organizational factors. The study applied a cross-sectional survey design. Participants were dementia care specialists who work in home care (n=34) and other home care staff who are not specialized in dementia care (n=35). The Strain in Dementia Care Scale (SDCS) and Creative Climate Questionnaire instruments and demographic variables were used. Descriptive and inferential statistics (including regression modeling) were applied. The regional ethical review board approved the study. Home care staff perceived job strain - particularly because they could not provide what they perceived to be necessary care. Dementia care specialists ranked job strain higher (m=5.71) than other staff members (m=4.71; p =0.04). Job strain (for total score and for all five SDCS factors) correlated with being a dementia care specialist. Correlations also occurred between job strain for SDCS factor 2 (difficulties understanding and interpreting) and not having Swedish as first language and SDCS factor 5 (lack of recognition) and stagnated organizational climate. The study indicates that home care staff and particularly dementia care specialists perceived high job strain. Future studies are needed to confirm or reject findings from this study.
Fereshtehnejad, Seyed-Mohammad; Johannsen, Peter; Waldemar, Gunhild
patients referred to specialist units in Sweden and Denmark. METHODS: Data from the Swedish Dementia Registry (SveDem) and the Danish Dementia Registry were merged. Newly diagnosed dementia cases referred to memory clinics during 2007-2012 were included (19,629 Swedish and 6,576 Danish patients). RESULTS......BACKGROUND: Two dementia quality registries have been developed in Denmark and Sweden with the aim to assess quality of dementia care based on adherence to national guidelines. OBJECTIVE: To compare patient characteristics, diagnostics, treatment, and quality indicators of dementia care among...
Neitch, Shirley M; Meadows, Charles; Patton-Tackett, Eva; Yingling, Kevin W
Every day, patients with dementia, their families, and their physicians face the enormous challenges of this pervasive life-changing condition. Seeking help, often grasping at straws, victims, and their care providers are confronted with misinformation and myths when they search the internet or other sources. When Persons with Dementia (PWD) and their caregivers believe and/or act on false information, proper treatment may be delayed, and ultimately damage can be done. In this paper, we review commonly misunderstood issues encountered in caring for PWD. Our goal is to equip Primary Care Practitioners (PCPs) with accurate information to share with patients and families, to improve the outcomes of PWD to the greatest extent possible. While there are innumerable myths about dementia and its causes and treatments, we are going to focus on the most common false claims or misunderstandings which we hear in our Internal Medicine practice at Marshall Health. We offer suggestions for busy practitioners approaching some of the more common issues with patients and families in a clinic setting.
Full Text Available Malaz A Boustani,1–3 Amie Frame,1,2 Stephanie Munger,1,2 Patrick Healey,4 Jessie Westlund,5 Martin Farlow,6,7 Ann Hake,8 Mary Guerriero Austrom,6,9 Polly Shepard,10 Corby Bubp,10 Jose Azar,3 Arif Nazir,3 Nadia Adams,11 Noll L Campbell,1,2,12,13 Azita Chehresa,5 Paul Dexter2,31Indiana University Center for Aging Research, 2Regenstrief Institute, Inc, 3Department of Medicine, Indiana University School of Medicine (IUSM, 4St Vincent Health Network, 5Community Health Network, 6Indiana Alzheimer Disease Center, IUSM, 7Department of Neurology, IUSM, 8Eli Lilly and Company, 9Department of Psychiatry, IUSM, 10The Memory Clinic of Indianapolis, 11Indiana University Health, Indianapolis, IN, USA; 12Department of Pharmacy Practice, Purdue University College of Pharmacy, West Lafayette, IN, USA; 13Department of Pharmacy, Wishard Health Services, Indianapolis, IN, USABackground: The US Institute of Medicine has recommended an integrated, locally sensitive collaboration among the various members of the community, health care systems, and research organizations to improve dementia care and dementia research.Methods: Using complex adaptive system theory and reflective adaptive process, we developed a professional network called the “Indianapolis Discovery Network for Dementia” (IDND. The IDND facilitates effective and sustainable interactions among a local and diverse group of dementia researchers, clinical providers, and community advocates interested in improving care for dementia patients in Indianapolis, Indiana.Results: The IDND was established in February 2006 and now includes more than 250 members from more than 30 local (central Indiana organizations representing 20 disciplines. The network uses two types of communication to connect its members. The first is a 2-hour face-to-face bimonthly meeting open to all members. The second is a web-based resource center (http://www.indydiscoverynetwork.org. To date, the network has: (1 accomplished the
De Vriendt, Patricia; Cornelis, Elise; Desmet, Valerie; Vanbosseghem, Ruben; Van de Velde, Dominique
Professionals in dementia-care ought to be able to work within a Bio-Psycho-Social model. The objectives were to examine whether dementia-care is delivered in a Bio-Psycho-Social way, to explore the influencing factors and to evaluate the factorial validity of the 'Bio-Psycho-Social-Dementia-Care scale'. 413 healthcare-professionals completed the 'Bio-Psycho-Social-Dementia-Care scale'. Differences between groups (settings, professions, years of experience) were calculated with a student's t-test and one-way ANOVA. The facture structure of the scale was evaluated using a confirmatory factor analysis. The factor-analysis confirmed the 5 subscale-structure (1) networking, (2) using the client's expertise, (3) assessment and reporting, (4) professional knowledge and skills and (5) using the environment. (No significant differences were found between professionals in residential care and community care for the subscales 'networking' and 'using the client's expertise'. Professionals in residential care score higher than community care for 'assessment and reporting' (pPsycho-Social-Dementia-scale is a valid tool and offers opportunities not only to rate, but also to improve Bio-Psycho-Social functioning in dementia-care: increase interdisciplinary collaboration, facilitate assessment, combine the strengths of the different professions and install a heterogeneous team with regard to age and experience.
Strydom, André; Al-Janabi, Tamara; Houston, Marie; Ridley, James
People with learning disabilities, particularly Down's syndrome, are at increased risk of dementia. At present, services and care tailored to people with both dementia and a learning disability are unsatisfactory. This article reviews the literature specific to dementia in people with learning disabilities, including: comprehensive screening, diagnosis, management, environmental considerations, end of life care and training issues for nursing staff. Recommendations for best practice and service improvement are made to improve the quality of life for individuals with dementia and learning disabilities, pre and post-diagnosis.
Shah, Sunil M; Carey, Iain M; Harris, Tess; DeWilde, Stephen; Cook, Derek G
Influenza vaccination is recommended for older people irrespective of cognitive decline or residential setting. To examine the effect of dementia diagnosis on flu vaccination uptake in community and care home residents in England and Wales. Retrospective analysis of a primary care database with 378,462 community and 9,106 care (nursing and residential) home residents aged 65-104 in 2008-09. Predictors of vaccine uptake were examined adjusted for age, sex, area deprivation and major chronic diseases. Age and sex standardised uptake of influenza vaccine was 74.7% (95% CI: 73.7-75.8%) in community patients without dementia, 71.4% (69.3-73.5%) in community patients with dementia, 80.5% (78.9-82.2%) in care home patients without dementia and 83.3% (81.4-85.3%) in care home patients with dementia. In a fully adjusted model, compared with community patients without dementia, patients with dementia in the community were less likely to receive vaccination (RR: 0.96, 95% CI: 0.94-0.97) while care home patients with (RR: 1.06, 1.03-1.09) and without (RR: 1.03, 1.01-1.05) dementia were more likely to receive vaccination. Area deprivation and chronic diseases were, respectively, negative and positive predictors of uptake. Lower influenza vaccine uptake among community patients with dementia, compared with care home residents, suggests organisational barriers to community uptake but high uptake among patients with dementia in care homes does not suggest concern over informed consent acts as a barrier. Primary care for community patients with dementia needs to ensure that they receive all appropriate preventive interventions.
Hall, Jodi; Mitchell, Gary; Webber, Catherine; Johnson, Karen
Fourteen people attending an adult day programme were recruited to a structured horticultural therapy programme which took place over 10 weeks. The effects were assessed using Dementia Care Mapping and questionnaires completed by family carers. High levels of wellbeing were observed while the participants were engaged in horticultural therapy, and these were sustained once the programme was completed. This study adds to the growing evidence on the benefits of horticultural therapy for people with dementia who have enjoyed gardening in the past. © The Author(s) 2016.
Full Text Available Ulrika Söderhamn1, Bjørg Landmark2,3, Live Aasgaard2, Hilde Eide3, Olle Söderhamn11Center for Caring Research – Southern Norway, Faculty of Health and Sport Sciences, University of Agder, Grimstad, Norway; 2Institute of Research and Development for Nursing and Care Services, Municipality of Drammen, Drammen, Norway; 3Faculty of Health Sciences, Buskerud University College, Drammen, NorwayIntroduction: The number of people suffering from dementia will increase dramatically in the future, and this will be a great challenge and concern for health care services. It is assumed that volunteers will strengthen community health care services more in the future than they do today.Aim: The aim of this study was to elucidate lived experiences of working as a volunteer in an activity center with adapted activities for home-dwelling people with early stage dementia.Methods: Qualitative interviews were implemented in a group of nine female volunteers from an activity center in southern Norway. The interviews were recorded, transcribed verbatim, and analyzed with a descriptive phenomenological method. Results: Volunteering in an activity center for home-dwelling people with early stage dementia was reported to provide experiences of being useful and feeling satisfied with performing a good job. It was an advantage for the volunteers to have had experiences from life in general, but also as a health professional or as being the next of kin of a dementia sufferer. It was important for the volunteers to focus on the dementia sufferer and show caring behavior, and interaction with and the appreciation of the health care professionals were also important. The volunteers were motivated by being able to have influence and participate in the planning of the work, to be a part of the social setting, and to learn. However, for some volunteers it was difficult to adjust to an appropriate role.Conclusion: In order to promote volunteering in a caring context, mutual
Pavlicevic, Mercédès; Tsiris, Giorgos; Wood, Stuart; Powell, Harriet; Graham, Janet; Sanderson, Richard; Millman, Rachel; Gibson, Jane
Increased interest in, and demand for, music therapy provision for persons with dementia prompted this study's exploration of music therapists' strategies for creating musical communities in dementia care settings, considering the needs and resources of people affected by dementia. Focus group discussions and detailed iterative study of improvisational music therapy work by six experienced practitioners clarify the contextual immediacy and socio-musical complexities of music therapy in dementia care homes. Music therapy's 'ripple effect', with resonances from micro (person-to-person musicking), to meso (musicking beyond 'session time') and macro level (within the care home and beyond), implies that all who are part of the dementia care ecology need opportunities for flourishing, shared participation, and for expanded self-identities; beyond 'staff', 'residents', or 'being in distress'. On such basis, managers and funders might consider an extended brief for music therapists' roles, to include generating and maintaining musical wellbeing throughout residential care settings. © The Author(s) 2013.
Innes, Anthea; Kelly, Fiona; Dincarslan, Ozlem
To report on the views of people with dementia who live in care homes and their family carers on aspects of design that are important to them, and discuss these in relation to developing physical care environments that respond to the wishes of people with dementia and their family carers. Six focus groups were held: two in Northern Ireland and four in Scotland. A total of 40 people participated in the focus groups. Twenty nine people were with dementia (24 female and five male), and 11 were family carers (10 female and one male). Carers discussed the features of a building they took into account when selecting a care home, and discussed this in relation to 'bricks and mortar versus people'. Key themes reported by people with dementia and their family carers included how the space in the environment is used, for example, what happens in the building and the presence or absence of certain design features. Outside space and wayfinding aids were identified as positive features of the home, along with a general lack of concern about ensuite provision. The results demonstrate the complexity of building design as it must provide living space acceptable to people with dementia living there and family members who visit, as well as provide a workable environment for staff. The findings highlight areas that should be considered by care home teams involved in the build of a new home or the redevelopment of an existing care home.
Chodosh, Joshua; Pearson, Marjorie L; Connor, Karen I; Vassar, Stefanie D; Kaisey, Marwa; Lee, Martin L; Vickrey, Barbara G
To analyze whether types of providers and frequency of encounters are associated with higher quality of care within a coordinated dementia care management (CM) program for patients and caregivers. Secondary analysis of intervention-arm data from a dementia CM cluster-randomized trial, where intervention participants interacted with healthcare organization care managers (HOCMs), community agency care managers (CACMs), and/ or healthcare organization primary care providers (HOPCPs) over 18 months. Encounters of 238 patient/caregivers (dyads) with HOCMs, CACMs, and HOPCPs were abstracted from care management electronic records. The quality domains of assessment, treatment, education/support, and safety were measured from medical record abstractions and caregiver surveys. Mean percentages of met quality indicators associated with exposures to each provider type and frequency were analyzed using multivariable regression, adjusting for participant characteristics and baseline quality. As anticipated, for all 4 domains, the mean percentage of met dementia quality indicators was 15.5 to 47.2 percentage points higher for dyads with HOCM--only exposure than for dyads with none (all P < .008); not anticipated were higher mean percentages with increasing combinations of provider-type exposure-up to 73.7 percentage points higher for safety (95% confidence interval 65.2%-82.1%) with exposure to all 3 provider types compared with no exposure. While greater frequency of HOCM-dyad encounters was associated with higher quality (P < .04), this was not so for other provider types. HOCMs' interactions with dyads was essential for dementia care quality improvement. Additional coordinated interactions with primary care and community agency staff yielded even higher quality.
Vernooy-Dassen, M.J.F.J.; Faber, M.J.; Olde Rikkert, M.G.M.; Koopmans, R.T.C.M.; Achterberg, T. van; Braat, D.D.M.; Raas, G.P.; Wollersheim, H.C.H.
OBJECTIVES: A labour shortage in the dementia care sector is to be expected in the near future in the Netherlands and in many other European states. The objective of this study is to analyse why people quit or avoid jobs in dementia care. METHOD: An integrative analysis was used to study reports,
Martínez-Lage, Pablo; Martín-Carrasco, Manuel; Arrieta, Enrique; Rodrigo, Jesús; Formiga, Francesc
In the current context of increased life expectancy and progressive aging of the population a very significant increase in the number of people with cognitive impairment and dementia is expected. Consequently, Spain will face an enormous social and health problem in the next decades. The Mapa de la enfermedad de Alzheimer y otras demencias en España project aims to analyse plans, prevention and early diagnosis activities, process of care and resources available across the 17 Spanish regions for the management of cognitive impairment and dementia in order to identify improvement areas, as well as to provide a list of recommendations. The working group consisted of an Advisory Committee of 5 national experts and a Committee of Experts from each region made up of professionals in the field of Neurology, Geriatrics, Psychiatry, and Primary Care, as well as representatives of Family Associations of People with Alzheimer's and other dementias. The Expert Committee of each region held meetings in which the current situation of care was reviewed. Plans available in Spain for dementia management are mostly obsolete or have not been implemented. Prevention and early detection activities are generally not carried out. There is great variability of care process that patients must follow for the diagnosis, treatment, and follow-up of the disease, and not all diagnostic test are available in different regions. In general, resources are considered scarce and unknown. The Mapa de la enfermedad de Alzheimer y otras demencias en España study has been able to detect the main points that require changing n the management, organisation, and coordination of resources, such as information and training of the personnel involved. Furthermore, the study has revealed that, in Spain, the necessary conditions are in place in Spain, such as the availability and capacity of professionals involved, as well as there being the potential diagnostic and health care resources to address this room
... on Vital and Health Statistics Annual Reports Health Survey Research Methods Conference Reports from the National Medical Care Utilization ... dementia special care units, or in a more traditional setting where these residents are integrated with residents ...
Berdai Chaouni, Saloua; De Donder, Liesbeth
The number of older Moroccan migrants reaching the age of high risk for dementia is increasing in Belgium. Yet no study has been performed to explore how Moroccan families facing dementia experience and manage the condition. The study employed a qualitative design using semi-structured interviews with 12 informal and 13 formal caregivers to answer this research question. Findings indicate that the experience of dementia includes several invisible realities that challenge the informal and formal caregivers: (1) the invisibility of dementia as a condition; (2) the invisible subtleties of the informal care execution; (3) the invisibility and inaccessibility of care services as explanation for these family's non-use of available services; and (4) the overlooking of culture, migration and religion as invisible influencers of the overall dementia experience. A better understanding of these hidden realities of migrant older people with dementia and their caregivers could lead to interventions to provide effective and tailored person-centred care that is sensitive to the individual's life experiences, culture and religious background.
Godard-Sebillotte, Claire; Vedel, Isabelle; Bergman, Howard
Morton-Chang et al. highlighted in their article the key strategic pillars of a community-based dementia care strategy: put "people first," support informal caregiving and enable "ground up" innovation and change. In our commentary, we draw upon our experience as authors of the Quebec Alzheimer Plan and evaluators of its implementation by the Quebec Ministry of Health and Social Services (MSSS). To us, a sustainable dementia care strategy entails a patient-centred approach, grounded in primary care, caring for persons with dementia at every stage of the disease. Implementation of such a strategy requires an ongoing effort to allow innovation adoption by clinicians and organizations.
Roberts, Gail; Morley, Catherine; Walters, Wendy; Malta, Sue; Doyle, Colleen
Person-centered models of dementia care commonly merge aspects of existing models with additional influences from published and unpublished evidence and existing government policy. This study reports on the development and evaluation of one such composite model of person-centered dementia care, the ABLE model. The model was based on building the capacity and ability of residents living with dementia, using environmental changes, staff education and organizational and community engagement. Montessori principles were also used. The evaluation of the model employed mixed methods. Significant behavior changes were evident among residents of the dementia care Unit after the model was introduced, as were reductions in anti-psychotic and sedative medication. Staff reported increased knowledge about meeting the needs of people with dementia, and experienced organizational culture change that supported the ABLE model of care. Families were very satisfied with the changes. Copyright © 2015 Elsevier Inc. All rights reserved.
Baldwin, Clive; Greason, Michelle
In recent years there has been an increasing interest in the concept of citizenship as a lens through which to understand dementia practice. This move from an individualist, personhood-based approach towards an understanding of people with dementia as a group facing social and structural discrimination parallels, in some ways, that previously seen in the realms of disability and mental health which have sought to politicize those experiences. In so doing, the debate has sought to reconfigure power relations, insisting that members of such discriminated groups are people with power entitled to the same from life as everyone else. Much of the discussion to date has, understandably, focused on the larger issues of social inclusion, rights and responsibilities - reflecting the traditional concern of citizenship of individuals' relationship to the state or the society in which they live. More recently, there has been a move to conceptualising citizenship as a practice - something that is realised through action and in relationship - rather than a status bestowed. In this paper, we seek to contribute to the discussion by introducing the concepts of midi- and micro-citizenship, taken from organisation studies, as a further means by which to link the personal and the political, and as grounds to build citizenship-alliances between people with dementia living in long-term care (LTC) facilities and front-line dementia care staff. We will then seek to illustrate the usefulness of these concepts in understanding citizenship in practice in LTC facilities through analysis of data drawn from focus groups involving LTC staff, and interviews with family carers whose relatives live in LTC facilities. In conclusion, we will explore some of the possibilities that such an approach holds for dementia care practice. © The Author(s) 2016.
Cartwright, Jade; Franklin, Diane; Forman, Dawn; Freegard, Heather
This study aimed to develop, implement and evaluate an online interprofessional education (IPE) dementia case study for health science students. The IPE initiative aimed to develop collaborative interprofessional capabilities and client-centred mindsets that underpin high-quality dementia care. A mixed methods research design was used to assess students' values, attitudes and learning outcomes using an interprofessional socialization and valuing scale (ISVS) completed pre and post the online case study and via thematic analysis of free text responses. Students' ISVS scores improved significantly following online participation, and the qualitative results support a shift towards interprofessional collaboration and client-centred care. This online IPE case study was successful in developing the collaborative mindsets and interprofessional capabilities required by a future workforce to meet the complex, client-centred needs of people living with dementia. © 2013 ACOTA.
Strech, Daniel; Mertz, Marcel; Knüppel, Hannes; Neitzke, Gerald; Schmidhuber, Martina
Integrating ethical issues in dementia-specific training material, clinical guidelines and national strategy plans requires an unbiased awareness of all the relevant ethical issues. To determine systematically and transparently the full spectrum of ethical issues in clinical dementia care. We conducted a systematic review in Medline (restricted to English and German literature published between 2000 and 2011) and Google books (with no restrictions). We applied qualitative text analysis and normative analysis to categorise the spectrum of ethical issues in clinical dementia care. The literature review retrieved 92 references that together mentioned a spectrum of 56 ethical issues in clinical dementia care. The spectrum was structured into seven major categories that consist of first- and second-order categories for ethical issues. The systematically derived spectrum of ethical issues in clinical dementia care presented in this paper can be used as training material for healthcare professionals, students and the public for raising awareness and understanding of the complexity of ethical issues in dementia care. It can also be used to identify ethical issues that should be addressed in dementia-specific training programmes, national strategy plans and clinical practice guidelines. Further research should evaluate whether this new genre of systematic reviews can be applied to the identification of ethical issues in other cognitive and somatic diseases. Also, the practical challenges in addressing ethical issues in training material, guidelines and policies need to be evaluated.
Bolmsjö, Ingrid Agren; Edberg, Anna-Karin; Sandman, Lars
In this article, a teleological model for analysis of everyday ethical situations in dementia care is used to analyse and clarify perennial ethical problems in nursing home care for persons with dementia. This is done with the aim of describing how such a model could be useful in a concrete care context. The model was developed by Sandman and is based on four aspects: the goal; ethical side-constraints to what can be done to realize such a goal; structural constraints; and nurses' ethical competency. The model contains the following main steps: identifying and describing the normative situation; identifying and describing the different possible alternatives; assessing and evaluating the different alternatives; and deciding on, implementing and evaluating the chosen alternative. Three ethically difficult situations from dementia care were used for the application of the model. The model proved useful for the analysis of nurses' everyday ethical dilemmas and will be further explored to evaluate how well it can serve as a tool to identify and handle problems that arise in nursing care.
Smit, Dieneke; de Lange, Jacomine; Willemse, Bernadette; Pot, Anne Margriet
Despite the finding that involvement in activities is one of the most important needs of residents with dementia living in care homes, care facilities struggle to fulfill this need. Over the years, various factors are suggested which may contribute to or disable activity provision in dementia care homes. These include limited financial resources, task oriented staff and disease-related characteristics of residents. This study aims to further clarify which of these factors predict higher activity involvement. Data were derived from the second measurement (2011) of the Living Arrangements for people with Dementia study. One thousand two hundred eighteen people residing in 139 dementia care homes were involved. Forty predictors of higher involvement were studied. Multilevel backward regression analyses were performed. The most important predictors of higher involvement were: absence of agitation, less ADL dependency, and a higher cognitive status of the residents, higher staff educational level, lower experienced job demands by care staff and a smaller number of residents living in the dementia care wards of a facility. More social supervisor support as perceived by staff was found to predict less activity involvement. To increase the activity involvement of care home residents with dementia it seems vital to: 1) reduce staff's experienced job demands; 2) elevate their overall educational level; 3) train staff to provide suitable activities, taking account of the behavior and preserved capabilities of residents; and 4) foster transition towards small-scale care. In order to achieve these aims, care organizations might need to evaluate the use of their financial means.
Schepers, Astrid Kristine; Orrell, Martin; Shanahan, Niamh; Spector, Aimee
Sense of competence in dementia care staff (SCIDS) may be associated with more positive attitudes to dementia among care staff and better outcomes for those being cared for. There is a need for a reliable and valid measure of sense of competence specific to dementia care staff. This study describes the development and evaluation of a measure to assess "sense of competence" in dementia care staff and reports on its psychometric properties. The systematic measure development process involved care staff and experts. For item selection and assessment of psychometric properties, a pilot study (N = 37) and a large-scale study (N = 211) with a test-retest reliability (N = 58) sub-study were undertaken. The final measure consists of 17 items across four subscales with acceptable to good internal consistency and moderate to substantial test-retest reliability. As predicted, the measure was positively associated with work experience, job satisfaction, and person-centered approaches to dementia care, giving a first indication for its validity. The SCIDS scale provides a useful and user-friendly means of measuring sense of competence in care staff. It has been developed using a robust process and has adequate psychometric properties. Further exploration of the construct and the scale's validity is warranted. It may be useful to assess the impact of training and perceived abilities and skills in dementia care.
Full Text Available Introduction: Today there are approximately one million people with dementia in Germany. If current demographic trends continue, this number is likely to rise substantially in the coming years. In the older population, dementia is the most frequent reason for long-term care. Because most forms of dementia cannot be cured, the aim of treatment is to delay disease progression and to maintain functioning and quality of life. Research questions: What is the evidence on different approaches to the long-term usual care of patients with dementia in terms of common endpoints such as quality of life, and social behaviour? How is the cost-effectiveness of these concepts to be evaluated? Which ethical, social, or legal issues are discussed in this context? Methods: Based on a systematic literature review, we include randomized, controlled studies that had at least 30 participants and investigated one or more of the following approaches of dementia care: validation therapy/emotion-oriented usual care, ergotherapy, sensory stimulation, relaxation techniques, reality orientation therapy, and reminiscence therapy. Studies had to be published after 1996 (after 1990 for the economic part in English or German. Results: A total of 20 studies meet the inclusion criteria. Of these, three focus on validation therapy/emotion-oriented usual care, five on ergotherapy, seven on different kinds of sensory stimulation, two on reality orientation, two on reminiscence therapy, and one on a type of relaxation technique. There are no significant differences between the intervention and control groups in two of the three studies on validation therapy or emotion-oriented usual care, in two of the five studies on ergotherapy, in three of the seven studies on sensory stimulation, in both of the two studies on reminiscence therapy, and in the one study on relaxation. In the remaining ten studies, seven report some positive results in favour of the respective interventions, and
D. Smit; Dr. J. de Lange; B. Willemse; A.M. Pot
Despite the finding that involvement in activities is one of the most important needs of residents with dementia living in care homes, care facilities struggle to fulfill this need. Over the years, various factors are suggested which may contribute to or disable activity provision in dementia care
Gould, Elizabeth; Reed, Peter
In the U.S.A., direct care workers and licensed practical nurses are the professionals who provide the most hands-on care to people with dementia in nursing homes and residential care facilities--yet they do not receive adequate training in dementia care. Dementia care training needs to be universal with all disciplines at all levels of care. Even though there is variability on recommended hours and content, most studies emphasize the importance of dementia care training as a distinct component of required training for any professional or paraprofessional working in long-term care. In 2005, the Alzheimer's Association launched its Quality Care Campaign to improve dementia care through state and federal advocacy; consumer education and empowerment; and staff training. This paper describes the effectiveness of Alzheimer's Association training as measured by knowledge gained and providers' intention to change their behavior immediately after attending the training.Overall, findings indicated that the participants responded positively to evidence-based training in dementia care that emphasized the importance of (i) leadership, (ii) team communication and collaboration, (iii) support and empowerment of direct care staff, (iv) awareness and practice of specific dementia care issues, (v) resident and family involvement in care, and (vi) professional self-care.
Luth, Elizabeth A; Prigerson, Holly G
Non-Hispanic black and dementia patients receive more invasive and futile treatment at end of life (EOL) relative to others. Little is known about the relationship between race/ethnicity, dementia, and EOL care quality. Identify the relationship between race/ethnicity, dementia, and proxy reporters' evaluation of EOL care quality in older adults. Latent class analysis (LCA) of national survey data. 1588 deceased Medicare beneficiaries age 65 and older from the National Health and Aging Trends Study (2011-2016). LCA identified three types of quality EOL care using nine measures of symptom management, quality of healthcare encounters, and dignified treatment. Race and dementia were primary predictors of EOL care quality type. Adjusted models controlled for decedent education, sex, marital status, age, number of illnesses, number of hospitalizations, self-rated health, place of death, hospice involvement, and proxy relationship to decedent and familiarity with care. Over 20% of proxies report that dying individuals experienced suboptimal EOL care quality, characterized by pain, sadness, poor communication, and inattention to personal care needs. In adjusted analyses, proxies for non-Hispanic black decedents were less likely to provide negative care assessments than proxies for non-Hispanic white decedents (adjusted odds ratio [AOR]: 0.58; 95% confidence interval [CI]: 0.40-0.86). Proxies for decedents with dementia were less likely to provide negative assessments than proxies for decedents without dementia (AOR: 0.70; 95% CI: 0.51-0.97). Efforts to improve EOL care quality are needed. More positive EOL care quality assessments for non-Hispanic Black and dementia decedents appear counterintuitive given research demonstrating that these groups of individuals are likely to have received suboptimal EOL care. Because caregiver expectations for care may differ by decedent race and dementia status, research is needed to explore the role of caregiver expectations for EOL care
Kennerley, Dorothy; Bolas, Robert; Bourne, Jennifer; Branson, Kathy; Cavenagh, Penny; Chappell, Pam; Collins, Gwen; Coveney, Nick; Day, Nicole; Hardman, Mary; Hayter, Sue; Fenner, Pam; Jones, Jennifer; Jordan, Siobhan; Noble, Brendon; Osbourne, Sarah; Smith, Carol; Wigens, Lynn
Health leaders from across Suffolk joined together in a collaborative action-learning project to identify ways of offering more productive and personalised care for patients with dementia and their carers. The project revealed a range of factors necessary for success, notably professional collaboration and effective facilitation. The outcome was a range of evidenced-based recommendations to improve care and efficiency, as well as ensuring that the quality, innovation, productivity and prevention (QIPP) agenda was met. The lessons can be applied not just in dementia care, but to other long-term and complex care situations.
Cooke, Heather A
This article aims to examine RCAs' own experiences of personhood in dementia care settings. Conceptually, person-centred care entails fostering the personhood of residents and the residential care aides (RCAs) who provide much of their hands-on care. To date, however, staff personhood has been overlooked in the empirical literature. The study was part of a larger focused ethnographic project exploring how the organisational care environment impedes or facilitates the provision of quality dementia care. Semi-structured interviews with 23 RCAs and more than 230 hours of participant observation were conducted in two nursing homes with specialised dementia units in British Columbia, Canada. Two overarching themes, "personhood undermined-management-staff relations" and "personhood undermined-workplace policies and practices" emerged, illustrating how, despite exposure to features believed beneficial to their working environment (e.g., favourable staffing ratios, relatively good remuneration), RCAs encountered repeated affronts to their personhood. The first theme encompasses the importance of being known (i.e., as persons and of their job demands) and valued (i.e., appreciated for their work in non-monetary terms). The second highlights the salience of work-life balance, full-staffing coverage and supportive human resource practices. RCAs' experiences reveal how the ongoing search for cost-efficiencies, cost-containment and cost-accountability overshadows their individuality, indicating a key disconnect between conceptual ideals and workplace realities. Organisations are encouraged to consider creating person-centred management and workplace practices that provide tangible evidence that RCAs, and their work, matter. © 2018 John Wiley & Sons Ltd.
Lin, Huei-Ru; Otsubo, Tetsuya; Imanaka, Yuichi
Japan is known for its long life expectancy and rapidly aging society that there are various demands of older adults need to be fulfilled with, and one of them is long-term care needs. Therefore, Japan implemented the Long-Term Care Insurance in year 2000 for citizens who are above 65-year old and citizens who are above 40-year old in needs of long-term care services. This study was undertaken to longitudinally examine the influence of dementia and living alone on care needs increases among older long-term care insurance service users in Japan. Long-term care insurance claims data were used to identify enrollees who applied for long-term care services between October 2010 and September 2011, and subjects were tracked until March 2015. A Kaplan-Meier survival analysis was conducted to examine increases in care needs over time in months. Cox regression models were used to examine the effects of dementia and living alone on care needs increases. The cumulative survival rates before care needs increased over the 4.5-year observation period were 17.6% in the dementia group and 31.9% in the non-dementia group. After adjusting for age, sex, care needs level, and status of living alone, the risk of care needs increases was found to be 1.5 times higher in the dementia group. Living alone was not a significant risk factor of care needs increases, but people with dementia who lived alone had a higher risk of care needs increases than those without dementia. Dementia, older age, the female sex, and lower care needs levels were associated with a higher risk of care needs increases over the study period. Among these variables, dementia had the strongest impact on care needs increases, especially in persons who lived alone.
Full Text Available Linda Sandberg,1 Lena Borell,1 David Edvardsson,2,3 Lena Rosenberg,1 Anne-Marie Boström1,4,5 1Department of Neurobiology, Care Sciences and Society (NVS, Division of Occupational Therapy, Karolinska Institutet, Huddinge, Sweden; 2School of Nursing and Midwifery, La Trobe University, Heidelberg, VIC, Australia; 3Department of Nursing, Umea University, Umea, Sweden; 4Theme Aging, Karolinska University Hospital, Stockholm, Sweden; 5Department of Nursing, Western Norway University of Applied Sciences, Haugesund, Norway Introduction: An increasing number of older persons worldwide live at home with various functional limitations such as dementia. So, home care staff meet older persons with extensive, complex needs. The staff’s well-being is crucial because it can affect the quality of their work, although literature on job strain among home care staff is limited. Aim: To describe perceived job strain among home care staff and to examine correlations between job strain, personal factors, and organizational factors. Methods: The study applied a cross-sectional survey design. Participants were dementia care specialists who work in home care (n=34 and other home care staff who are not specialized in dementia care (n=35. The Strain in Dementia Care Scale (SDCS and Creative Climate Questionnaire instruments and demographic variables were used. Descriptive and inferential statistics (including regression modeling were applied. The regional ethical review board approved the study. Results: Home care staff perceived job strain – particularly because they could not provide what they perceived to be necessary care. Dementia care specialists ranked job strain higher (m=5.71 than other staff members (m=4.71; p=0.04. Job strain (for total score and for all five SDCS factors correlated with being a dementia care specialist. Correlations also occurred between job strain for SDCS factor 2 (difficulties understanding and interpreting and not having Swedish as
Jungmin Kim, RN, MN
Full Text Available Purpose: The South Korean government introduced the universal long-term care insurance program in 2008 that created a new employment category of “paid family-care worker” to assist the elderly with chronic illnesses including dementia. The aim of this study was to understand the lived experience of paid family-care workers of people with dementia in South Korea. Methods: The study was a qualitative research design underpinned by interpretive description principles involving eight paid family-care workers. The participants were recruited by attaching the advertisement flyer in a notice board of an educational facility for paid family-care workers. Results: Paid family-care workers struggled to manage the behavioral and psychological symptoms of their care recipients. Their workloads created physical, emotional, social, and financial burdens. However, the care-giving activities were encouraged through their sense of responsibility, filial piety, and personal religious beliefs. Financial subsidies from the government and help received from others were also identified as encouragements. The education course provided to them assisted them to improve their dementia-care capabilities. Conclusion: Understanding paid family-care workers' lived experience in dementia care in South Korea assists with the identification of their educational needs and level of support they require to improve dementia care in the home care environment. A number of suggestions are made to increase paid family-care workers' knowledge, clinical skills, and job satisfaction to reduce their burdens and work-related incidents, such as challenging behaviors from those being cared for. Keywords: dementia, health personnel, long-term care, Republic of Korea
Dr. J. de Lange; E. Deusing; I.F.M. van Asch; J. Peeters; M. Zwaanswijk; A.M. Pot; A.L. Francke
To obtain insight into facilitating factors for case management in dementia care, we conducted a qualitative study with 13 online focus groups (OFGs). Participants were professionals involved in dementia case management (N = 99). We used mind-maps and the method of constant comparison for analysis.
Egede-Nissen, Veslemøy; Sellevold, Gerd Sylvi; Jakobsen, Rita; Sørlie, Venke
Nursing workforce in Western European health institutions has become more diverse because of immigration and recruitment from Asian, African, and East-European countries. Minority healthcare providers may experience communication problems in interaction with patients and coworkers, and they are likely to experience conflict or uncertainty when confronted with different cultural traditions and values. Persons with dementia are a vulnerable group, and the consequences of their illness challenge the ability to understand and express oneself verbally. The large number of minority healthcare providers in nursing homes underlines the importance to obtain better knowledge about this group's experiences with the care challenges in dementia care units. Can you tell about any challenges in the experiences in the encounter with persons suffering from dementia? Participants and research context: Five minority healthcare providers in a nursing home, in a dementia unit. All guidelines for research ethic were followed. Ethical consideration: The participants were informed that participation was voluntary, and they were guarantied anonymity. We used a qualitative method, conducting individual interviews, using a narrative approach. In the analysis, we applied a phenomenological-hermeneutical method, developed for researching life experiences. One theme and four subthemes: striving to understand the quality of care for persons with dementia. The subthemes: sensitivity to understand the patients' verbal and nonverbal expressions. To understand gratefulness, understand the patient as an adult and autonomous person, and understand the patient as a patient in a nursing home. Challenges comprise both ethical and cultural striving to understand persons with dementia. To care for persons with dementia in an unfamiliar context may be understood as a striving for acting ethically, when at the same time striving to adapt and acculturate to new cultural norms, in order to practice good
Full Text Available The Swedish Dementia Registry (SveDem was developed with the aim to improve the quality of diagnostic work-up, treatment and care of patients with dementia disorders in Sweden.SveDem is an internet based quality registry where several indicators can be followed over time. It includes information about the diagnostic work-up, medical treatment and community support (www.svedem.se. The patients are diagnosed and followed-up yearly in specialist units, primary care centres or in nursing homes.The database was initiated in May 2007 and covers almost all of Sweden. There were 28 722 patients registered with a mean age of 79.3 years during 2007-2012. Each participating unit obtains continuous online statistics from its own registrations and they can be compared with regional and national data. A report from SveDem is published yearly to inform medical and care professionals as well as political and administrative decision-makers about the current quality of diagnostics, treatment and care of patients with dementia disorders in Sweden.SveDem provides knowledge about current dementia care in Sweden and serves as a framework for ensuring the quality of diagnostics, treatment and care across the country. It also reflects changes in quality dementia care over time. Data from SveDem can be used to further develop the national guidelines for dementia and to generate new research hypotheses.
Sykes, Michael J; McAnuff, Jennifer; Kolehmainen, Niina
Evidence-based care for people with dementia is a priority for patients, carers and clinicians and a policy priority. There is evidence that people with dementia do not always receive such care. Audit and feedback, also known as clinical audit, is an extensively-used intervention to improve care. However, there is uncertainty about the best way to use it. To investigate whether audit and feedback is effective for improving health professionals' care of people with dementia. To investigate whether the content and delivery of audit and feedback affects its effectiveness in the context of health professionals' care for people with dementia. Systematic review DATA SOURCES: The Cochrane Central Register of Controlled Trials, Prospero, Medline (1946-December week 1 2016), PsycInfo (1967-January 2017), Cinahl (1982-January 2017), HMIC (1979-January 2017), Embase (1974-2017 week 1) databases and the Science Citation Index and Social Science Citation Index were searched combining terms for audit and feedback, health personnel, and dementia. Following screening, the data were extracted using the Template for Intervention Description and Replication (TIDieR), and synthesised graphically using harvest plots and narratively. Thirteen studies met the inclusion criteria. Published studies of audit and feedback in dementia rarely described more than one cycle. None of the included studies had a comparison group: 12 were before and after designs and one was an interrupted time series without a comparison group. The median absolute improvement was greater than in studies beyond dementia which have used stronger designs with fewer risks of bias. Included studies demonstrated large variation in the effectiveness of audit and feedback. Whilst methodological and reporting limitations in the included studies hinder the ability to draw strong conclusions on the effectiveness of audit and feedback in dementia care, the large interquartile range indicates further work is needed to
Bianca Bolzan Cieto
Full Text Available ABSTRACT OBJECTIVE: This study aimed to identify in the recent scientific literature, information on health care provided to people with dementia, dementia costs and its resource implications for public health. METHODS: This was a systematic review of the literature in which the articles were consulted from the databases PubMed/MEDLINE, LILACS and SciELO. The review sample consisted of 45 articles. RESULTS: Examination of the studies identified the current scenario of dementia in relation to public health and public policy in Brazil and the world. The analyzed studies revealed key information on aspects of dementia in the world. There was consensus on the high prevalence of the syndrome and on the significant cost of health care and public policy for assisting the elderly with dementia. CONCLUSION: The importance of planning and implementing new public policies was recognized, since these are essential for the organization and management of health services and directly influence the country's ability to provide health care for people with dementia.
Kröpelin, Tobias F; Neyens, Jacques C L; Halfens, Ruud J G; Kempen, Gertrudis I J M; Hamers, Jan P H
Persons with dementia are two to three times more likely to fall compared to persons without dementia. In long-term care settings, the dementia prevalence is highest. Therefore, older long-term care residents with dementia can be considered a high-risk group for falls. Nevertheless, no systematic evaluation of fall determinants in this population was found. The purpose of this study was to identify fall determinants among older long-term care residents with dementia or cognitively impaired persons in long-term care, by conducting a systematic literature review. We searched English, French, Dutch, and German articles listed in: CINAHL, Cochrane Library, EMBASE, MEDLINE, PsycINFO, PubMed, and Web of Science. Additionally, references of included articles were screened. Studies were included if determinants or circumstances of falls in older persons with dementia living in long-term care were assessed. Eight studies met the inclusion criteria. Three studies were excluded from detailed analysis because of insufficient quality. Use of psychotropic drugs, a "fair or poor" general health, gait impairments, and age were associated with an increased fall risk. Also trunk restraints were associated with an increased number of falls while full bedrails and wandering behavior were protective against falls. Fall risk factors known from other populations, e.g. use of psychotropic drugs, physical restraints, and health conditions, are found in long-term care residents with dementia as well. Due to the limited evidence available, future studies with adequate sample sizes and prospective designs are required to determine specific fall risk factors and verify existing results in this population.
Lee, Linda; Weston, W Wayne; Hillier, Loretta; Archibald, Douglas; Lee, Joseph
Family physicians often find themselves inadequately prepared to manage dementia. This article describes the curriculum for a resident training intervention in Primary Care Collaborative Memory Clinics (PCCMC), outlines its underlying educational principles, and examines its impact on residents' ability to provide dementia care. PCCMCs are family physician-led interprofessional clinic teams that provide evidence-informed comprehensive assessment and management of memory concerns. Within PCCMCs residents learn to apply a structured approach to assessment, diagnosis, and management; training consists of a tutorial covering various topics related to dementia followed by work-based learning within the clinic. Significantly more residents who trained in PCCMCs (sample = 98), as compared to those in usual training programs (sample = 35), reported positive changes in knowledge, ability, and confidence in ability to assess and manage memory problems. The PCCMC training intervention for family medicine residents provides a significant opportunity for residents to learn about best clinical practices and interprofessional care needed for optimal dementia care integrated within primary care practice.
van Mierlo, L.D.; van der Roest, H.G.; Meiland, F.J.M.; Dröes, R.M.
Many psychosocial intervention studies report effects in subgroups of people with dementia. Insight into the characteristics of these subgroups is important for care practice. This study reviews personal characteristics of people with dementia (living in the community or in an institution) that are
Morgan, Debra G; Kosteniuk, Julie G; Stewart, Norma J; O'Connell, Megan E; Kirk, Andrew; Crossley, Margaret; Dal Bello-Haas, Vanina; Forbes, Dorothy; Innes, Anthea
Community-based services are important for improving outcomes for individuals with dementia and their caregivers. This study examined: (a) availability of rural dementia-related services in the Canadian province of Saskatchewan, and (b) orientation of services toward six key attributes of primary health care (i.e., information/education, accessibility, population orientation, coordinated care, comprehensiveness, quality of care). Data were collected from 71 rural Home Care Assessors via cross-sectional survey. Basic health services were available in most communities (e.g., pharmacists, family physicians, palliative care, adult day programs, home care, long-term care facilities). Dementia-specific services typically were unavailable (e.g., health promotion, counseling, caregiver support groups, transportation, week-end/night respite). Mean scores on the primary health care orientation scales were low (range 12.4 to 17.5/25). Specific services to address needs of rural individuals with dementia and their caregivers are limited in availability and fit with primary health care attributes.
Cleary, Josephine; Doody, Owen
To explore nurses' experiences of caring for older people with intellectual disability and dementia. Ageing and dementia prevalence is increasing along with the life expectancy of people with intellectual disability. As a population group, people with intellectual disability have a high prevalence of dementia, which is higher within the subpopulation of Down syndrome. People with intellectual disability live in residential care, community or residential settings, and nurses are required to adapt their practices to meet the changed needs of the individual. A qualitative Husserlian descriptive phenomenological methodology facilitated the researcher to become absorbed in the quintessence of meaning and explore nurses' experience of working with older people with intellectual disability and dementia. Ethical approval was obtained, and data were collected utilising semistructured interviews (n = 11). Interviews were transcribed and analysed using Colaizzi's framework for data analysis. Three key themes were identified: 'knowledge of dementia', 'person-centred care' and 'transitioning within the service'. The study highlights the need for proactive planning, life story books of the patient, and funding to support client and staff. Overall, the study highlights the importance of knowing the person, supporting the individual and recognising presenting behaviours as outside the control of the individual. This article presents the experiences of nurses caring for the older person with intellectual disability and dementia. Transitions are often very difficult for both the person and their peers, and they experience benefit from the efforts of a multidisciplinary team facilitating a person-centred approach. © 2016 John Wiley & Sons Ltd.
Eggenberger, Eva; Heimerl, Katharina; Bennett, Michael I
Caring for and caring about people with dementia require specific communication skills. Healthcare professionals and family caregivers usually receive little training to enable them to meet the communicative needs of people with dementia. This review identifies existent interventions to enhance communication in dementia care in various care settings. We searched MEDLINE, AMED, EMBASE, PsychINFO, CINAHL, The Cochrane Library, Gerolit, and Web of Science for scientific articles reporting interventions in both English and German. An intervention was defined as communication skills training by means of face-to-face interaction with the aim of improving basic communicative skills. Both professional and family caregivers were included. The effectiveness of such training was analyzed. Different types of training were defined. Didactic methods, training content, and additional organizational features were qualitatively examined. This review included 12 trials totaling 831 persons with dementia, 519 professional caregivers, and 162 family caregivers. Most studies were carried out in the USA, the UK, and Germany. Eight studies took place in nursing homes; four studies were located in a home-care setting. No studies could be found in an acute-care setting. We provide a list of basic communicative principles for good communication in dementia care. Didactic methods included lectures, hands-on training, group discussions, and role-play. This review shows that communication skills training in dementia care significantly improves the quality of life and wellbeing of people with dementia and increases positive interactions in various care settings. Communication skills training shows significant impact on professional and family caregivers' communication skills, competencies, and knowledge. Additional organizational features improve the sustainability of communication interventions.
Kosteniuk, Julie; Morgan, Debra; Innes, Anthea; Keady, John; Stewart, Norma; D'Arcy, Carl; Kirk, Andrew
Little is known about the views of rural family physicians (FPs) regarding collaborative care models for patients with dementia. The study aims were to explore FPs' views regarding this issue, their role in providing dementia care, and the implications of providing dementia care in a rural setting. This study employed an exploratory qualitative design with a sample of 15 FPs. All rural FPs indicated acceptance of collaborative models. The main disadvantages of practicing rural were accessing urban-based health care and related services and a shortage of local health care resources. The primary benefit of practicing rural was FPs' social proximity to patients, families, and some health care workers. Rural FPs provided care for patients with dementia that took into account the emotional and practical needs of caregivers and families. FPs described positive and negative implications of rural dementia care, and all were receptive to models of care that included other health care professionals.
Davies, Nathan; Rait, Greta; Maio, Laura; Iliffe, Steve
People with dementia have been described as the 'disadvantaged dying' with poor end-of-life care. Towards the end of life, people with dementia cannot report on the care they receive. It is therefore important to talk to caregivers; however, few have explored the views about end-of-life care from the caregivers' perspective. The majority of research on family caregivers has focussed on the burden and psychological impact of caring for a relative with dementia. This study aimed to explore the views of family caregivers about quality end-of-life care for people with dementia. Qualitative study using in-depth interviews and analysed using thematic analysis. Purposive sampling from a third sector organisation's caregiver network was used to recruit 47 caregivers in England (2012-2013), consisting of (1) family caregivers of someone who had recently received a diagnosis of dementia, (2) family caregivers currently caring for someone with dementia and (3) bereaved family caregivers. Three over-arching themes were derived from the interviewees' discourse, including maintaining the person within, fostering respect and dignity and showing compassion and kindness. End-of-life care for people with dementia does not differ from care throughout the dementia trajectory. Throughout the findings, there is an implicit underlying theme of conflict: conflict between family caregivers and an increasingly systematised service of care and conflict between family caregivers and professionals. This study has in particular demonstrated the importance of the psycho-social aspects of care, aligning with the holistic definition of palliative care.
Full Text Available Objectives: The objective of this study was to describe the care practices of nursing staff caring older people with dementia in a surgical ward. Methods: The data were collected from nursing staff (n = 191 working in surgical wards in one district area in Finland during October to November 2015. Data were collected using a structured questionnaire and analyzed statistically. The instrument consists of a total number of 141 items and four dimensions. The dimensions were as follows: background information (12 of items, specific characteristics of older people with dementia in a surgical ward (24 of items, specific characteristics of their care in a surgical ward (66 of items and use of physical restraints and alternative models for use of restraints for people with dementia (39 of items. Results: The questions which measure the nursing staff’s own assessment of care practices when caring for people with dementia in surgical wards were selected: counseling people with dementia, reaction when a surgical patient with dementia displays challenging behavior and use of alternative approach instead of physical restraints. Most commonly the nursing staff pay attention to patient’s state of alertness before counseling older people with dementia. Instead of using restraints, nursing staff gave painkillers for the patient and tried to draw patients’ attention elsewhere. The nursing staff with longer work experience estimate that they can handle the patients’ challenging behavior. They react by doing nothing more often than others. They pretend not to hear, see or notice anything. Conclusion: The findings of this study can be applied in nursing practice and in future studies focusing on the care practices among older people with dementia in acute care environment. The results can be used while developing patient treatments process in surgical ward to meet future needs.
Conway, Erin R; Chenery, Helen J
The study aims to evaluate the effects of a communication skills training programme on community aged care staff's knowledge of communication support in dementia and on staff's care experience. Dementia can lead to impairments in communication. Therefore, quality community-based dementia care requires that staff be skilled communicators, equipped to facilitate interactions with people with dementia. The current investigation evaluated the effectiveness of the MESSAGE Communication Strategies in Dementia for Care Staff training programme with respect to knowledge of communication support and the staff/caregiver experience. A multi-centre controlled pretest/post-test design with randomised cohort allocation was used. Outcome measures were completed at baseline, immediately after training (training group only), and at three-month follow-up. Thirty-eight care staff working in community aged care participated and completed all outcome measures (training = 22; control = 16).Training and control groups completed the following outcome measures: knowledge of communication support strategies, self-efficacy, preparedness to provide care, strain in nursing care and attitude to dementia care. Staff in the training group provided written feedback on the training. A significant improvement in knowledge scores from baseline was found for the training group both immediately after training and at three-month follow-up. There was also a significant training effect for self-efficacy and preparedness to provide care. No significant difference was found for the control group for any measure. No significant training effects were found for measures of strain or attitudes to dementia care. Feedback from staff suggests that the training was well received. The MESSAGE training was positively received by staff and had a significant effect on care staff knowledge, and confidence to provide care for people with dementia. The easily accessible multimedia training programme is well received by
Full Text Available Introduction: Dementia syndromes are an increasing medical and social problem in today’s world. Preservation of the best possible quality of life in dementia patients relies on prolonging their independence in daily life for as long as possible. Dementia patients require increasing support as the disease progresses and will ultimately become dependent on the help of others. Aim of the research: To assess the level of mental and physical performance and nutritional status in patients with dementia syndromes in long-term residential care. Material and methods : The study group comprised 62 patients with dementia syndromes resident in a Medical and Nursing Care Facility in Pustków. Selected aspects of quality of life were investigated with the Barthel scale, GDS scale according to Reissberg, Abbreviated Mental Test Score (AMTS and Mini-Nutritional Assessment (MNA scale. Results: In our study men performed better than women on the Barthel scale, 58% of all patients were rated moderately severe on that scale, 36% were severe and 7% were mild. Assessment of the current severity of dementia on the GDS scale showed that 28% of the patients had very severe dementia, 27% had mild deficits, 27% had moderate deficits, 11% had moderately severe dementia and 6% had borderline dementia. In a mental state assessment according to the AMTS scale, men scored higher than women. This difference indicates less memory deficit and better psychological and physical status among men. With regard to nutritional status, our study revealed a risk of malnutrition in 65% of the patient and actual malnutrition in 7%. Conclusions : The Barthel scale, rating the performance of dementia patients with regard to activities of daily life, classified more than half of the patients as „moderately severe”. Women had lower mean scores than men in the Barthel scale, AMTS scale and GDS scale, indicating that dementia is more prevalent among women than among men. The findings of the
Schwarzkopf, Larissa; Menn, Petra; Kunz, Simone; Holle, Rolf; Lauterberg, Jörg; Marx, Peter; Mehlig, Hilmar; Wunder, Sonja; Leidl, Reiner; Donath, Carolin; Graessel, Elmar
Rising life expectancy is associated with higher prevalence rates of dementia disorders. When disease progresses the patients' call on formal health care services and on social support grows which imposes increasing costs of care. The aim of this study was to investigate the costs for patients with mild and moderate dementia in community setting in Germany. We assessed total costs of care and individual cost components for 383 community-living dementia patients alongside a cluster-randomized trial from societal and health insurance perspective. Utilization of formal health care services was based on insurance claims data and time dedicated to informal care was assessed within caregiver interviews. We estimated costs using a two-part regression model adjusting for age, gender and cluster-effects. Costs of care equal €47,747 (Euros) from societal perspective which is almost the 4.7-fold of health insurance expenditures. Valued informal care covers 80.2% of societal costs and increases disproportionally when disease progresses. In moderate dementia the corresponding amount exceeds the one in mild dementia by 69.9%, whereas costs for formal health care services differ by 14.3%. Due to valued informal care, costs of care for community-living patients with moderate dementia are significantly higher than for patients with mild dementia. Informal care is a non-cash item saving expenditures for professional care. To relieve social security system and family caregivers as well as to allow dementia patients to stay at home as long as possible, concepts fostering community-based dementia care and support to family caregivers need to be further developed. Copyright © 2011 International Society for Pharmacoeconomics and Outcomes Research (ISPOR). Published by Elsevier Inc. All rights reserved.
Petrazzuoli, Ferdinando; Vinker, Shlomo; Koskela, Tuomas H; Frese, Thomas; Buono, Nicola; Soler, Jean Karl; Ahrensberg, Jette; Asenova, Radost; Foguet Boreu, Quintí; Ceyhun Peker, Gülsen; Collins, Claire; Hanževački, Miro; Hoffmann, Kathryn; Iftode, Claudia; Kurpas, Donata; Le Reste, Jean Yves; Lichtwarck, Bjørn; Petek, Davorina; Pinto, Daniel; Schrans, Diego; Streit, Sven; Tang, Eugene Yee Hing; Tatsioni, Athina; Torzsa, Péter; Unalan, Pemra C; van Marwijk, Harm; Thulesius, Hans
Strategies for the involvement of primary care in the management of patients with presumed or diagnosed dementia are heterogeneous across Europe. We wanted to explore attitudes of primary care physicians (PCPs) when managing dementia: (i) the most popular cognitive tests, (ii) who had the right to initiate or continue cholinesterase inhibitor or memantine treatment, and (iii) the relationship between the permissiveness of these rules/guidelines and PCP's approach in the dementia investigations and assessment. Key informant survey. Primary care practices across 25 European countries. Four hundred forty-five PCPs responded to a self-administered questionnaire. Two-step cluster analysis was performed using characteristics of the informants and the responses to the survey. Two by two contingency tables with odds ratios and 95% confidence intervals were used to assess the association between categorical variables. A multinomial logistic regression model was used to assess the association of multiple variables (age class, gender, and perceived prescription rules) with the PCPs' attitude of "trying to establish a diagnosis of dementia on their own." Discrepancies between rules/guidelines and attitudes to dementia management was found in many countries. There was a strong association between the authorization to prescribe dementia drugs and pursuing dementia diagnostic work-up (odds ratio, 3.45; 95% CI 2.28-5.23). Differing regulations about who does what in dementia management seemed to affect PCP's engagement in dementia investigations and assessment. PCPs who were allowed to prescribe dementia drugs also claimed higher engagement in dementia work-up than PCPs who were not allowed to prescribe.
Phung, Thien Kieu Thi; Andersen, Birgitte Bo; Kessing, Lars Vedel
BACKGROUND: We conducted a nationwide registry-based study of the quality of diagnostic evaluation for dementia in the secondary health care sector. METHOD: Two hundred patients were randomly selected from the patient population (4,682 patients) registered for the first time with a dementia...... diagnosis in the nationwide hospital registries during the last 6 months of 2003. Through medical record review, we evaluated the completeness of the work-up on which the dementia diagnosis was based, using evidence-based dementia guidelines as reference standards. RESULTS: Satisfactory or acceptable...... completion of the basic dementia work-up was documented in 51.3% of the patients. Only 11.5% of those with unsatisfactory work-up were referred to follow-up investigations. Dementia syndrome was confirmed in 88.5% of the cases, but correct subtypes were diagnosed in only 35.1%. CONCLUSION: The adherence...
Jablonski Rita A
Full Text Available Abstract Background Nursing home residents with dementia are often dependent on others for mouth care, yet will react with care-resistant behavior when receiving assistance. The oral health of these elders deteriorates in the absence of daily oral hygiene, predisposing them to harmful systemic problems such as pneumonia, hyperglycemia, cardiac disease, and cerebral vascular accidents. The purpose of this study is to determine whether care-resistant behaviors can be reduced, and oral health improved, through the application of an intervention based on the neurobiological principles of threat perception and fear response. The intervention, called Managing Oral Hygiene Using Threat Reduction, combines best mouth care practices with a constellation of behavioral techniques that reduce threat perception and thereby prevent or de-escalate care-resistant behaviors. Methods/Design Using a randomized repeated measures design, 80 elders with dementia from 5 different nursing homes will be randomized at the individual level to the experimental group, which will receive the intervention, or to the control group, which will receive standard mouth care from research team members who receive training in the proper methods for providing mouth care but no training in resistance recognition or prevention/mediation. Oral health assessments and care-resistant behavior measurements will be obtained during a 7-day observation period and a 21-day intervention period. Individual growth models using multilevel analysis will be used to estimate the efficacy of the intervention for reducing care-resistant behaviors in persons with dementia, and to estimate the overall efficacy of the intervention using oral health outcomes. Activity-based costing methods will be used to determine the cost of the proposed intervention. Discussion At the conclusion of this study, the research team anticipates having a proven intervention that prevents and reduces care-resistant within the
Mole, Louise; Kent, Bridie; Abbott, Rebecca; Wood, Chloë; Hickson, Mary
There are an increasing number of people with dementia living in their own home for longer, often supported by a family member. The symptoms of dementia can affect an individual's nutritional status, which can lead to a reduced quality of life for the person with dementia and their family members. A scoping review was conducted from July 2016 until September 2016, using a recognised framework, to explore what is currently known, and identify any gaps in the research regarding the nutritional care of people living with dementia at home. This included any interventions that may have been trialled or implemented, and the views of those living with dementia, carers and clinicians. Six electronic databases were searched from inception to July 2016. A review team was involved in screening and data extraction for selected articles. Published qualitative and quantitative studies were included that explored the nutritional care of people living with dementia at home. Methods included data extraction and conventional content analysis. Stakeholders were involved in the development of final categories. Following screening, 61 studies reported in 63 articles were included. Most studies were cross-sectional (n = 24), cohort (n = 15) or qualitative (n = 9). Only three were randomised controlled trials. Three overarching categories represented the results: Timely identification of nutritional risk and subsequent regular monitoring of nutritional status, multi-component tailored interventions and the influence of the care-giving dyad on nutritional status. Many studies identify people living at home with dementia as a vulnerable group prone to malnutrition; however, a lack of interventions exists to address the increased risk. There is a lack of research exploring the role of home care providers and healthcare professionals in the provision of nutritional care. Further research is required to explore how the emotional aspect of the care-giving dyad influences nutritional care
Verkaik, Renate; van Antwerpen-Hoogenraad, Paulien; de Veer, Anke; Francke, Anneke; Huis In Het Veld, Judith
Background Self-management in patients and family caregivers confronted with dementia is not self-evident. Self-management skills may be limited because of the progressive cognitive decline of the patient and because family caregivers are often also very aged. Self-management support by nursing staff is therefore of paramount importance. Objectives To gain insight into how nursing staff perceive their self-management support tasks, and how they put them into practice. Research questions are: 'What are the opinions and experiences of Dutch nursing staff working in home care or residential elderly care regarding self-management support for people with dementia and their family caregivers?' and 'Do nursing staff feel sufficiently trained and skilled for self-management support?'. Methods A mixed methods approach was used, combining cross-sectional quantitative survey data from 206 Dutch nursing professionals with qualitative interviews among 12 nursing staff working in home care or residential elderly care in The Netherlands. Results Nursing staff working in home care experienced self-management support of people with dementia as a part of their job and as an attractive task. They consider 'helping people with dementia to maintain control over their lives by involving them in decisions in daily care' the essence of self-management support. Nursing staff saw family caregivers as their main partners in providing self-management support to the patient. They were less aware that family caregivers themselves might also need self-management support. Nursing staff often felt insufficiently trained to give adequate self-management support. RN's and CNA's did not differ in their opinions, experiences and training needs. Conclusions Nursing staff in home care do consider self-management support an important and attractive task in dementia care. Their skills for providing self-management support to patients with dementia and family caregivers need improvement. Recommendations
Bai, Xue; Kwok, Timothy C Y; Chan, Natalie Y T; Ho, Florence K Y
The job satisfaction of live-in foreign domestic helpers (FDHs) may influence their caring motivation and the quality of care they provide, which may in turn affect the health status of care recipients. This study identifies the factors affecting job satisfaction of FDHs caring for people with dementia in Hong Kong, focusing especially on the role of FDHs' adaptation status, job self-efficacy and care recipients' situation. A total of 152 FDHs taking care of people with dementia were recruited from 6 day care centres for elderly people in Hong Kong when they attended with their care recipients. Data were collected from February to August 2011 and the response rate was 95%. Participants completed questionnaires which included measures of care recipients' dementia severity and disruptive behaviours, FDHs' demographic factors, personal adaptation status, caregiving self-efficacy and job satisfaction. Hierarchical regression analysis was conducted to analyse the data. The results showed that longer stay in Hong Kong, better fluency in Cantonese (local dialect), greater satisfaction in living conditions, higher caregiving self-efficacy and less disruptive behaviour of care recipients were independently associated with stronger job satisfaction in FDHs looking after people with dementia. On the basis of these findings, we would suggest that employers should consider helpers who have been in Hong Kong for a longer period of time and speak fluent Cantonese, and have previous experience of taking care of people with dementia. In addition, FDHs caring for people with dementia may benefit from carer training which improves their self-efficacy in dementia care. © 2013 Blackwell Publishing Ltd.
Full Text Available This study was set out to explore the understanding of dementia as a culturally and socially shaped illness in order to illuminate such perceptions and experience in relation to ethnoculturally profiled dementia care in Sweden. The results indicate, contrary to many other studies (c.f. Conell et al 2009; Flaskerud 2009; Gray et al 2009; Hinton, Franz & Friend 2004 that the perception of dementia and the described meaning of the disease have little (or nothing to do with decisions regarding formal care. However, cultural norms and traditions in relation to issues of filial piety seem to do. Thus, to understand how different ethnocultural groups might respond to dementia care within a migratory context, the current study illuminate the fact that it is crucial to realize that neither the individual person with dementia, nor larger ethnocultural groups can be placed within a vacuum that seemingly does not change or correlate with surrounding society.
BACKGROUND: Dementia patients in Ireland live 8 years on average after diagnosis and health policy aims to ensure patients are cared for in the home for as long as possible. AIM: To assess the role of general practitioners in Ireland caring for dementia carers. METHODS: A PubMed search (1980-2010) was performed using MeSH terms "caregivers or carers", "Dementia or Alzheimer\\'s disease", "family physician or general practitioner". An English language restriction was imposed and the search continued to June 24th 2010. RESULTS: Psychosocial multidisciplinary interventions that unite education, skills training, management of psychological problems and family support in the community are effective in managing the problems of carers and should be facilitated by general practitioners. CONCLUSIONS: Dementia carers form an important yet understated patient group who present unique challenges for general practitioners in Ireland.
BACKGROUND: Dementia patients in Ireland live 8 years on average after diagnosis and health policy aims to ensure patients are cared for in the home for as long as possible. AIM: To assess the role of general practitioners in Ireland caring for dementia carers. METHODS: A PubMed search (1980-2010) was performed using MeSH terms "caregivers or carers", "Dementia or Alzheimer\\'s disease", "family physician or general practitioner". An English language restriction was imposed and the search continued to June 24th 2010. RESULTS: Psychosocial multidisciplinary interventions that unite education, skills training, management of psychological problems and family support in the community are effective in managing the problems of carers and should be facilitated by general practitioners. CONCLUSIONS: Dementia carers form an important yet understated patient group who present unique challenges for general practitioners in Ireland.
Kokkonen, Taru-Maija; Cheston, Richard I L; Dallos, Rudi; Smart, Cordet A
Past research suggests that dementia care staff are vulnerable to the development of burnout, which has implications for staff well-being and hence the quality of care for people with dementia. Studying personal vulnerability factors in burnout is important as it can guide staff training and support. Attachment theory suggests that adult attachment styles affect caregiving relationships and individuals' responses to stress, providing a framework for understanding caregivers' styles of coping. This cross-sectional survey study examined relationships between staff attachment styles, geriatric nursing self-efficacy, and approaches to dementia in burnout. Seventy-seven members of dementia care staff working on inpatient wards for older people completed self-report questionnaires. Insecure attachment, lower levels of self-efficacy, and more optimistic attitudes in staff were related to higher levels of burnout. Staff training on the role of attachment in dementia care is recommended. Further research is required to explore mediating factors between adult attachment styles and burnout. © The Author(s) 2013 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav.
Kim, Jungmin; De Bellis, Anita Marie; Xiao, Lily Dongxia
The South Korean government introduced the universal long-term care insurance program in 2008 that created a new employment category of "paid family-care worker" to assist the elderly with chronic illnesses including dementia. The aim of this study was to understand the lived experience of paid family-care workers of people with dementia in South Korea. The study was a qualitative research design underpinned by interpretive description principles involving eight paid family-care workers. The participants were recruited by attaching the advertisement flyer in a notice board of an educational facility for paid family-care workers. Paid family-care workers struggled to manage the behavioral and psychological symptoms of their care recipients. Their workloads created physical, emotional, social, and financial burdens. However, the care-giving activities were encouraged through their sense of responsibility, filial piety, and personal religious beliefs. Financial subsidies from the government and help received from others were also identified as encouragements. The education course provided to them assisted them to improve their dementia-care capabilities. Understanding paid family-care workers' lived experience in dementia care in South Korea assists with the identification of their educational needs and level of support they require to improve dementia care in the home care environment. A number of suggestions are made to increase paid family-care workers' knowledge, clinical skills, and job satisfaction to reduce their burdens and work-related incidents, such as challenging behaviors from those being cared for. Copyright © 2018. Published by Elsevier B.V.
R?mg?rd, Margareta; Carlson, Elisabeth; Mangrio, Elisabeth
Background As nursing homes become increasingly diverse, dementia care needs a wider range of culturally responsive strategies for individual and collective social interactions. While previous studies conclude that medical clowns have positive effects on verbal and non verbal social interactions, research is lacking from the perspective of residents' cultural background. The aim of this study was to identify interaction strategies employed by medical clowns in culturally diverse dementia care...
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Jensen, Christine J; Inker, Jennifer
This article describes a project to identify the needs of family caregivers and health care providers caring for persons with dementia. Participants included 128 caregivers, who completed a survey, and 27 health care providers, who participated in a focus group and completed a survey. Caregivers reported their primary source of information about the disease was the doctor; however, the majority also reported they were primarily informed of medications and not about needed resources. Health care providers identified limited time with patients and families, and lack of awareness of community services, as their main challenges. Recommendations include strengthening the partnership between physicians, patients, and caregivers (the dementia care triad) through additional support and training for physicians and caregivers, increasing awareness of the Alzheimer's Association, and utilization of technology for families and professionals to track the needs of persons with dementia. © The Author(s) 2014.
Luk, James K H; Chan, Felix H W
Dementia will become more common as the population ages. Advanced dementia should be considered as a terminal illnesses and end-of-life (EOL) care is very much needed for this disease group. Currently, the EOL services provided to this vulnerable group in Hong Kong, especially those living in residential care homes, is limited. The usual practice of residential care homes is to send older residents with advanced dementia to acute hospitals when they are sick, irrespective of their wish, premorbid status, diagnoses and prognosis. This may not accord with what the patients perceive to be a "good death". There are many barriers for older people to die in place, both at home and at the residential care home. In the community, to enhance EOL care to residential care home for the elderly (RCHE) residents, pilot EOL program had been carried out by some Community Geriatric Assessment Teams. Since 2015, the Hospital Authority funded program "Enhance Community Geriatric Assessment Team Support to End-of-life Patients in Residential Care Homes for the Elderly" has been started. In the program, advance care planning (ACP), Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) (non-hospitalized) order will be established and the program will be expected to cover all clusters in Hong Kong by 2018/2019. In hospital setting, EOL clinical plan and EOL ward in geriatric step-down hospitals may be able to improve the quality of death of older patients. In Sep 2015, the Hospital Authority Guidelines on Life-Sustaining Treatment in the Terminally Ill was updated. Amongst other key EOL issues, careful (comfort) hand feeding was mentioned in the guideline. Other new developments include the possible establishment of enduring power of attorney for health care decision and enhancement of careful hand feeding amongst advanced dementia patients in RCHEs.
van Wyk, Adele; Manthorpe, Jill; Clark, Charlotte
Background Behavioural and psychological symptoms of dementia are often the reasons for moving to a care home. Care staff, often with limited dementia training, may have to support residents with distressed behaviour on a daily basis. Evidence about the support of residents with distressed or challenging behaviour in the South African context is lacking. This exploratory study aimed to gain an understanding of what care home staff perceived to be distressed behaviour, their coping strategies and how they learned to work with residents with behavioural symptoms of dementia. Methods An exploratory study was conducted among 17 participants working in four care homes in the Western Cape province of South Africa in 2014. Semi-structured interviews were audio-recorded. Data were analysed thematically. Findings Findings reflected the literature with regard to examples of behavioural symptoms of people with dementia that staff find challenging to manage. Overall, the majority of staff reported holding positive feelings about working with people with dementia. All preferred interpersonal approaches to manage distressed behaviour above medication although a small minority noted the use of medication in some cases. Dementia training was considered by most participants as an unmet need. Conclusion This exploratory study identified care home workers' desires for training about dementia and their preferences for interpersonal as opposed to pharmacological approaches to managing residents' distressed behaviour. The legacy of race and cultural perspectives in South Africa appears to still influence care practice and provision. Staff commitment, their interest in advancing their practice and their aspirations to offer more person-centred care were evident. Dementia training was identified as potentially helpful to care home staff who manage residents' distressed behaviour. Training should be developed in South Africa to promote good practice.
Blake, Marianne; Mitchell, Gary
Aim To present a narrative review of the empirical literature on the use of horticultural therapy in dementia care. Method A comprehensive literature search, conducted in December 2014, resulted in the selection of 15 primary research articles for review. Of these, three used qualitative methods, five used quantitative methods and seven used mixed methodology. The articles were critically appraised, and the narrative synthesis used a thematic approach whereby prominent themes from the articles were grouped to form representative themes. Findings Three main themes emerged from the narrative synthesis: the emotional health of people living with dementia, their perceived self-identity and their levels of engagement. Conclusion Horticultural therapy can be beneficial. At a macro-level, it is an inexpensive therapy that does not require specialist training to deliver. At a micro-level, it enhances the wellbeing of people living with dementia. Recommendations are made to promote access to appropriate horticultural therapy for people living with dementia, and for further research in this area.
Austbø Holteng, Lise Birgitte; Frøiland, Christina Tølbøl; Corbett, Anne; Testad, Ingelin
Dysphagia and dementia are conditions, which combined, can lead to complications for the person and require good nutritional care. There is very little evidence-based literature regarding nutritional care for people with dysphagia and dementia. It is clear that care staff plays a vital role, and that communication and informed decision-making are critical to the process, yet little is known regarding the use of available interventions such as texture modified food (TMF), and their acceptability and feasibility for care staff and residents. Therefore the aim of this study was to investigate the experiences of care staff when providing nutritional care for people with dysphagia and dementia, and their impressions and experience of using TMF as a new intervention for nutrition. This was a qualitative study with an inductive approach, which aimed to explore the experience of care staff using TMF in a care home setting. Data were collected using focus group interviews, an approach which is validated as a means of supporting and developing the understanding of a phenomenon, through interactions and discussions in the group. Participants were care staff working in a care home setting in Norway. Twelve participants were recruited to this study across two focus groups. The cohort included four nurses, six practical nurses, one nurse assistants and one student nurse. Four main categories emerged from the focus group discussions regarding the use of TMF. These were: (I) emotional strain; (II) deficient nutritional care; (III) increased self-efficacy with use of TMF; (IV) better nutritional care with TMF. Use of TMF to improve nutritional care for people with dysphagia appears to have merit for both residents and care staff, and should be considered as a means of improving nutritional care for people with dementia in care homes. Minimizing feeding difficulties and increasing nutritional intake is an important goal when caring for this vulnerable group of people, and there is a
Nyman, Samuel Robert; Innes, Anthea; Heward, Michelle
This study explored the social care and support needs of people with dementia and visual impairment, and the barriers and facilitators for meeting these needs. Twenty-six semi-structured interviews were conducted: 21 joint and 5 individual interviews with the person with dementia and visual impairment (n=4) or their family/paid carer (n=1). Interviews were analysed thematically. Three themes are presented. (1) Social care needs: having dementia can reduce an individual's ability to cope with their visual impairment, and lead to increased dependency and reduced daily stimulation. (2) Barriers to using technology to meet social care needs: difficulties were reported with learning to use unfamiliar technology and the cost of visual impairment aids, and for some, the presence of dementia made visual impairment aids unusable and vice versa. (3) Familiarity as a facilitator for meeting social care needs: living at home or taking furnishings and ornaments into a new home facilitated independence, and continuity of paid carers/volunteers facilitated the caring relationship between the individual and staff/volunteer. Care workers will better serve older people if they are aware of the social care and support needs that arise from having both dementia and visual impairment.
Armando Carlos Roca Socarrás
Full Text Available Background: Dementia presents a high prevalence both in developed and developing countries. It is one of the main causes of terminal stage for a non oncological illness. Objective: To determine the behaviour of some biological variables in terminal stage patients with dementia. Method: A descriptive study was conducted in 16 patients with a diagnostic of dementia in terminal stage. These patients were admitted in the Seychelles´ Hospice between February 2010 and February 2011. The behaviour of dementia in relation to patient’s age, type of dementia, responses to the Folstein´s cognitive mini-test, Charlson´s and Barthel´s indexes, presence of non communicable chronic diseases, and health settings responsible for the remission was analyzed. Results: 31,3 % of patients admitted in the Hospice presented dementia. The age group with more cases was that from 75 to 84 years old. Vascular dementia and Alzheimer’s Disease presented the same number of cases (37,5 % each. 56% of the patients died during the first 15 days of admission and only 12,5 % lived more than 6 months. Hypertension and cerebrovascular disease were the most common non communicable chronic diseases. 56% of cases had been remitted from hospitals. Conclusions: Dementia in terminal stages follows a behaviour that allows anticipating an appropriate strategy for palliative care in the Hospice.
Boogaard, Jannie A; van Soest-Poortvliet, Mirjam C; Anema, Johannes R; Achterberg, Wilco P; Hertogh, Cees M P M; de Vet, Henrica C W; van der Steen, Jenny T
End-of-life care in dementia in nursing homes is often found to be suboptimal. The Feedback on End-of-Life care in dementia (FOLlow-up) project tests the effectiveness of audit- and feedback to improve the quality of end-of-life care in dementia. Nursing homes systematically invite the family after death of a resident with dementia to provide feedback using the End-of-Life in Dementia (EOLD) - instruments. Two audit- and feedback strategies are designed and tested in a three-armed Randomized Controlled Trial (RCT): a generic feedback strategy using cumulative EOLD-scores of a group of patients and a patient specific feedback strategy using EOLD-scores on a patient level. A total of 18 nursing homes, three groups of six homes matched on size, geographic location, religious affiliation and availability of a palliative care unit were randomly assigned to an intervention group or the control group. The effect on quality of care and quality of dying and the barriers and facilitators of audit- and feedback in the nursing home setting are evaluated using mixed-method analyses. The FOLlow-up project is the first study to assess and compare the effect of two audit- and feedback strategies to improve quality of care and quality of dying in dementia. The results contribute to the development of practice guidelines for nursing homes to monitor and improve care outcomes in the realm of end-of-life care in dementia. The Netherlands National Trial Register (NTR). NTR3942.
Vernooy-Dassen, M.J.F.J.; Felling, A.J.A.; Persoon, J.M.G.
Objective. To investigate predictors of change in the sense of competence of primary caregivers and continuity in home care for dementia patients. Design. A prospective longitudinal study with a follow-up period of 10 months. Setting. Dementia patients living in the community selected by Dutch
Full Text Available Background Dementia is a major public health challenge and China has the largest population with dementia in the world. However, dementia care and caregivers for Chinese are less investigated. Objectives and design To evaluate demographic and socio-economic influences on dementia care, management patterns and caregiver burden in a household community-dwelling-based survey, using participants’ care receipts and Zarit scale. Setting and participants Rural and urban communities across six provinces of China comprising 4837 residents aged ≥60 years, in whom 398 had dementia and 1312 non-dementia diseases. Results People with dementia were less likely to receive care if they were living in rural compared to urban areas (Odd ratio (OR = 0.20; 95%CI: 0.10–0.41, having education level below compared to above secondary school (OR = 0.24; 95%CI: 0.08–0.70, manual labourer compared to non-manual workers (OR = 0.27; 95%CI: 0.13–0.55, having personal annual income below RMB 10,000 yuan (£1000 compared to above (OR = 0.37; 95%CI: 0.13–0.74 or having four or more than compared to less four children (OR = 0.52; 95%CI: 0.27–1.00. Caregivers for dementia compared with those for non-dementia diseases were younger and more likely to be patients’ children or children in-law, had lower education and spent more caring time. Caregiver burden increased with low education, cutback on work and caring for patients who were younger or living in rural areas, and this caregiver burden was three-fold greater than that for non-dementia diseases. Conclusions There are a number of inequalities in dementia care and caregiver burden in China. Reducing the socio-economic gap and increasing education may improve community care for people with dementia and preserve caregivers’ well-being.
Rokstad, Anne Marie Mork; Døble, Betty Sandvik; Engedal, Knut; Kirkevold, Øyvind; Benth, Jūratė Šaltytė; Selbaek, Geir
The objective of the study was to evaluate the impact of the Dementia ABC educational programme on the participants' competence in person-centred care and on their level of job satisfaction. The development of person-centred care for people with dementia is highly recommended, and staff training that enhances such an approach may positively influence job satisfaction and the possibility of recruiting and retaining competent care staff. The study is a longitudinal survey, following participants over a period of 24 months with a 6-month follow-up after completion of the programme. A total of 1,795 participants from 90 municipalities in Norway are included, and 580 from 52 municipalities completed all measurements. The person-centred care assessment tool (P-CAT) is used to evaluate person-centredness. The psychosocial workplace environment and job satisfaction questionnaire is used to investigate job satisfaction. Measurements are made at baseline, and after 12, 24 and 30 months. A statistically significant increase in the mean P-CAT subscore of person-centred practice and the P-CAT total score is found at 12, 24 and 30 months compared to baseline. A statistically significant decrease in scores in the P-CAT subscore for organisational support is found at all points of measurement compared to baseline. Statistically significant increases in satisfaction with workload, personal and professional development, demands balanced with qualifications and variation in job tasks as elements of job satisfaction are reported. The evaluation of the Dementia ABC educational programme identifies statistically significant increases in scores of person-centredness and job satisfaction, indicating that the training has a positive impact. The results indicate that a multicomponent training programme including written material, multidisciplinary reflection groups and workshops has a positive impact on the development of person-centred care practice and the job satisfaction of care
Ottesen, Aase Marie
. Beskrivelse af den metode som er anvendt Metodisk er projektet tilrettelagt som et casestudie af et musikterapiforløb. I læringsmodellen tages afsæt i Tom Kitwoods teori og værdigrundlag om en personorienteret omsorg. Dementia Care Mapping (DCM) anvendes i læringsforløbet til at belyse de relationelle møder......, der opstår i musikterapien. Samtidig anvendes DCM som pædagogisk metode i feedbackprocessen med omsorgsgiverne, hvor der arbejdes på at give omsorgsgiverne redskaber til at bruge musik aktivt i deres interaktion med personer med demens i forskellige samværssituationer. Projektets teoretiske...
Jing-Jy Wang, PhD
Conclusion: The results can serve as reference for planning dementia communication education for school curriculum to enhance student nurses' communication abilities and for junior nurses working in long-term or acute care settings to increase nurses' patient-centered communication abilities with the ultimate goal of improving quality of care for patients with dementia.
Full Text Available Sun Kyung Kim, Myonghwa Park Education and Research Center for Evidence Based Nursing Knowledge, College of Nursing, Chungnam National University, Daejeon, Republic of Korea Background: Person-centered care is a holistic and integrative approach designed to maintain well-being and quality of life for people with dementia, and it includes the elements of care, the individual, the carers, and the family.Aim: A systematic literature review and meta-analysis were undertaken to investigate the effectiveness of person-centered care for people with dementia.Methods: Literature searches were undertaken using six databases including Medline, EMBASE, CINAHL, PsycINFO, Cochrane Database, and KoreaMed using the following keywords: cognition disorder, dementia, person-centered care, patient-centered care, client-centered care, relationship-centered care, and dementia care. The searches were limited to interventional studies written in English and Korean and included randomized controlled studies and noncontrolled studies for people with dementia living in any setting.Results: Nineteen interventional studies, including 3,985 participants, were identified. Of these, 17 studies were from long-term care facilities and two studies were from homecare settings. The pooled data from randomized controlled studies favored person-centered care in reducing agitation, neuropsychiatric symptoms, and depression and improving the quality of life. Subgroup analysis identified greater effectiveness of person-centered care when implemented for people with less severe dementia. For agitation, short-term interventions had a greater effect (standardized mean difference [SMD]: -0.434; 95% conference interval [CI]: -0.701 to -0.166 than long-term interventions (SMD: -0.098; 95% CI: -0.190 to 0.007. Individualized activities resulted in a significantly greater beneficial effect than standard care (SMD: 0.513; 95% CI: -0.994 to -0.032. However, long-term, staff education, and
Stacpoole, Min; Hockley, Jo; Thompsell, Amanda; Simard, Joyce; Volicer, Ladislav
Increasing numbers of older people with advanced dementia are cared for in care homes. No cure is available, so research focused on improving quality of life and quality of care for people with dementia is needed to support them to live and die well. The Namaste Care programme is a multi-dimensional care program with sensory, psycho-social and spiritual components intended to enhance quality of life and quality of care for people with advanced dementia. The aim of the study was to establish whether the Namaste Care program can be implemented in UK care homes; and what effect Namaste Care has on the quality of life of residents with advanced dementia, their families and staff. This article explores the qualitative findings of the study, reporting the effect of the programme on the families of people with advanced dementia and care home staff, and presenting their perceptions of change in care. An organisational action research methodology was used. Focus groups and interviews were undertaken pre/post implementation of the Namaste Care program. The researcher kept a reflective diary recording data on the process of change. A comments book was available to staff and relatives in each care home. Data was analysed thematically within each care home and then across all care homes. Six care homes were recruited in south London: one withdrew before the study was underway. Of the five remaining care homes, four achieved a full Namaste Care program. One care home did not achieve the full program during the study, and another discontinued Namaste Care when the study ended. Every home experienced management disruption during the study. Namaste Care challenged normal routinised care for older people with advanced dementia. The characteristics of care uncovered before Namaste was implemented were: chaos and confusion, rushing around, lack of trust, and rewarding care. After the programme was implemented these perceptions were transformed, and themes of calmness, reaching out to
Goldsteen, M.; Abma, T.; Oeseburg, B.; Verkerk, M.; Verhey, F.; Widdershoven, G.
This article concentrates on the care for people who suffer from progressive dementia. Dementia has a great impact on a person's well-being as well as on his or her social environment. Dealing with dementia raises moral issues and challenges for participants, especially for family members. One of
Booker, Anke; Jacob, Louis Ec; Rapp, Michael; Bohlken, Jens; Kostev, Karel
Dementia is a psychiatric condition the development of which is associated with numerous aspects of life. Our aim was to estimate dementia risk factors in German primary care patients. The case-control study included primary care patients (70-90 years) with first diagnosis of dementia (all-cause) during the index period (01/2010-12/2014) (Disease Analyzer, Germany), and controls without dementia matched (1:1) to cases on the basis of age, sex, type of health insurance, and physician. Practice visit records were used to verify that there had been 10 years of continuous follow-up prior to the index date. Multivariate logistic regression models were fitted with dementia as a dependent variable and the potential predictors. The mean age for the 11,956 cases and the 11,956 controls was 80.4 (SD: 5.3) years. 39.0% of them were male and 1.9% had private health insurance. In the multivariate regression model, the following variables were linked to a significant extent with an increased risk of dementia: diabetes (OR: 1.17; 95% CI: 1.10-1.24), lipid metabolism (1.07; 1.00-1.14), stroke incl. TIA (1.68; 1.57-1.80), Parkinson's disease (PD) (1.89; 1.64-2.19), intracranial injury (1.30; 1.00-1.70), coronary heart disease (1.06; 1.00-1.13), mild cognitive impairment (MCI) (2.12; 1.82-2.48), mental and behavioral disorders due to alcohol use (1.96; 1.50-2.57). The use of statins (OR: 0.94; 0.90-0.99), proton-pump inhibitors (PPI) (0.93; 0.90-0.97), and antihypertensive drugs (0.96, 0.94-0.99) were associated with a decreased risk of developing dementia. Risk factors for dementia found in this study are consistent with the literature. Nevertheless, the associations between statin, PPI and antihypertensive drug use, and decreased risk of dementia need further investigations.
Murphy, Jane L; Holmes, Joanne; Brooks, Cindy
There is a growing volume of research to offer improvements in nutritional care for people with dementia living in nursing homes. Whilst a number of interventions have been identified to support food and drink intake, there has been no systematic research to understand the factors for improving nutritional care from the perspectives of all those delivering care in nursing homes. The aim of this study was to develop a research informed model for understanding the complex nutritional problems associated with eating and drinking for people with dementia. We conducted nine focus groups and five semi-structured interviews with those involved or who have a level of responsibility for providing food and drink and nutritional care in nursing homes (nurses, care workers, catering assistants, dietitians, speech and language therapists) and family carers. The resulting conceptual model was developed by eliciting care-related processes, thus supporting credibility from the perspective of the end-users. The seven identified domain areas were person-centred nutritional care (the overarching theme); availability of food and drink; tools, resources and environment; relationship to others when eating and drinking; participation in activities; consistency of care and provision of information. This collaboratively developed, person-centred model can support the design of new education and training tools and be readily translated into existing programmes. Further research is needed to evaluate whether these evidence-informed approaches have been implemented successfully and adopted into practice and policy contexts and can demonstrate effectiveness for people living with dementia.
Chaaya, Monique; Phung, Kieu; Atweh, Samir
The burden on and mental well-being of family carers for the elderly, especially those with dementia, has been well studied in high-income countries and to a lesser extent in the Arab region. Our study of Lebanese carers highlights the importance of considering the psychological well......-being of the family carer, and the role of dementia and depression in increasing the burden of care. Psychosocial interventions have produced equivocal results and therefore customised and contextualised interventions need to be researched. Greater understanding of the coping mechanisms used by carers is required...
Elliott, Kate-Ellen J; Scott, Jennifer L; Stirling, Christine; Martin, Angela J; Robinson, Andrew
Dementia increasingly impacts every health and social care system in the world. Preparing the dementia care workforce is therefore paramount, particularly in light of existing problems of staff retention and turnover. Training interventions will need to increase worker and organizational capacity to deliver effective patient care. It is not clear which training interventions best enhance workers' capacity. A review of the evidence for dementia care training interventions to enhance worker capacity and facilitate organizational change is presented. A systematic literature review was conducted. All selected randomized intervention studies aimed to enhance some aspect of dementia care worker or workforce capacity such as knowledge of dementia, psychological well-being, work performance, and organizational factors such as retention or service delivery in dementia care. Seventy-four relevant studies were identified, but only six met inclusion criteria for the review. The six studies selected focused on worker and organizational outcomes in dementia care. All interventions were multi-component with dementia education or instructional training most commonly adopted. No interventions were found for the community setting. Variable effects were found for intervention outcomes and methodological concerns are raised. The rigor of scientific research in training interventions that aim to build capacity of dementia care workers is poor and a strong need exists for evaluation and delivery of such interventions in the community sphere. Wider domains of interest such as worker psychological health and well-being need to be examined further, to understand capacity-building in the dementia care workforce.
Full Text Available The objectives of this article are as follows: (1 to describe the assessment protocol used to outline people with probable dementia in Primary Health Care; (2 to show the methodological design and procedure to obtain a representative sample of patients with probable dementia; and (3 to report the main characteristics of the sample collected in the context of the study “Characteristics and needs of people with probable dementia.” The study protocol was based on the “Community Assessment of Risk and Treatment Strategies (CARTS Program” and is composed by a set of instruments that allow the assessment of older adults with probable dementia in several areas (health, psychological, functionality, and other. Descriptive analysis was used to characterize the final sample (n = 436. The study protocol as well as the methodological procedure to obtain the referral of research participants and data collection on the condition of people with probable dementia in Primary Health Care proved to be a valuable tool to obtain a sample of patients distributed by the full range of probable dementia in a large geographical area. Results may allocate the design of care pathways for old people with cognitive disorders to prevent, delay impairment, and/or optimize quality of life of patients.
Kwon, Suhye; Tae, Young Sook
The purpose of the study was to explore and describe the experience of adult Korean children who are caregivers for parents institutionalized with dementia. Participants were fourteen adult children caregivers of elders institutionalized with dementia. Data were collected through in-depth unstructured interviews with individual participants from August to November, 2012. Theoretical sampling was used to the point of theoretical saturation. Data were analyzed using Strauss and Corbin's Grounded Theory Method. From open coding, 67 concepts, 29 sub-categories, and 14 categories were identified. Analysis revealed that the core category of the experience of adult children caring for their parents institutionalized with dementia was 'enduring the role of a prop' consisting of four phases: initial turmoil, exploration, role adjustment, and acclimation. To manage the role of a prop, participants utilized various action/interactional strategies such as overcoming the unfamiliarity, overseeing the nursing home care, and counterbalancing the caring roles. As a result, participants experienced ambivalence towards the existence of parents with dementia, changes in family relationships, altered viewpoint towards nursing homes, and restructuring of life. In-depth understanding of the experience will guide nurses to promote effective interventions in order to better support the Korean family caregivers of parents institutionalized with dementia.
Full Text Available Background/Aims: Around 70,000–80,000 Danes suffer from dementia. As average life expectancy increases, the number of people suffering from dementia is expected to increase in the future with informal care provided by family and friends becoming more important. The aim of this study was to estimate the time spent by family and friends on informal care of persons suffering from dementia in a Danish setting and calculate the economic implications. Methods: Information on informal care time was collected in a postal survey of members of the Danish Alzheimer’s Association. Data from 469 informal caregivers were obtained corresponding to an adjusted response rate of 62%. Results: On a typical day, informal care time was 4.97–6.91 h for primary caregivers and 0.70–1.06 h for other caregivers. Using the proxy good method to value informal care, daily costs ranged between EUR 160 and 223 for primary caregivers and between EUR 23 and 34 for others. Conclusion: Informal care delivered by family and friends is significant. The value of informal care constitutes an important part of the societal cost of dementia in Denmark.
Foley, Tony; Boyle, Siobhán; Jennings, Aisling; Smithson, W Henry
Rising dementia prevalence rates rise combined with the policy objective of enabling people with dementia to remain living at home, means that there will be a growing demand for dementia care in the community setting. However, GPs are challenged by dementia care and have identified it as an area in which further training is needed. Previous studies of GPs dementia care educational needs have explored the views of GPs alone, without taking the perspectives of people with dementia and family carers into account. The aim of the study was to explore GPs' dementia care educational needs, as viewed from multiple perspectives, in order to inform the design and delivery of an educational programme for GPs. A qualitative study of GPs, people with dementia and family carers in a community setting was undertaken. Face-to-face interviews were performed with GPs, people with dementia and with family carers. Interviews were audio-recorded, transcribed verbatim and thematically analysed. Thirty-one people were interviewed, consisting of fourteen GPs, twelve family carers and five people with dementia. GPs expressed a wish for further education, preferentially through small group workshops. Five distinct educational needs emerged from the interviews, namely, diagnosis, disclosure, signposting of local services, counselling and the management of behavioural and psychological symptoms (BPSD). While GPs focused on diagnosis, disclosure and BPSD in particular, people with dementia and family carers emphasised the need for GPs to engage in counselling and signposting of local services. The triangulation of data from multiple relevant sources revealed a broader range of GPs' educational needs, incorporating both medical and social aspects of dementia care. The findings of this study will inform the content and delivery of a dementia educational programme for GPs that is practice-relevant, by ensuring that the curriculum meets the needs of GPs, patients and their families.
Brazil, Kevin; Carter, Gillian; Cardwell, Chris; Clarke, Mike; Hudson, Peter; Froggatt, Katherine; McLaughlin, Dorry; Passmore, Peter; Kernohan, W George
In dementia care, a large number of treatment decisions are made by family carers on behalf of their family member who lacks decisional capacity; advance care planning can support such carers in the decision-making of care goals. However, given the relative importance of advance care planning in dementia care, the prevalence of advance care planning in dementia care is poor. To evaluate the effectiveness of advance care planning with family carers in dementia care homes. Paired cluster randomized controlled trial. The intervention comprised a trained facilitator, family education, family meetings, documentation of advance care planning decisions and intervention orientation for general practitioners and nursing home staff. A total of 24 nursing homes with a dementia nursing category located in Northern Ireland, United Kingdom. Family carers of nursing home residents classified as having dementia and judged as not having decisional capacity to participate in advance care planning discussions. The primary outcome was family carer uncertainty in decision-making about the care of the resident (Decisional Conflict Scale). There was evidence of a reduction in total Decisional Conflict Scale score in the intervention group compared with the usual care group (-10.5, 95% confidence interval: -16.4 to -4.7; p planning was effective in reducing family carer uncertainty in decision-making concerning the care of their family member and improving perceptions of quality of care in nursing homes. Given the global significance of dementia, the implications for clinicians and policy makers include them recognizing the importance of family carer education and improving communication between family carers and formal care providers.
Lamar, Katherine L.; Luke, Jessica J.
The purpose of this study was to describe the impacts of art museum-based dementia programming on participating care partners (CPs). Data were collected through telephone interviews with 29 caregivers who participated in one of three dementia programs: "here: now" at The Frye Art Museum, Seattle; "Meaningful Moments" at the…
Borson, Soo; Frank, Lori; Bayley, Peter J.; Boustani, Malaz; Dean, Marge; Lin, Pei-Jung; McCarten, J. Riley; Morris, John C.; Salmon, David P.; Schmitt, Frederick A.; Stefanacci, Richard G.; Mendiondo, Marta S.; Peschin, Susan; Hall, Eric J.; Fillit, Howard; Ashford, J. Wesson
The value of screening for cognitive impairment, including dementia and Alzheimer's disease, has been debated for decades. Recent research on causes of and treatments for cognitive impairment has converged to challenge previous thinking about screening for cognitive impairment. Consequently, changes have occurred in health care policies and priorities, including the establishment of the annual wellness visit, which requires detection of any cognitive impairment for Medicare enrollees. In response to these changes, the Alzheimer's Foundation of America and the Alzheimer's Drug Discovery Foundation convened a workgroup to review evidence for screening implementation and to evaluate the implications of routine dementia detection for health care redesign. The primary domains reviewed were consideration of the benefits, harms, and impact of cognitive screening on health care quality. In conference, the workgroup developed 10 recommendations for realizing the national policy goals of early detection as the first step in improving clinical care and ensuring proactive, patient-centered management of dementia. PMID:23375564
Armando Carlos Roca Socarrás
Full Text Available Dementia is a long and debilitating illness characterized by gradual loss of autonomy and abilities, reaching a point of marked cognitive impairment and dependence. In different stages of its progression, a considerable number of elderlies with dementia are admitted in Nursing Homes. The objective of this article is to highlight some elements in relation to the epidemiology, institutionalization predictors, diagnostic, comorbidity and specific aspects of the care and treatment that allow personalizing its management in these residences. Thus, knowledge levels on this disease will be increased and the treatment and life quality of aged population with dementia will be improved.
Brijnath, Bianca; Manderson, Lenore
In India, care work for people in late-stage dementia is primarily conducted in the home. Using source material from urban India and drawing on Foucauldian theory, we illustrate the significance of three power/knowledge scripts in this context: social and cultural notions of acceptable, public bodies; medicalized forms of care; and the cultural contexts of the individual caregivers. The caregiver is the embodiment of these discourses and is charged with the task of mapping discipline onto inherently undisciplinable bodies. A tension exists between the caregiver's struggle to contain the unruliness of the person with dementia and, simultaneously, to act as a broker between the world of the care-recipient and the social world. We conclude that although the caregiver is the starting point for the exercise of discipline, the three power/knowledge scripts that inform care work are as much about surveying, routinizing and mobilizing caregivers' bodies as they are about disciplining the bodies of people with dementia.
Ishii, Shirou; Shishido, Fumio; Miyajima, Masayuki; Sakuma, Koutarou; Shigihara, Takeshi; Tameta, Tadanobu; Miyazaki, Makoto; Kuroda, Hiroshi
We investigated the ability to discriminate between Alzheimer's disease (AD) and vascular dementia (VaD), and between AD and non-dementia using the program ''easy Z score imaging system'' (eZIS) developed by Matsuda et al., for the diagnosis of very early AD. Of 201 patients, we investigated 12 patients with AD, 10 with VaD, and 9 with non-dementia, who underwent brain perfusion single-photon emission computed tomography by technetium-99m ethyl cysteinate dimer ( 99m Tc-ECD) between February 2005 and September 2006. The sensitivity and specificity of the indicators of specific volume of interest (VOI) analysis, namely, severity, extent, and ratio were evaluated for the distinction of AD from VaD and non-dementia. There was a significant difference in all the criteria for severity, extent, and ratio between AD and non-dementia cases and in the ratio between AD and VaD. Between AD and non-dementia, the sensitivity and specificity of severity were 100% and 45%, respectively, using the cutoff value of 1.19. When using the cutoff value of 14.2 for extent, the sensitivity and specificity were both 100%. Using the cutoff value of 2.22 for ratio, the sensitivity of 42% and specificity of 100% were demonstrated. When comparing AD with VaD, using the cutoff value of 2.22 for ratio, the sensitivity and specificity were 42% and 100%, respectively. Using the cutoff value of 1.5 for ratio, the sensitivity and specificity between AD and VaD were 92% and 80%, respectively, thereby showing the best results. The specific VOI analysis program of AD using specific voxel-based Z score maps is not influenced by interobserver differences among radiologists and is useful to discriminate AD from VaD and non-dementia. However, the setting of the cutoff value at each institution and comparison with original and eZIS images are suggested to distinguish better AD from VaD. (author)
Elliott, Kate?Ellen J.; Stirling, Christine M.; Martin, Angela J.; Robinson, Andrew L.; Scott, Jennifer L.
Abstract Background Research on workforce development for high?quality dementia care more often focuses on enhancing employee knowledge and skill and less on managing employee stress and coping at work. Objective To review employee stress and coping in response to high job demands in community?based dementia care organizations in Tasmania, Australia. Methods Stress and coping in response to job roles of 25 community?based dementia care workers were reviewed using self?report questionnaire dat...
Scales, Kezia; Bailey, Simon; Middleton, Joanne; Schneider, Justine
The social positioning and treatment of persons with dementia reflects dominant biomedical discourses of progressive and inevitable loss of insight, capacity, and personality. Proponents of person-centred care, by contrast, suggest that such loss can be mitigated within environments that preserve rather than undermine personhood. In formal organisational settings, person-centred approaches place particular responsibility on 'empowered' direct-care staff to translate these principles into practice. These staff provide the majority of hands-on care, but with limited training, recognition, or remuneration. Working within a Foucauldian understanding of power, this paper examines the complex ways that dementia care staff engage with their own 'dis/empowerment' in everyday practice. The findings, which are drawn from ethnographic studies of three National Health Service (NHS) wards and one private care home in England, are presented as a narrative exploration of carers' general experience of powerlessness, their inversion of this marginalised subject positioning, and the related possibilities for action. The paper concludes with a discussion of how Foucault's understanding of power may help define and enhance efforts to empower direct-care staff to provide person-centred care in formal dementia care settings. © 2016 Foundation for the Sociology of Health & Illness.
Full Text Available Virginia Painter,1 David G Le Couteur,1–3 Louise M Waite1–3 1Aged and Chronic Care Department, Concord Repatriation General Hospital, Concord, NSW, Australia; 2Ageing and Alzheimer’s Institute, Concord Repatriation General Hospital, Concord, NSW, Australia; 3Centre for Education and Research on Ageing, University of Sydney, Concord, NSW, Australia Introduction: Dysphagia is common in people living with dementia and associated with increased risk of aspiration pneumonia, dehydration, malnutrition, and death. Treatment options are limited and the use of texture-modified food and fluids (TMF is a widespread clinical practice. This review aimed to evaluate the evidence for TMF in dementia.Methods: A literature search using terms “dysphagia,” “texture-modified food and fluids,” “dementia,” and “aged care” was performed by using three electronic databases from 1990 to March 2017. Studies were assessed for suitability, then reviewed with data extracted, and grouped by categories of outcome measures.Results: A total of 3,722 publications were identified, and 22 studies met the inclusion criteria. Studies were heterogeneous in design and methodology. There were no publications examining dementia exclusively; however, many subjects with dementia were included in studies of residential aged care facilities. TMF reduced the risk of aspiration seen on videofluoroscopy but not clinical aspiration and pneumonia. TMF was associated with lower daily energy and fluid intake and variable adherence.Conclusion: There is a lack of evidence for people living with dementia and in residential care facilities that TMF improves clinical outcomes such as aspiration pneumonia, nutrition, hydration, morbidity, and mortality. Adverse effects including poorer energy and fluid intake were identified. Keywords: modified diet, dysphagia, aspiration, aged care, nursing homes, dehydration, nutrition
The ethics of care is an emerging field of interest in many disciplines, including care for people with dementia. The ethics of care as proposed by Joan Tronto is a political argument for care together with a set of principles, the integrity of care, to guide and critique practice. This two-pronged approach enables on one hand, a political, complex and situated examination of inequality, and on the other hand the integrity of care provides a set of principles to guide inclusive citizenship practices. This approach has the significant advantage of recognition of the fight that people with dementia face to achieve rights and citizenship as an issue of social justice. In this paper, three challenges to citizenship are discussed in relation to people with dementia using an ethics of care lens: (a) citizenship as a relationship between the individual and the state; (b) citizenship as a practice and (c) citizenship as identity and belonging. I propose that citizenship can be achieved by promoting inclusion in defining and creating policy, research and practice. © The Author(s) 2016.
Samus, Quincy M; Black, Betty Smith; Bovenkamp, Diane; Buckley, Michael; Callahan, Christopher; Davis, Karen; Gitlin, Laura N; Hodgson, Nancy; Johnston, Deirdre; Kales, Helen C; Karel, Michele; Kenney, John Jay; Ling, Shari M; Panchal, Maï; Reuland, Melissa; Willink, Amber; Lyketsos, Constantine G
A national consensus panel was convened to develop recommendations on future directions for home-based dementia care (HBDC). The panel summarized advantages and challenges of shifting to HBDC as the nexus of care and developed consensus-based recommendations. The panel developed five core recommendations: (1) HBDC should be considered the nexus of new dementia models, from diagnosis to end of life in dementia; (2) new payment models are needed to support HBDC and reward integration of care; (3) a diverse new workforce that spans the care continuum should be prepared urgently; (4) new technologies to promote communication, monitoring/safety, and symptoms management must be tested, integrated, and deployed; and (5) targeted dissemination efforts for HBDC must be employed. HBDC represents a promising paradigm shift to improve care for those living with dementia and their family caregivers: these recommendations provide a framework to chart a course forward for HBDC. Copyright © 2017 the Alzheimer's Association. All rights reserved.
Wood, Wendy; Fields, Beth; Rose, Michelle; McLure, Merinda
The authors mapped the literature on animal-assisted therapies (AATs) and institutionalized adults with dementia onto the Lived Environment Life Quality (LELQ) Model as a guide for future services and research. Refereed literature addressing AATs and institutionalized people with dementia was comprehensively gathered, described, categorized, and synthesized in this systematic mapping review. From 1,342 screened records, the authors included 10 research articles that incorporated dogs in therapy for institutionalized adults with dementia. These canine-assisted therapies offered occupational opportunities and environmental supports conducive to experiences of relative well-being, occupational engagement, and optimal functioning. The findings offer proof of the concept that canine-assisted therapies are feasible and can elicit positive quality-of-life experiences in institutionalized people with dementia. Researchers and practitioners need to elucidate the theoretical foundations of AATs. The LELQ Model may serve as a guide for client-centered, occupation-focused, and ecologically valid approaches to animal-assisted occupational therapy. Copyright © 2017 by the American Occupational Therapy Association, Inc.
Full Text Available Ponnusamy Subramaniam,1 Bob Woods2 1Health Psychology Programme, University Kebangsaan Malaysia, Kuala Lumpur, Malaysia; 2Dementia Services Development Centre Wales, Bangor University, Bangor, Gwynedd, UK Background and aim: There is increasing interest in using information and communication technology to help older adults with dementia to engage in reminiscence work. Now, the feasibility of such approaches is beginning to be established. The purpose of this study was to establish an evidence-base for the acceptability and efficacy of using multimedia digital life storybooks with people with dementia in care homes, in comparison with conventional life storybooks, taking into account the perspectives of people with dementia, their relatives, and care staff.Methods: Participatory design was used to create a life story movie based on a previously completed conventional life storybook with six older adults with dementia (four females; mean age 82 years. Relatives were involved in helping the participant to provide additional information and materials for the digital life storybook. In this multiple case study design, both quantitative and qualitative approaches were used. For quantitative purposes, a set of questionnaires that had been completed three times before and after the conventional life storybook was developed were repeated 4 weeks after the life story movie was completed. Semistructured interview questions were designed to collect feedback from participants, relatives, and care staff.Results: The result indicated that five of the six participants showed additional improvement in measures of quality of life and autobiographical memory. All participants showed improvement or stability in depression scores. Thematic analysis showed that, participants, relatives, and care home staff viewed digital life storybooks as a very useful tool triggering memories and (largely positive emotions. Participants’ case vignettes were presented to
Full Text Available BACKGROUND: Current approaches for AD prediction are based on biomarkers, which are however of restricted availability in primary care. AD prediction tools for primary care are therefore needed. We present a prediction score based on information that can be obtained in the primary care setting. METHODOLOGY/PRINCIPAL FINDINGS: We performed a longitudinal cohort study in 3.055 non-demented individuals above 75 years recruited via primary care chart registries (Study on Aging, Cognition and Dementia, AgeCoDe. After the baseline investigation we performed three follow-up investigations at 18 months intervals with incident dementia as the primary outcome. The best set of predictors was extracted from the baseline variables in one randomly selected half of the sample. This set included age, subjective memory impairment, performance on delayed verbal recall and verbal fluency, on the Mini-Mental-State-Examination, and on an instrumental activities of daily living scale. These variables were aggregated to a prediction score, which achieved a prediction accuracy of 0.84 for AD. The score was applied to the second half of the sample (test cohort. Here, the prediction accuracy was 0.79. With a cut-off of at least 80% sensitivity in the first cohort, 79.6% sensitivity, 66.4% specificity, 14.7% positive predictive value (PPV and 97.8% negative predictive value of (NPV for AD were achieved in the test cohort. At a cut-off for a high risk population (5% of individuals with the highest risk score in the first cohort the PPV for AD was 39.1% (52% for any dementia in the test cohort. CONCLUSIONS: The prediction score has useful prediction accuracy. It can define individuals (1 sensitively for low cost-low risk interventions, or (2 more specific and with increased PPV for measures of prevention with greater costs or risks. As it is independent of technical aids, it may be used within large scale prevention programs.
McCallion, Philip; Hogan, Mary; Santos, Flavia H.; McCarron, Mary; Service, Kathryn; Stemp, Sandy; Keller, Seth; Fortea, Juan; Bishop, Kathleen; Watchman, Karen; Janicki, Matthew P.
Background: Adults with intellectual disability are affected by dementia at equivalent and elevated rates, many surviving into advanced age. End of life care and support considerations come into play among these individuals when most are in the advanced stage of dementia. Methods: A preliminary report summarizing available literature and making…
Mileski, Michael; Scott Kruse, Clemens; Brooks, Matthew; Haynes, Christine; Collingwood, Ying; Rodriguez, Rachel
Military veterans diagnosed with dementia compose a large portion of our population. Often ignored are their caregivers and their plight as well as the availability, quality, and accessibility of health care for this demographic. The purpose of this systematic literature review is three fold: to identify opportunities available to increase public awareness on the subject; to identify areas of improvement in the level of care and quality of life for our nation's veterans; and to identify if adequate resources are available to veterans with dementia and their caregivers. The authors conducted systematic searches of three databases: PubMed via The National Center for Biotechnology Information, the Cumulative Index of Nursing and Allied Health Literature (CINAHL) Complete via Ebson B. Stephens Company (EBSCO Host), and Google. Data were collected regarding providing care to veterans who are suffering from dementia or Alzheimer's disease and their caregivers between 2008 and June 2016. Search results were filtered by date range, full text, English language, Boolean operators, and academic journals (n = 14). The review confirmed there are many facilitators and barriers in the coordination of care offered to veterans with dementia. Facilitators of quality care include veteran's expectations, family support, program development, and the availability of services. These positive aspects are aided by several community-based support services, new technology, and preventative care. Barriers are caregiver expectations, coordination of care, providers, and informal and formal costs. These negative facets are due to lack of educational resources, an increased veteran population diagnosed with dementia, limited knowledge of resources, and limited medical service in rural areas. Overall, there are a number of community programs that want to, and can, help veterans with dementia. There are also a number of ways to help veterans with dementia cope with their issues, which include
Full Text Available Background: Community-based and institutional dementia care has been compared in cross-sectional studies, but longitudinal information on the effect of institutionalization on health care service utilization is sparse. Methods: We analyzed claims data from 651 dementia patients via Generalized Estimation Equations to assess health care service utilization profiles and corresponding expenditures from four quarters before to four quarters after institutionalization. Results: In all domains, utilization increased in the quarter of institutionalization. Afterwards, the use of drugs, medical aids, and non-physician services (e.g., occupational therapy and physiotherapy remained elevated, but use of in- and outpatient treatment decreased. Cost of care showed corresponding profiles. Conclusion: Institutional dementia care seems to be associated with an increased demand for supportive services but not necessarily for specialized medical care.
Sellevold, Gerd Sylvi; Egede-Nissen, Veslemøy; Jakobsen, Rita; Sørlie, Venke
Many nursing homes appear as multicultural workplaces where the majority of healthcare providers have an ethnic minority background. This environment creates challenges linked to communication, interaction and cultural differences. Furthermore, the healthcare providers have varied experiences and understanding of what quality care of patients with dementia involves. The aim of this study is to illuminate multi-ethnic healthcare providers' lived experiences of their own working relationship, and its importance to quality care for people with dementia. The study is part of a greater participatory action research project: 'Hospice values in the care for persons with dementia'. The data material consists of extensive notes from seminars, project meetings and dialogue-based teaching. The text material was subjected to phenomenological-hermeneutical interpretation. Participants and research context: Participants in the project were healthcare providers working in a nursing home unit. The participants came from 15 different countries, had different formal qualifications, varied backgrounds and ethnic origins. Ethical considerations: The study is approved by the Norwegian Regional Ethics Committee and the Norwegian Social Science Data Services. The results show that good working relationships, characterized by understanding each other's vulnerability and willingness to learn from each other through shared experiences, are prerequisites for quality care. The healthcare providers further described ethical challenges as uncertainty and different understandings. The results are discussed in the light of Lögstrup's relational philosophy of ethics and the concepts of vulnerability, ethic responsibility, trust and openness of speech. The prerequisite for quality care for persons with dementia in a multicultural working environment is to create arenas for open discussions between the healthcare providers. Leadership is of great importance.
Jakobsen, Rita; Sørlie, Venke
To meet and take care of people with dementia implicate professional and moral challenges for caregivers. Using force happens daily. However, staff also encounter challenges with the management in the units. Managing the caretaking function is also significant in how caretakers experience working in dementia care. The purpose of this study is to explore the caregiver's experiences with ethical challenges in dementia care settings and the significance of professional leadership in this context. The design is qualitative, and data appear through narrative interviews. A total of 23 caretakers participated in the study. The transcribed interviews were subjected to a phenomenological-hermeneutical interpretation. The respondents signed an informed consent for participation prior to the interviews. They were assured anonymity and confidentiality in the publication of the data. Ricoeur's method for interpretation ensures anonymity as the researcher relates to the data as one collective text. The study is part of a larger research project in ethics, in its entirety approved in line with the Helsinki Convention. The findings show that the caretakers experienced inadequacy. Some of them described a negative work atmosphere where they experienced that their leaders did not take them seriously. Because of this, informal negative sub-groups functioned as an exclusive debriefing arena. Some of the informants described the opposite experience where the leaders actively supported them. The analyses of the findings are discussed in light of the concepts of trust and mistrust in leadership. There is a correlation between the leadership and the caregivers' experience of being in difficult situations. © The Author(s) 2015.
Mitchell, Janet I; Long, Janet C; Braithwaite, Jeffrey; Brodaty, Henry
Dementia is a syndrome associated with stigma and social isolation. Forty-two percent of people with dementia in the United States and almost 40% in the United Kingdom live in assisted living and residential care facilities. Up to 90% of residents with dementia experience behavioral and psychological symptoms of dementia (BPSD). Currently psychotropic drugs are often used to manage BPSD, despite the drugs' limited efficacy and adverse effects. Even though psychosocial approaches are as effective as medical ones without side effects, their uptake has been slow. Social networks that investigate the structure of relationships among residents and staff may represent an important resource to increase the uptake of psychosocial approaches and facilitate improvements in care. To conduct a systematic review of social network studies set in long-term care (LTC), including residents with dementia, and identify network factors influencing the care available to residents. Peer-reviewed articles across CINAHL, EMBASE, IBSS, Medline, PsychInfo, Scopus, and Web of Science were searched from January 1994 to December 2014 inclusive, using PRISMA guidelines. Studies included those examining social networks of residents or staff in LTC. Nine articles from studies in the United States, Europe, Asia, and Australia met search criteria. Resident networks had few social connections. One study proposed that residents with high centrality be encouraged to welcome new residents and disseminate information. The high density in 2 staff network studies was associated with the cooperation needed to provide care to residents with dementia. Staff's boundary-spanning led to higher-status nurses becoming more involved in decision-making and problem-solving in one study. In another, the outcome was staff treating residents with more respect and actively caring for them. These studies suggest interventions using a network approach may improve care services in LTC. Copyright © 2016 AMDA – The
Buse, Christina; Twigg, Julia
This paper explores how the materiality of dress mediates and shapes practices of care in the context of dementia. Earlier research called for an approach to conceptualising care that recognised the role played by everyday artefacts. We extend this to a consideration of dress and dressing the body in relation to people with dementia that involves the direct manipulation of material objects, as well as the materiality of bodies. The paper draws on an ESRC funded study Dementia and Dress, which examined experiences of dress for people with dementia, families and care-workers using ethnographic and qualitative methods. Our analysis explores the process of dressing the body, the physicality of guiding and manipulating bodies into clothing, dealing with fabrics and bodies which 'act back' and are resistant to the process of dressing. We consider how the materiality of clothing can constrain or enable practices of care, exploring tensions between garments that support ease of dressing and those that sustain identity. Examining negotiations around dress also reveals tensions between competing 'logics' of care (Mol ). © 2018 The Authors. Sociology of Health & Illness published by John Wiley & Sons Ltd on behalf of Foundation for SHIL.
Bass, David M; Judge, Katherine S; Snow, A Lynn; Wilson, Nancy L; Morgan, Robert; Looman, Wendy J; McCarthy, Catherine A; Maslow, Katie; Moye, Jennifer A; Randazzo, Ronda; Garcia-Maldonado, Maurilio; Elbein, Richard; Odenheimer, Germaine; Kunik, Mark E
The objective is to test the effectiveness of Partners in Dementia Care (PDC), a care-coordination program that integrates and improves access to medical and nonmedical services, while strengthening the informal care network and providing information, coaching, and emotional support. PDC was delivered via a partnership between Veterans Affairs (VA) Medical Centers (VAMCs) and Alzheimer's Association chapters, for caregivers of veterans with dementia living in the community and receiving primary care from the VA. The initial sample was 486 caregivers of 508 veterans with diagnosed dementia. Outcomes were evaluated for 394 and 324 caregivers who completed 6- and 12- month follow-up, respectively. PDC had a standardized protocol that included assessment and reassessment, action planning, and ongoing monitoring. It was delivered by telephone and e-mail for cost efficiency and the ability to handle caseloads of 100 to 125. Care coordinators from VAMCs and Alzheimer's Association chapters worked as a team using a shared computerized record. A variety of caregiver outcomes was measured after 6 and 12 months. Intervention group caregivers had significant improvements in outcomes representing unmet needs, three types of caregiver strains, depression, and two support resources. Most improvements were evident after 6 months, with more-limited improvements from Months 6 to 12. Some outcomes improved for all caregivers, whereas some improved for caregivers experiencing more initial difficulties or caring for veterans with more-severe impairments. PDC is a promising model that improves linkages between healthcare services and community services, which is a goal of several new national initiatives such as the National Plan to Address Alzheimer's Disease and a proposed amendment to the Older Americans Act. © 2013, Copyright the Authors Journal compilation © 2013, The American Geriatrics Society.
Garden, Gill; Green, Suzanne; Pieniak, Susan; Gladman, John
People with dementia have worse outcomes associated with hospital admission, are more likely to have interventions and are less likely to be offered palliative care than people without dementia. Advance care planning for care home residents has been shown to reduce hospital admissions without increasing mortality. Studies have shown that staff confidence in managing delirium, a common reason for admission, improves with training. A service combining education for care home staff and advance care planning for care home residents with dementia was introduced to care homes in Boston, UK. There were improvements in staff confidence in recognition, prevention, management and knowledge of factors associated with delirium and dysphagia. 92% of carers rated the service >9/10. Admissions fell by 37% from baseline in the first year and 55% in the second and third years. All but one resident died in the preferred place of care. © 2016 Royal College of Physicians.
McSweeney, Kate; Jeffreys, Aimee; Griffith, Joanne; Plakiotis, Chris; Kharsas, Renee; O'Connor, Daniel W
This cluster randomized controlled trial sought to determine whether multidisciplinary specialist mental health consultation was more effective than care as usual in treating the depression of aged care residents with dementia. Three hundred and eighty nine aged care residents were screened for dementia and major depression. Forty four were ultimately included in the intervention sample, selected from 20 aged care facilities located in Melbourne, Australia. Facilities were randomly allocated to an intervention condition involving the provision of multidisciplinary specialist consultation regarding the best-practice management of depression in dementia, or to a care as usual condition. Consultations involved individually tailored medical and psychosocial recommendations provided to care staff and general practitioners. All residents participated in a comprehensive pre-intervention diagnostic assessment, including the administration of the Cornell Scale for Depression in Dementia. This assessment was repeated approximately 15 weeks post-intervention by a rater blind to study condition. Multidisciplinary specialist mental health consultation was significantly more effective than care as usual in treating the clinical depression of aged care residents with dementia (p Depression in Dementia score for the intervention group was 9.47, compared with 14.23 for the control group. In addition, 77% of the intervention group no longer met criteria for major depression. The results of this study suggest that the psychosocial and medical management of depressed aged care residents can be improved by increasing access to specialist mental health consultation. Copyright © 2012 John Wiley & Sons, Ltd.
A whole-systems approach for dementia careDrawing on his 30 years' experience as a nurse, Trevor Adams has written a book on dementia care nursing. Here, he refers to its contents to explain why nurses should look beyond person-centred and relationship-centred care to consider wider social, psychological and biological systems that help construct a more rounded picture of the needs of people with dementia.
The nursing care of people with dementia is carried out mainly by general and mental health nurses, and takes place in a wide variety of settings such as accident and emergency units, orthopaedic wards, people's homes, long- stay wards and day hospitals ( care Services Improvement Partnership (CSIP) 2005 ). My own experience of nursing people with dementia is as a mental health nurse, but my mother developed dementia and this has enabled me to see dementia care nursing from a different angle.
Nakanishi, Miharu; Tei-Tominaga, Maki
Background : Quality improvement initiatives can help nursing homes strengthen psychosocial work environments. The aim of the present study was to examine the association between supportive psychosocial work environment, and professional and organizational characteristics regarding quality improvement initiatives in dementia care. Methods : A paper questionnaire survey was administered to a convenience sample of 365 professional caregivers in 12 special nursing homes in Japan. Psychosocial work environment was assessed using the Social Capital and Ethical Climate at the Workplace Scale to calculate a score of social capital in the workplace, ethical leadership, and exclusive workplace climate. Variables for quality improvement initiatives included type of home (unit-type or traditional), presence of additional benefit for dementia care, and professionalism in dementia care among caregivers evaluated using the Japanese version of the Sense of Competence in Dementia Care Staff Scale. Results : Elevated professionalism and unit-type home were significantly associated with high social capital, strong ethical leadership, and low exclusive workplace climate. The presence of dementia care benefit was not associated with any subscale of psychosocial work environment. Conclusions : Quality improvement initiatives to foster supportive psychosocial work environment should enhance professionalism in dementia care with unit-based team building of professional caregivers in special nursing homes.
Full Text Available Background: Quality improvement initiatives can help nursing homes strengthen psychosocial work environments. The aim of the present study was to examine the association between supportive psychosocial work environment, and professional and organizational characteristics regarding quality improvement initiatives in dementia care. Methods: A paper questionnaire survey was administered to a convenience sample of 365 professional caregivers in 12 special nursing homes in Japan. Psychosocial work environment was assessed using the Social Capital and Ethical Climate at the Workplace Scale to calculate a score of social capital in the workplace, ethical leadership, and exclusive workplace climate. Variables for quality improvement initiatives included type of home (unit-type or traditional, presence of additional benefit for dementia care, and professionalism in dementia care among caregivers evaluated using the Japanese version of the Sense of Competence in Dementia Care Staff Scale. Results: Elevated professionalism and unit-type home were significantly associated with high social capital, strong ethical leadership, and low exclusive workplace climate. The presence of dementia care benefit was not associated with any subscale of psychosocial work environment. Conclusions: Quality improvement initiatives to foster supportive psychosocial work environment should enhance professionalism in dementia care with unit-based team building of professional caregivers in special nursing homes.
Dupuis, Sherry; McAiney, Carrie A; Fortune, Darla; Ploeg, Jenny; Witt, Lorna de
Longstanding concerns about quality care provision, specifically in the area of long-term care, have prompted calls for changing the culture of care to reflect more client-driven and relationship-centred models. Despite an increase in culture change initiatives in both Canada and the United States, there is insufficient information about the theories and approaches that guide culture change. The purpose of this paper is to describe a culture change initiative currently underway in Canada, the Partnerships in Dementia Care Alliance, and the theoretical foundations informing our work. More specifically, we describe how the theoretical and philosophical underpinnings of the Alzheimer Disease and Related Dementias framework, the authentic partnership approach, participatory action research and Appreciative Inquiry have been integrated to guide a culture change process that encourages working collaboratively, thinking and doing differently and re-imagining new possibilities for changing the culture of dementia care. © The Author(s) 2014.
Wiskerke, Esther; Manthorpe, Jill
There is limited research on what family members and frontline care home staff consider to be the best responses to the sexual expression of a person with dementia, whilst at the same time respecting relatives' feelings, managing their possible distress and conflict, and how good practice should be reflected in care home policy and practice guidance. This literature review explored what is known of the views of relatives and care workers of new relationships or sexual intimacy between care home residents with dementia, whilst still married to another person. It reports the findings of searches of three databases undertaken in August 2014 (Medline, Embase and PsychINFO). Nine papers were found relevant to the research question. The following themes emerged from a synthesis of the papers located: sexuality in old age, dementia and sexuality, hyper-sexuality, views regarding sexuality of older people living in care homes, the law, ethics and consent, relationships and communication between care home and relatives, and new relationships or intimacy between residents with dementia. While studies of residents' expression of sexuality and their engaging in sexual behaviour with other resident(s) may be challenging to manage in care home settings and can be emotionally painful or uncomfortable for families, the review found that studies are few in number and span emotional intimacy and distressing behaviour. © The Author(s) 2016.
Background Both Australia and China have a large proportion of people with dementia and the prevalence will triple in Australia and increase five times in China by 2050. The majority of people with dementia are reliant on family caregivers to provide daily care and to maintain the dignity in both countries. As a consequence, caregiver burden has become a major concern because of the negative impact on the care recipients’ and the caregivers’ health. It is strongly recommended that cross-national collaboration should be conducted to share experiences in fighting dementia. The aim of this study was to compare socially and culturally constructed enablers and barriers pertinent to dementia caregivers in one capital city in Australia and one capital city in China through critical reflection on the caregivers’ subjective and objective experiences for the improvement of dementia care services in both countries. Methods Giddens’ Structuration Theory was used as a framework to guide a concurrent mixed methods design with the qualitative strand as a priority. In the qualitative strand, data were collected by focus groups and in-depth interviews while in the quantitative strand, data were collected by questionnaire survey. Results In total 148 caregivers participated in the project with 57 of them from Australia (26 and 31 in the qualitative and quantitative strands respectively) and 91 of them from China (23 and 68 in the qualitative and quantitative strands respectively). Findings from the qualitative and quantitative strands were presented as three categories: A higher objective burden in the Chinese cohort versus a higher subjective burden in the Australian cohort; Unmet need for caregiver support in Australia and China; and Expectations for improving dementia services in Australia and for developing dementia services in China. Conclusions Dementia policy, services and resources need to be grounded on current research evidence in an ever-changing society like
Henwood, Timothy; Neville, Christine; Baguley, Chantelle; Beattie, Elizabeth
Pilot work by our group has demonstrated that aquatic exercise has valuable functional and psychosocial benefits for adults living in the residential aged care setting with dementia. The aim of the currents study was to advance this work by delivering the Watermemories Swimming Club aquatic exercise program to a more representative population of older, institutionalized adults with dementia. The benefits of 12 weeks of twice weekly participation in the Watermemories Swimming Club aquatic exercise program were assessed among an exercise and usual care control group of residential aged care adults with advanced dementia. A battery of physical and psychosocial measures were collected before and after the intervention period, and program implementation was also investigated. Seven residential aged care facilities of 24 approached, agreed to participate and 56 residents were purposefully allocated to exercise or control. Twenty-three participants per group were included in the final analysis. Both groups experienced decreases in skeletal muscle index and lean mass (p exercise stifled losses in muscle strength and transition into sarcopenic. Behavioral and psychological symptoms of dementia and activities of daily living approached significance (p = 0.06) with positive trends observed across other psychosocial measures. This study demonstrates the value of exercise participation, and specifically aquatic exercise in comparison to usual care for older, institutionalized adults with advanced dementia. However, it also highlights a number of barriers to participation. To overcome these barriers and ensure opportunity to residents increased provider and sector support is required.
Shrestha, Srijana; Judge, Katherine S; Wilson, Nancy L; Moye, Jennifer A; Snow, A Lynn; Kunik, Mark E
Financial and legal services are unique needs of persons with dementia and their caregivers. This study examines their need for legal and financial assistance and the kinds of legal and financial services provided within Partners in Dementia Care, a telephone-based, care coordination and support service intervention delivered through a partnership between Veterans Affairs (VA) medical centers and local Alzheimer's Association chapters. Based on comprehensive assessment, and needs prioritization, care coordinators collaboratively planned action steps (specific behavioral tasks) with each caregiver/person with dementia to address the dyad's identified unmet needs. Results show that 51 (54.8%) of 93 dyads reported a need for legal and financial services. Action steps related to legal and financial need included education or assistance with legal services (27.27%), nonhealth-related financial benefits (32.32%), health-related financial benefits (21.21%), financial management/planning (9.09%), and financial support (10.1%). Comparable numbers of action steps were directed to VA (41.4%) and non-VA (58.6%) services.
Full Text Available To investigate whether life-sustaining measures in medical emergency situations are less accepted for an anticipated own future of living with dementia, and to test whether a resource-oriented, in contrast to a deficit-oriented video about the same demented person, would increase the acceptance of such life-saving measures.Experimental study conducted between September 2012 and February 2013.Community dwelling female volunteers living in the region of Bonn, Germany.278 women aged 19 to 89 (mean age 53.4 years.Presentation of a video on dementia care focusing either on the deficits of a demented woman (negative framing, or focusing on the remaining resources (positive framing of the same patient.Approval of life-sustaining treatments in five critical medical scenarios under the assumption of having comorbid dementia, before and after the presentation of the brief videos on care.At baseline, the acceptance of life-sustaining measures in critical medical situations was significantly lower in subjects anticipating their own future life with dementia. Participants watching the resource-oriented film on living with dementia had significantly higher post-film acceptance rates compared to those watching the deficit-oriented negatively framed film. This effect particularly emerges if brief and efficient life-saving interventions with a high likelihood of physical recovery are available (eg, antibiotic treatment for pneumonia.Anticipated decisions regarding life-sustaining measures are negatively influenced by the subjective imagination of living with dementia, which might be shaped by common, unquestioned stereotypes. This bias can be reduced by providing audio-visual information on living with dementia which is not only centred around cognitive and functional losses but also focuses on remaining resources and the apparent quality of life. This is particularly true if the medical threat can be treated efficiently. These findings have implications for the
McCormack, Lynne; Tillock, Katrina; Walmsley, Bruce D
Limited research explores the medical model of residential care in dementia from the family caregiver's perspectives. This study sought subjective interpretations of nine family caregivers who experienced relinquishing their status as primary caregiver to a medical model, dementia care residential setting. Following semi-structured interviews and transcription data was analysed using interpretative phenomenological analysis. One superordinate theme, navigating 'system' control, overarched three subordinate themes: connecting/disconnecting, windows closing, and capacity for sensation. Navigating system control reflected participants' experience of circumnavigating a medical system fraught with hierarchical challenges inclusive of a complex maze of contradictions that appeared threatening, yet appeared comforting; authoritarian, yet often humane. For them, care of self, while advocating for a family member with dementia, required vigilance to manoeuvre a system of care that imposed its uninvited authority at will. Connection/disconnection highlights the enduring struggle for inclusivity in caregiving despite the omnipresent trauma of windows closing. Psychological growth came to these participants through an unexpected capacity for sensation which offered a unique lens to communication with the family member with dementia primarily through sensory exchange. Models of dementia care and therapeutic interventions could inclusively involve dementia family caregivers who may be experiencing traumatic distress, and associated guilt, stigma, loss, and grief. Co-existing psychological wellbeing, however, is possible when family members are encouraged to transition communication to sensory awareness and exchange as windows close.
Stolee, Paul; Hillier, Loretta M; Cook, Sheila; Rockwood, Kenneth
Part of Ontario's strategy on Alzheimer's disease and related dementias (ADRD) was to develop research priorities and recommend strategies for building research capacity. The process to achieve these objectives included an environmental scan, key informant interviews, surveys, and a consensus workshop; this process involved over 100 researchers, clinicians, persons with early dementia, and family caregivers. This article describes the process undertaken, key issues identified, and recommendations for research priorities and for building research capacity; and provides a strategic direction for dementia research in Ontario that is relevant for other jurisdictions. ADRD research in all aspects is required to advance knowledge of ADRD cause, care, and cure; gaps currently exist in understanding effective approaches to care and knowledge transfer. Capacity for high-calibre research hinges on maintaining attractive career paths for researchers, solid infrastructures, and strong partnerships. For research to inform policy and practice, better mechanisms are needed for knowledge exchange.
Groen-van de Ven, Leontine; Smits, Carolien; Oldewarris, Karen; Span, Marijke; Jukema, Jan; Eefsting, Jan; Vernooij-Dassen, Myrra
This prospective multiperspective study provides insight into the decision trajectories of people with dementia by studying the decisions made and related key events. This study includes three waves of interviews, conducted between July 2010 and July 2012, with 113 purposefully selected respondents (people with beginning to advanced stages of dementia and their informal and professional caregivers) completed in 12 months (285 interviews). Our multilayered qualitative analysis consists of content analysis, timeline methods, and constant comparison. Four decision themes emerged-managing daily life, arranging support, community living, and preparing for the future. Eight key events delineate the decision trajectories of people with dementia. Decisions and key events differ between people with dementia living alone and living with a caregiver. Our study clarifies that decisions relate not only to the disease but to living with the dementia. Individual differences in decision content and sequence may effect shared decision-making and advance care planning.
Ericson-Lidman, Eva; Larsson, Lise-Lotte Franklin; Norberg, Astrid
Caring for people with dementia and working in dementia care is described as having both rewarding and unpleasant aspects and has been studied to a minor extent. This study aims to explore care providers' narrated experiences of caring for people with dementia disease (DD) and working in a private not-for-profit residential care facility for people with DD. Nine care providers were interviewed about their experiences, the interviews were recorded, transcribed and analysed using thematic analysis. The analysis revealed that participants were struggling to perform person-centred care, which meant trying to see the person behind the disease, dealing with troublesome situations in the daily care, a two-edged interaction with relatives, feelings of shortcomings and troubled conscience, and the need for improvements in dementia care. The analysis also revealed an ambiguous work situation, which meant a challenging value base, the differently judged work environment, feelings of job satisfaction and the need for a functional leadership and management. The results illuminate participants' positive as well as negative experiences and have identified areas requiring improvements. It seems of great importance to strive for a supportive and attendant leadership, a leadership which aims to empower care providers in their difficult work. Using conscience as a driving force together in the work group may benefit care providers' health. © 2013 Nordic College of Caring Science.
Ampe, Sophie; Sevenants, Aline; Smets, Tinne; Declercq, Anja; Van Audenhove, Chantal
The aims of this study were: to evaluate the advance care planning policy for people with dementia in nursing homes; to gain insight in the involvement of residents with dementia and their families in advance care planning, and in the relationship between the policy and the actual practice of advance care planning. Through advance care planning, nursing home residents with dementia are involved in care decisions, anticipating their reduced decision-making capacity. However, advance care planning is rarely realized for this group. Prevalence and outcomes have been researched, but hardly any research has focused on the involvement of residents/families in advance care planning. Observational cross-sectional study in 20 nursing homes. The ACP audit assessed the views of the nursing homes' staff on the advance care planning policy. In addition, individual conversations were analysed with 'ACP criteria' (realization of advance care planning) and the 'OPTION' instrument (involvement of residents/families). June 2013-September 2013. Nursing homes generally met three quarters of the pre-defined criteria for advance care planning policy. In almost half of the conversations, advance care planning was explained and discussed substantively. Generally, healthcare professionals only managed to involve residents/families on a baseline skill level. There were no statistically significant correlations between policy and practice. The evaluations of the policy were promising, but the actual practice needs improvement. Future assessment of both policy and practice is recommended. Further research should focus on communication interventions for implementing advance care planning in the daily practice. © 2015 John Wiley & Sons Ltd.
The anticipated number of persons with dementia continues to grow, and the US has insufficiently planned to provide and pay for care for this large population. A number of significant clinical trials aiming to prevent or cure dementia, including Alzheimer's disease, have not demonstrated success. Because of the lack of efficacious treatments, and the fact that brain changes associated with dementia may begin decades before symptoms, we can predict that efforts to cure or prevent dementia will not succeed in time for millions of people in the baby boomer generation. Because of the anticipated increase in people suffering with dementia in the coming years, US health policy must address major gaps in how to provide and pay for dementia care. Reliance on Medicaid and Medicare as currently structured will not sustain the necessary care, nor can families alone provide all necessary dementia care. Innovative forms of providing long-term care and paying for it are crucially needed.
Kirkley, Catherine; Bamford, Claire; Poole, Marie; Arksey, Hilary; Hughes, Julian; Bond, John
Ensuring the development and delivery of person-centred care in services providing respite care and short breaks for people with dementia and their carers has a number of challenges for health and social service providers. This article explores the role of organisational culture in barriers and facilitators to person-centred dementia care. As part of a mixed-methods study of respite care and short breaks for people with dementia and their carers, 49 telephone semi-structured interviews, two focus groups (N= 16) and five face-to-face in-depth interviews involving front-line staff and operational and strategic managers were completed in 2006-2007. Qualitative thematic analysis of transcripts identified five themes on aspects of organisational culture that are perceived to influence person-centred care: understandings of person-centred care, attitudes to service development, service priorities, valuing staff and solution-focused approaches. Views of person-centred care expressed by participants, although generally positive, highlight a range of understandings about person-centred care. Some organisations describe their service as being person-centred without the necessary cultural shift to make this a reality. Participants highlighted resource constraints and the knowledge, attitudes and personal qualities of staff as a barrier to implementing person-centred care. Leadership style, the way that managers' support and value staff and the management of risk were considered important influences. Person-centred dementia care is strongly advocated by professional opinion leaders and is prescribed in policy documents. This analysis suggests that person-centred dementia care is not strongly embedded in the organisational cultures of all local providers of respite-care and short-break services. Provider organisations should be encouraged further to develop a shared culture at all levels of the organisation to ensure person-centred dementia care. © 2011 Blackwell Publishing
Kwak, Jung; De Larwelle, Jessica A; Valuch, Katharine O'Connell; Kesler, Toni
Health care proxies make important end-of-life decisions for individuals with dementia. A cross-sectional survey was conducted to examine the role of advance care planning in proxy decision making for 141 individuals with cognitive impairment, Alzheimer's disease, or other types of dementia. Proxies who did not know the preferences of individuals with dementia for life support treatments reported greater understanding of their values. Proxies of individuals with dementia who did not want life support treatments anticipated receiving less support and were more uncertain in decision making. The greater knowledge proxies had about dementia trajectory, family support, and trust of physicians, the more informed, clearer, and less uncertain they were in decision making. In addition to advance care planning, multiple factors influence proxy decision making, which should be considered in developing interventions and future research to support informed decision making for individuals with dementia and their families. Copyright 2016, SLACK Incorporated.
Full Text Available Carmelle Peisah,1–3 Judith Weaver,1 Lisa Wong,1 Julie-Anne Strukovski1 1Behaviour Assessment Management Service, Specialist Mental Health Services for Older People, Mental Health Drug and Alcohol, Northern Sydney Local Health District, 2University of Sydney, 3University of NSW, Sydney, NSW, Australia Background: Pain is common in older people, particularly those in residential aged care facilities (RACF and those with dementia. However, despite 20 years of discourse on pain and dementia, pain is still undetected or misinterpreted in people with dementia in residential aged care facilities, particularly those with communication difficulties. Methods: A topical survey typology with semistructured interviews was used to gather attitudes and experiences of staff from 15 RACF across Northern Sydney Local Health District. Results: While pain is proactively assessed and pain charts are used in RACF, this is more often regulatory-driven than patient-driven (eg, prior to accreditation. Identification of pain and need for pain relief was ill defined and poorly understood. Both pharmacological and nonpharmacological regimes were used, but in an ad hoc, variable and unsystematic manner, with patient, staff, and attitudinal obstacles between the experience of pain and its relief.Conclusion: A laborious “pain communication chain” exists between the experience of pain and its relief for people with severe dementia within RACF. Given the salience of pain for older people with dementia, we recommend early, proactive consideration and management of pain in the approach to behaviors of concern. Individualized pain measures for such residents; empowerment of nursing staff as “needs interpreters”; collaborative partnerships with common care goals between patients where possible; RACF staff, doctors, and family carers; and more meaningful use of pain charts to map response to stepped pain protocols may be useful strategies to explore in clinical settings
Beer, Christopher; Horner, Barbara; Almeida, Osvaldo P; Scherer, Samuel; Lautenschlager, Nicola T; Bretland, Nick; Flett, Penelope; Schaper, Frank; Flicker, Leon
Residential care is important for older adults, particularly for those with advanced dementia and their families. Education interventions that achieve sustainable improvement in the care of older adults are critical to quality care. There are few systematic data available regarding the educational needs of Residential Care Facility (RCF) staff and General Practitioners (GPs) relating to dementia, or the sustainability of educational interventions. We sought to determine participation in dementia education, perceived levels of current knowledge regarding dementia, perceived unmet educational needs, current barriers, facilitators and preferences for dementia education. A mixed methods study design was utilised. A survey was distributed to a convenience sample of general practitioners, and staff in 223 consecutive residential care facilities in Perth, Western Australia. Responses were received from 102 RCF staff working in 10 facilities (out of 33 facilities who agreed to distribute the survey) and 202 GPs (19% of metropolitan GPs). Quantitative survey data were summarised descriptively and chi squared statistics were used to analyse the distribution of categorical variables. Qualitative data were collected from general practitioners, staff in residential care facilities and family carers of people with dementia utilizing individual interviews, surveys and focus groups. Qualitative data were analysed thematically. Among RCF staff and GPs attending RCF, participation in dementia education was high, and knowledge levels generally perceived as good. The individual experiences and needs of people with dementia and their families were emphasised. Participants identified the need for a person centred philosophy to underpin educational interventions. Limited time was a frequently mentioned barrier, especially in relation to attending dementia care education. Perceived educational needs relating to behaviours of concern, communication, knowledge regarding dementia, aspects of
Full Text Available Abstract Background Residential care is important for older adults, particularly for those with advanced dementia and their families. Education interventions that achieve sustainable improvement in the care of older adults are critical to quality care. There are few systematic data available regarding the educational needs of Residential Care Facility (RCF staff and General Practitioners (GPs relating to dementia, or the sustainability of educational interventions. We sought to determine participation in dementia education, perceived levels of current knowledge regarding dementia, perceived unmet educational needs, current barriers, facilitators and preferences for dementia education. Methods A mixed methods study design was utilised. A survey was distributed to a convenience sample of general practitioners, and staff in 223 consecutive residential care facilities in Perth, Western Australia. Responses were received from 102 RCF staff working in 10 facilities (out of 33 facilities who agreed to distribute the survey and 202 GPs (19% of metropolitan GPs. Quantitative survey data were summarised descriptively and chi squared statistics were used to analyse the distribution of categorical variables. Qualitative data were collected from general practitioners, staff in residential care facilities and family carers of people with dementia utilizing individual interviews, surveys and focus groups. Qualitative data were analysed thematically. Results Among RCF staff and GPs attending RCF, participation in dementia education was high, and knowledge levels generally perceived as good. The individual experiences and needs of people with dementia and their families were emphasised. Participants identified the need for a person centred philosophy to underpin educational interventions. Limited time was a frequently mentioned barrier, especially in relation to attending dementia care education. Perceived educational needs relating to behaviours of concern
Rochon, Elizabeth; Sidani, Souraya; Shaw, Alexander; Ben-David, Boaz M.; Saragosa, Marianne; Boscart, Veronique M.; Wilson, Rozanne; Galimidi-Epstein, Karmit K.
Background: Effective communication between residents with dementia and care providers in long-term care homes (LTCHs) is essential to resident-centered care. Purpose: To determine the effects of a communication intervention on residents’ quality of life (QOL) and care, as well as care providers’ perceived knowledge, mood, and burden. Method: The intervention included (1) individualized communication plans, (2) a dementia care workshop, and (3) a care provider support system. Pre- and postintervention scores were compared to evaluate the effects of the intervention. A total of 12 residents and 20 care providers in an LTCH participated in the feasibility study. Results: The rate of care providers’ adherence to the communication plans was 91%. Postintervention, residents experienced a significant increase in overall QOL. Care providers had significant improvement in mood and perceived reduced burden. Conclusion: The results suggest that the communication intervention demonstrates preliminary evidence of positive effects on residents’ QOL and care providers’ mood and burden. PMID:27899433
Roelofs, Tineke Sm; Luijkx, Katrien G; Embregts, Petri Jcm
The experiences and needs of spouses of residential care facility residents with dementia, regarding friendship, love, intimacy, and sexuality were explored. Understanding of how spouses make sense of their experiences was pursued. Semi-structured interviews were held with nine spouses of people with dementia, living in high intensive 24-hour care units within residential care facilities. The results show that friendship, love, intimacy, and sexuality were still embedded in the couples' marital lives, but all in their own way. Changing roles and a shift in purpose of the relationship recurred. Although intimacy was found to be still important in the lives of spouses, emotional, and practical residential care facility barriers were experienced by the spouses, of which the absence of communication were most important. Our findings on the experiences of spouses with regard to intimacy and sexuality can help residential care facility staff and policymakers to recognize the needs of couples and take these into account.
Stevnsborg, Lea; Jensen-Dahm, Christina; Nielsen, Thomas R
BACKGROUND: Previous studies demonstrated lower quality diagnostic assessment of dementia in immigrant populations, but knowledge about the quality of treatment and care for dementia is still lacking. OBJECTIVE: To conduct a nationwide registry-based study to determine whether inequality exists...... in a nursing home were compared among Danish-born and Western and non-Western immigrants with dementia. Logistic regression analysis was done with adjustment for age, sex, comorbidity, marital status, basis of inclusion, and time since dementia diagnosis. RESULTS: Immigrant background was associated...
Riedel, O; Dodel, R; Deuschl, G; Förstl, H; Henn, F; Heuser, I; Oertel, W; Reichmann, H; Riederer, P; Trenkwalder, C; Wittchen, H U
Parkinson's disease (PD) is frequently accompanied by dementia or depression which can aggravate the clinical picture of the disease and increase the risk of care dependency (CD). Little is known about the associations between PD, these neuropsychiatric comorbidities and CD in outpatients. A nationwide sample of outpatients (n=1,449) was examined by office-based neurologists (n=315) comprising the documentation of the general, neurological status and the degree of CD. The dementia status was clinically rated according to the established DSM-IV criteria. Depression was screened with the Montgomery-Asberg Depression Rating Scale (MADRS). Overall, 18.3% of all patients were care dependent. Even after adjustment for PD severity, patients with depression (OR=2.8; 95% CI 1.8-4.3), dementia (OR=2.7; 95% CI 1.8-4.1) or both (OR=3.9; 95% CI 2.5-60,0) were at higher risk for CD than patients without dementia or depression. Patients aged ≥76 years were fourfold more likely to be care dependent than patients aged ≤65 years (OR=3.5; 95% CI 2.3-5.5). Across all age groups, patients with depression featured the highest increments (from 11.9 to 42.0%). The risk for CD is substantially elevated in outpatients with PD when further neuropsychiatric symptoms are present. The data suggest that depression contributes equally to disability as does dementia.
Fortinsky, Richard H; Gitlin, Laura N; Pizzi, Laura T; Piersol, Catherine Verrier; Grady, James; Robison, Julie T; Molony, Sheila
Dementia is the leading cause of loss of independence in older adults worldwide. In the U.S., approximately 15 million family members provide care to relatives with dementia. This paper presents the rationale and design for a translational study in which an evidence-based, non-pharmacologic intervention for older adults with dementia and family caregivers (CGs) is incorporated into a publicly-funded home care program for older adults at risk for nursing home admission. The 4-month Care of Persons with Dementia in their Environments (COPE) intervention is designed to optimize older adults' functional independence, and to improve CG dementia management skills and health-related outcomes. COPE features 10 in-home occupational therapy visits, and 1 in-home visit and 1 telephone contact by an advanced practice nurse. COPE was deemed efficacious in a published randomized clinical trial. In the present study, older adults with dementia enrolled in the Connecticut Home Care Program for Elders (CHCPE) and their CGs are randomly assigned to receive COPE plus their ongoing CHCPE services, or to continue receiving CHCPE services only. The primary outcome for older adults with dementia is functional independence; secondary outcomes are activity engagement, quality of life, and prevention or alleviation of neuropsychiatric symptoms. CG outcomes include perceived well-being and confidence in using activities to manage dementia symptoms. Translational outcomes include net financial benefit of COPE, and feasibility and acceptability of COPE implementation into the CHCPE. COPE has the potential to improve health-related outcomes while saving Medicaid waiver and state revenue-funded home care program costs nationwide. Copyright © 2016 Elsevier Inc. All rights reserved.
Coming to grips with challenging behaviour: a cluster randomised controlled trial on the effects of a new care programme for challenging behaviour on burnout, job satisfaction and job demands of care staff on dementia special care units
Zwijsen, S.A.; Gerritsen, D.L.; Eefsting, J.A.; Smalbrugge, M.; Hertogh, C.M.P.M.; Pot, A.M.
Background: Caring for people with dementia in dementia special care units is a demanding job. Challenging behaviour is one of the factors influencing the job satisfaction and burnout of care staff. A care programme for the challenging behaviour of nursing home residents with dementia might, next to
Coming to grips with challenging behaviour: a cluster randomised controlled trial on the effects of a new care programme for challenging behaviour on burnout, job satisfaction and job demands of care staff on dementia special care units
Zwijsen, S.A.; Gerritsen, D.L.; Eefsting, J.A.; Smalbrugge, M.; Hertogh, C.M.; Pot, A.M.
BACKGROUND: Caring for people with dementia in dementia special care units is a demanding job. Challenging behaviour is one of the factors influencing the job satisfaction and burnout of care staff. A care programme for the challenging behaviour of nursing home residents with dementia might, next to
Hansen, Anette; Hauge, Solveig; Bergland, Ådel
The majority of persons with dementia are home-dwelling. To enable these persons to stay in their own homes as long as possible, a holistic, individual and flexible care is recommended. Despite a requirement for meeting psychological, social and physical needs, home care services seem to focus on patients' physical needs. Accordingly, the aim of this study was to explore how the psychosocial needs of home-dwelling, older persons with dementia were perceived, emphasized and met by home care services. A descriptive, qualitative approach was used. Data were collected through semi-structured focus group interviews with 24 health care providers in home care services from four municipalities. Data were analysed using systematic text condensation. This study showed major differences in how health care providers perceived the psychosocial needs of older home-dwelling persons with dementia and how they perceived their responsibilities for meeting those psychosocial needs. The differences in the health care providers' perceptions seemed to significantly influence the provided care. Three co-existing logics of care were identified: the physical need-oriented logic, the renouncement logic and the integrated logic. The differences in how health care providers perceived the psychosocial needs of persons with dementia and their responsibilities for meeting those needs, influenced how the psychosocial needs were met. These differences indicates a need for a clarification of how psychosocial needs should be conceptualized and who should be responsible for meeting these needs. Further, increased competence and increased consciousness of psychosocial needs and how those needs can be met, are essential for delivering high-quality holistic care that enables persons with dementia to live in their own home for as long as possible.
Turner, Alex; Eccles, Fiona; Keady, John; Simpson, Jane; Elvish, Ruth
Deceptive practice has been shown to be endemic in long-term care settings. However, little is known about the use of deception in dementia care within general hospitals and staff attitudes towards this practice. This study aimed to develop understanding of the experiences of general hospital staff and explore their decision-making processes when choosing whether to tell the truth or deceive a patient with dementia. This qualitative study drew upon a constructivist grounded theory approach to analyse data gathered from semi-structured interviews with a range of hospital staff. A model, grounded in participant experiences, was developed to describe their decision-making processes. Participants identified particular triggers that set in motion the need for a response. Various mediating factors influenced how staff chose to respond to these triggers. Overall, hospital staff were reluctant to either tell the truth or to lie to patients. Instead, 'distracting' or 'passing the buck' to another member of staff were preferred strategies. The issue of how truth and deception are defined was identified. The study adds to the growing research regarding the use of lies in dementia care by considering the decision-making processes for staff in general hospitals. Various factors influence how staff choose to respond to patients with dementia and whether deception is used. Similarities and differences with long-term dementia care settings are discussed. Clinical and research implications include: opening up the topic for further debate, implementing staff training about communication and evaluating the impact of these processes.
Mavandadi, Shahrzad; Wray, Laura O; DiFilippo, Suzanne; Streim, Joel; Oslin, David
To evaluate whether a community-based, telephone-delivered, brief patient/caregiver-centered collaborative dementia care management intervention is associated with improved caregiver and care recipient (CR) outcomes. Longitudinal program evaluation of a clinical intervention; assessments at baseline and 3- and 6-month follow-up. General community. Caregivers (N = 440) of older, community-dwelling, low-income CRs prescribed a psychotropic medication by a primary care provider who met criteria for dementia and were enrolled in the SUpporting Seniors Receiving Treatment And INtervention (SUSTAIN) program for older adults. Dementia care management versus clinical evaluation only. Perceived caregiving burden and caregiver general health (primary outcomes); CR neuropsychiatric symptoms and caregiver distress in response to CRs' challenging dementia-related behaviors (secondary outcomes). Caregivers were, on average, 64.0 (SD: 11.8) years old and 62.6% provided care for the CR for 20 or more hours per week. The majority of the sample was female (73.2%), non-Hispanic White (90.2%), and spousal caregivers (72.5%). Adjusted longitudinal models of baseline and 3- and 6-month data suggest that compared with caregivers receiving clinical evaluation only, caregivers receiving care management reported greater reductions in burden over time. Subgroup analyses also showed statistically significant reductions in caregiver-reported frequency of CR dementia-related behaviors and caregiver distress in response to those symptoms at 3-month follow-up. A community-based, telephone-delivered care management program for caregivers of individuals with dementia is associated with favorable caregiver and CR-related outcomes. Findings support replication and further research in the impact of tailored, collaborative dementia care management programs that address barriers to access and engagement. Published by Elsevier Inc.
Larocque, Natasha; Schotsman, Chloe; Kaasalainen, Sharon; Crawshaw, Diane; McAiney, Carrie; Brazil, Emma
This study sought to evaluate a book chat intervention based on Lisa Genova's novel, Still Alice, to influence long-term care (LTC) staff perceptions and attitudes when caring for individuals with dementia. A qualitative descriptive design was used. Eleven participants partook in a 2.5-hour book chat at a southern Ontario LTC facility. Following the book chat, participants answered two open-ended questions to assess how the book chat influenced their views on dementia. Thematic content analysis was used to analyze the qualitative questionnaire. Content analysis of the participants' responses revealed that the book chat positively influenced their attitudes and perceptions toward dementia, particularly by providing more insight into the individual's personal struggle with the disease. Furthermore, participants found that the book chat influenced their care practices. By creating innovative learning opportunities, attitudes and perceptions about dementia care can be transcended and greatly benefit staff, family, and residents. Copyright 2014, SLACK Incorporated.
Peel, Elizabeth; Taylor, Helen; Harding, Rosie
The needs of lesbian, gay, bisexual and trans (LGBT) people with dementia are poorly recognised. This is due partly to assumptions that all older people are heterosexual or asexual. One quarter of gay or bisexual men and half of lesbian or bisexual women have children, compared with 90% of heterosexual women and men, which means LGBT older adults are more likely to reside in care homes. Older LGBT people may be unwilling to express their sexual identities in care settings and this can affect their care. Members of older people's informal care networks must be recognised to ensure their involvement in the lives of residents in care settings continues. However, healthcare professionals may not always realise that many LGBT people rely on their families of choice or wider social networks more than on their families of origin. This article explores sociolegal issues that can arise in the care of older LGBT people with dementia, including enabling autonomy, capacity and applying legal frameworks to support their identities and relationships. It also highlights implications for practice.
Manu, Erika; Marks, Adam; Berkman, Cathy S; Mullan, Patricia; Montagnini, Marcos; Vitale, Caroline A
To examine medical residents' perceived competence in caring for patients with dementia we conducted an online survey of all 120 second, third and fourth-year residents in Internal Medicine, Medicine/Pediatrics, and Family Medicine at University of Michigan. A structured survey elicited residents' training, experience, confidence, and perceived career needs for skills in estimating prognosis, symptom management, and communication in caring for patients with dementia, compared to patients with metastatic cancer. Among the 61 (51 %) respondents, a majority report lower confidence in assessing prognosis and eliciting treatment wishes in patients with dementia (vs. metastatic cancer), and in performing skills integral to the care of patients with dementia, including the ability to assess caregiver needs, decisional capacity, advise on place of care, and manage agitation, despite viewing these skills as important to their future careers. These findings support the need for enhanced education on optimal care of patients with advanced dementia.
Bökberg, Christina; Ahlström, Gerd; Karlsson, Staffan
The progression of dementia disease implies increasing needs for both informal and formal care and services but also risk of institutionalisation. To better adjust care and services in the phase preceding institutionalisation it is important to find out whether utilisation of formal and informal care and services is determined by increased needs and by who meets the needs. The aim was to compare persons with dementia (65+) with different levels of cognitive impairment, regarding utilisation of formal and informal care and service at home. The participants consisted of 177 persons with dementia ≥65 years old and at risk of nursing home admission, divided into groups according to their cognitive function. Structured interviews were conducted based on questionnaires about type and amount of formal and informal care utilised, as well as questions regarding cognitive impairment, dependency in activities of daily living (ADLs) and neuropsychiatric symptoms. To analyse the data, descriptive and comparative statistics were used. The findings revealed that the group with severe dementia used significantly more help with ADLs and supervision in terms of time (number of hours and days) provided by the informal caregiver, compared with the group with moderate dementia. Utilisation of formal care and services was highest in the group with the most severe cognitive impairments (Standardized Mini-Mental State Examination score of <9). The group with severe dementia were more dependent in ADLs and had more neuropsychiatric symptoms (hallucinations and motor disturbances). They were younger and more often cohabitated with the informal caregiver, compared with the group with moderate dementia. This study shows that in the phase preceding institutionalisation the ADL and supervision needs due to progression of dementia appear to tend to be met first and foremost by the informal caregivers. © 2017 Nordic College of Caring Science.
Bilien, Corinne; Depas, Nathalie; Delaporte, Ghislaine; Baptiste, Nathalie
Aromatherapy is classed as a non-pharmacological treatment, recognised as a therapy for certain disorders. This practice was the subject of a study in a special care unit for patients with dementia. The objective was to demonstrate the benefit of aromatherapy diffusion on major behavioural disorders. Copyright © 2016 Elsevier Masson SAS. All rights reserved.
Shibazaki, Kagari; Marshall, Nigel A
This study explores the specific effects of live music concerts on the clients with dementia, their families and nursing staff/caregivers. Researchers attended 22 concerts in care facilities in England and Japan. Interviews were carried out with clients with dementia, nursing staff and family members. Observations were also carried out before, during and after the concerts. All observations were recorded in field notes. The effect of the concerts in both countries was seen to be beneficial to all clients and nursing staff, whether or not they attended the concert. Interviews with clients with mild to mid-stage dementia noted increased levels of cooperation, interaction and conversation. Those with more advanced forms of dementia exhibited decreased levels of agitation and anti-social behaviour. Staff members reported increased levels of care, cooperation and opportunities for assessment. Family members noted an increase in the levels of well-being in their partner/parent as well as in themselves. The study also suggested that the knowledge of musical components, an awareness of the rules of music and specific musical preferences appear to remain well beyond the time when other cognitive skills and abilities have disappeared. This initial study provided some further indication in terms of the uses of music as a non-pharmacological intervention for those living with all stages of dementia. These included opportunities for assessment of physical abilities as well as facilitating an increasing level of care.
Romeo, Renee; Knapp, Martin; Salverda, Suzanne; Orrell, Martin; Fossey, Jane; Ballard, Clive
To examine the cost of care for people with dementia in institutional care settings, to understand the major cost drivers and to highlight opportunities for service development. Data on 277 residents with dementia in 16 UK residential or nursing homes were collected. We estimated care and support costs and fitted models to the data. Sensitivity analyses were also conducted. Care home residents cost £792 weekly: 95% of the costs accounted for by direct fees. Hospital contacts contributed the largest proportion of the additional costs. Having an established diagnosis of dementia (b = 0.070; p < 0.05) was associated with higher costs. No association was found between cost and needs (b = -0.002; p = 0.818). The absence of an association between cost and needs emphasizes the importance of a more needs-based costing system which could result in clinical and economic advantages. Copyright © 2016 John Wiley & Sons, Ltd. Copyright © 2016 John Wiley & Sons, Ltd.
Nguyen, Mynhi; Pachana, Nancy A; Beattie, Elizabeth; Fielding, Elaine; Ramis, Mary-Anne
The objective of this review is to identify and appraise existing evidence regarding the effectiveness of interventions designed to enhance staff-family relationships for people with dementia living in residential aged care facilities.More specifically, the objectives are to identify the effectiveness of constructive communication, cooperation programs, and practices or strategies to enhance family-staff relationships. The effectiveness of these interventions will be measured by comparing the intervention to no intervention, comparing one intervention with another, or comparing pre- and post-interventions.Specifically the review question is: What are the most effective interventions for improving communication and cooperation to enhance family-staff relationships in residential aged care facilities? In our aging world, dementia is prevalent and is a serious health concern affecting approximately 35.6 million people worldwide. This figure is expected to increase two-fold by 2030 and three-fold by 2050. Although younger-onset dementia is increasingly recognized, dementia is most commonly a disease that affects the elderly. Among those aged 65 to 85, the prevalence of dementia increases exponentially, and doubles with every five-year increase in age.Dementia is defined as a syndrome, commonly chronic or progressive in nature, and caused by a range of brain disorders that affect memory, thinking and the ability to perform activities of daily living. While the rate of progression and manifestation of decline differs, all cases of dementia share a similar trajectory of decline. The progressive decline in cognitive functions and ultimately physical function that these people face affects not only the person with the disease but also their family caregivers and health care staff.The manifestation of dementia presents unique and extreme challenges for the family caregiver. Generally it causes great physical, emotional and social strain because the caregiving process is long
Lykkeslet, Else; Gjengedal, Eva; Skrondal, Torill Helene; Storjord, May-Britt
The overall aim of this 2-year Norwegian action research study was to improve the interaction between care workers and patients with dementia in a nursing home by means of sensory stimulation. Furthermore, the aim was to investigate how the staff experienced the interaction with patients suffering from behavioral and psychological symptoms of dementia before, under, and after introduction of sensory stimulation methods in clinical practice. An intervention program consisting of lectures and p...
Peacock, Shelley C
The number of people with dementia is growing at an alarming rate. An abundance of research over the past two decades has examined the complex aspects of caring for a relative with dementia. However, far less research has been conducted specific to the experiences of family caregivers providing end-of-life care, which is perplexing, as dementia is a terminal illness. This article presents what is known and highlights the gaps in the literature relevant to the experiences of family caregivers of persons with dementia at the end of life. A thorough search of the Cumulative Index to Nursing and Allied Health Literature (CINAHL) and PubMed databases from 1960 to 2011 was conducted. Ten studies were identified that specifically addressed the experience of family caregivers providing end-of-life care to a relative with advanced dementia. Common themes of these studies included: 1) the experience of grief, 2) guilt and burden with decision making, 3) how symptoms of depression may or may not be resolved with death of the care receiver, 4) how caregivers respond to the end-stage of dementia, and 5) expressed needs of family caregivers. It is evident from this literature review that much remains to be done to conceptualize the experience of end-of-life caregiving in dementia.
Williams, Christine L.; Molinari, Victor; Bond, Jennifer; Smith, Michael; Hyer, Kathryn; Malphurs, Julie
There is increasing recognition of the severe consequences of depression in long-term care residents with dementia. Most health care providers are unprepared to recognize and to manage the complexity of depression in dementia. Targeted educational initiatives in nursing homes are needed to address this growing problem. This paper describes the…
Donnelly, Sarah; Begley, Emer; O'Brien, Marita
In recent years, there have been national and international policy advances around capacity and decision-making and an apparent burgeoning rights-based approach to the issue, all of which have the potential to impact on the experience for people with dementia in Ireland. There is little evidence however on whether these policies and principles are being translated into practice and whether traditional paternalistic approaches to decision-making are being challenged. To gain insight into current practice, research was undertaken with social workers working with older people in Ireland; reporting on the involvement of people living with dementia in care-planning processes. Data collection included a mixed method approach; an on-line survey of social workers from across the country who reported on their open caseload during the month of June 2015 (N = 38 social workers reporting on the experiences of 788 older people, of which 39% of older people had a formal diagnosis of dementia). In addition, semi-structured telephone interviews were conducted with social workers working in the nine Community Health Organisation areas (N = 21). Findings show that people with dementia were high users of social work services, accounting for 44.5% of the client group. Social workers reported that there were no standardised approaches to how Health and Social Care Professionals involved people with dementia in care planning and decision-making. Overall, people with dementia were more likely to be excluded from decision-making processes due to (i) assumptions that they lacked capacity, (ii) family members preferences that the person was not involved, (iii) communication difficulties, (iv) time constraints, (v) little or no opportunity given or (vi) the person delegated decision-making to others. Good practices were identified through multidisciplinary team approaches and formal care planning meetings. This research highlights variability in how people with dementia participate
Background People living with a long term condition may wish to be able to plan ahead, so that if in future they cannot make decisions, their wishes about their care will be known; this process is termed Advance Care Planning (ACP). In dementia, guidance stipulates that ACP discussions should take place whilst the person still has capacity to make decisions. However there is a lack of evidence on the effectiveness of ACP in influencing patient choice and resource use. The aims of this study are to determine the effectiveness of ACP in dementia care, identify the factors which facilitate the process in practice and provide a better understanding of the views and experiences of key stakeholders in order to inform clinical practice. Methods/Design The four phase project comprises a systematic review (Phase 1) and a series of qualitative studies (Phases 2 and 3), with data collection via focus groups and individual interviews with relevant stakeholders including people with dementia and their carers, health and social care professionals and representatives from voluntary organisations and the legal profession. The conduct of the systematic review will follow current best practice guidance. In phases 2 and 3, focus groups will be employed to seek the perspectives of the professionals; individual interviews will be carried out with people with dementia and their carers. Data from Phases 1, 2 and 3 will be synthesised in a series of team workshops to develop draft guidance and educational tools for implementing ACP in practice (Phase 4). Discussion In the UK, there is little published research on the effectiveness of ACP, despite its introduction into policy. This study was designed to explore in greater depth how ACP can best be carried out in routine practice. It affords the opportunity to develop both a theoretical and practical understanding of an area which both patients and professionals may find emotionally challenging. Importantly the study will also develop
Full Text Available Abstract Background People living with a long term condition may wish to be able to plan ahead, so that if in future they cannot make decisions, their wishes about their care will be known; this process is termed Advance Care Planning (ACP. In dementia, guidance stipulates that ACP discussions should take place whilst the person still has capacity to make decisions. However there is a lack of evidence on the effectiveness of ACP in influencing patient choice and resource use. The aims of this study are to determine the effectiveness of ACP in dementia care, identify the factors which facilitate the process in practice and provide a better understanding of the views and experiences of key stakeholders in order to inform clinical practice. Methods/Design The four phase project comprises a systematic review (Phase 1 and a series of qualitative studies (Phases 2 and 3, with data collection via focus groups and individual interviews with relevant stakeholders including people with dementia and their carers, health and social care professionals and representatives from voluntary organisations and the legal profession. The conduct of the systematic review will follow current best practice guidance. In phases 2 and 3, focus groups will be employed to seek the perspectives of the professionals; individual interviews will be carried out with people with dementia and their carers. Data from Phases 1, 2 and 3 will be synthesised in a series of team workshops to develop draft guidance and educational tools for implementing ACP in practice (Phase 4. Discussion In the UK, there is little published research on the effectiveness of ACP, despite its introduction into policy. This study was designed to explore in greater depth how ACP can best be carried out in routine practice. It affords the opportunity to develop both a theoretical and practical understanding of an area which both patients and professionals may find emotionally challenging. Importantly the
Robinson, Louise; Bamford, Claire; Beyer, Fiona; Clark, Alexa; Dickinson, Claire; Emmet, Charlotte; Exley, Catherine; Hughes, Julian; Robson, Lesley; Rousseau, Nikki
People living with a long term condition may wish to be able to plan ahead, so that if in future they cannot make decisions, their wishes about their care will be known; this process is termed Advance Care Planning (ACP). In dementia, guidance stipulates that ACP discussions should take place whilst the person still has capacity to make decisions. However there is a lack of evidence on the effectiveness of ACP in influencing patient choice and resource use. The aims of this study are to determine the effectiveness of ACP in dementia care, identify the factors which facilitate the process in practice and provide a better understanding of the views and experiences of key stakeholders in order to inform clinical practice. The four phase project comprises a systematic review (Phase 1) and a series of qualitative studies (Phases 2 and 3), with data collection via focus groups and individual interviews with relevant stakeholders including people with dementia and their carers, health and social care professionals and representatives from voluntary organisations and the legal profession. The conduct of the systematic review will follow current best practice guidance. In phases 2 and 3, focus groups will be employed to seek the perspectives of the professionals; individual interviews will be carried out with people with dementia and their carers. Data from Phases 1, 2 and 3 will be synthesised in a series of team workshops to develop draft guidance and educational tools for implementing ACP in practice (Phase 4). In the UK, there is little published research on the effectiveness of ACP, despite its introduction into policy. This study was designed to explore in greater depth how ACP can best be carried out in routine practice. It affords the opportunity to develop both a theoretical and practical understanding of an area which both patients and professionals may find emotionally challenging. Importantly the study will also develop practical tools, which are grounded in
Aisling A. Jennings
Conclusion: This study provides a prototype for the development of an online dementia educational resource and demonstrates the value of a dementia-specific services and supports directory for primary care based health professionals.
Wolfs, Claire A G; de Vugt, Marjolein E; Verkaaik, Mike; Haufe, Marc; Verkade, Paul-Jeroen; Verhey, Frans R J; Stevens, Fred
To gain caregivers' insights into the decision-making process in dementia patients with regard to treatment and care. Four focus group interviews (n=29). The decision-making process consists of three elementary components: (1) identifying an individual's needs; (2) exploring options; and (3) making a choice. The most important phase is the exploration phase as it is crucial for the acceptance of the disease. Furthermore, the decision is experienced more as an emotional choice than a rational one. It is influenced by personal preferences whereas practical aspects do not seem to play a substantial role. Several aspects make decision-making in dementia different from decision-making in the context of other chronic diseases: (1) the difficulty accepting dementia; (2) the progressive nature of dementia; (3) patient's reliance on surrogate decision-making; and (4) strong emotions. Due to these aspects, the decision-making process is very time-consuming, especially the crucial exploration phase. A more active role is required of both the caregiver and the health care professional especially in the exploration phase, enabling easier acceptance and adjustment to the disease. Acceptance is an important condition for reducing anxiety and resistance to care that may offer significant benefits in the future. Copyright © 2011 Elsevier Ireland Ltd. All rights reserved.
Kawashima, Ryuta; Hiller, Deborah Lewis; Sereda, Sheryl L; Antonczak, Michelle; Serger, Kara; Gannon, Denise; Ito, Shinji; Otake, Hiroshi; Yunomae, Daisaku; Kobayashi, Akihito; Muller, Christopher; Murata, Hiroyuki; FallCreek, Stephanie
The purpose of this study was to examine the beneficial effects on cognitive function by a cognitive intervention program designed for dementia care called Learning Therapy in Japan and SAIDO Learning in the United States (hereinafter "SAIDO Learning," as appropriate). SAIDO Learning is a working memory training program that uses systematized basic problems in arithmetic and language, including reading aloud, as well as writing. Twenty-three nursing home residents with dementia were assigned as an intervention group, and another 24 people with dementia at another nursing home were assigned as a control group. Both nursing homes were operated by the same organization, and residents of both nursing homes received essentially the same nursing care. Thirteen and 6 subjects of the intervention and control groups, respectively, were clinically diagnosed as Alzheimer disease (AD). After the 6-month intervention, the participants with AD of the intervention group showed statistically significant improvement in cognitive function, as measured by the Mini-Mental State Examination (MMSE) compared with the control participants. In addition, post hoc analysis revealed that the Frontal Assessment Battery at Bedside (FAB) scores of the intervention group tended to improve after 6-month intervention. Based on MDS scores, improvements in total mood severity scores also were observed, but only in the intervention group of the participants with AD. These results suggest that SAIDO Learning is an effective cognitive intervention and is useful for dementia care. An additional outcome of this intervention, which has not yet been evaluated in detail, appears to be that it promotes greater positive engagement of a diversity of nursing home staff in the residents' individual progress and care needs. Copyright © 2015 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.
Amjad, Halima; Wong, Stephanie K; Roth, David L; Huang, Jin; Willink, Amber; Black, Betty S; Johnston, Deirdre; Rabins, Peter V; Gitlin, Laura N; Lyketsos, Constantine G; Samus, Quincy M
To investigate effects of a novel dementia care coordination program on health services utilization. A total of 303 community-dwelling adults aged ≥70 with a cognitive disorder in Baltimore, Maryland (2008-2011). Single-blind RCT evaluating efficacy of an 18-month care coordination intervention delivered through community-based nonclinical care coordinators, supported by an interdisciplinary clinical team. Study partners reported acute care/inpatient, outpatient, and home- and community-based service utilization at baseline, 9, and 18 months. From baseline to 18 months, there were no significant group differences in acute care/inpatient or total outpatient services use, although intervention participants had significantly increased outpatient dementia/mental health visits from 9 to 18 months (p = .04) relative to controls. Home and community-based support service use significantly increased from baseline to 18 months in the intervention compared to control (p = .005). While this dementia care coordination program did not impact acute care/inpatient services utilization, it increased use of dementia-related outpatient medical care and nonmedical supportive community services, a combination that may have helped participants remain at home longer. Future care model modifications that emphasize delirium, falls prevention, and behavior management may be needed to influence inpatient service use. © Health Research and Educational Trust.
Semrau, M.; Burns, A.; Djukic-Dejanovic, S.; Eraslan, D.; Han, C.; Lecic-Tosevski, D.; Lobo, A.; Mihai, A.; Morris, J.; Palumbo, C.; Robert, P.; Stiens, G.; Stoppe, G.; Volpe, U.; Olde Rikkert, M.G.M.; Sartorius, N.
BACKGROUND: A reliable and valid global staging scale has been lacking within dementia care. OBJECTIVE: To develop an easy-to-use multi-dimensional clinical staging schedule for dementia. METHODS: The schedule was developed through: i) Two series of focus groups (40 and 48 participants,
Hirata, Hiromi; Harvath, Theresa A
The purpose of this study was to explore Japanese care workers' attributions, beliefs and cultural explanations of physically and psychologically aggressive behaviour symptoms. Physically and psychologically aggressive behaviour symptoms by older people with dementia have been associated with occupational stress among care workers in the United States and other Western countries and may contribute to staff turnover. However, few studies related to this issue have been conducted in Japan, where care worker reaction to physically and psychologically aggressive behaviour symptoms might be different because of cultural and customary differences in how care is provided for older people. This study reports on the results of three open-ended questions that were part of a larger study that explored Japanese care workers' experiences with aggressive behaviour symptoms in persons with dementia. Convenience sampling was used to recruit 137 care workers in 10 nursing homes in the northern and western areas of Japan. The answers to the open-ended questions were analysed using a content analysis. Most of the participants indicated that they believed that physically and psychologically aggressive behaviour symptoms came from residents' stress from dementia. Approximately, one-fourth of the participants responded that Japanese values such as chu (loyalty) and joge (hierarchy) influenced their work with residents with physically and psychologically aggressive behaviour symptoms. Seventeen participants (12%) commented either that they respected older people or that they respected older people as persons who had had many experiences in life. Interestingly, 43 responses (41.0%) indicated that physically and psychologically aggressive behaviour symptoms influenced quality of care positively, while, not surprisingly, about 30 responses indicated that those behaviour symptoms influenced quality of care negatively. Findings from this study indicate that the training and education needs to
Scholzel-Dorenbos, Carla J M; Meeuwsen, Els J; Olde Rikkert, Marcel G M
To make an inventory of needs assessment instruments in dementia, to explore the interaction between unmet needs and health-related quality of life (HRQoL) and to relate these to the conceptual model of Maslow's Hierarchy of needs in order to design a dementia-specific model. Narrative review of literature on (measures of) needs of patients and caregivers and HRQoL determinants important in dementia. Relating these needs to individual goal setting instruments and Maslow's Hierarchy of needs model. The Camberwell Assessment of Needs for the Elderly (CANE) turns out to be a valid tool to assess needs of dementia patients, suitable for research and clinical use. The Carers' Needs Assessment for Dementia (CNA-D) is a valid instrument to assess needs of caregivers. Patients identified significantly fewer needs than (in)formal caregivers. The most important needs, that also determine large part of HRQoL, are need for information; support with regard to symptoms of dementia; social contact and company; and for health monitoring and safety. Goal attainment scaling in dementia is an important but not yet valid outcome measure, with only few data on feasibility in dementia patients. There are several instruments to assess needs of dementia patients and caregivers. Domains of unmet needs and HRQoL overlap. The Hierarchy Model of Needs in Dementia (HMND) offers a new theoretical framework to address the interplay between meeting of needs and improvement of HRQoL in dementia. By identifying unmet needs in dementia-research and focussing on unmet needs in dementia-care, much can be done to improve HRQoL.
Can an EASYcare based dementia training programme improve diagnostic assessment and management of dementia by general practitioners and primary care nurses? The design of a randomised controlled trial
Full Text Available Abstract Background Early diagnosis of dementia benefits both patient and caregiver. Nevertheless, dementia in primary care is currently under-diagnosed. Some educational interventions developed to improve dementia diagnosis and management were successful in increasing the number of dementia diagnoses and in changing attitudes and knowledge of health care staff. However, none of these interventions focussed on collaboration between GPs and nurses in dementia care. We developed an EASYcare-based Dementia Training Program (DTP aimed at stimulating collaboration in dementia primary care. We expect this program to increase the number of cognitive assessments and dementia diagnoses and to improve attitudes and knowledge of GPs and nurses. Methods The DTP is a complex educational intervention that consists of two workshops, a coaching program, access to an internet forum, and a Computerized Clinical Decision Support System on dementia diagnostics. One hundred duos of GPs and nurses will be recruited, from which 2/3 will be allocated to the intervention group and 1/3 to the control group. The effects of implementation of the DTP will be studied in a cluster-randomised controlled trial. Primary outcomes will be the number of cognitive assessments and dementia diagnoses in a period of 9 months following workshop participation. Secondary outcomes are measured on GP and nurse level: adherence to national guidelines for dementia, attitude, confidence and knowledge regarding dementia diagnosis and management; on patient level: number of emergency calls, visits and consultations and patient satisfaction; and on caregiver level: informal caregiver burden and satisfaction. Data will be collected from GPs' electronic medical records, self-registration forms and questionnaires. Statistical analysis will be performed using the MANOVA-method. Also, exploratory analyses will be performed, in order to gain insight into barriers and facilitators for implementation and
Kronborg Andersen, C; Søgaard, Jes; Hansen, E
In a population-based study of dementia, the cost of care for 245 demented elderly and 490 controls matched by age and gender was estimated. Dementia of Alzheimer's type was diagnosed according to the NINCDS-ADRDA criteria, and vascular dementia and other types of dementia were diagnosed accordin...... with dementia and the matched controls and amounts on average to DKK 77,000 per person per year. However, priority setting cannot be based on the cost of dementia per se, but only on the cost of a specific dementia intervention compared to its health benefit.......In a population-based study of dementia, the cost of care for 245 demented elderly and 490 controls matched by age and gender was estimated. Dementia of Alzheimer's type was diagnosed according to the NINCDS-ADRDA criteria, and vascular dementia and other types of dementia were diagnosed according...... to the DSM-IIIR criteria. Severity of dementia was determined by the Clinical Dementia Rating scale. The annual cost of medical care, domestic care, home help, nursing home and special equipment for nondemented patients was DKK 22,000 per person while the cost for very mildly, mildly, moderately and severely...
Drummond, C; Simpson, A
WHAT IS KNOWN ON THE SUBJECT?: A written plan is designed to improve communication and co-ordinate care between mental health inpatient wards and community settings. Reports of care plan quality issues and staff and service user dissatisfaction with healthcare bureaucracy have focused on working age mental health or general hospital settings. Little is known about mental health staff perspectives on the value of written care plans in supporting dementia care. WHAT THIS PAPER ADDS TO EXISTING KNOWLEDGE?: Competing demands on staff time and resources to meet administrative standards for care plans caused a tension with their own professional priorities for supporting care. Mental health staff face difficulties using electronic records alongside other systems of information sharing. Further exploration is needed of the gap between frontline staff values and those of the local organization and managers when supporting good dementia care. WHAT ARE THE IMPLICATIONS FOR PRACTICE?: Frontline staff should be involved in designing new information systems including care plans. Care plan documentation needs to be refocused to ensure it is effective in enabling staff to communicate amongst themselves and with others to support people with dementia. Practice-based mentors could be deployed to strengthen good practice in effective information sharing. Background Reports of increased healthcare bureaucracy and concerns over care plan quality have emerged from research and surveys into staff and service user experiences. Little is known of mental health staff perspectives on the value of written care plans in supporting dementia care. Aim To investigate the experiences and views of staff in relation to care planning in dementia services in one National Health Service (NHS) provider Trust in England. Method Grounded Theory methodology was used. A purposive sample of 11 multidisciplinary staff were interviewed across three sites in one NHS Trust. Interviews were transcribed, coded
Burn, Anne-Marie; Fleming, Jane; Brayne, Carol; Fox, Chris; Bunn, Frances
In 2012-2013, the English National Health Service mandated hospitals to conduct systematic case-finding of people with dementia among older people with unplanned admissions. The method was not defined. The aim of this study was to understand current approaches to dementia case-finding in acute hospitals in England and explore the views of healthcare professionals on perceived benefits and challenges. Qualitative study involving interviews, focus groups and thematic content analysis. Primary care and secondary care across six counties in the East of England. Hospital staff involved in dementia case-finding and primary care staff in the catchment areas of those hospitals. We recruited 23 hospital staff and 36 primary care staff, including 30 general practitioners (GPs). Analysis resulted in three themes: (1) lack of consistent approaches in case-finding processes, (2) barriers between primary care and secondary care which impact on case-finding outcomes and (3) perceptions of rationale, aims and impacts of case-finding. The study shows that there were variations in how well hospitals recorded and reported outcomes to GPs. Barriers between primary care and secondary care, including GPs' lack of access to hospital investigations and lack of clarity about roles and responsibilities, impacted case-finding outcomes. Staff in secondary care were more positive about the initiative than primary care staff, and there were conflicting priorities for primary care and secondary care regarding case-finding. The study suggests a more evidence-based approach was needed to justify approaches to dementia case-finding. Information communicated to primary care from hospitals needs to be comprehensive, appropriate and consistent before GPs can effectively plan further investigation, treatment or care. Follow-up in primary care further requires access to options for postdiagnostic support. There is a need to evaluate the outcomes for patients and the economic impact on health and care
This book is an engaging read from the beginning to end. It explains the needs of people with advanced dementia, particularly that for attachment, and how doll therapy is one of many approaches to engaging in person-centred care.
Wang, Xiao; Sun, Zhenghai; Xiong, Lingchuan; Semrau, Maya; He, Jianhua; Li, Yang; Zhu, Jianzhong; Zhang, Nan; Wang, Aimin; Jiang, Qinpu; Mu, Nan; Zhao, Yuping; Chen, Wei; Wu, Donghui; Zheng, Zhanjie; Sun, Yongan; Zhang, Jing; Xu, Jun; Meng, Xue; Zhao, Mei; Zhang, Haifeng; Lv, Xiaozhen; Sartorius, Norman; Li, Tao; Yu, Xin; Wang, Huali
Clinical and social services both are important for dementia care. The International Dementia Alliance (IDEAL) Schedule for the Assessment and Staging of Care was developed to guide clinical and social care for dementia. Our study aimed to assess the validity and reliability of the IDEAL schedule in China. Two hundred eighty-two dementia patients and their caregivers were recruited from 15 hospitals in China. Each patient-caregiver dyad was assessed with the IDEAL schedule by a rater and an observer simultaneously. The Clinical Dementia Rating (CDR), Mini-Mental Status Examination (MMSE), and Caregiver Burden Inventory (CBI) were assessed for criterion validity. IDEAL repeated assessment was conducted 7-10 days after the initial interview for 62 dyads. Two hundred seventy-seven patient-caregiver dyads completed the IDEAL assessment. Inter-rater reliability for the total score of the IDEAL schedule was 0.93 (95%CI = 0.92-0.95). The inter-class coefficient for the total score of IDEAL was 0.95 for the interviewers and 0.93 for the silent raters. The IDEAL total score correlated with the global CDR score (ρ = 0.72, p valid and reliable tool for the staging of care for dementia in the Chinese population.
Ridder, Hanne Mette Ochsner; Stige, Brynjulf
and how music is implemented in activities and daily care as well as in music therapy sessions. Results The various perspectives on music as a health promoting agent in dementia care are documented in the Norwegian/Danish book Musikkterapi og Eldrehelse (Music therapy and elderly health) published in June......Introduction According to The United Nations Principles, older persons should have access to cultural and recreational resources of society. Musical memory is remarkably well-maintained despite loss of other cognitive functions in dementia, and the use of music activities, caregiver singing, social...... dancing and music listening with iPods is increasingly implemented. Therefore, it is important to consider why and how music as a cultural and recreational resource is integrated in dementia care. Methods In the period from 2008-20014 the University of Bergen coordinated a collaborative network...
van der Flier, W.M.; Pijnenburg, Y.A.L.; Prins, N.; Lemstra, A.W.; Bouwman, F.H.; Teunissen, C.E.; van Berckel, B.N.M.; Stam, C.J.; Barkhof, F.; Visser, P.J.; van Egmond, E.; Scheltens, P.
Since its opening in 2000, patient care and research go hand in hand at the Alzheimer center of the VU University Medical Center, both organized in such a way that they mutually strengthen each other. Our mission is to give patients a voice by lifting the stigma on dementia, to find new diagnostic
Førsund, Linn Hege; Kiik, Riina; Skovdahl, Kirsti; Ytrehus, Siri
To explore and describe how spouses involve themselves in the relationship with their partners with dementia who live in institutional care. Positive reciprocity between partners has been proven to be significant for spouses with partners living with dementia at home. However, little is known about spousal involvement after placement of a partner in an institutional setting. This subject was therefore the focus of this study. Constructivist grounded theory was used to develop meaningful concepts considering the relational processes experienced and described by the spouses. Interviews were conducted with 15 spouses (eight women and seven men ranging in age from 64-90 years) of dementia-afflicted persons living in institutional care. Theoretical sampling, constant comparison and memo-writing guided the data collection and analysis. The analysis showed how the spouses adopted different visiting routines to preserve continuity in their relationship throughout the phases of dementia. Three categories described how these visiting routines were used and adapted along with their partners' dementia progressions in the process of constructing togetherness: 'maintaining involvement and intimacy to preserve continuity in their relationship,' 'structuring visits to facilitate interaction and communication' and 'pursuing moments of mutuality to preserve continuity in a deteriorating relationship.' Being involved and experiencing continuity in the relationship seemed important to the spouses after their partners' placement in institutional care. In the process of constructing togetherness, visiting routines were used to facilitate situations in which they could connect with their partners. These routines were continuously adjusted throughout the phases of dementia. There is a need for a systematic approach to provide sufficient support to spouses throughout their partners' dementia progressions to assist their ongoing involvement. © 2016 John Wiley & Sons Ltd.
Morgan, Debra G.; Kosteniuk, Julie G.; O'Connell, Megan E.; Dal Bello-Haas, Vanina; Stewart, Norma J.; Karunanayake, Chandima
An understanding of the specific dementia learning needs of home care staff is needed to plan relevant continuing education (CE) programs and supports. The study's objective was to examine frequency and perceived competence in performing 20 dementia-related work activities, and identify CE priorities among home care staff. A cross-sectional survey…
Cabote, Christy Joy; Bramble, Marguerite; McCann, Damhnat
Family caregiving for people with younger onset dementia affects everyone in the family unit. This article presents findings of a qualitative systematic review exploring the experiences of family caregivers of persons with younger onset dementia. A systematic search resulted in the inclusion of five relevant articles, and two groups within the family unit were identified-child caregivers and adult and spousal caregivers. Using the thematic synthesis approach, five themes emerged: dementia damage, grief for loss of relationship, changes in family roles, positive and negative impacts of family caregiving, and transition to formal care. The review findings support increasing evidence that despite the stress of caring for a person with dementia damage, family members have the capacity to cope, adapt, and grow through their experiences. Nurses can assist families to identify their unique strengths and enhance family resiliency so they can navigate the "lonely road" of younger onset dementia. © The Author(s) 2015.
Weert, J. van; Dulmen, S. van; Bensing, J.
Dementia among nursing home residents is oftenaccompanied by behavioural disturbances and high caredependency. Multi-Sensory Stimulation or snoezelen,integrated in 24-h dementia care, is an approach thatmight improve mood and behaviour of demented elderlyas well as the quality of working life of
van Weert, J.; van Dulmen, S.; Bensing, J.
Dementia among nursing home residents is oftenaccompanied by behavioural disturbances and high caredependency. Multi-Sensory Stimulation or snoezelen,integrated in 24-h dementia care, is an approach thatmight improve mood and behaviour of demented elderlyas well as the quality of working life of
Tonelli, Marcello; Wiebe, Natasha; Straus, Sharon; Fortin, Martin; Guthrie, Bruce; James, Matthew T; Klarenbach, Scott W; Tam-Tham, Helen; Lewanczuk, Richard; Manns, Braden J; Quan, Hude; Ronksley, Paul E; Sargious, Peter; Hemmelgarn, Brenda
Little is known about how multimorbidity, dementia and increasing age combine to influence health outcomes or utilization. Our objective was to examine the joint associations between age, dementia and burden of morbidity with mortality and other clinical outcomes. We did a retrospective population-based cohort study of all adults aged 65 years and older residing in Alberta, Canada, between 2002 and 2013. We used validated algorithms applied to administrative and laboratory data from the provincial health ministry to assess the presence/absence of dementia and 29 other morbidities, and their associations with mortality (our primary outcome), other clinical outcomes (emergency department visits, all-cause hospital admissions) and a proxy for loss of independent living (discharge to long-term care). Cox and Poisson models were adjusted for year-varying covariates. A 3-way interaction was modelled for dementia, the number of comorbidities, and age. There were 610 457 adults aged 65 years and older living in Alberta over the study period. Over median follow-up of 6.8 years, 153 125 (25.1%) participants died and 5569 (0.9%) were discharged to long-term care. The prevalence of people with at least 3 morbidities was 33.7% in 2003 and 50.2% in 2012. The prevalence of dementia rose from 6.2% in fiscal year 2003 to 8.3% in fiscal year 2012, representing a net increase of approximately 13 700 people. The likelihood of all 4 outcomes increased with age and with greater burden of morbidity; the presence of dementia further increased these risks. For example, the risk of mortality increased by 1.54 to 6.38 in the presence of dementia, depending on age and morbidity burden. The risk associated with dementia was attenuated by increasing comorbidity. Older age, multimorbidity and dementia are all strongly correlated with adverse health outcomes as well as a proxy for loss of independent living. The increasing prevalences of dementia and multimorbidity over time suggest the
Wang, Yao; Xiao, Lily Dongxia; Ullah, Shahid; He, Guo-Ping; De Bellis, Anita
The lack of dementia education programmes for health professionals in primary care is one of the major factors contributing to the unmet demand for dementia care services. To determine the effectiveness of a nurse-led dementia education and knowledge translation programme for health professionals in primary care; participants' satisfaction with the programme; and to understand participants' perceptions of and experiences in the programme. A cluster randomized controlled trial was used as the main methodology to evaluate health professionals' knowledge, attitudes and care approach. Focus groups were used at the end of the project to understand health professionals' perceptions of and experiences in the programme. Fourteen community health service centres in a province in China participated in the study. Seven centres were randomly assigned to the intervention or control group respectively and 85 health professionals in each group completed the programme. A train-the-trainer model was used to implement a dementia education and knowledge translation programme. Outcome variables were measured at baseline, on the completion of the programme and at 3-month follow-up. A mixed effect linear regression model was applied to compare the significant differences of outcome measures over time between the two groups. Focus groups were guided by four semi-structured questions and analysed using content analysis. Findings revealed significant effects of the education and knowledge translation programme on participants' knowledge, attitudes and a person-centred care approach. Focus groups confirmed that the programme had a positive impact on dementia care practice. A dementia education and knowledge translation programme for health professionals in primary care has positive effects on their knowledge, attitudes, care approach and care practice. Copyright © 2016 Elsevier Ltd. All rights reserved.
Beck, Esther-Ruth; McIlfatrick, Sonja; Hasson, Felicity; Leavey, Gerry
To examine nursing home managers' knowledge, attitudes, beliefs and current practice regarding advance care planning for people with dementia in long-term care settings informed by the theory of planned behaviour. Internationally, advance care planning is advocated for people with dementia. However, evidence suggests that discussions with people with dementia are rare, particularly in long-term care settings. Whilst nursing home managers can be considered central to implementation in this setting, there is a dearth of research that has examined their perspective. This study reports on their role with regard to advance care planning and the perceived factors which influence this. A cross-sectional postal survey was carried out as part of a larger scale sequential explanatory mixed-methods study between January-March 2015. Nursing home managers in a region in the UK (n = 178). A response rate of 66% (n = 116) was achieved. Nursing home managers demonstrated a lack of knowledge of advance care planning, with negative attitudes underpinned by concerns regarding the capacity and lack of perceived benefits to the person with dementia. Currently, they do not view advance care planning as part of their role, with lack of ownership impacting upon current practice behaviours. Whilst nursing home managers recognise the potential benefits of advance care planning, barriers and challenges create a reluctance to facilitate. Targeted training to address the knowledge deficit is required, with the wider components of advance care planning promoted. There is a need for greater role clarification to ensure nurses in long-term care settings identify with the process in the future. A gap between rhetoric and reality of implementation is evident; therefore, long-term care settings must critically examine system, organisational and individual factors for failure to implement advance care planning for people with dementia. Increased cognisance of the context in which advance care
Smit, Dieneke; De Lange, Jacomine; Willemse, Bernadette; Pot, Anne Margriet
Background: Despite the finding that involvement in activities is one of the most important needs of residents with dementia living in care homes, care facilities struggle to fulfill this need. Over the years, various factors are suggested which may contribute to or disable activity provision in
Sun, Fei; Durkin, Daniel W; Hilgeman, Michelle M; Harris, Grant; Gaugler, Joseph E; Wardian, Jana; Allen, Rebecca S; Burgio, Louis D
Literature on institutionalization of patients with dementia has not considered the role of caregivers' quality of care, which encompasses caregivers' exemplary care (EC) behaviors and caregivers' potentially harmful behaviors (PHBs) toward care recipients. This study sought to understand the role of quality of care in mediating between caregiving stressors and caregiver desire to institutionalize (DTI) a patient with dementia. A sample of 612 family caregivers from diverse racial/ethnic backgrounds was drawn from the baseline data of the Resources for Enhancing Alzheimer's Caregiver Heath (REACH II) project. Multiple mediator models were run using Preacher and Hayes asymptotic and resampling strategies to assess direct and indirect effects of caregiver stressors (daily care bother, behavioral bother, and burden) on caregiver desire to institutionalize a patient with dementia. Overall, PHB was positively related to caregiver desire to institutionalize their care recipients. Specifically, PHB was found to mediate the relationship between caregiving stressors and DTI in the Caucasian and Latino groups, whereas only the mediation effect of EC was significant in the African American group. Caregivers' perceptions of quality of care helped explain their desire to institutionalize their care recipients with dementia. Including assessment of EC and PHB in clinical and social service settings is recommended for all ethnic groups. Interventions should facilitate EC behaviors among African American caregivers and address concerns of PHBs in Caucasian and Latino caregivers.
Lea, Emma J; Goldberg, Lynette R; Price, Andrea D; Tierney, Laura T; McInerney, Fran
To examine awareness of aged care home staff regarding daily food and fluid care needs of older people with dementia. Older people in residential care frequently are malnourished, and many have dementia. Staff knowledge of the food and fluid needs of people with dementia is limited. Qualitative research on this topic is scarce but can provide insight into how nutrition and hydration care may be improved. Qualitative, interview-based study. Eleven staff in a range of positions at one care home were interviewed regarding their perceptions of current and potential food/fluid care practices. Transcripts were coded and analysed thematically. Key food and fluid issues reported by these staff members were weight loss and malnutrition, chewing and swallowing difficulties (dysphagia), and inadequate hydration. Staff identified a number of current care practices that they felt to be effective in facilitating older people's food and fluid intake, including responsiveness to their needs. Staff suggestions to facilitate food and fluid intake centred on improved composition and timing of meals, enhanced physical and social eating environment, and increased hydration opportunities. Staff commented on factors that may prevent changes to care practices, particularly the part-time workforce, and proposed changes to overcome such barriers. Staff were aware of key food and fluid issues experienced by the older people in their care and of a range of beneficial care practices, but lacked knowledge of many promising care practices and/or how to implement such practices. Staff need to be supported to build on their existing knowledge around effective food and fluid care practices. The numerous ideas staff expressed for changing care practices can be leveraged by facilitating staff networking to work and learn together to implement evidence-based change. © 2017 John Wiley & Sons Ltd.
Full Text Available Aims: This claims data-based study compares the intensity of diabetes care in community dwellers and nursing home residents with dementia. Methods: Delivery of diabetes-related medical examinations (DRMEs was compared via logistic regression in 1,604 community dwellers and 1,010 nursing home residents with dementia. The intra-individual effect of nursing home transfer was evaluated within mixed models. Results: Delivery of DRMEs decreases with increasing care dependency, with more community-living individuals receiving DRMEs. Moreover, DRME provision decreases after nursing home transfer. Conclusion: Dementia patients receive fewer DRMEs than recommended, especially in cases of higher care dependency and particularly in nursing homes. This suggests lacking awareness regarding the specific challenges of combined diabetes and dementia care.
Muurinen, S; Savikko, N; Soini, H; Suominen, M; Pitkälä, K
To examine the relationship between nutritional status of service housing and nursing home residents with dementia and their psychological well-being (PWB), and the associations of nutritional care and PWB. This cross-sectional nutrition study was carried out in 2011. The study included all older long-term care residents (N=4966) living in nursing homes and service housing units (N=61) in Helsinki. The response rate of was 72%. Of the respondents, only persons who had a diagnosis of dementia were included in this analysis (N=2379). The Mini Nutritional Assessment (MNA) tool and a structured questionnaire were used in assessing the residents. Six dimensions of PWB were included in the questionnaire. Information was also retrieved from medical records. Of residents 9% were well-nourished and 28% malnourished according to the MNA. PWB was good in 50% (score ≥ 0.80) and poor in 10% (score snacks were associated with poor PWB. Mild cognitive impairment was more often associated with poor PWB, whereas moderate or severe impairment was more often associated with good PWB. Nutritional status and nutritional care of residents with dementia were significantly associated with their psychological well-being. The residents suffering from malnutrition had the poorest psychological well-being.
Einterz, Seth F; Gilliam, Robin; Lin, Feng Chang; McBride, J Marvin; Hanson, Laura C
Decision aids are effective to improve decision-making, yet they are rarely tested in nursing homes (NHs). Study objectives were to (1) examine the feasibility of a goals of care (GOC) decision aid for surrogate decision-makers (SDMs) of persons with dementia; and (2) to test its effect on quality of communication and decision-making. Pre-post intervention to test a GOC decision aid intervention for SDMs for persons with dementia in NHs. Investigators collected data from reviews of resident health records and interviews with SDMs at baseline and 3-month follow-up. Two NHs in North Carolina. Eighteen residents who were over 65 years of age, had moderate to severe dementia on the global deterioration scale (5, 6, or 7), and an English-speaking surrogate decision-maker. (1) GOC decision aid video viewed by the SDM and (2) a structured care plan meeting between the SDM and interdisciplinary NH team. Surrogate knowledge, quality of communication with health care providers, surrogate-provider concordance on goals of care, and palliative care domains addressed in the care plan. Eighty-nine percent of the SDMs thought the decision aid was relevant to their needs. After viewing the video decision aid, SDMs increased the number of correct responses on knowledge-based questions (12.5 vs 14.2; P communication scores (6.1 vs 6.8; P = .01) and improved concordance on primary goal of care with NH team (50% vs 78%; P = .003). The number of palliative care domains addressed in the care plan increased (1.8 vs 4.3; P decision-support intervention piloted in this study was feasible and relevant for surrogate decision-makers of persons with advanced dementia in NHs, and it improved quality of communication between SDM and NH providers. A larger randomized clinical trial is underway to provide further evidence of the effects of this decision aid intervention. Copyright © 2014 American Medical Directors Association, Inc. Published by Elsevier Inc. All rights reserved.
de Boer, Bram; Hamers, Jan P H; Zwakhalen, Sandra M G; Tan, Frans E S; Verbeek, Hilde
Many countries are introducing smaller, more home-like care facilities that represent a radically new approach to nursing home care for people with dementia. The green care farm is a new type of nursing home developed in the Netherlands. The goal of this study was to compare quality of care, quality of life and related outcomes in green care farms, regular small-scale living facilities and traditional nursing homes for people with dementia. A cross-sectional design was used. Three types of nursing homes were included: (1) green care farms; (2) regular small-scale living facilities; (3) traditional nursing homes. All participating nursing homes were non-profit, collectively funded nursing homes in the south of the Netherlands. One hundred and fifteen residents with a formal diagnosis of dementia were included in the study. Data on quality of care was gathered and consisted of outcome indicators (e.g. falling incidents, pressure ulcers), structure indicators (e.g. hours per resident per day), and process indicators (e.g. presence, accessibility and content of protocols on care delivery). Furthermore, questionnaires on cognition, dependence in activities of daily living, quality of life, social engagement, neuropsychiatric symptoms, agitation, and depression were used. Data showed that quality of care was comparable across settings. No large differences were found on clinical outcome measures, hours per resident per day, or process indicators. Higher quality of life scores were reported for residents of green care farms in comparison with residents of traditional nursing homes. They scored significantly higher on the Quality of Life - Alzheimer's disease Scale (p quality of life. In addition, residents of green care farms scored higher on three quality of life domains of the Qualidem: positive affect, social relations and having something to do (p 0.7). No differences with regular small-scale living facilities were found. Green care farms seem to be a valuable
Gonzalez, Marianne T; Kirkevold, Marit
To provide a review on the benefits associated with the use of sensory gardens and horticultural activities in dementia care. Maintaining quality of life is important in dementia care. Sensory gardens and horticultural activities are increasingly used in dementia care, yet their benefits are uncertain. A modified scoping review with descriptive analysis of selected empirical studies. Systematic searches in Amed, CINAHL, MEDLINE, ISI Web of Science, Embase and Scopus were used. Search terms were the free-text concepts 'healing garden', 'horticultural therapy', 'restorative garden' and 'wander garden' which were combined with dementia and Alzheimer. Sixteen studies were included with included participants ranging from eight to 129 participants. Research designs were case studies (n = 2), survey (n = 1), intervention studies with pretest/post-test design (n = 11) and randomised controlled studies (n = 2). Of these 16 studies, eight examined the benefits of sensory gardens, seven examined horticultural therapy or therapeutic horticulture and one examined the use of plants indoors. This study offers a review of the research addressing benefits of sensory gardens, therapeutic horticulture, horticultural therapy and other purposeful use of plants in dementia care. The reported findings are mainly on issues related to behaviour, affect and well-being. The findings are in general mutually supportive, however, with some contradictory findings. In addition, sleep pattern, well-being and functional level seem to improve. These types of nonpharmacological interventions may improve well-being and affect and reduce the occurrence of disruptive behaviour. Additionally, the use of psychotropic drugs, incidents of serious falls, sleep and sleep pattern also seem to improve. To further improve the use of the existing or planned gardens, an educational programme for staff that also includes skill training is recommended. © 2013 John Wiley & Sons Ltd.
Broda, Anja; Bieber, Anja; Meyer, Gabriele; Hopper, Louise; Joyce, Rachael; Irving, Kate; Zanetti, Orazio; Portolani, Elisa; Kerpershoek, Liselot; Verhey, Frans; Vugt, Marjolein de; Wolfs, Claire; Eriksen, Siren; Røsvik, Janne; Marques, Maria J; Gonçalves-Pereira, Manuel; Sjölund, Britt-Marie; Woods, Bob; Jelley, Hannah; Orrell, Martin; Stephan, Astrid
As part of the ActifCare (ACcess to Timely Formal Care) project, we conducted expert interviews in eight European countries with policy and political decision makers, or representatives of relevant institutions, to determine their perspectives on access to formal care for people with dementia and their carers. Each ActifCare country (Germany, Ireland, Italy, The Netherlands, Norway, Portugal, Sweden, United Kingdom) conducted semi-structured interviews with 4-7 experts (total N = 38). The interview guide addressed the topics "Complexity and Continuity of Care", "Formal Services", and "Public Awareness". Country-specific analysis of interview transcripts used an inductive qualitative content analysis. Cross-national synthesis focused on similarities in themes across the ActifCare countries. The analysis revealed ten common themes and two additional sub-themes across countries. Among others, the experts highlighted the need for a coordinating role and the necessity of information to address issues of complexity and continuity of care, demanded person-centred, tailored, and multidisciplinary formal services, and referred to education, mass media and campaigns as means to raise public awareness. Policy and political decision makers appear well acquainted with current discussions among both researchers and practitioners of possible approaches to improve access to dementia care. Experts described pragmatic, realistic strategies to influence dementia care. Suggested innovations concerned how to achieve improved dementia care, rather than transforming the nature of the services provided. Knowledge gained in these expert interviews may be useful to national decision makers when they consider reshaping the organisation of dementia care, and may thus help to develop best-practice strategies and recommendations.
Robert L Grant
Full Text Available Dementia is one of the most disabling and burdensome diseases. Incontinence in people with dementia is distressing, adds to carer burden, and influences decisions to relocate people to care homes. Successful and safe management of incontinence in people with dementia presents additional challenges. The aim of this study was to investigate the rates of first diagnosis in primary care of urinary and faecal incontinence among people aged 60-89 with dementia, and the use of medication or indwelling catheters for urinary incontinence.We extracted data on 54,816 people aged 60-89 with dementia and an age-gender stratified sample of 205,795 people without dementia from 2001 to 2010 from The Health Improvement Network (THIN, a United Kingdom primary care database. THIN includes data on patients and primary care consultations but does not identify care home residents. Rate ratios were adjusted for age, sex, and co-morbidity using multilevel Poisson regression. The rates of first diagnosis per 1,000 person-years at risk (95% confidence interval for urinary incontinence in the dementia cohort, among men and women, respectively, were 42.3 (40.9-43.8 and 33.5 (32.6-34.5. In the non-dementia cohort, the rates were 19.8 (19.4-20.3 and 18.6 (18.2-18.9. The rates of first diagnosis for faecal incontinence in the dementia cohort were 11.1 (10.4-11.9 and 10.1 (9.6-10.6. In the non-dementia cohort, the rates were 3.1 (2.9-3.3 and 3.6 (3.5-3.8. The adjusted rate ratio for first diagnosis of urinary incontinence was 3.2 (2.7-3.7 in men and 2.7 (2.3-3.2 in women, and for faecal incontinence was 6.0 (5.1-7.0 in men and 4.5 (3.8-5.2 in women. The adjusted rate ratio for pharmacological treatment of urinary incontinence was 2.2 (1.4-3.7 for both genders, and for indwelling urinary catheters was 1.6 (1.3-1.9 in men and 2.3 (1.9-2.8 in women.Compared with those without a dementia diagnosis, those with a dementia diagnosis have approximately three times the rate of
Hou, Pik Yi; Lai, Claudia Kam Yuk; Chung, Ching Sum; Sham, Amy Kin Kwan; Yeung, Ching Lai
The aim of the present study was to explore the experiences and perceptions young adults had of family members who are caring for a relative with dementia. An exploratory qualitative study with semi-structured interviews was carried out and data were collected from 24 young adults recruited through purposive sampling. The participants had to have a close relative who was caring for an elderly family member with dementia. A content analysis approach was used for the verbatim transcription. The findings showed that caring for a relative with dementia was perceived as a time-consuming, exhausting and long-term task. The participants experienced stress and strain, although they were not the primary caregivers. Despite their negative perceptions of the task, they were willing to take on the responsibility of becoming a primary caregiver in the future. However, they intended to seek assistance in meeting their caregiving roles and responsibilities. Seeing how their close relative cared for a dependent older adult led them to reflect on what they would become in the future. Interestingly, although the participants expected their future offspring to take care of them when they became old, they did not want to be a burden to their children. Young adults are the caregivers of tomorrow. Knowing their perspective on caregiving is important if health professionals are to help them evolve into a caregiving role. It has implications for realizing the goal of aging in place. Geriatr Gerontol Int 2016; 16: 873-879. © 2015 Japan Geriatrics Society.
Teipel, Stefan J; Keller, Felix; Thyrian, Jochen R; Strohmaier, Urs; Altiner, Attila; Hoffmann, Wolfgang; Kilimann, Ingo
Once a patient or a knowledgeable informant has noticed decline in memory or other cognitive functions, initiation of early dementia assessment is recommended. Hippocampus and cholinergic basal forebrain (BF) volumetry supports the detection of prodromal and early stages of Alzheimer's disease (AD) dementia in highly selected patient populations. To compare effect size and diagnostic accuracy of hippocampus and BF volumetry between patients recruited in highly specialized versus primary care and to assess the effect of white matter lesions as a proxy for cerebrovascular comorbidity on diagnostic accuracy. We determined hippocampus and BF volumes and white matter lesion load from MRI scans of 71 participants included in a primary care intervention trial (clinicaltrials.gov identifier: NCT01401582) and matched 71 participants stemming from a memory clinic. Samples included healthy controls and people with mild cognitive impairment (MCI), AD dementia, mixed dementia, and non-AD related dementias. Volumetric measures reached similar effect sizes and cross-validated levels of accuracy in the primary care and the memory clinic samples for the discrimination of AD and mixed dementia cases from healthy controls. In the primary care MCI cases, volumetric measures reached only random guessing levels of accuracy. White matter lesions had only a modest effect on effect size and diagnostic accuracy. Hippocampus and BF volumetry may usefully be employed for the identification of AD and mixed dementia, but the detection of MCI does not benefit from the use of these volumetric markers in a primary care setting.
Weert, J.C.M. van; Janssen, B.M.; Dulmen, A.M. van; Spreeuwenberg, P.M.M.; Bensing, J.M.; Ribbe, M.W.
Aim: This paper reports an investigation of the effects of the implementation of snoezelen, or multisensory stimulation, on the quality of nursing assistants' behaviour during morning care. Background: Nursing assistants in long-term dementia care are often unaware of the impact of their behaviour
van Bussel, Emma F.; Richard, Edo; Coloma, Preciosa M.; de Waal, Margot W. M.; van den Akker, Marjan; Nielen, Markus M. J.; van Boven, Kees; Busschers, Wim B.; van Gool, Willem A.
Background Recent reports have suggested declining age-specific incidence rates of dementia in high-income countries over time. Improved education and cardiovascular health in early age have been suggested to be bringing about this effect. The aim of this study was to estimate the age-specific dementia incidence trend in primary care records from a large population in the Netherlands. Methods and findings A dynamic cohort representative of the Dutch population was composed using primary care records from general practice registration networks (GPRNs) across the country. Data regarding dementia incidence were obtained using general-practitioner-recorded diagnosis of dementia within the electronic health records. Age-specific dementia incidence rates were calculated for all persons aged 60 y and over; negative binomial regression analysis was used to estimate the time trend. Nine out of eleven GPRNs provided data on more than 800,000 older people for the years 1992 to 2014, corresponding to over 4 million person-years and 23,186 incident dementia cases. The annual growth in dementia incidence rate was estimated to be 2.1% (95% CI 0.5% to 3.8%), and incidence rates were 1.08 (95% CI 1.04 to 1.13) times higher for women compared to men. Despite their relatively low numbers of person-years, the highest age groups contributed most to the increasing trend. There was no significant overall change in incidence rates since the start of a national dementia program in 2003 (−0.025; 95% CI −0.062 to 0.011). Increased awareness of dementia by patients and doctors in more recent years may have influenced dementia diagnosis by general practitioners in electronic health records, and needs to be taken into account when interpreting the data. Conclusions Within the clinical records of a large, representative sample of the Dutch population, we found no evidence for a declining incidence trend of dementia in the Netherlands. This could indicate true stability in incidence rates, or
Emma F van Bussel
Full Text Available Recent reports have suggested declining age-specific incidence rates of dementia in high-income countries over time. Improved education and cardiovascular health in early age have been suggested to be bringing about this effect. The aim of this study was to estimate the age-specific dementia incidence trend in primary care records from a large population in the Netherlands.A dynamic cohort representative of the Dutch population was composed using primary care records from general practice registration networks (GPRNs across the country. Data regarding dementia incidence were obtained using general-practitioner-recorded diagnosis of dementia within the electronic health records. Age-specific dementia incidence rates were calculated for all persons aged 60 y and over; negative binomial regression analysis was used to estimate the time trend. Nine out of eleven GPRNs provided data on more than 800,000 older people for the years 1992 to 2014, corresponding to over 4 million person-years and 23,186 incident dementia cases. The annual growth in dementia incidence rate was estimated to be 2.1% (95% CI 0.5% to 3.8%, and incidence rates were 1.08 (95% CI 1.04 to 1.13 times higher for women compared to men. Despite their relatively low numbers of person-years, the highest age groups contributed most to the increasing trend. There was no significant overall change in incidence rates since the start of a national dementia program in 2003 (-0.025; 95% CI -0.062 to 0.011. Increased awareness of dementia by patients and doctors in more recent years may have influenced dementia diagnosis by general practitioners in electronic health records, and needs to be taken into account when interpreting the data.Within the clinical records of a large, representative sample of the Dutch population, we found no evidence for a declining incidence trend of dementia in the Netherlands. This could indicate true stability in incidence rates, or a balance between increased
van den Dungen, Pim; van Marwijk, Harm W. M.; van der Horst, Henriëtte E.; Moll van Charante, Eric P.; Macneil Vroomen, Janet; van de Ven, Peter M.; van Hout, Hein P. J.
Objective: Optimising care for dementia patients and their informal carers is imperative in light of the impending dementia epidemic. An important aspect of care is accurate recognition and diagnosis of dementia. The aim of this review was to estimate family physicians' diagnostic accuracy at the
van den Dungen, P.; van Marwijk, H.W.J.; van der Horst, H.E.; van Charante, E.P.M.; Vroomen, J.M.; van de Ven, P.M.; van Hout, H.P.J.
Objective Optimising care for dementia patients and their informal carers is imperative in light of the impending dementia epidemic. An important aspect of care is accurate recognition and diagnosis of dementia. The aim of this review was to estimate family physicians' diagnostic accuracy at the
van den Dungen Pim
Full Text Available Abstract Background In the primary care setting, dementia is often diagnosed relatively late in the disease process. Case finding and proactive collaborative care may have beneficial effects on both patient and informal caregiver by clarifying the cause of cognitive decline and changed behaviour and by enabling support, care planning and access to services. We aim to improve the recognition and diagnosis of individuals with dementia in general practice. In addition to this diagnostic aim, the effects of case finding and subsequent care on the mental health of individuals with dementia and the mental health of their informal carers are explored. Methods and design Design: cluster randomised controlled trial with process evaluation. Participants: 162 individuals ≥ 65 years, in 15 primary care practices, in whom GPs suspect cognitive impairment, but without a dementia diagnosis. Intervention; case finding and collaborative care: 2 trained practice nurses (PNs invite all patients with suspected cognitive impairment for a brief functional and cognitive screening. If the cognitive tests are supportive of cognitive impairment, individuals are referred to their GP for further evaluation. If dementia is diagnosed, a comprehensive geriatric assessment takes place to identify other relevant geriatric problems that need to be addressed. Furthermore, the team of GP and PN provide information and support. Control: GPs provide care and diagnosis as usual. Main study parameters: after 12 months both groups are compared on: 1 incident dementia (and MCI diagnoses and 2 patient and caregiver quality of life (QoL-AD; EQ5D and mental health (MH5; GHQ 12 and caregiver competence to care (SSCQ. The process evaluation concerns facilitating and impeding factors to the implementation of this intervention. These factors are assessed on the care provider level, the care recipient level and on the organisational level. Discussion This study will provide insight
Hunter, Andrew; Keady, John; Casey, Dympna; Grealish, Annmarie; Murphy, Kathy
The objective of this study was to develop a substantive grounded theory of staff psychosocial intervention use with residents with dementia in long-stay care. "Becoming a person again" emerged as the core category accounting for staffs' psychosocial intervention use within long-stay care. Interview data were collected from participants in nine Irish long-stay settings: 14 residents with dementia, 19 staff nurses, one clinical facilitator, seven nurse managers, 21 nursing assistants, and five relatives. Constant comparative method guided the data collection and analysis. The researcher's theoretical memos, based on unstructured observation, and applicable extant literature were also included as data. By identifying the mutuality of the participants' experiences, this classic grounded theory explains staff motivation toward psychosocial intervention use within long-stay care. It also explains how institutional factors interact with those personal factors that incline individuals toward psychosocial intervention use. © The Author(s) 2016.
The approach to nursing in long-term care settings for people living with dementia continues to evolve from a traditional, task-oriented culture to one that is person-centred. Such change can be difficult to manage and may encounter considerable opposition; having an understanding of change management and leadership styles may help to make this transition easier. This article discusses the differences between task-oriented and person-centred care, theories of management, motivation and leadership styles, and focuses on those that are most appropriate for this type of change. An improved understanding of these theories will enable nurses to support others in the delivery of person-centred care.
Kontos, Pia; Miller, Karen-Lee; Colobong, Romeo; Lazgare, Luis Ivan Palma; Binns, Malcolm; Low, Lee-Fay; Surr, Claire; Naglie, Gary
To assess the effects of elder-clowning on moderate to severe behavioral and psychological symptoms of dementia (BPSD) in nursing home residents with dementia, primarily of the Alzheimer's type.Before-and-after study.Nursing home.Nursing home residents with moderate to severe BPSD, as defined according to a Neuropsychiatric Inventory-Nursing Home version (NPI-NH) score of 10 or greater (N = 23), and their care aides.A pair of elder-clowns visited all residents twice weekly (~10 minutes per vi...
Full Text Available Abstract Background Dementia syndromes are under-diagnosed and under-treated in primary care. Earlier recognition of and response to dementia syndrome is likely to enhance the quality of life of people with dementia, but general practitioners consistently report limited skills and confidence in diagnosis and management of this condition. Changing clinical practice is difficult, and the challenge for those seeking change it is to find ways of working with the grain of professional knowledge and practice. Assessment of educational needs in a practice has the potential to accommodate variations in individual understanding and competence, learning preferences and skill mix. Educational prescriptions identify questions that need to be answered in order to address a clinical problem. This paper reports the development of an educational needs assessment tool to guide tailored educational interventions designed to enhance early diagnosis and management of dementia in primary care, in the Evidence Based Interventions in Dementia in the Community – Early Diagnosis trial. Methods A multidisciplinary team, including a lay researcher, used an iterative technology development approach to create an educational needs assessment tool, from which educational prescriptions could be written. Workplace learning was tailored to each practice using the educational prescription, and the method was field-tested in five pilot practices. Results The educational prescriptions appeared acceptable and useful in volunteer practices. The time commitment (no more than four hours, spread out at the practice’s discretion appeared manageable. The pilot group of practices prioritised diagnosis, assessment of carers’ needs, quality markers for dementia care in general practice, and the implications of the Mental Capacity Act (2005 for their clinical practice. The content of the educational needs assessment tool seemed to be comprehensive, in that no new topics were identified
Odzakovic, Elzana; Hydén, Lars-Christer; Festin, Karin; Kullberg, Agneta
This study aims to examine what types of home care services and housing are granted to people with a dementia diagnosis and how these types are associated with socio-demographic factors (sex, age, marital status, native or foreign born, and regional area). A cross-sectional study of all people diagnosed with dementia in three Swedish counties was conducted from the medical records in 2012. Logistic regression analysis was carried out to investigate associations between home care services and housing and socio-demographic variables. In total, 17,405 people had a dementia diagnosis, and the majority were women, aged 80+ years, and unmarried. Some 72% were living in ordinary housing and 28% lived in special housing. Of those who lived in ordinary housing, 50% did not receive any home care service. Not receiving any type of home care services was less common for older people and was also associated with being married and living in rural municipalities. The most common home care services granted were home help and personal care. Special housing was more common for older people, unmarried persons, and those living in rural municipalities. Most people with a dementia diagnosis were living in ordinary housing, and, surprisingly, half of those did not receive any type of home care service. This knowledge is essential for making the living conditions and needs of people living with dementia more visible and to provide good home care services for people with dementia and their families.
Adams, Sherri; Nicholas, David; Mahant, Sanjay; Weiser, Natalie; Kanani, Ronik; Boydell, Katherine; Cohen, Eyal
Children with medical complexity require multiple providers and services to keep them well and at home. A care map is a patient/family-created diagram that pictorially maps out this complex web of services. This study explored what care maps mean for families and healthcare providers to inform potential for clinical use. Parents (n=15) created care maps (hand drawn n=10 and computer-generated n=5) and participated in semi-structured interviews about the process of developing care maps and their perceived impact. Healthcare providers (n=30) reviewed the parent-created care maps and participated in semi-structured interviews. Data were analysed for themes and emerging theory using a grounded theory analytical approach. Data analysis revealed 13 overarching themes that were further categorized into three domains: features (characteristics of care maps), functions (what care maps do), and emerging outcomes (benefits of care map use). These domains further informed a definition and a theoretical model of how care maps work. Our findings suggest that care maps may be a way of supporting patient- and family-centred care by graphically identifying and integrating experiences of the family as well as priorities for moving forward. Care maps were endorsed as a useful tool by families and providers. They help healthcare providers better understand parental priorities for care. Parents can create care maps to demonstrate the complex burden of care. They are a unique visual way to incorporate narrative medicine into practice. © 2017 Mac Keith Press.
Smith, Kate; Flicker, Leon; Shadforth, Geraldine; Carroll, Emily; Ralph, Naomi; Atkinson, David; Lindeman, Melissa; Schaper, Frank; Lautenschlager, Nicola T; LoGiudice, Dina
Dementia is five-fold more prevalent among Aboriginal than non-Aboriginal Australians. Despite this, the quality of care available to people living with dementia in remote Aboriginal communities is poor. The objective of this study was to determine ways to overcome factors affecting the successful delivery of services to Aboriginal people with dementia living in remote communities, and to their families and communities. This qualitative research took place in the Kimberley Region of Western Australia. Data collection occurred in three stages: (1) interviews with service providers to identify the services available; (2) interviews with the caregivers of Aboriginal people living with dementia and community-based care workers; and (3) focus groups with community representatives and community care staff. Each stage was concluded when no new themes emerged. At each stage the transcribed information was analysed and joint interpretation identified common themes. In total, 42 service providers, 31 caregivers and community-based care workers were interviewed and 3 focus groups were conducted. Obstacles to accessing quality care were mentioned and recommendations on ways to improve care were made. The key themes that emerged were caregiver role, perspectives of dementia, community and culturally-appropriate care, workforce, education and training, issues affecting remote communities and service issues. Detailed information on how each theme affects the successful delivery of dementia care is provided. These research findings indicate that people living with dementia and their caregivers in remote Aboriginal communities are struggling to cope. They are requesting and require better community care. Implementing a culturally safe model of dementia care for remote Aboriginal communities that encompasses the recommendations made and builds on the strengths of the communities could potentially deliver the required improvements to dementia care for this population.
Nicholls, Daniel; Chang, Esther; Johnson, Amanda; Edenborough, Michel
This article presents the mental health aspects of 'touch' associated with a funded research project: Avoiding 'high tech' through 'high touch' in end-stage dementia: Protocol for care at the end-of-life. These mental health aspects highlight the human need for touch that continues up until and inclusive of the final stages of life. This study was informed by Simard's (2007) 'high touch' protocol based on the End-of-Life Namaste Care programme for people with dementia. The article is situated in relation to the research project which used a three-phase mixed methods approach. Data explored in this article are derived from focus groups conducted at three residential aged care facilities located in metropolitan and regional areas of NSW, Australia. The exploration of touch vis-a-vis mental health fell under two broad themes: touch by others and touch by the person. Sub-elements of these themes comprised touch towards a physical objective, touch towards an emotional objective, touch of objects and touch of others. The overarching outcome of interconnectedness embraced environmental awareness and human and life awareness. These two broad themes, with their accompanying elements, express the essential nature of mental health as a reciprocal connectedness, with reciprocal impacts on both those people with advanced dementia and their carers.
Bartlett, Ruth; Gjernes, Trude; Lotherington, Ann-Therese; Obstefelder, Aud
Gender is a neglected dimension in public discourse related to people with dementia. Those living with this condition are typically portrayed in policies and strategies in gender neutral terms as 'people with dementia' and 'family carers' as if gender does not matter, when clearly it does. The purpose of this scoping review was to take stock of knowledge about gender differences in relation to dementia care to inform policy and future research. The work is grounded in a feminist perspective to citizenship, as this provide a lens with which to expose and examine gendered assumptions within dementia studies. A search of four databases, including CINAHL, Web of Science, Medline and Cochrane was conducted using systematic techniques between May and July 2014. A repeat search was conducted in February 2015. We found a significant amount of valuable research concerned with gender differences in relation to dementia care published from 1990 to 2014; the majority of which lacks a feminist citizenship perspective. Moreover, a disproportionate number of studies focused solely on caregivers rather than citizens with dementia. As such, questions about gender equality are not being raised and the voices of men and women with dementia are silent. Thus we argue for increased gender-sensitivity in policy making and recommend that social scientists inject a feminist citizenship perspective into their work. © 2016 John Wiley & Sons Ltd.
Streater, Amy; Coleston-Shields, Donna Maria; Yates, Jennifer; Stanyon, Miriam; Orrell, Martin
Research on crisis teams for older adults with dementia is limited. This scoping review aimed to 1) conduct a systematic literature review reporting on the effectiveness of crisis interventions for older people with dementia and 2) conduct a scoping survey with dementia crisis teams mapping services across England to understand operational procedures and identify what is currently occurring in practice. For the systematic literature review, included studies were graded using the Critical Appraisal Skills Programme checklist. For the scoping survey, Trusts across England were contacted and relevant services were identified that work with people with dementia experiencing a mental health crisis. The systematic literature review demonstrated limited evidence in support of crisis teams reducing the rate of hospital admissions, and despite the increase in number of studies, methodological limitations remain. For the scoping review, only half (51.8%) of the teams had a care pathway to manage crises and the primary need for referral was behavioral or psychological factors. Evidence in the literature for the effectiveness of crisis teams for older adults with dementia remains limited. Being mainly cohort designs can make it difficult to evaluate the effectiveness of the intervention. In practice, it appears that the pathway for care managing crisis for people with dementia varies widely across services in England. There was a wide range of names given to the provision of teams managing crisis for people with dementia, which may reflect the differences in the setup and procedures of the service. To provide evidence on crisis intervention teams, a comprehensive protocol is required to deliver a standardized care pathway and measurable intervention as part of a large-scale evaluation of effectiveness.
Wang, Feilong; Xiao, Lily Dongxia; Wang, Kaifa; Li, Min; Yang, Yanni
Community nurses play a crucial role in early detection and timely diagnosis of dementia. However, they are usually not prepared for the role through their formal education, particularly in low- and middle-income countries due to undeveloped nursing curriculum in dementia care. This paper describes a two-arm cluster-randomized controlled trial to improve community nurses' knowledge, attitudes, and practice changes using an innovative and interactive mobile phone applet-based activity in primary care settings. The intervention sites received dementia-specific training and control sites received care training for older people with disability. Both groups completed measures assessing dementia knowledge, attitudes, and intentions to make changes to achieve early detection and a timely diagnosis of dementia immediately after training and at 3-month follow-up. The intervention group provided feedback immediately after training and at 3-month follow-up. The main results show that the intervention group demonstrated significant improvement in dementia knowledge and attitudes from baseline immediately after training and at the 3-month follow-up. The intervention group also showed more intentions to make changes to achieve early detection of dementia. Feedback suggested the program was well-received. Overall, the program showed acceptability and feasibility in improving nurses' dementia knowledge, attitudes, and intentions to achieve early detection of dementia. Copyright © 2017 Elsevier Inc. All rights reserved.
Lathren, Christine R; Sloane, Philip D; Hoyle, Joseph D; Zimmerman, Sheryl; Kaufer, Daniel I
Primary care physicians routinely provide dementia care, but may lack the clinical skills and awareness of available resources to provide optimal care. We conducted a community-based pilot dementia training intervention designed to both improve clinical competency and increase utilization of local dementia care services. Physicians (N = 29) and affiliated staff (N = 24) participated in a one-day training program on dementia screening, diagnosis and management that included direct engagement with local support service providers. Questionnaires about their dementia care competency and referral patterns were completed before and 6 months after the training intervention. Physicians reported significantly higher overall confidence in their dementia care competency 6 months post-training compared to pre-training. The largest reported improvements were in their ability to educate patients and caregivers about dementia and making appropriate referrals to community care services. Participants also reported markedly increased use of cognitive screening tools in providing care. Community service providers recorded approximately 160 physician-initiated referrals over a 2 year-period post-training, compared to few beforehand. Combining a targeted physician practice-based educational intervention with community service engagement improves dementia care competency in clinicians and promotes linkages between clinical and community dementia care providers.
Ihl, Ralf; Bunevicius, Robertas; Frölich, Lutz
OBJECTIVE: To define a practice guideline for biological treatment of dementias for general practitioners in primary care. METHODS: This paper is a short and practical summary of the World Federation of Biological Psychiatry (WFSBP) guidelines for the Biological treatment of Alzheimer's disease...... and other dementias for treatment in primary care ( Ihl et al. 2011 ). The recommendations were developed by a task force of international experts in the field and are based on randomized controlled studies. RESULTS: Anti-dementia medications neither cure, nor arrest, or alter the course of the disease....... The type of dementia, the individual symptom constellation and the tolerability and evidence for efficacy should determine what medications should be used. In treating neuropsychiatric symptoms, psychosocial intervention should be the treatment of first choice. For neuropsychiatric symptoms, medications...
Dementia is the most common neurological disorder worldwide and is a life-limiting condition, but very often is not recognised as such. People with dementia, and their carers, have been shown to have palliative care needs equal in extent to those of cancer patients. However, many people with advanced dementia are not routinely being assessed to determine their palliative care needs, and it is not clear why this is so.
Davies, Nathan; Mathew, Rammya; Wilcock, Jane; Manthorpe, Jill; Sampson, Elizabeth L; Lamahewa, Kethakie; Iliffe, Steve
The end of life for someone with dementia can present many challenges for practitioners; such as, providing care if there are swallowing difficulties. This study aimed to develop a toolkit of heuristics (rules-of-thumb) to aid practitioners making end-of-life care decisions for people with dementia. An iterative co-design approach was adopted using a literature review and qualitative methods, including; 1) qualitative interviews and focus groups with family carers and 2) focus groups with health and care professionals. Family carers were recruited from a national charity, purposively sampling those with experience of end-of-life care for a person with dementia. Health and care professionals were purposively sampled to include a broad range of expertise including; general practitioners, palliative care specialists, and geriatricians. A co-design group was established consisting of health and social care experts and family carers, to synthesise the findings from the qualitative work and produce a toolkit of heuristics to be tested in practice. Four broad areas were identified as requiring complex decisions at the end of life; 1) eating/swallowing difficulties, 2) agitation/restlessness, 3) ending life-sustaining treatment, and 4) providing "routine care" at the end of life. Each topic became a heuristic consisting of rules arranged into flowcharts. Eating/swallowing difficulties have three rules; ensuring eating/swallowing difficulties do not come as a surprise, considering if the situation is an emergency, and considering 'comfort feeding' only versus time-trialled artificial feeding. Agitation/restlessness encourages a holistic approach, considering the environment, physical causes, and the carer's wellbeing. Ending life-sustaining treatment supports practitioners through a process of considering the benefits of treatment versus quality-of-life and comfort. Finally, a heuristic on providing routine care such as bathing, prompts practitioners to consider adapting
... help improve communication skills and prevent wandering. Calming music may reduce wandering and restlessness, ease anxiety, and ... Budson AE, Solomon PR. Why diagnose and treat memory loss, Alzheimer's disease, and dementia? In: Budson AE, ...
Verreault, René; Arcand, Marcel; Misson, Lucie; Durand, Pierre J; Kroger, Edeltraut; Aubin, Michèle; Savoie, Maryse; Hadjistavropoulos, Thomas; Kaasalainen, Sharon; Bédard, Annick; Grégoire, Annie; Carmichael, Pierre-Hughes
Improvement in the quality of end-of-life care for advanced dementia is increasingly recognized as a priority in palliative care. To evaluate the impact of a multidimensional intervention to improve quality of care and quality of dying in advanced dementia in long-term care facilities. Quasi-experimental study with the intervention taking place in two long-term care facilities versus usual care in two others over a 1-year period. The intervention had five components: (1) training program to physicians and nursing staff, (2) clinical monitoring of pain using an observational pain scale, (3) implementation of a regular mouth care routine, (4) early and systematic communication with families about end-of-life care issues with provision of an information booklet, and (5) involvement of a nurse facilitator to implement and monitor the intervention. Quality of care was assessed with the Family Perception of Care Scale. The Symptom Management for End-of-Life Care in Dementia and the Comfort Assessment in Dying scales were used to assess the quality of dying. A total of 193 residents with advanced dementia and their close family members were included (97 in the intervention group and 96 in the usual care group). The Family Perception of Care score was significantly higher in the intervention group than in the usual care group (157.3 vs 149.1; p = 0.04). The Comfort Assessment and Symptom Management scores were also significantly higher in the intervention group. Our multidimensional intervention in long-term care facilities for patients with terminal dementia resulted in improved quality of care and quality of dying when compared to usual care.
Roelofs, T.S.M.; Luijkx, K.G.; Embregts, P.J.C.M.
The experiences and needs of spouses of residential care facility residents with dementia, regarding friendship, love, intimacy, and sexuality were explored. Understanding of how spouses make sense of their experiences was pursued. Semi-structured interviews were held with nine spouses of people
Penders, Yolanda W H; Albers, Gwenda; Deliens, Luc; Vander Stichele, Robert; Van den Block, Lieve
High-quality palliative care for people with dementia should be patient-centered, family-focused, and include well-informed and shared decision-making, as affirmed in a recent white paper on dementia from the European Association for Palliative Care. To describe how often family carers of nursing home residents who died with dementia are aware that their relative has dementia, and study resident, family carer, and care characteristics associated with awareness. Post-death study using random cluster sampling. Structured questionnaires were completed by family carers, nursing staff, and general practitioners of deceased nursing home residents with dementia in Flanders, Belgium (2010). Of 190 residents who died with dementia, 53.2% of family carers responded. In 28% of cases, family carers indicated they were unaware their relative had dementia. Awareness by family carers was related to more advanced stages of dementia 1 month before death (odds ratio = 5.4), with 48% of family carers being unaware when dementia was mild and 20% unaware when dementia was advanced. The longer the onset of dementia after admission to a nursing home, the less likely family carers were aware (odds ratio = 0.94). Family carers are often unaware that their relative has dementia, that is, in one-fourth of cases of dementia and one-fifth of advanced dementia, posing considerable challenges for optimal care provision and end-of-life decision-making. Considering that family carers of residents who develop dementia later after admission to a nursing home are less likely to be aware, there is room for improving communication strategies toward family carers of nursing home residents. © The Author(s) 2014.
Wallack, Elizabeth M; Harris, Chelsea; Ploughman, Michelle; Butler, Roger
Telegerontology is an approach using videoconferencing to connect an interdisciplinary team in a regional specialty center to patients in rural communities, which is becoming increasingly practical for addressing current limitations in rural community-based dementia care. Using the remotely-delivered expertise of the Telegerontology dementia care team, we aim to enhance the caregiver/patient/physician triad and thereby provide the necessary support for the person with dementia to "age in place." This is a cluster randomized feasibility trial with four rural regions in the province of Newfoundland and Labrador, Canada (2 regions randomly assigned to "intervention" and 2 to "control"). The study population includes 22 "dementia triads" that consist of a community-dwelling older Canadian with moderate to late dementia, their family caregivers, and their Primary Care Physician (PCP). Over the 6-month active study period, all participants will be provided an iPad. The intervention is intended as an adjunct to existing PCP care, consisting of weekly Skype-based videoconferencing calls with the Telegerontology physician, and other team members as needed (occupational therapist, physical therapist etc). Control participants receive usual community-based dementia care with their PCP. A baseline (pre-) assessment will be performed during a home visit with the study team. Post intervention, 6- and 12-month follow-up assessments will be collected remotely using specialized dementia monitoring applications and Skype calls. Primary outcomes include admission to long-term care, falls, emergency room visits, hospital stays, and caregiver burden. Results will be available in March of 2018. Results from this study will demonstrate a novel approach to dementia care that has the potential to impact both rural PCPs, family caregivers, and people with dementia, as well as provide evidence for the utility of Telegerontology in models of eHealth-based care. ©Elizabeth M. Wallack, Chelsea
Karen Harrison Dening
Full Text Available When a person with dementia (PWD has lost the ability to make treatment decisions, clinicians often rely on family carers to know and articulate these preferences with assumed accuracy. This study used the Life Support Preferences Questionnaire (LSPQ to explore whether family carers' choices show agreement with the end of life care preferences of the person with dementia for whom they care and what factors influence this.A cross-sectional study interviewing 60 dyads (a person with early dementia and preserved capacity and their family carer each completing a modified LSPQ. We assessed how closely carers' choices resembled the PWD's preferences for treatment in three proposed health states: the here and now; severe stroke with coma; terminal cancer. Agreement between the PWD and their family carer responses was assessed using Kappa and Prevalence-Adjusted Bias-Adjusted Kappa (PABAK statistics. We examined whether carer burden and distress, and relationship quality, influenced agreement.In interviews PWD were able to indicate their treatment preferences across all three scenarios. In the here-and-now most wanted antibiotics (98%, fewer cardio-pulmonary resuscitation (CPR (50% and tube feeding (47%. In severe stroke and coma antibiotics remained the more preferred treatment (88%, followed by CPR (57% and tube feeding (30%. In advanced cancer PWD expressed lower preferences for all treatments (antibiotics 68%; CPR 50%; tube feeding 37%. Carers' choices were similar to the PWDs' preferences in the here-and-now (71% (k = 0.03; PABAK = 0.4 with less agreement for future hypothetical health states. In severe stroke and coma carers tended wrongly to suggest that the PWD preferred more intervention (antibiotic, 67%; k = -0.022; PABAK = -0.60; CPR, 73%; k = 0.20; PABAK = -0.20, tube feeding, 66%; k = 0.25; PABAK = -0.12. In advanced cancer the agreement between PWD and carers was low (antibiotics; k = -0.03; PABAK = -0.52; CPR, k = -0.07; PABAK = -0
Ollerenshaw, Alison; Wong Shee, Anna; Yates, Mark
To explore the awareness and usage of an online dementia pathways tool (including decision tree and region-specific dementia services) for primary health practitioners (GPs and nurses) in regional Victoria. Quantitative pilot study using surveys and Google Analytics. A large regional area (48 000 square kilometres, population 220 000) in Victoria. Two hundred and sixty-three GPs and 160 practice nurses were invited to participate, with 42 respondents (GPs, n = 21; practice nurses, n = 21). Primary care practitioners' awareness and usage of the dementia pathways tool. Survey respondents that had used the tool (n = 14) reported accessing information about diagnosis, management and referral. Practitioners reported improvements in knowledge, skills and confidence about core dementia topics. There were 9683 page views between August 2013 and February 2015 (monthly average: 509 page views). The average time spent on page was 2.03 min, with many visitors (68%) spending more than 4 min at the site. This research demonstrates that the tool has been well received by practitioners and has been consistently used since its launch. Health practitioners' valued the content and the availability of local resources. Primary health practitioners reported that the dementia pathways tool provided access to region-specific referral and management resources for all stages of dementia. Such tools have broad transferability in other health areas with further research needed to determine their contribution to learning in the practice setting and over time. © 2017 National Rural Health Alliance Inc.
Boughtwood, Desiree; Shanley, Christopher; Adams, Jon; Santalucia, Yvonne; Kyriazopoulos, Helena; Rowland, Jeffrey; Pond, Dimity
Members of minority populations often have difficulty knowing about and accessing dementia services. One of the strategies used to promote access is the employment of bilingual/bicultural workers (sometimes referred to as multicultural, link or outreach workers). This study involved interviews with 24 bilingual/bicultural workers in south western Sydney, Australia to gain a better understanding of their role within the dementia field. Seven themes emerged: importance of working with family; process of building trust when moving between two cultures; importance of understanding the culture; self-care and culture; flexibility of their role; linking community members; and linking communities to mainstream services. Bilingual/bicultural workers play a significant and complex role in supporting individuals and families within their community who are affected by dementia. The significance of their role needs to be more clearly acknowledged in the development of policy, further research and service provision within the dementia field.
van Dulmen, Sandra; Smits, Lies; Eide, Hilde
To explore in what way emotional communication can enhance the memory of people with (different types of) dementia. Relevant studies published after 2000 were searched using the terms: dementia, positive, words, communication, recall, and memory. Papers were included that reported results of studies with people with dementia that investigated memory effects of communication with either an emotionally valent content or context. Twelve papers grouped under four prevailing themes (pictures, facial emotions, stories and words) are described. The studies provide mixed results: in some studies negative emotional information enhances memory in older people with dementia, in other studies positive emotional information is helpful or hardly any effect is found. Emotional communication seems to enhance memory in people with dementia. None of the studies described focused on the association between personally relevant, emotionally valent information and memory, so further research is needed. Caregivers in dementia care should realize that 1) the information they provide might carry an emotional valence, and 2) this valence might influence the extent to which people with dementia remember information. Copyright © 2017 Elsevier B.V. All rights reserved.
Adlbrecht, Laura; Bartholomeyczik, Sabine; Mayer, Hanna
Background: An existing dementia special care unit should be evaluated. In order to build a sound foundation of the evaluation a deep theoretical understanding of the implemented intervention is needed, which has not been explicated yet. One possibility to achieve this is the development of a program theory. Aim: The aim is to present a method to develop a program theory for the existing living and care concept of the dementia special care unit, which is used in a larger project to evaluate the concept theory-drivenly. Method: The evaluation is embedded in the framework of van Belle et al. (2010) and an action model and a change model (Chen, 2015) is created. For the specification of the change model the contribution analysis (Mayne, 2011) is applied. Data were collected in workshops with the developers and the nurses of the dementia special care unit and a literature research concerning interventions and outcomes was carried out. The results were synthesized in a consens workshop. Results: The action model describes the interventions of the dementia special care unit, the implementers, the organization and the context. The change model compromises the mechanisms through which interventions achieve outcomes. Conclusions: The results of the program theory can be employed to choose data collection methods and instruments for the evaluation. On the basis of the results of the evaluation the program theory can be refined and adapted.
Walters, K; Hardoon, S; Petersen, I; Iliffe, S; Omar, R Z; Nazareth, I; Rait, G
algorithm can identify higher risk populations for dementia in primary care. The risk score has a high negative predictive value and may be most helpful in 'ruling out' those at very low risk from further testing or intensive preventative activities.
Full Text Available Advance care planning is considered a central component of good quality palliative care and especially relevant for people who lose the capacity to make decisions at the end of life, which is the case for many nursing home residents with dementia. We set out to investigate to what extent (1 advance care planning in the form of written advance patient directives and verbal communication with patient and/or relatives about future care and (2 the existence of written advance general practitioner orders are related to the quality of dying of nursing home residents with dementia.Cross-sectional study of deaths (2010 using random cluster-sampling. Representative sample of nursing homes in Flanders, Belgium. Deaths of residents with dementia in a three-month period were reported; for each the nurse most involved in care, GP and closest relative completed structured questionnaires.We identified 101 deaths of residents with dementia in 69 nursing homes (58% response rate. A written advance patient directive was present for 17.5%, GP-orders for 56.7%. Controlling for socio-demographic/clinical characteristics in multivariate regression analyses, chances of having a higher mean rating of emotional well-being (less fear and anxiety on the Comfort Assessment in Dying with Dementia scale were three times higher with a written advance patient directive and more specifically when having a do-not-resuscitate order (AOR 3.45; CI,1.1-11 than for those without either (AOR 2.99; CI,1.1-8.3. We found no association between verbal communication or having a GP order and quality of dying.For nursing home residents with dementia there is a strong association between having a written advance directive and quality of dying. Where wishes are written, relatives report lower levels of emotional distress at the end of life. These results underpin the importance of advance care planning for people with dementia and beginning this process as early as possible.
Waller, Sarah; Masterson, Abigail; Evans, Simon C
The need for more dementia friendly design in hospitals and other care settings is now widely acknowledged. Working with 26 NHS Trusts in England as part of a Department of Health commissioned programme, The King's Fund developed a set of overarching design principles and an environmental assessment tool for hospital wards in 2012. Following requests from other sectors, additional tools were developed for hospitals, care homes, health centres and housing with care. The tools have proven to be effective in both disseminating the principles of dementia friendly design and in enabling the case to be made for improvements that have a positive effect on patient outcomes and staff morale. This paper reports on the development, use and review of the environmental assessment tools, including further work that is now being taken forward by The Association for Dementia Studies, University of Worcester.
Berendonk, Charlotte; Caine, Vera
In Germany, life story work, an approach which acknowledges humans as narrative beings and honors biographies, is required by health authorities to be integrated in care provided in nursing homes. Insufficient attention to life story work could place residents at risk of dehumanization, particularly residents with dementia, who depend on support of others to tell and make meaning of their life experiences. We conducted a qualitative study to gain insights into care providers' perceptions and practices of life story work with persons with dementia. Thirty-six care providers in 7 nursing homes participated in semistructured interviews or group discussions. We derived subjective theories (individual understandings) of care providers and higher-order concept patterns following the principles and processes of grounded theory. We found a great variation in participants' understandings of life story work. Some participants were unsure if and how life story work impacts persons with dementia. Starting points for improving the integration of life story work into practice are discussed. We conclude that care providers need a better understanding of life story work as a nursing intervention. The importance of the notion of humans as narrative beings and the multiple ways in which we story our lives as well as embody life stories needs to be further developed. Knowledge is required about the practical and systemic challenges of integrating life story work in the care of persons with dementia.
Swinnen, Aagje; de Medeiros, Kate
This article examines connections between language, identity, and cultural difference in the context of participatory arts in residential dementia care. Specifically, it looks at how language differences become instruments for the language play that characterizes the participatory arts programs, TimeSlips and the Alzheimer's Poetry Project. These are two approaches that are predominantly spoken-word driven. Although people living with dementia experience cognitive decline that affects language, they are linguistic agents capable of participating in ongoing negotiation processes of connection, belonging, and in- and exclusion through language use. The analysis of two ethnographic vignettes, based on extensive fieldwork in the closed wards of two Dutch nursing homes, illustrates how TimeSlips and the Alzheimer's Poetry Project support them in this agency. The theoretical framework of the analysis consists of literature on the linguistic agency of people living with dementia, the notions of the homo ludens (or man the player) and ludic language, as well as linguistic strategies of belonging in relation to place.
Ryan, Tony; Amen, Karwan M; McKeown, Jane
There exists compelling evidence that advance care planning (ACP) remains a key factor in the delivery of appropriate end of life care and facilitates the timely transition to palliative care for people with dementia. Take up of ACP within the dementia population is low, especially when compared with other conditions. Quantitative research has helped in identifying some of the key factors in enabling or inhibiting the use of ACP within the dementia population. Qualitative research can, however, shed further light upon the experiences of all. We carried out a search of the qualitative literature addressing the ACP experiences of people with dementia, family caregivers and professionals. An approach to qualitative synthesis involving coding of original text, developing descriptive themes and generating analytical themes was utilized. We identified five papers and subsequently five analytical themes: breadth and scope of future planning; challenges to ACP; postponing ACP; confidence in systems and making ACP happen for people with dementia. The synthesized findings shed light on the ongoing challenges of the use and further development of ACP in the population of people with dementia. In particular attention is drawn to the difficulties in the timing of ACP and the preference for informal approaches to planning within the families of people affected by dementia. The ACP capacity of the workforce is also addressed. The paper reveals considerable complexity in undertaking ACP in a context of dementia. It is suggested that the preference for informal approaches and the timing of initial conversations be considered and that the skills of those involved in initiating discussions should be given primacy.
Relationship between speaking English as a second language and agitation in people with dementia living in care homes: Results from the MARQUE (Managing Agitation and Raising Quality of life) English national care home survey.
Cooper, C; Rapaport, P; Robertson, S; Marston, L; Barber, J; Manela, M; Livingston, G
As not speaking English as a first language may lead to increased difficulties in communication with staff and other residents, we (1) tested our primary hypotheses that care home residents with dementia speaking English as a second language experience more agitation and overall neuropsychiatric symptoms, and (2) explored qualitatively how staff consider that residents' language, ethnicity, and culture might impact on how they manage agitation. We interviewed staff, residents with dementia, and their family carers from 86 care homes (2014-2015) about resident's neuropsychiatric symptoms, agitation, life quality, and dementia severity. We qualitatively interviewed 25 staff. Seventy-one out of 1420 (5%) of care home residents with dementia interviewed spoke English as a second language. After controlling for dementia severity, age, and sex, and accounting for care home and staff proxy clustering, speaking English as a second language compared with as a first language was associated with significantly higher Cohen-Mansfield Agitation Inventory (adjusted difference in means 8.3, 95% confidence interval 4.1 to 12.5) and Neuropsychiatric inventory scores (4.1, 0.65 to 7.5). Staff narratives described how linguistic and culturally isolating being in a care home where no residents or staff share your culture or language could be for people with dementia, and how this sometimes caused or worsened agitation. Considering a person with dementia's need to be understood when selecting a care home and developing technology resources to enable dementia-friendly translation services could be important strategies for reducing distress of people with dementia from minority ethnic groups who live in care homes. © 2017 The Authors. International Journal of Geriatric Psychiatry Published by John Wiley & Sons Ltd.
Evans, Elizabeth A; Perkins, Elizabeth; Clarke, Pam; Haines, Alina; Baldwin, Ashley; Whittington, Richard
To determine how care home managers negotiate the conflict between maintaining a safe environment while enabling the autonomy of residents with dementia. This is important because there is limited research with care home managers; yet, they are key agents in the implementation of national policies. Semi-structured interviews were conducted with 18 managers from care homes offering dementia care in the Northwest of England. Data were analysed using a thematic analysis approach. There were three areas in which care home staff reported balancing safety and risk against the individual needs of residents. First, the physical environment created a tension between safety and accessibility to the outside world, which meant that care homes provided highly structured or limited access to outdoor space. Second, care home managers reflected a balancing act between an individual's autonomy and the need to protect their residents' dignity. Finally, care home managers highlighted the ways in which an individual's needs were framed by the needs of other residents to the extent that on some occasions an individual's needs were subjugated to the needs of the general population of a home. There was a strong, even dominant, ethos of risk management and keeping people safe. Managing individual needs while maintaining a safe care home environment clearly is a constant dynamic interpersonal process of negotiating and balancing competing interests for care home managers.
Chu, Mei-Tai; Khosla, Rajiv; Khaksar, Seyed Mohammad Sadegh; Nguyen, Khanh
Assistive technologies, such as robots, have proven to be useful in a social context and to improve the quality of life for people with dementia (PwD). This study aims to show how the engagement between two social robots and PwD in Australian residential care facilities can improve care quality. An observational method is adopted in the research methodology to discover behavioural patterns during interactions between the robots and PwD. This observational study has undertaken to explore the improvement arising from: (1) approaching social baby-face robots (AR), (2) experiencing pleasure engaging with the robots (P), (3) interacting with the robots (IR), and (4) interacting with others (IO). The findings show that social robots can improve diversion therapy service value to PwD through sensory enrichment, positive social engagement, and entertainment. More than 11,635 behavioral reactions, such as facial expressions and gestures, from 139 PwD over 5 years were coded, in order to identify the engagement effectiveness between PwD and two social robots named Sophie and Jack. The results suggest that these innovative social robots can improve the quality of care for people suffering from dementia.
Song, Mi-Kyung; Ward, Sandra E; Hepburn, Kenneth; Paul, Sudeshna; Shah, Raj C; Morhardt, Darby J
People in the early stages of Alzheimer's disease and related dementias (ADRD) are encouraged to engage in advance care planning (ACP) while they are still competent to appoint a surrogate decision maker and meaningfully participate in ACP discussions with the surrogate. In this NIH Stage I behavioral intervention development trial, we will adapt and test an efficacious ACP intervention, SPIRIT (Sharing Patient's Illness Representation to Increase Trust), with people with mild dementia and their surrogates to promote open, honest discussions while such discussions about end-of-life care are possible. We will first adapt SPIRIT (in person) to target people with mild dementia and their surrogates through a process of modification-pretesting-refinement using stakeholders (persons with mild dementia, family caregivers, and clinicians) and experts, including adapting the delivery mode to interactive web-based videoconference format (SPIRIT-remote). Then in a 3-group RCT with 120 patient-surrogate dyads, we will evaluate the feasibility and acceptability of SPIRIT in-person and SPIRIT remote, and preliminary efficacy of SPIRIT compared to usual care on preparedness outcomes for end-of-life decision making (dyad congruence on goals of care, patient decisional conflict, and surrogate decision-making confidence) shortly after the intervention. This Stage I research of SPIRIT will generate valuable insights regarding how to improve ACP for people with mild dementia who will progress to an advanced stage of the disease in the foreseeable future. ClinicalTrials.gov NCT03311711, Registered 10/12/2017. Copyright © 2018. Published by Elsevier Inc.
Robinson, Louise; Bamford, Claire; Beyer, Fiona; Clark, Alexa; Dickinson, Claire; Emmet, Charlotte; Exley, Catherine; Hughes, Julian; Robson, Lesley; Rousseau, Nikki
Abstract Background People living with a long term condition may wish to be able to plan ahead, so that if in future they cannot make decisions, their wishes about their care will be known; this process is termed Advance Care Planning (ACP). In dementia, guidance stipulates that ACP discussions should take place whilst the person still has capacity to make decisions. However there is a lack of evidence on the effectiveness of ACP in influencing patient choice and resource use. The aims of thi...
Introduction and aim Because of the expected increase of dementia patients in the next decades and the growing demand for formal care, an important question appears: how to predict and influence the caring possibilities of informal carers. We introduce the concept perseverance time, describedas
Hasselkus, Betty Risteen
Examines the ethical aspects of the experience of providing day care to dementia patients. Results, based on telephone interviews (N=40), indicate that ethical challenges arise in everyday incidents when participants, staff, or family members "cross the line" of acceptable behavior. Staff responses ranged from benign manipulation to…
Rämgård, Margareta; Carlson, Elisabeth; Mangrio, Elisabeth
As nursing homes become increasingly diverse, dementia care needs a wider range of culturally responsive strategies for individual and collective social interactions. While previous studies conclude that medical clowns have positive effects on verbal and non verbal social interactions, research is lacking from the perspective of residents' cultural background. The aim of this study was to identify interaction strategies employed by medical clowns in culturally diverse dementia care settings. An ethnographic approach was used and data were collected through observation of interactions between medical clowns and residents with dementia in two nursing homes during a ten week period. The observations showed that the medical clowns interacted with residents by being tuned in and attentive to the residents as individuals with a unique life-history, confirming each person´s sense of self. The clowns used sensory triggers, encouragement and confirmation in culturally responsive ways to bond socially with the residents in their personal spaces. The clowns involved objects in the daily environment that were meaningful for the residents, and paid attention to significant places and habits in the past. The clowns further contributed to joint interaction in the common spaces in the nursing homes, using music and drama. The strategies employed by medical clowns in activities with older people with dementia appear to support social interaction. The medical clowns used the social and material environment in culturally responsive ways to strengthen individuals' sense of self, while contributing to a sense of togetherness and interaction among residents in the common spaces. Findings suggest that both verbal and non-verbal cultural content affected social interaction. The non-demanding encouraging way the clowns tuned in to the residents as individuals could help nurses and staff members improve ways of communication in social activities inside the nursing home.
Makoni, Sinfree; Makoe, Pinky
Reports on an aspect of a larger project broadly examining the role of language in health care practices. Discusses the effects of dementia on the speech of an aging white Xhosa speaker in the context of a health care institution. Dementia has not been conclusively demonstrated in black Africans. Shows the effects of dementia on the responses…
Beishuizen, Cathrien R. L.; Coley, Nicola; Moll van Charante, Eric P.; van Gool, Willem A.; Richard, Edo; Andrieu, Sandrine
To explore and compare sociodemographic, clinical, and neuropsychiatric determinants of dropout and nonadherence in older people participating in an open-label cluster-randomized controlled trial-the Prevention of Dementia by Intensive Vascular care (preDIVA) trial-over 6 years. Secondary analysis.
Beishuizen, C.R.; Coley, N.; Charante, E.P.M. van; Gool, W.A. van; Richard, E.; Andrieu, S.
OBJECTIVES: To explore and compare sociodemographic, clinical, and neuropsychiatric determinants of dropout and nonadherence in older people participating in an open-label cluster-randomized controlled trial-the Prevention of Dementia by Intensive Vascular care (preDIVA) trial-over 6 years. DESIGN:
Objective. To design, integrate, and assess the effectiveness of a medical humanities teaching module that focuses on pharmaceutical care for dementia patients.Design. Visual and textual dementia narratives were presented using a combination of teacher and learner-centered approaches with the aim being to highlight patients' and caregivers' needs for empathy and counselling.Assessment. As gauged from pre- and post-experience questionnaires, students highly rated this approach to teaching medical humanities. In-class presentations demonstrated students' increased sensitivity to patient and caregiver needs, while objective learning outcomes demonstrated students' increased knowledge and awareness.Conclusions. Pharmacy students were open to and successfully learned from reading and discussing patient and caregiver narratives, which furthers the discussion on the value of integrating the medical humanities into the curricula of pharmacy and other health sciences.
Andrews, Sharon; McInerney, Fran; Toye, Christine; Parkinson, Camillus-Anthony; Robinson, Andrew
Current research identifies advanced dementia to be the terminal phase of this progressive and incurable condition. However, there has been relatively little investigation into how family members of people with advanced dementia understand their relative's condition. In this article, we report on semi-structured interviews with 10 family members of people with advanced dementia, in a residential aged care facility. Using a qualitative, descriptive design, we explored family members' understandings of dementia, whether they were aware that it was a terminal condition, and the ways they developed their understandings. Findings revealed that the majority of family members could not recognize the terminal nature of dementia. Relying on predominantly lay understandings, they had little access to formal information and most failed to conceptualize a connection between dementia and death. Moreover, family members engaged in limited dialogue with aged care staff about such issues, despite their relatives being in an advanced stage of the disease. Findings from our study suggest that how family members understand their relative's condition requires greater attention. The development of staff/family partnerships that promote shared communication about dementia and dying may enhance family members' understandings of the dementia trajectory and the types of decisions they may be faced with during the more advanced stages of the disease.
Alessandro Ferrari Jacinto; Ana Cristina Procópio de Oliveira Aguiar; Fabio Gazelato de Melo Franco; Miriam Ikeda Ribeiro; Vanessa de Albuquerque Citero
Objective: To evaluate the diagnostic sensitivity, specificity, andagreement of the Dementia Rating Scale with clinical diagnosis ofcognitive impairment and to compare its psychometric measureswith those from Mini Mental State Examination. Methods: Eighty-sixelders from a long-term care institution were invited to participatein a study, and fifty-eight agreed to participate. The global healthassessment protocol applied to these elders contained Mini MentalState Examination and Dementia Rating...
Full Text Available Amy Streater,1,2 Donna Maria Coleston-Shields,2 Jennifer Yates,2 Miriam Stanyon,2 Martin Orrell2 1Research and Development, North East London NHS Foundation Trust, Ilford, 2Institute of Mental Health, University of Nottingham, Nottingham, UK Background: Research on crisis teams for older adults with dementia is limited. This scoping review aimed to 1 conduct a systematic literature review reporting on the effectiveness of crisis interventions for older people with dementia and 2 conduct a scoping survey with dementia crisis teams mapping services across England to understand operational procedures and identify what is currently occurring in practice.Methods: For the systematic literature review, included studies were graded using the Critical Appraisal Skills Programme checklist. For the scoping survey, Trusts across England were contacted and relevant services were identified that work with people with dementia experiencing a mental health crisis.Results: The systematic literature review demonstrated limited evidence in support of crisis teams reducing the rate of hospital admissions, and despite the increase in number of studies, methodological limitations remain. For the scoping review, only half (51.8% of the teams had a care pathway to manage crises and the primary need for referral was behavioral or psychological factors.Conclusion: Evidence in the literature for the effectiveness of crisis teams for older adults with dementia remains limited. Being mainly cohort designs can make it difficult to evaluate the effectiveness of the intervention. In practice, it appears that the pathway for care managing crisis for people with dementia varies widely across services in England. There was a wide range of names given to the provision of teams managing crisis for people with dementia, which may reflect the differences in the setup and procedures of the service. To provide evidence on crisis intervention teams, a comprehensive protocol is required
McDermott, Orii; Orrell, Martin; Ridder, Hanne Mette Ochsner
with dementia and explore the meaning of music in their lives.Method: Separate focus groups and interviews with (1) care home residents with dementia and their families, (2) day hospital clients with dementia, (3) care home staff, and (4) music therapists, were conducted. The findings of the thematic analysis......, the importance of relationship-building through music making were particularly highlighted as valuable. The psychosocial model of music in dementia was developed. The model revealed the importance of music to support the personal psychology of people with dementia and the social psychology of the care home...
Mahieu, Lieslot; Anckaert, Luc; Gastmans, Chris
Intimacy and sexuality expressed by nursing home residents with dementia remains an ethically sensitive issue for care facilities, nursing staff and family members. Dealing with residents' sexual longings and behaviour is extremely difficult, putting a burden on the caregivers as well as on the residents themselves and their relatives. The parties in question often do not know how to react when residents express themselves sexually. The overall aim of this article is to provide a number of clinical-ethical considerations addressing the following question: 'How can expressions of intimacy and sexuality by residents with dementia be dealt with in an ethically responsible way?' The considerations formulated are based on two cornerstones: (1) the current literature on older peoples' experiences regarding intimacy and sexuality after the onset of dementia, and (2) an anthropological-ethical framework addressing four fundamental pillars of human existence namely the decentred self, human embodiment, being-in-the-world and being-with-others. The resulting considerations are oriented toward the individual sphere, the partnership sphere, and the institutional sphere. The continuous interaction between these spheres leads to orientations that both empower the residents in question and respect the complex network of relationships that surrounds them.
Kok, Jeroen S; van Heuvelen, Marieke J G; Berg, Ina J; Scherder, Erik J A
Evidence shows that living in small scale homelike Special Care Units (SCU) has positive effects on behavioural and psychological symptoms of patients with dementia. Effects on cognitive functioning in relation to care facilities, however, are scarcely investigated. The purpose of this study is to gain more insight into the effects of living in small scale homelike Special Care Units, compared to regular SCU's, on the course of cognitive functioning in dementia. A group of 67 patients with dementia who moved from a regular SCU to a small scale homelike SCU and a group of 48 patients with dementia who stayed in a regular SCU participated in the study. Cognitive and behavioural functioning was assessed by means of a neuropsychological test battery and observation scales one month before (baseline), as well as 3 (post) and 6 months (follow-up) after relocation. Comparing the post and follow-up measurement with the baseline measurement, no significant differences on separate measures of cognitive functioning between both groups were found. Additional analyses, however, on 'domain clusters' revealed that global cognitive functioning of the small scale homelike SCU group showed significantly less cognitive decline three months after the transfer (p Effect sizes (95% CI) show a tendency for better aspects of cognition in favour of the homelike small scaled SCU group, i.e., visual memory, picture recognition, cognitive decline as observed by representatives and the clustered domains episodic memory and global cognitive functioning. While there is no significant longitudinal effect on the progression of cognitive decline comparing small scaled homelike SCU's with regular SCU's for patients with dementia, analyses on the domain clusters and effect sizes cautiously suggest differences in favour of the small scaled homelike SCU for different aspects of cognition.
Thyrian, Jochen René; Eichler, Tilly; Michalowsky, Bernhard; Wucherer, Diana; Reimann, Melanie; Hertel, Johannes; Richter, Steffen; Dreier, Adina; Hoffmann, Wolfgang
Efficient help and care for people with dementia (PWD) is dependent on knowledge about PWD in primary care. This analysis comprehensively describes community-dwelling PWD in primary care with respect to various dementia care specific variables. The analyses are based on baseline data of the ongoing general practitioner-based, randomized, controlled intervention trial DelpHi-MV (Dementia: life- and person-centered help). 6,838 patients were screened for dementia in 136 GP practices; 17.1% were screened positive, 54.4% of those agreed to participate and data could be assessed in n = 516 subjects. We assessed age, sex, living situation, cognitive status, functional status, level of impairment, comorbidities, formal diagnosis of dementia, depression, neuropsychiatric symptoms, quality of life, utilization of medical support, and pharmacological therapy. Concerning clinical-, dementia-, and health-related variables, the sample under examination was on average mildly cognitively and functionally impaired (MMSE, m = 22.2; BADL, m = 3.7). A level of care was assigned in 38.0%. Depression was identified in 15.4% and other frequent comorbidities were high blood pressure (83.3%), coronary heart diseases (37.1%), cerebrovascular diseases (22.3%), among others. In 48.6%, neuropsychiatric symptoms were present in a clinically relevant severity. Pharmacological treatment with antidementia medication was received by 25.8% and antidepressant medication by 14.0%. Utilization of services was generally low. The comprehensive description of people screened positive for dementia in primary care reveals a complex and unique population of patients. They are considerably underdiagnosed and in their majority mildly to moderately affected. More in-depth analyses are needed to study relations, associations and interactions between different variables.
Kenigsberg, Paul-Ariel; Aquino, Jean-Pierre; Bérard, Alain; Gzil, Fabrice; Andrieu, Sandrine; Banerjee, Sube; Brémond, François; Buée, Luc; Cohen-Mansfield, Jiska; Mangialasche, Francesca; Platel, Hervé; Salmon, Eric; Robert, Philippe
Given that there may well be no significant advances in drug development before 2025, prevention of dementia-Alzheimer's disease through the management of vascular and lifestyle-related risk factors may be a more realistic goal than treatment. Level of education and cognitive reserve assessment in neuropsychological testing deserve attention, as well as cultural, social, and economic aspects of caregiving. Assistive technologies for dementia care remain complex. Serious games are emerging as virtual educational and pleasurable tools, designed for individual and cooperative skill building. Public policies are likely to pursue improving awareness and understanding of dementia; providing good quality early diagnosis and intervention for all; improving quality of care from diagnosis to the end of life, using clinical and economic end points; delivering dementia strategies quicker, with an impact on more people. Dementia should remain presented as a stand-alone concept, distinct from frailty or loss of autonomy. The basic science of sensory impairment and social engagement in people with dementia needs to be developed. E-learning and serious games programs may enhance public and professional education. Faced with funding shortage, new professional dynamics and economic models may emerge through coordinated, flexible research networks. Psychosocial research could be viewed as an investment in quality of care, rather than an academic achievement in a few centers of excellence. This would help provide a competitive advantage to the best operators. Stemming from care needs, a logical, systems approach to dementia care environment through organizational, architectural, and psychosocial interventions may be developed, to help reduce symptoms in people with dementia and enhance quality of life. Dementia-friendly environments, culture, and domesticity are key factors for such interventions. © The Author(s) 2015.
Kok, Jeroen S.; van Heuvelen, Marieke J. G.; Berg, Ina J.; Scherder, Erik J. A.
Background: Evidence shows that living in small scale homelike Special Care Units (SCU) has positive effects on behavioural and psychological symptoms of patients with dementia. Effects on cognitive functioning in relation to care facilities, however, are scarcely investigated. The purpose of this
Bass, David M; Judge, Katherine S; Snow, A Lynn; Wilson, Nancy L; Morgan, Robert O; Maslow, Katie; Randazzo, Ronda; Moye, Jennifer A; Odenheimer, Germaine L; Archambault, Elizabeth; Elbein, Richard; Pirraglia, Paul; Teasdale, Thomas A; McCarthy, Catherine A; Looman, Wendy J; Kunik, Mark E
"Partners in Dementia Care" (PDC) tested the effectiveness of a care-coordination program integrating healthcare and community services and supporting veterans with dementia and their caregivers. Delivered via partnerships between Veterans Affairs medical centers and Alzheimer's Association chapters, PDC targeted both patients and caregivers, distinguishing it from many non-pharmacological interventions. Hypotheses posited PDC would improve five veteran self-reported outcomes: 1) unmet need, 2) embarrassment about memory problems, 3) isolation, 4) relationship strain and 5) depression. Greater impact was expected for more impaired veterans. A unique feature was self-reported research data collected from veterans with dementia. Five matched communities were study sites. Two randomly selected sites received PDC for 12 months; comparison sites received usual care. Three structured telephone interviews were completed every 6 months with veterans who could participate. Of 508 consenting veterans, 333 (65.6%) completed baseline interviews. Among those who completed baseline interviews, 263 (79.0%) completed 6-month follow-ups and 194 (58.3%) completed 12-month follow-ups. Regression analyses showed PDC veterans had significantly less adverse outcomes than those receiving usual care, particularly for more impaired veterans after 6 months, including reduced relationship strain (B = -0.09; p = 0.05), depression (B = -0.10; p = 0.03), and unmet need (B = -0.28; p = 0.02; and B = -0.52; p = 0.08). PDC veterans also had less embarrassment about memory problems (B = -0.24; p = 0.08). At 12 months, more impaired veterans had further reductions in unmet need (B = -0.96; p needs and improve the psychosocial functioning of persons with dementia. NCT00291161.
Decedent older adults with dementia are increasingly less likely to die in a hospital, though escalation of care to a hospital setting, often including critical care, remains common. Although hospice is increasingly reported as the site of death in these patients, the factors associated with transition to hospice care during end-of-life (EOL) hospitalizations of older adults with dementia and the extent of preceding escalation of care to an intensive care unit (ICU) setting among those discharged to hospice have not been examined. We identified hospitalizations aged ≥ 65 years with a diagnosis of dementia in Texas between 2001 and 2010. Potential factors associated with discharge to hospice were evaluated using multivariate logistic regression modeling, and occurrence of hospice discharge preceded by ICU admission was examined. There were 889,008 elderly hospitalizations with a diagnosis of dementia during study period, with 40,669 (4.6%) discharged to hospice. Discharges to hospice increased from 908 (1.5%) to 7,398 (6.3%) between 2001 and 2010 and involved prior admission to ICU in 45.2% by 2010. Non-dementia comorbidities were generally associated with increased odds of hospice discharge, as were development of organ failure, the number of failing organs, or use of mechanical ventilation. However, discharge to hospice was less likely among non-white minorities (lowest among blacks: adjusted odds ratio (aOR): 0.67; 95% confidence interval (CI): 0.65 - 0.70) and those with non-commercial primary insurance or the uninsured (lowest among those with Medicaid: aOR (95% CI): 0.41 (0.37 - 0.46)). This study identified potentially modifiable factors associated with disparities in transition to hospice care during EOL hospitalizations of older adults with dementia, which persisted across comorbidity and severity of illness measures. The prevalent discharge to hospice involving prior critical care suggests that key discussions about goals-of-care likely took place
Hanssen, Ingrid; Kuven, Britt Moene
To learn about the meaning of traditional food to institutionalised patients with dementia. Traditional food strengthens the feelings of belonging, identity and heritage, which help persons with dementia to hold on to and reinforce their cultural identity and quality of life. Taste is more cultural than physiological. Dietary habits are established early in life and may be difficult to change. Being served unfamiliar dishes may lead to disappointment and a feeling of being betrayed and unloved. The three studies presented have a qualitative design. In-depth interviews of family members and nurses experienced in dementia care were conducted in South Africa and among ethnic Norwegians and the Sami in Norway. Content-focused analysis, hermeneutic in character, was used to enable the exploration of the thoughts, feelings and cultural meaning described. Traditional foods created a feeling of belonging and joy. Familiar tastes and smells awoke pleasant memories in patients and boosted their sense of well-being, identity and belonging, even producing words in those who usually did not speak. In persons with dementia, dishes remembered from their childhood may help maintain and strengthen cultural identity, create joy and increase patients' feeling of belonging, being respected and cared for. Traditional food furthermore improves patients' appetite, nutritional intake and quality of life. To serve traditional meals in nursing homes demands extra planning and resources, traditional knowledge, creativity and knowledge of patients' personal tastes. This study provides insight into culture-sensitive dietary needs of institutionalised patients with dementia. The cultural significance of food for feeling contentment and social and physical well-being is discussed. Besides helping to avoid undernutrition, being served traditional dishes may be very important to reminiscence, joy, thriving and quality of life. © 2016 John Wiley & Sons Ltd.
Karantzas, Gery C; McCabe, Marita P; Mellor, David; Von Treuer, Kathryn; Davison, Tanya E; O'Connor, Daniel; Haselden, Rachel; Konis, Anastasia
To date, no research has investigated how the organizational climate of aged care influences the self-efficacy of staff in caring for residents with dementia, or, how self-efficacy is associated with the strain experienced by staff. This study sought to investigate the extent to which the self-efficacy of aged care staff mediates the association between organizational climate variables (such as autonomy, trusting and supportive workplace relations, and the recognition of competence and ability, and perceptions of workplace pressure) and staff strain. A cross-sectional survey design was implemented in which 255 residential aged care staff recruited across aged care facilities in Melbourne, Australia. Staff completed self-report measures of organizational climate, self-efficacy, and strains in caring for residents with dementia. Indirect effects analyses using bootstrapping indicated that self-efficacy of staff mediated the association between the organizational climate variables of autonomy, trust, support, pressure, and staff strain. The findings of this study emphasize that the aged care sector needs to target organizational climate variables that enhance the self-efficacy of staff, and that this in turn, can help ameliorate the strain experienced by staff caring for residents experiencing dementia. Copyright © 2016. Published by Elsevier Ireland Ltd.
Strandroos, Lisa; Antelius, Eleonor
Previous research concerning bilingual people with a dementia disease has mainly focused on the importance of sharing a spoken language with caregivers. While acknowledging this, this article addresses the multidimensional character of communication and interaction. As using spoken language is made difficult as a consequence of the dementia disease, this multidimensionality becomes particularly important. The article is based on a qualitative analysis of ethnographic fieldwork at a dementia care facility. It presents ethnographic examples of different communicative forms, with particular focus on bilingual interactions. Interaction is understood as a collective and collaborative activity. The text finds that a shared spoken language is advantageous, but is not the only source of, nor a guarantee for, creating common ground and understanding. Communicative resources other than spoken language are for example body language, embodiment, artefacts and time. Furthermore, forms of communication are not static but develop, change and are created over time. Ability to communicate is thus not something that one has or has not, but is situationally and collaboratively created. To facilitate this, time and familiarity are central resources, and the results indicate the importance of continuity in interpersonal relations.
Göhner, Anne; Hüll, Michael; Voigt-Radloff, Sebastian
The number of persons suffering from dementia will continuously increase in the coming years; therefore, evidence-based interventions are needed in geriatric psychiatric care. When evidence is poor scoping reviews may help to identify knowledge gaps and needs for research. To present an overview of clinical trials on non-pharmacological treatment for elderly with dementia in hospitals, wards and nursing homes, specializing in gerontopsychiatric care. A systematic search was carried out by one of the authors for clinical trials (randomized controlled, controlled and single group pre-post design, English and German, 1998-2014) in PsycINFO, PubMED, PSYNDEX and the Cochrane Library as well as a manual search in two relevant German peer-reviewed journals. Two authors included studies according to a priori defined inclusion criteria. One author extracted data after consulting the second author in cases of ambiguity. The risk of bias of the studies was not assessed. A total of 77 studies were identified, 29 studies on restructured treatment pathways or settings, 14 trials on environmental changes and 34 studies on therapeutic single or group interventions. Both the methodological quality of the studies and the evidence for the efficacy of non-pharmacological treatment were limited. There are clear indications for an advantage of specialized environments and treatment settings for the elderly with dementia in hospitals, wards and nursing homes. There are consistent indications for positive effects of psychosocial activation alone or in combination with cognitive or physical activation, partly with high-quality study designs. This is consistent with the German S3 guidelines for dementia. For single interventions, such as electroconvulsive therapy or horticultural activities, the level of evidence remains limited.
McDermott, Orii; Orrell, Martin; Ridder, Hanne Mette
Despite the popularity of music-based interventions in dementia care, there is a limited knowledge of how and why people with dementia find music beneficial for their well-being. A qualitative study was conducted to develop further insights into the musical experiences of people with dementia and explore the meaning of music in their lives. Separate focus groups and interviews with (1) care home residents with dementia and their families, (2) day hospital clients with dementia, (3) care home staff, and (4) music therapists, were conducted. The findings of the thematic analysis were investigated further in the light of psychosocial factors with the aim of developing a theoretical model on music in dementia. Six key themes were identified. The accessibility of music for people at all stages of dementia, close links between music, personal identity and life events, the importance of relationship-building through music making were particularly highlighted as valuable. The psychosocial model of music in dementia was developed. The model revealed the importance of music to support the personal psychology of people with dementia and the social psychology of the care home environment. The effects of music go beyond the reduction of behavioural and psychological symptoms. Individual preference of music is preserved throughout the process of dementia. Sustaining musical and interpersonal connectedness would help value who the person is and maintain the quality of their life.
Faellmar, David; Larsson, Elna-Marie [Uppsala University, Department of Surgical Sciences, Radiology, Uppsala (Sweden); Haller, Sven [Uppsala University, Department of Surgical Sciences, Radiology, Uppsala (Sweden); University Medical Center Freiburg, Department of Neuroradiology, Freiburg (Germany); University of Geneva, Faculty of Medicine, Geneva (Switzerland); Affidea CDRC - Centre Diagnostique Radiologique de Carouge, Carouge (Switzerland); Lilja, Johan [Uppsala University, Department of Surgical Sciences, Nuclear Medicine and PET, Uppsala (Sweden); Hermes Medical Solutions, Stockholm (Sweden); Danfors, Torsten [Uppsala University, Department of Surgical Sciences, Nuclear Medicine and PET, Uppsala (Sweden); Kilander, Lena [Uppsala University, Department of Public Health and Caring Sciences, Geriatrics, Uppsala (Sweden); Tolboom, Nelleke; Croon, Philip M.; Berckel, Bart N.M. van [VU University Medical Center, Department of Radiology and Nuclear Medicine, Amsterdam (Netherlands); Egger, Karl [University Medical Center Freiburg, Department of Neuroradiology, Freiburg (Germany); Kellner, Elias [Medical Center University of Freiburg, Department of Radiology, Medical Physics, Faculty of Medicine, Freiburg (Germany); Verfaillie, Sander C.J.; Ossenkoppele, Rik [VU University Medical Center, Department of Neurology, Alzheimer Center Amsterdam, Amsterdam (Netherlands); Barkhof, Frederik [VU University Medical Center, Department of Radiology and Nuclear Medicine, Amsterdam (Netherlands); UCL, Institutes of Neurology and Healthcare Engineering, London (United Kingdom)
Cerebral perfusion analysis based on arterial spin labeling (ASL) MRI has been proposed as an alternative to FDG-PET in patients with neurodegenerative disease. Z-maps show normal distribution values relating an image to a database of controls. They are routinely used for FDG-PET to demonstrate disease-specific patterns of hypometabolism at the individual level. This study aimed to compare the performance of Z-maps based on ASL to FDG-PET. Data were combined from two separate sites, each cohort consisting of patients with Alzheimer's disease (n = 18 + 7), frontotemporal dementia (n = 12 + 8) and controls (n = 9 + 29). Subjects underwent pseudocontinuous ASL and FDG-PET. Z-maps were created for each subject and modality. Four experienced physicians visually assessed the 166 Z-maps in random order, blinded to modality and diagnosis. Discrimination of patients versus controls using ASL-based Z-maps yielded high specificity (84%) and positive predictive value (80%), but significantly lower sensitivity compared to FDG-PET-based Z-maps (53% vs. 96%, p < 0.001). Among true-positive cases, correct diagnoses were made in 76% (ASL) and 84% (FDG-PET) (p = 0.168). ASL-based Z-maps can be used for visual assessment of neurodegenerative dementia with high specificity and positive predictive value, but with inferior sensitivity compared to FDG-PET. (orig.)
Sagbakken, Mette; Spilker, Ragnhild Storstein; Ingebretsen, Reidun
This article focuses on cognitive impairment and dementia in the context of transnational migration. Based on data from focus group discussions and interviews, we conclude that to adjust to the needs of care within ethnic-minority communities, it is important to consider not only the availability of household and kin members but also the present understanding of obligation and reciprocity underlying the perception of care. Another important issue to realize is that caregivers, women in particular, might feel obliged to conform to a traditional caregiver role, but without the support from a wider extended family, and in the context of other pressing roles and duties. Consequently, health personnel should be wary of stereotyping and generalizing groups through "othering" ideologies and rather try to explore, understand, and adjust to the present and often fluctuating set of needs, as well as be aware of how and by whom these needs are articulated.
Coming to grips with challenging behaviour: a cluster randomised controlled trial on the effects of a new care programme for challenging behaviour on burnout, job satisfaction and job demands of care staff on dementia special care units.
Zwijsen, S A; Gerritsen, D L; Eefsting, J A; Smalbrugge, M; Hertogh, C M P M; Pot, A M
Caring for people with dementia in dementia special care units is a demanding job. Challenging behaviour is one of the factors influencing the job satisfaction and burnout of care staff. A care programme for the challenging behaviour of nursing home residents with dementia might, next to diminishing the challenging behaviour of residents, improve job satisfaction and reduce the care staff's feelings of burnout. To determine the effects of a care programme for the challenging behaviour of nursing home residents with dementia on the burnout, job satisfaction and job demands of care staff. The care programme was implemented according to a stepped wedge design in which care units were randomly divided over five groups with different time points of starting with implementation. 17 Dutch dementia special care units. Care staff members of the 17 units. The care programme consists of an education package and of various structured assessment tools that guide professionals through the multidisciplinary detection, analysis, treatment and evaluation of treatment of challenging behaviour. Burnout, job satisfaction and job demands were measured before implementation, halfway through the implementation process and after all the care units had implemented the care programme. Burnout was measured with the Dutch version of the Maslach burnout inventory (UBOS-C, three subscales); job satisfaction and job demands were measured with subscales of the Leiden Quality of Work Questionnaire. Mixed model analyses were used to determine effects. Care staff could not be blinded for the intervention. Of the 1441 questionnaires, 645 were returned (response 45%, 318 control measurements, 327 intervention measurements) by 380 unique care staff members. Significant effects were found on job satisfaction (0.93, 95% CI 0.48-1.38). On the other outcomes, no significant changes in the scores were found. Positive effects of using the Grip on Challenging behaviour care programme were found on job
Palo-Bengtsson, L; Ekman, S L
The purpose of this study was to describe the phenomenon of social dancing in the care of persons with dementia in a nursing home setting. Social dancing is an activity that has taken place once a month regularly during the last 10 years at a nursing home in Stockholm. The period of data collection for this study was the year 1995. At the time of the investigation, the subjects were in special units for persons with dementia. The analysis is based on the data contained in five 45-minute video tapes. All videotapes were analysed based on Husserl's philosophy and Giorgi's method of phenomenological analysis. The results suggested that dance music was a good stimulus for making social contacts. The earlier-trained social patterns, old social habits, and general rules seemed to awaken to life in the persons with dementia. It was important that the caregivers showed individual creativity, spontaneity, and supportive nursing care. Social dancing at the nursing home was found in this study to be very positive and successful for patients with dementia.
Leigh, Andrew James; O'Hanlon, Katie; Sheldrick, Russell; Surr, Claire; Hare, Dougal Julian
Person-centred care can improve the well-being of patients and is therefore a key driver in healthcare developments in the UK. The current study aims to investigate the complex relationship between cognitive impairment, dependency and well-being in people with a wide range of acquired brain and spinal injuries. Sixty-five participants, with varied acquired brain and spinal injuries, were selected by convenience sampling from six inpatient clinical neuroscience settings. Participants were observed using Dementia Care Mapping - Neurorehabilitation (DCM-NR) and categorised based on severity of cognitive impairment. A significant difference in the behaviours participants engaged in, their well-being and dependency was found between the severe cognitive impairment group and the mild, moderate or no cognitive impairment groups. Dependency and cognitive impairment accounted for 23.9% of the variance in well-ill-being scores and 17.2% of the variance in potential for positive engagement. The current study highlights the impact of severe cognitive impairment and dependency on the behaviours patients engaged in and their well-being. It also affirms the utility of DCM-NR in providing insights into patient experience. Consideration is given to developing DCM-NR as a process that may improve person-centred care in neuroscience settings.
Nishio, Midori; Ono, Mitsu
The number of male caregivers has increased, but male caregivers face several problems that reduce their quality of life and psychological condition. This study focused on the coping problems of men who care for people with dementia at home. It aimed to develop a coping scale for male caregivers so that they can continue caring for people with dementia at home and improve their own quality of life. The study also aimed to verify the reliability and validity of the scale. The subjects were 759 men who care for people with dementia at home. The Care Problems Coping Scale consists of 21 questions based on elements of questions extracted from a pilot study. Additionally, subjects completed three self-administered questionnaires: the Japanese version of the Zarit Caregiver Burden Scale, the Depressive Symptoms and the Self-esteem Emotional Scale, and Rosenberg Self-Esteem Scale. There were 274 valid responses (36.1% response rate). Regarding the answer distribution, each average value of the 21 items ranged from 1.56 to 2.68. The median answer distribution of the 21 items was 39 (SD = 6.6). Five items had a ceiling effect, and two items had a floor effect. The scale stability was about 50%, and Cronbach's α was 0.49. There were significant correlations between the Care Problems Coping Scale and total scores of the Japanese version of the Zarit Caregiver Burden Scale, the Depressive Symptoms and Self-esteem Emotional Scale, and the Rosenberg Self-Esteem Scale. The answers provided on the Care Problems Coping Scale questionnaire indicated that male caregivers experience care problems. In terms of validity, there were significant correlations between the external questionnaires and 19 of the 21 items in this scale. This scale can therefore be used to measure problems with coping for male caregivers who care for people with dementia at home.
Sun, Fei; Durkin, Daniel W.; Hilgeman, Michelle M.; Harris, Grant; Gaugler, Joseph E.; Wardian, Jana; Allen, Rebecca S.; Burgio, Louis D.
Purpose: Literature on institutionalization of patients with dementia has not considered the role of caregivers' quality of care, which encompasses caregivers' exemplary care (EC) behaviors and caregivers' potentially harmful behaviors (PHBs) toward care recipients. This study sought to understand the role of quality of care in mediating between…
... our e-newsletter! Aging & Health A to Z Dementia Diagnosis & Tests If you or someone you care ... To determine whether an older adult might have dementia, a healthcare professional will: Ask about the person’s ...
Maslow, Katie; Fortinsky, Richard H
In the United States, at least half of older adults living with dementia do not have a diagnosis. Their cognitive impairment may not have been detected, and some older adults whose physician recommends that they obtain a diagnostic evaluation do not follow through on the recommendation. Initiatives to increase detection of cognitive impairment and diagnosis of dementia have focused primarily on physician practices and public information programs to raise awareness about the importance of detection and diagnosis. Nonphysician care providers who work with older adults in community and residential care settings, such as aging network agencies, public health agencies, senior housing, assisted living, and nursing homes, interact frequently with older adults who have cognitive impairment but have not had a diagnostic evaluation. These care providers may be aware of signs of cognitive impairment and older adults' concerns about their cognition that have not been expressed to their physician. Within their scope of practice and training, nonphysician care providers can help to increase detection of cognitive impairment and encourage older adults with cognitive impairment to obtain a diagnostic evaluation to determine the cause of the condition. This article provides seven practice recommendations intended to increase involvement of nonphysician care providers in detecting cognitive impairment and encouraging older adults to obtain a diagnostic evaluation. The Kickstart-Assess-Evaluate-Refer (KAER) framework for physician practice in detection and diagnosis of dementia is used to identify ways to coordinate physician and nonphysician efforts and thereby increase the proportion of older adults living with dementia who have a diagnosis. © The Author(s) 2018. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: email@example.com.
Smebye, Kari Lislerud; Kirkevold, Marit; Engedal, Knut
Many countries have passed laws giving patients the right to participate in decisions about health care. People with dementia cannot be assumed to be incapable of making decisions on their diagnosis alone as they may have retained cognitive abilities.The purpose of this study was to gain a better understanding of how persons with dementia participated in making decisions about health care and how their family carers and professional caregivers influenced decision making. This Norwegian study had a qualitative multi-case design. The triad in each of the ten cases consisted of the person with dementia, the family carer and the professional caregiver, in all 30 participants. Inclusion criteria for the persons with dementia were: (1) 67 years or older (2) diagnosed with dementia (3) Clinical Dementia Rating score 2, moderate dementia; (3) able to communicate verbally. The family carers and professional caregivers were then asked to participate.A semi-structured interview guide was used in interviews with family carers and professional caregivers. Field notes were written after participant observation of interactions between persons with dementia and professional caregivers during morning care or activities at a day centre. How the professional caregivers facilitated decision making was the focus of the observations that varied in length from 30 to 90 minutes. The data were analyzed using framework analysis combined with a hermeneutical interpretive approach. Professional caregivers based their assessment of mental competence on experience and not on standardized tests. Persons with dementia demonstrated variability in how they participated in decision making. Pseudo-autonomous decision making and delegating decision making were new categories that emerged. Autonomous decision making did occur but shared decision making was the most typical pattern. Reduced mental capacity, lack of available choices or not being given the opportunity to participate led to non
Villar, Feliciano; Celdrán, Montserrat; Serrat, Rodrigo; Fabà, Josep; Martínez, Teresa
To explore staff responses, in terms of common practices, towards partnered sexual relationships in long-term care facilities where one or both people involved have dementia. It also tries to determine personal and institutional factors influencing these responses. Although some studies, mostly qualitative, have focused on reactions to residents' sexual expressions so far the issue has not been assessed in a study using large and diverse samples. Cross-sectional quantitative study using vignette technique. Participants were 2,295 staff members at 152 Spanish long-term care facilities. Data were collected during 2016. A vignette describing sexual situations involving people with dementia was presented to participants. After the vignette, participants had to answer the question: "What do you think most of your colleagues would do in this situation?" with nine possible responses. Results showed that relationships involving persons with dementia were perceived as potentially problematic by staff. In both conditions, discussing the case with a colleague or supervisor was the most frequently chosen reaction. More restrictive reactions were mentioned when only one person with dementia was involved in the relationship. Factors such as participants" age and years of experience, professional post and commitment to person-centred care practices were related with the frequency of common restriction practices. Results highlight the importance of providing staff with clear guidelines regarding the management of specific sexual situations to avoid stereotyped restrictive reactions. © 2017 John Wiley & Sons Ltd.
Vögeli, Samuel; Frei, Irena Anna; Spichiger, Elisabeth
Almost two-thirds of the 110,000 people living with dementia in Switzerland receive home care from family members. Outreach counselling can reduce the burden for family caregivers and delay nursing home placement. However, little is known of how this works and how caregivers experience the counselling. The Canton of Aargau Alzheimer's Association has been conducting a pilot project to demonstrate the necessity, effectiveness and practicability of outreach counselling in (their canton). As a part of the evaluation of the project this study explored how family members experience the process of caring for a relative with dementia and outreach counselling. Interpretive phenomenology–a qualitative approach–was used to analyse data from interviews with twelve family caregivers. Most family members felt supported in caregiving by outreach counselling. Three aspects of the counselling were especially important to the participants: being understood and taken seriously by the counsellor; receiving answers to their most pressing questions concerning the illness and being supported when difficult decision had to be taken; regaining personal time and learning how to better interact with the person with dementia. Two participants would have wished for more help by the counsellor. To meet the needs of the family members, consultants should have sufficient experience in dementia patient care and should be strongly networked across the local health and welfare system. This study shows that family members can experience outreach counselling as a great support in their caregiving roles.
Ridder, Hanne Mette Ochsner
medication. Music therapists,who play a role in staff training and supervision, and not only in direct music therapy practice, bring new important dimensions to how music therapy discipline is understood and how it is integrated in interdisciplinary work........ Then she turns her head away and wipes away a tear, clearly moved by his singing. In line with the increasing interest in applying music in medical care, the healing power of music has been recently highlighted in journals such as the Scientific American (Thompson & Schlaug 2015) and Musicae Scientiae...... (Croom 2015). In an article published in the journal Nature, the “surprising preservation of musical memory” in persons with Alzheimer’s Disease is explained (Jacobsen et al. 2015: 2439). The common goal for the dementia field is to advance and develop the culture of care. The music therapist may engage...
McDermot, Orii; Orrell, Martin; Ridder, Hanne Mette
Objectives Despite the popularity of music-based interventions in dementia care, there is a limited knowledge of how and why people with dementia find music beneficial for their well-being. A qualitative study was conducted to develop further insights into the musical experiences of people with dementia and explore the meaning of music in their lives. Method Separate focus groups and interviews with (1) care home residents with dementia and their families, (2) day hospital clients with dementia, (3) care home staff, and (4) music therapists, were conducted. The findings of the thematic analysis were investigated further in the light of psychosocial factors with the aim of developing a theoretical model on music in dementia. Results Six key themes were identified. The accessibility of music for people at all stages of dementia, close links between music, personal identity and life events, the importance of relationship-building through music making were particularly highlighted as valuable. The psychosocial model of music in dementia was developed. The model revealed the importance of music to support the personal psychology of people with dementia and the social psychology of the care home environment. Conclusion The effects of music go beyond the reduction of behavioural and psychological symptoms. Individual preference of music is preserved throughout the process of dementia. Sustaining musical and interpersonal connectedness would help value who the person is and maintain the quality of their life. PMID:24410398
Bruin, de S.R.; Stoop, A.; Molema, C.C.M.; Vaandrager, L.; Hop, P.J.W.M.; Baan, C.A.
Objective: To explore the value of day services at green care farms (GCFs) in terms of social participation for people with dementia. Method: Semi-structured interviews were conducted with people with dementia who attended day services at a GCF (GCF group, n = 21), were on a waiting list (WL) for
van de Vorst, IE
Background: In this thesis, we focused on the prognosis of patients with dementia who visited a hospital (inpatient or day clinic care) in the Netherlands. So far, absolute mortality risks for dementia were lacking in the Netherlands, whereas these risks have been available for years for cancer or
Hirano, Akemi; Umegaki, Hiroyuki; Suzuki, Yusuke; Hayashi, Toshio; Kuzuya, Masafumi
Psychological stress associated with caregiving is thought to underlie the high incidence of hypertension, ischemic heart disease, and mortality, as well as reduced immune function, among caregivers of dementia patients. Here, we examined the effects of periodic leisure activities performed by caregivers of dementia patients with care recipients at home on perceived care burden and levels of stress hormones. Participants were 42 caregivers aged ≥ 65 years of patients diagnosed with Alzheimer's dementia. They were randomly assigned to intervention and non-intervention groups. The intervention group underwent a leisure activity program (30 min/3 times/week for 24 weeks) with the care recipient, and the control group underwent normal care activities. The Zarit Burden Interview (ZBI) score, a subjective indicator of care burden, significantly decreased after intervention in the intervention group (p leisure activity on the neuroendocrine system. Our findings suggest that periodic leisure activities can reduce perceived care burden among caregivers of dementia patients. However, in order to evaluate accurately the effects of leisure activities of the present study, long-term follow-up of both caregivers and care recipients is necessary. The Nagoya University Department of Medicine Ethics Committee Clinical Trials Registry Number is 1290.
Smit, Dieneke; de Lange, Jacomine; Willemse, Bernadette; Twisk, Jos; Pot, Anne Margriet
Involvement in activities is assumed to positively influence the quality of life of people with dementia, yet activity provision in long-term care remains limited. This study aims to provide more insight into the value of activity involvement for domains of the quality of life of long-term dementia care residents, taking resident characteristics and cognitive status into account. Data were derived from 144 long-term care facilities participating in the second measurement (2010/2011) of the living arrangements for dementia study. Amongst 1144 residents, the relationship between time involved in activities (activity pursuit patterns; RAI-MDS) and quality of life (Qualidem) was studied using multilevel linear regression analyses. Analyses were adjusted for residents' age, gender, neuropsychiatric symptoms, ADL dependency and cognition. To check for effect modification of cognition, interactions terms of the variables activity involvement and cognitive status were added to the analyses. Despite resident's cognitive status, their activity involvement was significantly related to better scores on care relationship, positive affect, restless tense behaviour, social relations, and having something to do. A negative relationship existed between the activity involvement and positive self-image. The explained variance in the quality of life between residents caused by the activity involvement was small. Activity involvement seems to be a small yet important contributor to higher well-being in long-term care resident at all stages of dementia. Adjusting activities to individual preferences and capabilities might enlarge this relationship. Further research is needed to confirm this hypothesis, using measurement instruments less sensitive to recall bias and differentiating between the active and passive activity involvement.
van der Putten, M. J. G.; Wetzels, R. B.; Bor, H.; Zuidema, S. U.; Koopmans, R. T. C. M.
Objectives: To assess the differences in antipsychotic drug prescription rates in residents with dementia in dementia special care units (SCUs) of Dutch nursing homes, considering the differences in patient characteristics. Method: As part of the Waalbed-II study, the data on antipsychotic drug use
Kronborg Andersen, C; Søgaard, J; Hansen, E; Kragh-Sørensen, A; Hastrup, L; Andersen, J; Andersen, K; Lolk, A; Nielsen, H; Kragh-Sørensen, P
In a population-based study of dementia, the cost of care for 245 demented elderly and 490 controls matched by age and gender was estimated. Dementia of Alzheimer's type was diagnosed according to the NINCDS-ADRDA criteria, and vascular dementia and other types of dementia were diagnosed according to the DSM-IIIR criteria. Severity of dementia was determined by the Clinical Dementia Rating scale. The annual cost of medical care, domestic care, home help, nursing home and special equipment for nondemented patients was DKK 22,000 per person while the cost for very mildly, mildly, moderately and severely demented patients was DKK 49,000, DKK 93,000, DKK 138,000 and DKK 206,000, respectively. Except for very mild dementia the cost did not differ between elderly who suffer from Alzheimer's disease and those with other types of dementia. The net cost of dementia is the difference in cost between those with dementia and the matched controls and amounts on average to DKK 77,000 per person per year. However, priority setting cannot be based on the cost of dementia per se, but only on the cost of a specific dementia intervention compared to its health benefit.
Benbow, Susan Mary; Beeston, Derek
Sexuality in later life and its relationship to dementia is a neglected topic: greater understanding of the area has the potential to contribute to the quality of life of people with dementia, their family members, and formal carers. We review current knowledge about sexuality, aging, and dementia. We undertook a review of the recent literature to examine of the following areas: what is known about sexuality and aging, and about attitudes to sexuality and aging; what is known about the relevance of sexuality and aging to people living with dementia and their care; and the management of sexual behaviors causing concern to others. Sexual activity decreases in frequency with increasing age but many older people remain sexually active; there is no age limit to sexual responsiveness; and sexuality is becoming more important to successive cohorts of older people, including people living with dementia and gay, lesbian, bisexual, and transgendered elderly people. Attitudes and beliefs toward sexuality and aging are strongly influenced by stereotypes and myths, not only among the general public but also among those working in health and social care. Professional bodies should include sexuality, aging, and dementia in their training curricula. More work is needed on the impact of environmental issues, particularly in group living situations, on older adults' sexuality, and on consent issues. Ethical decision-making frameworks can be useful in practice. Organizations should investigate how to support staff in avoiding a problem-orientated approach and focus on providing holistic person-centered care.
Chapman, Dennis G.; Toseland, Ronald W.
This study evaluated the effectiveness of advanced illness care teams (AICTs) for nursing home residents with advanced dementia. The AICTs used a holistic approach that focused on four domains: (1) medical, (2) meaningful activities, (3) psychological, and (4) behavioral. The authors recruited 118 residents in two nursing homes for this study and…
Götell, Eva; Brown, Steven; Ekman, Sirkka-Liisa
Music and singing are considered to have a strong impact on human emotions. Such an effect has been demonstrated in caregiving contexts with dementia patients. The aim of the study was to illuminate vocally expressed emotions and moods in the communication between caregivers and persons with severe dementia during morning care sessions. Three types of caring sessions were compared: the "usual" way, with no music; with background music playing; and with the caregiver singing to and/or with the patient. Nine persons with severe dementia living in a nursing home in Sweden and five professional caregivers participated in this study. Qualitative content analysis was used to examine videotaped recordings of morning care sessions, with a focus on vocally expressed emotions and moods during verbal communication. Compared to no music, the presence of background music and caregiver singing improved the mutuality of the communication between caregiver and patient, creating a joint sense of vitality. Positive emotions were enhanced, and aggressiveness was diminished. Whereas background music increased the sense of playfulness, caregiver singing enhanced the sense of sincerity and intimacy in the interaction. Caregiver singing and background music can help the caregiver improve the patient's ability to express positive emotions and moods, and to elicit a sense of vitality on the part of the person with severe dementia. The results further support the value of caregiver singing as a method to improve the quality of dementia care.
Vandepitte, Sophie; Van Den Noortgate, Nele; Putman, Koen; Verhaeghe, Sofie; Annemans, Lieven
Frequent hospitalization and permanent nursing home placement not only affect the well-being of persons with dementia, but also place great financial strain on society. Therefore, it is important to create effective strategies to support informal caregivers so that they can continue to perform their demanding role. Preliminary qualitative evidence suggests that community-based respite services can actually be important for caregivers, and that the level of evidence should be further established in terms of effectiveness. Therefore, a comparative study to assess the effectiveness and cost-effectiveness of an in-home respite care program will be initiated. This manuscript described a quasi-experimental study to assess (cost)-effectiveness of an in-home respite care program to support informal caregivers of persons with dementia. 124 informal caregivers and persons with dementia will be included in the intervention group and will receive an in-home respite care program by an organization called Baluchon Alzheimer. 248 dyads will be included in the control group and will receive standard dementia care. The primary outcome is caregiver burden. Secondary outcomes are: quality of life of caregivers, frequency of behavioral problems of persons with dementia and the reactions of caregivers to those problems, intention to institutionalize the care-recipient, time to nursing home placement, resource use of the care-recipient, and willingness to pay for in-home respite care. When the trial demonstrates a difference in outcomes between both groups, within-trial and modeled cost-effectiveness analyses will be conducted in a separate economic evaluation plan to evaluate possible cost-effectiveness of the in-home respite care program compared to the control group receiving standard dementia care. Finally, the model based cost-effectiveness analyses will allow to extrapolate effects over a longer time horizon than the duration of the trial. This study will have great added value
Elliott, Kate-Ellen J; Stirling, Christine M; Martin, Angela J; Robinson, Andrew L; Scott, Jennifer L
Research on workforce development for high-quality dementia care more often focuses on enhancing employee knowledge and skill and less on managing employee stress and coping at work. To review employee stress and coping in response to high job demands in community-based dementia care organizations in Tasmania, Australia. Stress and coping in response to job roles of 25 community-based dementia care workers were reviewed using self-report questionnaire data. Data were analysed for descriptive results and at an individual case level. Individual participant scores were reviewed for clinically significant stress and coping factors to create worker profiles of adjustment. Two adjustment profiles were found. The 'global resilience' profile, where workers showed positive adjustment and resilience indicating they found their jobs highly rewarding, were very confident in their abilities at work and had a strong match between their personal and organizational values. The second 'isolated distress' profile was only found in a minority and included poor opportunities for job advancement, a missmatch in personal and work values or clinically high levels of psychological distress. Aged care workplaces that advocate employee well-being and support employees to cope with their work roles may be more likely to retain motivated and committed staff. Future research should consider employee stress and coping at the workforce level, and how this can influence high-quality care delivery by applying the measures identified for this study. Comparative research across different care settings using meta-analytic studies may then be possible. © 2015 The Authors. Health Expectations. Published by John Wiley & Sons Ltd.
Penders, Y.W.H.; Albers, G.; Deliens, L.; van der Stichele, R.; Block, L.
Background: High-quality palliative care for people with dementia should be patient-centered, family-focused, and include well-informed and shared decision-making, as affirmed in a recent white paper on dementia from the European Association for Palliative Care. Aim: To describe how often family
The percentage of individuals with dementia worldwide is increasing with the continued trend toward global trend overall. As options for the medical treatment of dementia remain limited, combined, non-pharmacological interventions are necessary to maintain and slow the degeneration of functional capabilities. Additionally, there is a need to help caregivers develop better patterns of care and methods to reduce the burden of care. Therefore, occupational therapists play an important role in the dementia care team. This article introduces how occupational therapists help dementia patient maintain their functional capabilities and delay degeneration and help caregivers reduce their burden of care. Both activities are based on the concept of occupational therapy, which includes three important components: people, activities, and the environment.
Kenning, Cassandra; Daker-White, Gavin; Blakemore, Amy; Panagioti, Maria; Waheed, Waquas
It is estimated that there are about 25,000 people from UK ethnic minority groups with dementia. It is clear that there is an increasing need to improve access to dementia services for all ethnic groups to ensure that everyone has access to the same potential health benefits. The aim was to systematically review qualitative studies and to perform a meta-synthesis around barriers and facilitators to accessing care for dementia in ethnic minorities. Databases were searched to capture studies on barriers and facilitators to accessing care for dementia in ethnic minorities. Analysis followed the guidelines for meta-ethnography. All interpretations of data as presented by the authors of the included papers were extracted and grouped into new themes. Six hundred and eighty four papers were identified and screened. Twenty eight studies were included in the meta-synthesis. The analysis developed a number of themes and these were incorporated into two overarching themes: 'inadequacies' and 'cultural habitus'. The two overarching themes lend themselves to interventions at a service level and a community level which need to happen in synergy. The review was registered with PROSPERO: CRD42016049326 .
Davies, N; Manthorpe, J; Sampson, E L; Iliffe, S
Introduction End of life care guidance for people with dementia is lacking and this has been made more problematic in England with the removal of one of the main end of life care guidelines which offered some structure, the Liverpool Care Pathway. This guidance gap may be eased with the development of heuristics (rules of thumb) which offer a fast and frugal form of decision-making. Objective To develop a toolkit of heuristics (rules of thumb) for practitioners to use when caring for people with dementia at the end of life. Method and analysis A mixed-method study using a co-design approach to develop heuristics in three phases. In phase 1, we will conduct at least six focus groups with family carers, health and social care practitioners from both hospital and community care services, using the ‘think-aloud’ method to understand decision-making processes and to develop a set of heuristics. The focus group topic guide will be developed from the findings of a previous study of 46 interviews of family carers about quality end-of-life care for people with dementia and a review of the literature. A multidisciplinary development team of health and social care practitioners will synthesise the findings from the focus groups to devise and refine a toolkit of heuristics. Phase 2 will test the use of heuristics in practice in five sites: one general practice, one community nursing team, one hospital ward and two palliative care teams working in the community. Phase 3 will evaluate and further refine the toolkit of heuristics through group interviews, online questionnaires and semistructured interviews. Ethics and dissemination This study has received ethical approval from a local NHS research ethics committee (Rec ref: 15/LO/0156). The findings of this study will be presented in peer-reviewed publications and national and international conferences. PMID:26338688
Sellevold, Gerd Sylvi
Background: Many nursing homes are multicultural workplaces where the majority of healthcare providers have an ethnic minority background. This environment creates challenges linked to communication, interaction and cultural differences. Further, the healthcare providers have varied experiences and understanding of what quality care of patients with dementia involves. Purpose: The aim of this study is to illuminate multi-ethnic healthcare providers´ lived experiences of their own workin...
Li Zugui; Gao Shuo; Zhang Benshu; Ma Aijun; Cai Li; Li Dacheng; Li Yansheng; Liu Lei
Objective: It is know that Alzheimer's disease (AD) and non-AD degenerative dementia have some clinical features in common. The aim of this study was to investigate the specific patterns of regional, cerebral glucose metabolism of AD and non-AD degenerative dementia patients, using a voxel-based 18 F-fluorodeoxyglucose (FDG) PET study. Methods: Twenty-three AD patients and 24 non-AD degenerative dementia patients including 9 Parkinson's disease with dementia(PDD), 7 frontal-temporal dementia (FTD), 8 dementia of Lewy bodies (DLB) patients, and 40 normal controls (NC)were included in the study. To evaluate the relative cerebral metabolic rate of glucose (rCMRglc), 18 F-FDG PET imaging was performed in all subjects. Subsequently, statistical comparison of PET data with NC was performed using statistical parametric mapping (SPM). Results: The AD-associated FDG imaging pattern typically presented as focal cortical hypometabolism in bilateral parietotemporal association cortes and(or) frontal lobe and the posterior cingulate gyms. As compared with the comparative NC, FTD group demonstrated significant regional reductions in rCMRglc in bilateral frontal, parietal lobes, the cingulate gyri, insulae, left precuneus, and the subcortical structures (including right putamen, right medial dorsal nucleus and ventral anterior nucleus). The PDD group showed regional reductions in rCMRglc in bilateral frontal cortexes, parietotemporal association cortexes, and the subcortical structures (including left caudate, right putamen, the dorsomedial thalamus, lateral posterior nucleus, and pulvinar). By the voxel-by-voxel comparison between the DLB group and NC group, regional reductions in rCMRglc included bilateral occipital cortexes, precuneuses, frontal and parietal lobes, left anterior cingulate gyms, right superior temporal cortex, and the subcortical structures including putamen, caudate, lateral posterior nucleus, and pulvinar. Conclusions: The rCMRglc was found to be different
Teresa Di Fiandra
Full Text Available The Italian Dementia National Plan was formulated in October 2014 by the Italian Ministry of Health in close cooperation with the regions, the National Institute of Health and the three major national associations of patients and carers. The main purpose of this strategy was to provide directive indications for promoting and improving interventions in the dementia field, not limiting to specialist and therapeutic actions, but particularly focusing on the support of patients and families throughout the pathways of care. Four main objectives are indicated: 1 promote health- and social-care interventions and policies; 2 create/strengthen the integrated network of services for dementia based on an integrated approach; 3 implement strategies for promoting appropriateness and quality of care; and 4 improve the quality of life of persons with dementia and their families by supporting empowerment and stigma reduction. These objectives and the pertaining actions are described in the present paper.
Hazzan, Afeez Abiola; Humphrey, Janis; Kilgour-Walsh, Laurie; Moros, Katherine L.; Murray, Carmen; Stanners, Shannon; Montemuro, Maureen; Giangregorio, Aidan; Papaioannou, Alexandra
Background Engaging with art can be valuable for persons living with dementia. ‘Artful Moments’ was a collaborative project undertaken by the Art Gallery of Hamilton and the Behavioural Health Program at Hamilton Health Sciences that sought to develop and implement a program of arts-based activities for persons in the middle-to-late stages of dementia who exhibit behavioural symptoms and for their accompanying care partners. Methods This pilot study employed a qualitative descriptive design. Eight participants were observed during multiple art sessions to evaluate their level of engagement in the program. Care partners also completed a questionnaire describing their experience. Qualitative content analysis was used to identify themes. Results For program participants, factors that promoted continued interest and engagement in art included: care partner involvement, group activities, opportunities to share opinions, validation of their personhood, and increased engagement over time. Care partners observed improvements in participants’ creativity, communication, relationship forming, and task accomplishment, and some reported reduced stress. Conclusions ‘Artful Moments’ promoted engagement and expression in persons in the middle-to-late stages of dementia, as well as having benefits for their care partners. Limitations of the study included a small convenience sample drawn from one hospital setting. PMID:27403209
Ahn, Byeong Cheol [Kyungpook National University Medical School and Kyungpook National University Hospital, Daegu (Korea, Republic of)
Dementia is a major burden for many countries including South Korea, where life expectancy is continuously growing and the proportion of aged people is rapidly growing. Neurodegenerative disorders, such as, Alzheimer disease, dementia with Lewy bodies, frontotemporal dementia. Parkinson disease, progressive supranuclear palsy, corticobasal degeneration, Huntington disease, can cause dementia, and cerebrovascular disease also can cause dementia. Depression or hypothyroidism also can cause cognitive deficits, but they are reversible by management of underlying cause unlike the forementioned dementias. Therefore these are called pseudodementia. We are entering an era of dementia care that will be based upon the identification of potentially modifiable risk factors and early disease markers, and the application of new drugs postpone progression of dementias or target specific proteins that cause dementia. Efficient pharmacologic treatment of dementia needs not only to distinguish underlying causes of dementia but also to be installed as soon as possible. Therefore, differential diagnosis and early diagnosis of dementia are utmost importance. F-18 FDG PET is useful for clarifying dementing diseases and is also useful for early detection of the disease. Purpose of this article is to review the current value of FDG PET for dementing diseases including differential diagnosis of dementia and prediction of evolving dementia.
Ahn, Byeong Cheol
Dementia is a major burden for many countries including South Korea, where life expectancy is continuously growing and the proportion of aged people is rapidly growing. Neurodegenerative disorders, such as, Alzheimer disease, dementia with Lewy bodies, frontotemporal dementia. Parkinson disease, progressive supranuclear palsy, corticobasal degeneration, Huntington disease, can cause dementia, and cerebrovascular disease also can cause dementia. Depression or hypothyroidism also can cause cognitive deficits, but they are reversible by management of underlying cause unlike the forementioned dementias. Therefore these are called pseudodementia. We are entering an era of dementia care that will be based upon the identification of potentially modifiable risk factors and early disease markers, and the application of new drugs postpone progression of dementias or target specific proteins that cause dementia. Efficient pharmacologic treatment of dementia needs not only to distinguish underlying causes of dementia but also to be installed as soon as possible. Therefore, differential diagnosis and early diagnosis of dementia are utmost importance. F-18 FDG PET is useful for clarifying dementing diseases and is also useful for early detection of the disease. Purpose of this article is to review the current value of FDG PET for dementing diseases including differential diagnosis of dementia and prediction of evolving dementia
Marx, Katherine A; Stanley, Ian H; Van Haitsma, Kimberly; Moody, Jennifer; Alonzi, Dana; Hansen, Bryan R; Gitlin, Laura N
Hospital clinical staff routinely confront challenging behaviors in patients with dementia with limited training in prevention and management. The authors of the current article conducted a survey of staff on a chronic care hospital unit concerning knowledge about dementia, perceived educational needs, and the care environment. The overall mean score for a 27-item knowledge scale was 24.08 (SD = 2.61), reflecting high level of disease knowledge. However, staff indicated a need for more information and skills, specifically for managing behaviors nonpharmacologically (92.3%), enhancing patient safety (89.7%), coping with care challenges (84.2%), and involving patients in activities (81.6%). Although most staff (i.e., nurses [80%] and therapists [86.4%]) believed their care contributed a great deal to patient well-being, approximately 75% reported frustration and being overwhelmed by dementia care. Most reported being hit, bitten, or physically hurt by patients (66.7%), as well as disrespected by families (53.8%). Findings suggest that staff have foundational knowledge but lack the "how-to" or hands-on skills necessary to implement nonpharmacological behavioral management approaches and communicate with families. Copyright 2014, SLACK Incorporated.
Odenheimer, Germaine; Borson, Soo; Sanders, Amy E; Swain-Eng, Rebecca J; Kyomen, Helen H; Tierney, Samantha; Gitlin, Laura; Forciea, Mary Ann; Absher, John; Shega, Joseph; Johnson, Jerry
Professional and advocacy organizations have long urged that dementia should be recognized and properly diagnosed. With the passage of the National Alzheimer's Project Act in 2011, an Advisory Council for Alzheimer's Research, Care, and Services was convened to advise the Department of Health and Human Services. In May 2012, the Council produced the first National Plan to address Alzheimer's disease, and prominent in its recommendations is a call for quality measures suitable for evaluating and tracking dementia care in clinical settings. Although other efforts have been made to set dementia care quality standards, such as those pioneered by RAND in its series Assessing Care of Vulnerable Elders (ACOVE), practitioners, healthcare systems, and insurers have not widely embraced implementation. This executive summary (full manuscript available at www.neurology.org) reports on a new measurement set for dementia management developed by an interdisciplinary Dementia Measures Work Group (DWG) representing the major national organizations and advocacy organizations concerned with the care of individuals with dementia. The American Academy of Neurology (AAN), the American Geriatrics Society, the American Medical Directors Association, the American Psychiatric Association, and the American Medical Association-convened Physician Consortium for Performance Improvement led this effort. The ACOVE measures and the measurement set described here apply to individuals whose dementia has already been identified and properly diagnosed. Although similar in concept to ACOVE, the DWG measurement set differs in several important ways; it includes all stages of dementia in a single measure set, calls for the use of functional staging in planning care, prompts the use of validated instruments in patient and caregiver assessment and intervention, highlights the relevance of using palliative care concepts to guide care before the advanced stages of illness, and provides evidence-based support
Ford, James H.; Wise, Meg; Krahn, Dean; Oliver, Karen Anderson; Hall, Carmen; Sayer, Nina
The study assessed sustainability of the Family Care Map, a family-centered approach to providing care for Veterans with polytrauma-related injuries, in four Department of Veterans Affairs Polytrauma Rehabilitation Centers. We applied a mixed-methods approach. Staff surveys used standardized measures of sustainability, commitment to change, information, and participation during implementation. Qualitative inquiry assessed Family Care Map implementation and facilitators and barriers to sustainability. Staff sustainability perceptions had a significant positive correlation with affective commitment to change, participation, and information received about the change process. Family Care Map integration into standard practices and use of its concepts with patients and families related to staff perceptions about sustainability. The degree of use and integration of the Family Care Map in traumatic brain injury/polytrauma care varied among the Polytrauma Rehabilitation Centers. Some successful sustainability strategies included integration into daily workflow and organizational culture. Examples of sustainability barriers included staff awareness and use and outdated information. Some practices, such as measuring and documenting the use of the Family Care Map in treatment plans, may not routinely occur. The focus on family-centered care will require further evaluation of organization-, staff-, and innovation-level attributes that influence sustainability of changes designed to improve family-centered care. PMID:25671632
Konijnenberg, Elles; Fereshtehnejad, Seyed-Mohammad; Kate, Mara Ten
BACKGROUND: Early-onset dementia (EOD) is a rare condition, with an often atypical clinical presentation, and it may therefore be challenging to diagnose. Specialized memory clinics vary in the type of patients seen, diagnostic procedures applied, and the pharmacological treatment given. The aim...... of this study was to investigate quality-of-care indicators in subjects with EOD from 3 tertiary memory clinics in 3 European countries. METHODS: We included 1325 newly diagnosed EOD patients, ages 65 years or younger, between January 1, 2007 and December 31, 2013, from the Danish Dementia Registry...... (Rigshospitalet, Copenhagen), the Swedish Dementia Registry ("SveDem", Karolinska University Hospital, Stockholm), and the Amsterdam Dementia Cohort (VU University Medical Center). RESULTS: The frequency of EOD among all dementia patients was significantly lower in Copenhagen (410, 20%) and Stockholm (284, 21...
Beer, Christopher; Horner, Barbara; Flicker, Leon; Scherer, Samuel; Lautenschlager, Nicola T.; Bretland, Nick; Flett, Penelope; Schaper, Frank; Almeida, Osvaldo P.
BACKGROUND: The Dementia In Residential care: EduCation intervention Trial (DIRECT) was conducted to determine if delivery of education designed to meet the perceived need of GPs and care staff improves the quality of life of participants with dementia living in residential care. METHODOLOGY/PRINCIPAL FINDINGS: This cluster-randomised controlled trial was conducted in 39 residential aged care facilities in the metropolitan area of Perth, Western Australia. 351 care facility residents aged 65 ...
Jones, Cindy; Moyle, Wendy
Expression of sexuality by older people, particularly those with dementia, can be challenging and confronting for aged-care staff. Education on this topic is often a low priority area for aged-care organizations, and there appears to be limited training programs available. Results from our study highlighted the value of an eLearning education…
Huang, Huei-Ling; Shyu, Yea-Ing L; Chen, Min-Chi; Huang, Chin-Chang; Kuo, Hung-Chou; Chen, Sien-Tsong; Hsu, Wen-Chuin
Purpose The purpose of this study was to explore family caregivers’ role-implementation experiences at different stages of dementia. Patients and methods For this cross-sectional, exploratory study, 176 dyads of family caregivers and their community-dwelling elderly relatives with dementia were recruited from the neurological clinics of a medical center in Taiwan. The Family Caregiving Inventory was used to assess family caregivers for caregiving activities, role strain, role preparation, and help from others at different stages of care receivers’ dementia. Results Family caregivers’ caregiving activities were related to patients’ stages of dementia. For patients with mild dementia, caregivers provided more assistance in transportation and housekeeping. In addition to these two activities, family caregivers of patients with moderate dementia provided more assistance with mobility and protection. For patients with severe dementia, family caregivers provided more assistance with personal care, mobility and protection, transportation, and housekeeping. Overall, family caregivers reported having some preparation to provide care; the most difficult caregiving activity was identified as managing behavioral problems. Conclusion This study’s results provide a knowledge base for designing dementia stage-specific interventions in clinical practice and developing community-based, long-term care systems for families of patients with dementia. PMID:25584022
This article presents a review of arts-based and creative approaches to dementia care as an alternative to antipsychotic medications. While use of antipsychotics may be appropriate for some people, the literature highlights the success of creative approaches and the benefits of their lack of negative side effects associated with antipsychotics. The focus is the use of biographical approaches, music, dance and movement to improve wellbeing, enhance social networks, support inclusive practice and enable participation. Staff must be trained to use these approaches. A case study is presented to demonstrate how creative approaches can be implemented in practice and the outcomes that can be expected when used appropriately.
Walmsley, Bruce; McCormack, Lynne
Minimal research explores the impact of dementia and a dementia diagnosis on families from the unique vantage of senior health professionals. The participants of this study, eight senior aged care professionals, provided unique interpretative insights into family dynamics and sense-making on the journey with dementia, and their own role in that journey. Both positive and negative perspectives were sought. Data from semi-structured interviews were analysed using Interpretative Phenomenological Analysis (IPA). One superordinate theme, Dementia naiveté; redefined intimacy, overarched Embarrassed shame; Maintaining hope; Redefining a model of intimacy; and Redefined relational intimacy and growth Within these themes, the participants shed light on hurtful embarrassment and shame experienced by families associated with the diagnostic label given to a loved one. This label was perceived to either trigger separation, hurt and immobility through ignorance, or precipitate a frenzy of naive yet hopeful energy for seeking that elusive cure. The participants saw their role as one of enacting a new way of connecting what was with what could be. Thus, they modelled advocacy, integral care and relational intimacy. Validation came in witnessing a redefining of intimacy in many families who were able to embrace that holistic and empathic approach to the shifting presentation of dementia. Psychological well-being was observed to occur when families embraced growthful domains, e.g. acceptance, hope, relational closeness and altruistic concern for other families. Implications for future care models are discussed. © The Author(s) 2015.
de Hoyos-Alonso, María del Canto; Bonis, Julio; Bryant, Verónica; Castell Alcalá, María Victoria; Otero Puime, Ángel
To ascertain the diagnosis associated with specific treatment for dementia in the Primary Care Electronic Clinical Record (PC-ECR) and to analyse the factors associated with the quality of registration. Descriptive study of patients taking cholinesterase inhibitors or memantine registered in Database for pharmacoepidemiological research in PC (BIFAP) 2011: 24,575 patients between 2002 and 2011. Diagnoses associated with first prescription of these drugs were grouped into 5 categories: "dementia", "memory impairment", "dementia-related diseases", "intercurrent processes" and "convenience codes". We calculated the prevalence of each category by age and sex for each study year (95%CI) and analysed the associations and trend for 2002-2011 using difference in proportions in independent samples and binary logistic regression. A code of "dementia" was associated with first prescription in 56.5% (95%CI: 55.8-57.1) of patients. It was higher in women [OR1.09 (95%CI: 1.03-1.15)] and with increasing follow-up time [OR1.07 (95%CI: 1.06-1.08) for each year of follow-up]. "Convenience codes" [16.3% (95%CI: 15.8-16.7)] were coded more frequently in women and in those ≥80 years; "Memory impairment" [12.4% (95%CI: 12.0-12.8)], "related diseases" [4.6% (95%CI: 4.4-4.8)] and "intercurrent processes" [10.3% (95%CI: 9.9-10.6)] were used more in men and in persons convenience codes". Almost half of the patients taking cholinesterase inhibitors or memantine do not have a diagnosis of dementia registered in their PC-ECR. Registration improves with increasing time of follow-up. Improvements are needed in the PC-ECR, adequate care coordination, and proactive approach to increase the quality of dementia registration. Copyright © 2014 Elsevier España, S.L.U. All rights reserved.
Sayegh, Philip; Knight, Bob G
Many minority ethnic (ME) older adults face several culturally associated and systemic barriers to timely dementia diagnoses that may result in delays to dementia care-seeking. We aimed to develop and propose a model illustrating variables that influence dementia care-seeking among ME older adults. We conducted a literature review on the effects of these barriers on diagnostic delays and impairment levels at initial evaluation. We also strived to provide a basis for the Sociocultural Health Belief Model (SHBM) to guide future research and service planning pertaining to culture and dementia care-seeking. There was consistent evidence that ME older adults with dementia tended to have greater diagnostic delays and higher levels of cognitive impairment and behavioral and psychological symptoms of dementia at initial evaluation than their non-Hispanic White counterparts. We also found several barriers to dementia care-seeking among ME groups. These barriers included lower levels of acculturation and accurate knowledge about dementia, more culturally associated beliefs about dementia, such as the perception of memory loss as normal aging and stigma associated with dementia, and health system barriers. The SHBM provides an empirically based conceptual framework for examining cross-cultural differences in dementia care-seeking among diverse groups. We provide recommendations for future research, such as the need for research with more diverse ethnic subgroups and the examination of group-specific cultural values. We conclude with a discussion of the clinical and service implications of our review, including potential interventions aimed at facilitating timely dementia diagnoses among ME older adults.
McCusker, Jane; Cole, Martin G; Voyer, Philippe; Monette, Johanne; Champoux, Nathalie; Ciampi, Antonio; Vu, Minh; Belzile, Eric
To describe the 6-month outcomes of co-occurring delirium (full syndrome and subsyndromal symptoms), depression, and dementia in a long-term care (LTC) population. Observational, prospective cohort study with 6-month follow-up conducted from 2005 to 2009. Seven LTC facilities in the province of Quebec, Canada. Newly admitted and long-term residents recruited consecutively from lists of residents aged 65 and older admitted for LTC, with stratification into groups with and without severe cognitive impairment. The study sample comprised 274 residents with complete data at baseline on delirium, dementia, and depression. Outcomes were 6-month mortality, functional decline (10-point decline from baseline on 100-point Barthel scale), and cognitive decline (3-point decline on 30-point Mini-Mental State Examination). Predictors included delirium (full syndrome or subsyndromal symptoms, using the Confusion Assessment Method), depression (Cornell Scale for Depression in Dementia), and dementia (chart diagnosis). The baseline prevalences of delirium, subsyndromal symptoms of delirium (SSD), depression, and dementia were 11%, 44%, 19%, and 66%, respectively. By 6 months, 10% of 274 had died, 19% of 233 had experienced functional decline, and 17% of 246 had experienced cognitive decline. An analysis using multivariable generalized linear models found the following significant interaction effects (P delirium and depression for functional decline, and between SSD and dementia for cognitive decline. Co-occurrence of delirium, SSD, depression, and dementia in LTC residents appears to affect some 6-month outcomes. Because of limited statistical power, it was not possible to draw conclusions about the effects of the co-occurrence of some syndromes on poorer outcomes. © 2014, Copyright the Authors Journal compilation © 2014, The American Geriatrics Society.
Johnson, Joana; Culverwell, Alison; Hulbert, Sabina; Robertson, Mitch; Camic, Paul M
Introduction Previous research has shown that people with dementia and caregivers derive wellbeing-related benefits from viewing art in a group, and that facilitated museum object handling is effective in increasing subjective wellbeing for people with a range of health conditions. The present study quantitatively compared the impact of two museum-based activities and a social activity on the subjective wellbeing of people with dementia and their caregivers. Methods A quasi-experimental crossover design was used. People with early to middle stage dementia and caregivers ( N = 66) participated in museum object handling, a refreshment break, and art viewing in small groups. Visual analog scales were used to rate subjective wellbeing pre and post each activity. Results Mixed-design analysis of variances indicated wellbeing significantly increased during the session, irrespective of the order in which the activities were presented. Wellbeing significantly increased from object handling and art viewing for those with dementia and caregivers across pooled orders, but did not in the social activity of a refreshment break. An end-of-intervention questionnaire indicated that experiences of the session were positive. Conclusion Results provide a rationale for considering museum activities as part of a broader psychosocial, relational approach to dementia care and support the use of easy to administer visual analog scales as a quantitative outcome measure. Further partnership working is also supported between museums and healthcare professionals in the development of nonclinical, community-based programs for this population.
Pierce, Mary Ellen
Nursing theory, research, and best practice guidelines contribute substantially to the field of dementia care. Interventional plans are challenged most by those dementias considered progressive and deteriorative in nature, requiring ongoing reassessment and modification of care practices as the clinical course changes. The purpose of this article is to provide guidelines for case managers in the development of effective, individualized care plans for clients with progressive dementia residing in a home setting. The application of these guidelines is illustrated through the presentation of an actual case. The practice setting is a private home in the Pacific Northwest. Geriatric case management is provided by an RN case manager. Progressive dementia presents challenges to home care. Professional case management using comprehensive, holistic assessment, collaborative approaches, and best practice fundamentals serve to create an effective, individualized plan of care. The increasing geriatric population presents great opportunities for case managers in strategic management for creating successful home care models in clients with progressive dementia. Use of nursing diagnoses, dementia research, and collaborative approaches with families and other medical providers creates a viable alternative for clients with progressive dementia.
Fleiner, Tim; Dauth, Hannah; Gersie, Marleen; Zijlstra, Wiebren; Haussermann, Peter
The primary objective of this trial is to investigate the effects of a short-term exercise program on neuropsychiatric signs and symptoms in acute hospital dementia care. Within a hospital-based randomized controlled trial, the intervention group conducted a 2-week exercise program with four 20-min exercise sessions on 3 days per week. The control group conducted a social stimulation program. Effects on neuropsychiatric signs and symptoms were measured via the Alzheimer's Disease Cooperative Study-Clinical Global Impression of Change, the Neuropsychiatric Inventory, and the Cohen-Mansfield Agitation Inventory. The antipsychotic and sedative dosage was quantified by olanzapine and diazepam equivalents. Eighty-five patients were randomized via minimization to an intervention group (IG) and a control group (CG). Seventy patients (82%) (mean age 80 years, 33 females, mean Mini Mental State Examination score 18.3 points) completed the trial. As compared to the CG (n = 35), the IG (n = 35) showed significantly reduced neuropsychiatric signs and symptoms. Especially, agitated behavior and lability improved. There were no between-group differences concerning antipsychotic and benzodiazepine medication. This exercise program is easily applicable in hospital dementia care and significantly reduces neuropsychiatric signs and symptoms in patients suffering from predominantly moderate stages of dementia. German Clinical Trial Register DRKS00006740 . Registered 28 October 2014.
Jung, Merel Madeleine; van der Leij, Lisa; Kelders, Saskia Marion
Animallike robot companions such as robotic seal Paro are increasingly used in dementia care due to the positive effects that interaction with these robots can have on the well-being of these patients. Touch is one of the most important interaction modalities for patients with dementia and can be a
Olsson, Annakarin; Engström, Maria; Skovdahl, Kirsti; Lampic, Claudia
The present paper reports on a study aimed at describing relatives' reflections on different kinds of information and communication technology (ICT) devices that are used or can be used in the daily care of persons with dementia. Many persons with dementia continue living in their own homes, which requires the support of their relatives. One way to meet the needs of relatives and persons with dementia is to use ICT. An interview study was conducted in Sweden (2007-2008) with a purposive sample of 14 spouses of a person with dementia. Qualitative content analysis was used to identify categories and themes in the data. Relatives' reflections on the use of ICT were described as ICT - a support in daily life, ICT - internal and external conditions and ICT - the decision to use or not use. Based on these categories, a theme was revealed: shifting between different perspectives: my, your and our needs for safety and security. Relatives struggle to create a situation of safety and security in daily life for themselves and the persons with dementia. ICT devices with the right functionality and used at the right time are regarded as useful in solving everyday problems. In the decision to use or not use ICT, the opportunity to create a safe and secure environment overshadows potential ethical problems. Providing early information about ICT to persons with dementia and their relatives could facilitate joint decision-making regarding use of ICT. © 2011 The Authors. Scandinavian Journal of Caring Sciences © 2011 Nordic College of Caring Science.
Bossen, Ann L; Kim, Heejung; Williams, Kristine N; Steinhoff, Andreanna E; Strieker, Molly
Demographic aging of the world population contributes to an increase in the number of persons diagnosed with dementia (PWD), with corresponding increases in health care expenditures. In addition, fewer family members are available to care for these individuals. Most care for PWD occurs in the home, and family members caring for PWD frequently suffer negative outcomes related to the stress and burden of observing their loved one's progressive memory and functional decline. Decreases in cognition and self-care also necessitate that the caregiver takes on new roles and responsibilities in care provision. Smart technologies are being developed to support family caregivers of PWD in a variety of ways, including provision of information and support resources online, wayfinding technology to support independent mobility of the PWD, monitoring systems to alert caregivers to changes in the PWD and their environment, navigation devices to track PWD experiencing wandering, and telemedicine and e-health services linking caregivers and PWD with health care providers. This paper will review current uses of these advancing technologies to support care of PWD. Challenges unique to widespread acceptance of technology will be addressed and future directions explored.
Yelland, Erin L; Cless, Adam W; Mallory, Allen B; Cless, Jessica D
This study examines public perspectives toward sexual behavior within a heterosexually married couple in which one individual has dementia and resides in a long-term care facility. Respondents included 318 adults in the Southern United States. Paired sample t tests were used to understand how the diagnosis of dementia statistically influenced participants' responses, and a logistic regression model was used to understand how a vignette character's sex and respondent characteristics influenced attitudes. Fifty-eight percent of respondents believed that a sexual relationship should be permitted for an adult with dementia, and t tests revealed that dementia had a statistical effect on participants' responses. Sex of the vignette character was not a predictor of attitudes. Participant's qualitative rationales are offered for additional insight. Respondents who felt that a couple should not engage in a sexual relationship commonly cited consent-related issues as their primary concern. Implications for policy development are discussed.
Meyer, Saskia; Gräske, Johannes; Worch, Andreas; Wolf-Ostermann, Karin
Malnutrition in the elderly is an important nursing challenge. Persons with dementia disease are often affected by malnutrition. During recent years, shared-housing arrangements (SHA) for older care-dependent people, frequently with dementia disease, have evolved in Germany. SHA can be an alternative to traditional residential care in nursing homes. The prevalence of malnutrition in SHA is compared to the prevalence in community dwellings and lower than the prevalence of malnutrition in nursing homes. There are no scientific data about the development of the nutritional status of older care-dependent people in SHA over one year. The aim of this study is to describe the nutritional status of care-dependent people with dementia disease living in SHA and to investigate changes over a period of one year. A longitudinal study with a one-year follow-up was performed. Standardised interviews with nurses were conducted concerning nutritional status (Mini Nutritional Assessment--MNA), cognitive capacities (Mini Mental State Examination--MMSE), activities of daily living (Extended Barthel-Index--EBI) and socio-demographic characteristics. Nutritional data were available for 45 residents at baseline and 36 residents at follow-up. At baseline, 45 residents with an average age of 78.4 years living in SHA in the state of Berlin, Germany, were included in the study. Predominantly, residents were female (73.3%) and diagnosed with dementia (88.9%), with a moderate to severe cognitive impairment (MMSE: 10.8) and low daily living abilities (EBI: 33.7). Most residents (80.6%) have a risk of malnutrition regarding the MNA. The average MNA score did decline slightly within one year (t0 = 20.8 vs. t1 = 19.7). Regular screenings for malnutrition using validated standardised assessments, which are easy to apply, should be implemented in SHA to avoid nutritional and health-related problems arising from malnutrition. Flexible structures for care, as in SHA, can facilitate coping with
Merel M. Jung
Full Text Available Animallike robot companions such as robotic seal Paro are increasingly used in dementia care due to the positive effects that interaction with these robots can have on the well-being of these patients. Touch is one of the most important interaction modalities for patients with dementia and can be a natural way to interact with animallike robots. To advance the development of animallike robots, we explored in what ways people with dementia could benefit from interaction with an animallike robot with more advanced touch recognition capabilities and which touch gestures would be important in their interaction with Paro. In addition, we explored which other target groups might benefit from interaction with animallike robots with more advanced interaction capabilities. In this study, we administered a questionnaire and conducted interviews with two groups of health-care providers who all worked in a geriatric psychiatry department. One group used Paro in their work (i.e., the expert group; n = 5 while the other group had no experience with the use of animallike robot (i.e., the layman group; n = 4. The results showed that health-care providers perceived Paro as an effective intervention to improve the well-being of people with dementia. Examples of usages for Paro that were mentioned were providing distraction, interrupting problematic behaviors, and stimulating communication. Furthermore, the care providers indicated that people with dementia (would use mostly positive forms of touch and speech to interact with Paro. Paro’s auditory responses were criticized because they can overstimulate the patients. In addition, the care providers argued that social interactions with Paro are currently limited and therefore the robot does not meet the needs of a broader audience such as healthy elderly people who still live in their own homes. The development of robot pets with more advanced social capabilities such as touch and speech recognition might
Moyle, Wendy; Fetherstonhaugh, Deirdre; Greben, Melissa; Beattie, Elizabeth
Over half of the residents in long-term care have a diagnosis of dementia. Maintaining quality of life is important, as there is no cure for dementia. Quality of life may be used as a benchmark for caregiving, and can help to enhance respect for the person with dementia and to improve care provision. The purpose of this study was to describe quality of life as reported by people living with dementia in long-term care in terms of the influencers of, as well as the strategies needed, to improve quality of life. A descriptive exploratory approach. A subsample of twelve residents across two Australian states from a national quantitative study on quality of life was interviewed. Data were analysed thematically from a realist perspective. The approach to the thematic analysis was inductive and data-driven. Three themes emerged in relation to influencers and strategies related to quality of life: (a) maintaining independence, (b) having something to do, and (c) the importance of social interaction. The findings highlight the importance of understanding individual resident needs and consideration of the complexity of living in large group living situations, in particular in regard to resident decision-making.
Full Text Available Signe Tretteteig,1,2 Solfrid Vatne,3 Anne Marie Mork Rokstad1,3 1Norwegian National Advisory Unit on Ageing and Health, Vestfold Hospital Trust, Tønsberg, Norway; 2Faculty of Medicine, University of Oslo; Oslo, Norway; 3Faculty of Health Sciences and Social Care, Molde University College, Molde, Norway Background: In addition to care-related burdens, most caregivers of a person with dementia perceive a variety of positive and satisfying experiences, such as feeling needed and useful in their family caregiving role. “Meaning-focused coping” describes both positive and negative emotions in periods with high levels of stress. Day care service may have the potential to increase caregivers’ positive experiences and meaning-focused coping, and positively influence interpersonal relationships between those giving care and those receiving care. The aim of this study was to gain knowledge about family caregivers’ experiences of meaning in their caring role. Additionally, the influence of day care services on caregivers’ experiences and motivation in their caregiving role is explored. Methods: A qualitative design based on individual interviews was used. The interviews were analyzed using a narrative method and a case study approach. Findings: Family caregivers’ roles and coping strategies were related to their relational ties. Caregivers had to make decisions about whether to enhance, maintain, or let go of emotional ties to find a good balance between meeting their own needs and the needs of the person with dementia. Family caregivers reported that day care positively influenced their “relationship-oriented coping” and experience of meaning. Conclusion: Finding meaning in the role of a family caregiver for persons with dementia is closely connected to the caregivers’ own values and goals. Finding a balance between attending to their own needs and the needs of the person with dementia is crucial. Day care has the potential to increase
Riesch, Julia; Meyer, Lucy; Lehr, Bosco; Severin, Thomas
For people with dementia high-quality care is vital, since at present dementia cannot be cured. In nursing homes this care is provided by the staff, who therefore require dementia-specific training enabling them to improve the quality of life for people with dementia. This article compares existing dementia-specific training for nursing home staff with recommendations, based on the current state of research, by the Alzheimer's Association and the National Institute for Health and Care Excellence, and discusses the outcome of this training. A systematic review of the literature was conducted to identify studies addressing dementia-specific training. The electronic databases Embase, Medline, Cochrane, CINAHL, PsychINFO, PSYNDEX, and ScienceDirect were searched. The training topics most commonly considered were person-centered care, communicating with people affected by dementia, and information about dementia. The roles of different social and healthcare professionals, palliative care of people with dementia, and understanding family dynamics are least featured in the training. There are training concepts which focus not only on the transfer of knowledge but also on practical exercises. In general, the recommended topics were addressed in dementia-specific training concepts, but there is potential for optimization. Further research is needed to identify success criteria in dementia-specific training and identify the successful combination of theoretical knowledge and practical exercise.
Fox, G.K; Withaar, F.K.; Bashford, G.M
Current clinical practice in Aged Care Assessment Teams (ACATs) in NSW and ACT regarding assessment of fitness to drive in clients with a diagnosis of dementia was examined. Of 42 ACATs with a geriatrician on staff, 38 (90.5%) responded to a telephone survey. Results showed that assessment of driver
McDonnell, Eilis; Ryan, Assumpta A
This study explored the experiences of sons caring for a parent with dementia. Individual, semi-structured interviews were conducted with a purposeful sample of sons (n = 13) in a rural part of Ireland. Interviews were audiotaped, transcribed verbatim and analysed for common themes. The key themes that emerged were 'the parental bond', 'a binding role', 'coordinating care and support' and a 'getting on with it' approach to care. The study highlighted the commitment of sons to their caregiving role and the strong sense of duty that motivated them to provide care. The findings suggested that while many aspects of the caregiving experience such as lack of information and support are gender neutral, there are differences in the caregiving experiences of men and women in how they view their relationship with their parent and in the management of their caregiving role that merit further investigation. © The Author(s) 2013 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav.
Collier, Lesley; Jakob, Anke
Multisensory environments (MSEs) for people with dementia have been available over 20 years but are used in an ad hoc manner using an eclectic range of equipment. Care homes have endeavored to utilize this approach but have struggled to find a design and approach that works for this setting. Study aims were to appraise the evolving concept of MSEs from a user perspective, to study the aesthetic and functional qualities, to identify barriers to staff engagement with a sensory environment approach, and to identify design criteria to improve the potential of MSE for people with dementia. Data were collected from 16 care homes with experience of MSE using ethnographic methods, incorporating semi-structured interviews, and observations of MSE design. Analysis was undertaken using descriptive statistics and thematic analysis. Observations revealed equipment that predominantly stimulated vision and touch. Thematic analysis of the semi-structured interviews revealed six themes: not knowing what to do in the room, good for people in the later stages of the disease, reduces anxiety, it's a good activity, design and setting up of the space, and including relatives and care staff. Few MSEs in care homes are designed to meet needs of people with dementia, and staff receive little training in how to facilitate sessions. As such, MSEs are often underused despite perceived benefits. Results of this study have been used to identify the design principles that have been reviewed by relevant stakeholders.
Full Text Available How can hope, love and faith stay alive when dementia enters a home? In this article I shall look especially at the spouse or partner who shares an abode with a person with dementia. Most of the authors in this field, also John Swinton who is perhaps the best known author whose books are written from a (practical theological perspective, focus on care in institutions, that means care by professionals. A partner living with a dementia patient has two main roles: as partner and caregiver. Night and day a partner is witness to the ongoing deterioration of her or his beloved partner, without being a professional. This article is founded not only on literature about dementia patients, but also on the experiences of several partners, as well as my own experiences as a partner. The question we all ask is: ‘From where does our strength come?’ I argue that what is said in the literature on the subject of (the pastoral care for dementia patients does not help the partners, because it lays a heavy burden on them, who are already suffering from feelings of grief and guilt. I do not agree with John Swinton’s idea that God created dementia. Looking for different ways of thinking about God and faith to survive with hope and love, I turn to the exegesis of the creation stories by Ellen van Wolde. These give the opportunity to take the evil of the situation of the deterioration of the personality of a patient with dementia seriously, and at the same time grant the possibility to turn the grief and guilt feelings into strength to fight evil, together with a God whose empathy and love stays with a partner in her or his loneliness and grief. Keywords: dementia; partner care; guilt feelings; evil; God as ally
Tretteteig, Signe; Vatne, Solfrid; Rokstad, Anne Marie Mork
In addition to care-related burdens, most caregivers of a person with dementia perceive a variety of positive and satisfying experiences, such as feeling needed and useful in their family caregiving role. "Meaning-focused coping" describes both positive and negative emotions in periods with high levels of stress. Day care service may have the potential to increase caregivers' positive experiences and meaning-focused coping, and positively influence interpersonal relationships between those giving care and those receiving care. The aim of this study was to gain knowledge about family caregivers' experiences of meaning in their caring role. Additionally, the influence of day care services on caregivers' experiences and motivation in their caregiving role is explored. A qualitative design based on individual interviews was used. The interviews were analyzed using a narrative method and a case study approach. Family caregivers' roles and coping strategies were related to their relational ties. Caregivers had to make decisions about whether to enhance, maintain, or let go of emotional ties to find a good balance between meeting their own needs and the needs of the person with dementia. Family caregivers reported that day care positively influenced their "relationship-oriented coping" and experience of meaning. Finding meaning in the role of a family caregiver for persons with dementia is closely connected to the caregivers' own values and goals. Finding a balance between attending to their own needs and the needs of the person with dementia is crucial. Day care has the potential to increase family caregivers' motivation to care by supporting their capacity to meet their own needs, cooperate and communicate with the person with dementia, and make competent and autonomous choices, thus increasing their feeling of mastery.
Jutkowitz, Eric; Kane, Robert L; Gaugler, Joseph E; MacLehose, Richard F; Dowd, Bryan; Kuntz, Karen M
To estimate the cost of dementia and the extra cost of caring for someone with dementia over the cost of caring for someone without dementia. We developed an evidence-based mathematical model to simulate disease progression for newly diagnosed individuals with dementia. Data-driven trajectories of cognition, function, and behavioral and psychological symptoms were used to model disease progression and predict costs. Using modeling, we evaluated lifetime and annual costs of individuals with dementia, compared costs of those with and without clinical features of dementia, and evaluated the effect of reducing functional decline or behavioral and psychological symptoms by 10% for 12 months (implemented when Mini-Mental State Examination score ≤21). Mathematical model. Representative simulated U.S. incident dementia cases. Value of informal care, out-of-pocket expenditures, Medicaid expenditures, and Medicare expenditures. From time of diagnosis (mean age 83), discounted total lifetime cost of care for a person with dementia was $321,780 (2015 dollars). Families incurred 70% of the total cost burden ($225,140), Medicaid accounted for 14% ($44,090), and Medicare accounted for 16% ($52,540). Costs for a person with dementia over a lifetime were $184,500 greater (86% incurred by families) than for someone without dementia. Total annual cost peaked at $89,000, and net cost peaked at $72,400. Reducing functional decline or behavioral and psychological symptoms by 10% resulted in $3,880 and $680 lower lifetime costs than natural disease progression. Dementia substantially increases lifetime costs of care. Long-lasting, effective interventions are needed to support families because they incur the most dementia cost. © 2017, Copyright the Authors Journal compilation © 2017, The American Geriatrics Society.
Grigorovich, Alisa; Kontos, Pia
Sexuality and intimacy are universal needs that transcend age, cognitive decline, and disability; sexuality is a fundamental aspect of the human experience. However, supporting sexuality in long-term residential care presents ethical challenges as this setting is both a home environment for residents and a workplace for health practitioners. This is particularly complex in the case of residents with dementia given the need to balance protection from harm and freedom of self-determination. Despite such complexity, this challenge has received limited critical theoretical attention. The dominant approach advocated to guide ethical reasoning is the bioethical four principles approach. However, the application of this approach in the context of dementia and long-term care may set the bar for practitioners' interference excessively high, restricting assentual (i.e., voluntary) sexual expression. Furthermore, it privileges cognitive and impartial decision-making, while disregarding performative, embodied, and relational aspects of ethical reasoning. With an interest in addressing these limitations, we explicate an alternative ethic of embodied relational sexuality that is grounded in a model of citizenship that recognizes relationality and the agential status of embodied self-expression. This alternative ethic broadens ethical reasoning from the exclusive duty to protect individuals from harm associated with sexual expression, to the duty to also uphold and support their rights to experience the benefits of sexual expression (e.g., pleasure, intimacy). As such it has the potential to inform the development of policies, organizational guidelines, and professional curricula to support the sexuality of persons with dementia, and thereby ensure more humane practices in long-term residential care settings.
Williams, Kristine N; Perkhounkova, Yelena; Herman, Ruth; Bossen, Ann
Nursing home (NH) residents with dementia exhibit challenging behaviors or resistiveness to care (RTC) that increase staff time, stress, and NH costs. RTC is linked to elderspeak communication. Communication training (Changing Talk [CHAT]) was provided to staff to reduce their use of elderspeak. We hypothesized that CHAT would improve staff communication and subsequently reduce RTC. Thirteen NHs were randomized to intervention and control groups. Dyads (n = 42) including 29 staff and 27 persons with dementia were videorecorded during care before and/or after the intervention and at a 3-month follow-up. Videos were behaviorally coded for (a) staff communication (normal, elderspeak, or silence) and (b) resident behaviors (cooperative or RTC). Linear mixed modeling was used to evaluate training effects. On average, elderspeak declined from 34.6% (SD = 18.7) at baseline by 13.6% points (SD = 20.00) post intervention and 12.2% points (SD = 22.0) at 3-month follow-up. RTC declined from 35.7% (SD = 23.2) by 15.3% points (SD = 32.4) post intervention and 13.4% points (SD = 33.7) at 3 months. Linear mixed modeling determined that change in elderspeak was predicted by the intervention (b = -12.20, p = .028) and baseline elderspeak (b = -0.65, p communication and reduce RTC, providing an effective nonpharmacological intervention to manage behavior and improve the quality of dementia care. No adverse events occurred. © The Author 2016. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: firstname.lastname@example.org.
Le Low, Lisa Pau; Lam, Lai Wah; Fan, Kim Pong
Caring and supporting older people with dementia have become a major public health priority. Recent reports have also revealed a diminishing number of family carers to provide dementia care in the future. Carers who are engaged in the caring role are known to bear significant psychological, practical and economic challenges as the disease advances over time. Seemingly, evidence indicates that the burden of care can be relieved by formal services. This study aims to explore decision-making experiences of family members of older adults with moderate dementia towards the use of community support (CS) and residential care home (RCH) services. A large multi-site constructivist grounded theory in a range of non-government organizations and a private aged home will frame this Hong Kong study. Purposive sampling will begin the recruitment of family members, followed by theoretical sampling. It is estimated that more than 100 family members using CS and RCH services will participate in an interview. The process of successive constant comparative analysis will be undertaken. The final product, a theory, will generate an integrated and comprehensive conceptual understanding which will explain the processes associated with decision-making of family members for dementia sufferers. Deeper understanding of issues including, but not exclusive to, service needs, expectations and hopes among family carers for improving service support to serve dementia sufferers in CS and RCH services will also be revealed. Importantly, this study seeks to illustrate the practical and strategic aspects of the theory and how it may be useful to transfer its applicability to various service settings to better support those who deliver formal and informal care to the dementia population.
Clarkson, Paul; Hughes, Jane; Roe, Brenda; Giebel, Clarissa M; Jolley, David; Poland, Fiona; Abendstern, Michele; Chester, Helen; Challis, David
The aim of this study was to explicate the outcomes of home support interventions for older people with dementia and/or their carers to inform clinical practice, policy and research. Most people with dementia receive support at home. However, components and effectiveness of home support interventions have been little explored. Systematic review with narrative summary. Electronic searches of published studies in English using PubMed, Cochrane Central Register of Controlled Trials, PsychINFO, CINAHL, Applied Social Science Index and CSA Social Services Abstracts. Databases and sources were searched from inception to April 2014 with no date restrictions to locate studies. The PRISMA statement was followed and established systematic review methods used. Using 14 components of care for people with dementia and their carers, identified previously, data across studies were synthesized. Interventions were grouped and described and effectiveness ratings applied. Qualitative studies were synthesized using key themes. Seventy studies (four qualitative) were included. Most were directed to carers and of high quality. Seven interventions for carers and two for people with dementia were identified, covering 81% of studies. Those relating to daily living, cognitive training and physical activity for people with dementia were absent. Measures of effectiveness were influenced mainly by the intensity (duration and frequency) of interventions. Those containing education, social support and behaviour management appeared most effective. These interventions reflect emergent patterns of home support. Research is required to identify effective interventions linked to the stage of dementia, which can be applied as part of routine clinical care. © 2017 John Wiley & Sons Ltd.
Kosse, Nienke M.; de Groot, Maartje H.; Vuillerme, Nicolas; Hortobagyi, Tibor; Lamoth, Claudine J. C.
Background: Falls in long-term care residents with dementia represent a costly but unresolved safety issue. The aim of the present study was to (1) determine the incidence of falls, fall-related injuries and fall circumstances, and (2) identify the relationship between patient characteristics and
Mohrsen Busted, Laila; Nielsen, Dorthe; Birkelund, Regner
to decrease the experienced burden that relatives to persons with dementia experience. The qualitative research project consists of three parts; 1) An interview study to investigate the problem area as experienced by 24 relatives. 2) Initiate family intervention, conducted by professional caregivers......Relatives to persons with dementia are in the literature described as the "invisible second patients." They get a more burdensome responsibility to the family’s everyday life and relation within the family. Furthermore, relatives as caregivers provide most of the assistance and supervision...... to fulfill the basic needs of the person with dementia. The experience of being close to a person with dementia may seem as a burden that involves emotional chaos and uncertainty which can lead to stress and depressions. Family health therapeutic conversations may be an intervention to relieve the suffering...
Previous articles in this series (Vol 7(15): 891-94; Vol 7(17): 1018-20; Vol 7(19): 1145-49; Vol 7(20): 1247-50) have explored the promotion of quality of life for people with dementia and how this can be achieved through existing interventions. This final article moves from discussing specific interventions to cover wider issues around healthcare beliefs and values. A brief historical overview of dementia care is given, outlining the inherited structures and values. Much valuable work has been carried out by the Bradford Dementia Group, who has described changes in dementia care as moving from an 'old' to a 'new' culture. This 'new culture', offering a comprehensive person-centred approach to holistic care, is explored with reference to the work of Kitwood, who has done much to promote quality of life for people suffering from dementia.
Lee, Yanki; Hendriks, Niels; Tsang, Albert
In Chinese society like in many cultures, persons with dementia suffer some level of stigmatisation. For this reason a dementia research/care centre in Hong Kong (China) initiated the design of the “dementia experience tool”. Its main goal is to create public understanding through inviting the general public to experience dementia. The dementia research/care centre commissioned a social design research lab team (two of the authors are part of this) to create the tool, sta...
Memantine (Ebixa--Lundbeck Ltd), an oral medicine, is available in the UK for treating "patients with moderately severe to severe Alzheimer's disease". It differs from other licensed dementia medicines in that it is an N-methyl-D-aspartate (NMDA) receptor antagonist. The company has claimed that, with memantine therapy, "improvements in activities of daily living help patients to maintain a degree of independence and be easier to care for, potentially avoiding the need for nursing home care". We assess the efficacy of memantine for dementia and discuss its place in the management of patients with Alzheimer's disease.
Subramaniam, Mythily; Ong, Hui Lin; Abdin, Edimansyah; Chua, Boon Yiang; Shafie, Saleha; Siva Kumar, Fiona Devi; Foo, Sophia; Ng, Li Ling; Lum, Alvin; Vaingankar, Janhavi A; Chong, Siow Ann
The number of people living with dementia is increasing globally as a result of an ageing population. General practitioners (GPs), as the front-line care providers in communities, are important stakeholders in the system of care for people with dementia. This commentary describes a study conducted to understand GPs' attitudes and self-perceived competencies when dealing with patients with dementia and their caregivers in Singapore. A set of study information sheet and survey questionnaires were mailed to selected GP clinics in Singapore. The survey, comprising the "GP Attitudes and Competencies Towards Dementia" questionnaire, was administered. A total of 400 GPs returned the survey, giving the study a response rate of 52.3%. About 74% of the GPs (n=296) were seeing dementia patients in their clinics. Almost all the GPs strongly agreed that early recognition of dementia served the welfare of the patients (n=385; 96%) and their relatives (n=387; 97%). About half (51.5%) of the respondents strongly agreed or agreed that they felt confident carrying out an early diagnosis of dementia. Factor analysis of questionnaire revealed 4 factors representing "benefits of early diagnosis and treatment of patients with dementia", "confidence in dealing with patients and caregiver of dementia", "negative perceptions towards dementia care" and "training needs". GPs in Singapore held a generally positive attitude towards the need for early dementia diagnosis but were not equally confident or comfortable about making the diagnosis themselves and communicating with and managing patients with dementia in the primary care setting. Dementia education and training should therefore be a critical step in equipping GPs for dementia care in Singapore. Shared care teams could further help build up GPs' knowledge, confidence and comfort in managing patients with dementia.
McEvoy, Phil; Eden, John; Plant, Rachel
Communication skills training materials in dementia care usually focus on reminiscence. This is important because talking about past events can help people with dementia to retain their sense of self. This article examines the use of an alternative set of communication skills known as empathic curiosity, which may help to promote meaningful communication in the here and now with people who are living with dementia.
Full Text Available Background. Given the dementia epidemic and the increasing cost of healthcare, there is a need to assess the economic benefit of community based dementia screening programs. Materials and Methods. Markov model simulations were generated using data obtained from a community based dementia screening program over a one-year period. The models simulated yearly costs of caring for patients based on clinical transitions beginning in pre dementia and extending for 10 years. Results. A total of 93 individuals (74 female, 19 male were screened for dementia and 12 meeting clinical criteria for either mild cognitive impairment (n=7 or dementia (n=5 were identified. Assuming early therapeutic intervention beginning during the year of dementia detection, Markov model simulations demonstrated 9.8% reduction in cost of dementia care over a ten-year simulation period, primarily through increased duration in mild stages and reduced time in more costly moderate and severe stages. Discussion. Community based dementia screening can reduce healthcare costs associated with caring for demented individuals through earlier detection and treatment, resulting in proportionately reduced time in more costly advanced stages.
Bosch-Bayard, Rodolfo I; Llibre-Rodríguez, Juan J; Fernández-Seco, Alberto; Borrego-Calzadilla, Carmen; Carrasco-García, Mayra R; Zayas-Llerena, Tania; Moreno-Carbonell, Carmen R; Reymond-Vasconcelos, Ana G
Dementia is a great challenge to public health in Cuba due to its impact on society and families. Cuba's National Intervention Strategy for Alzheimer Disease and Dementia Syndromes is designed to address this challenge. The Strategy includes working guidelines for primary and secondary care, education about rights of people with cognitive impairment, professional development, research, and health promotion and dementia prevention. An associated action plan, focused on primary care, includes proposals for creation of memory clinics, day centers and comprehensive rehabilitation services for cognitive stimulation. Short-term measures proposed include increasing early detection; creating a dementia morbidity and mortality registry; promoting professional training; providing support for families; and promoting basic and clinical research on dementia. Medium-term proposals aim to reduce dementia incidence and mortality by controlling risk factors and promoting healthy lifestyles, offering new treatment options and optimizing early detection. A set of indicators has been developed to evaluate strategy implementation. With this strategy, Cuba joins the small number of developing countries that have responded to WHO's call to improve care for patients with dementia and alleviate its impact on society and families. KEYWORDS Dementia, Alzheimer disease, aging, national health programs, social stigma, primary prevention, health promotion, civil rights, Cuba.
Laditka, Sarah B.; Tseng, Winston; Price, Anna E.; Ivey, Susan L.; Friedman, Daniela B.; Liu, Rui; Wu, Bei; Logsdon, Rebecca G.; Beard, Renee L.
We examined beliefs about promoting cognitive health among Filipino Americans who care for persons with dementia, their awareness of media information about cognitive health, and their suggestions for communicating such information to other caregivers. We conducted three focus groups (25 participants). The constant comparison method compared…
To investigate the feeling of burden and needs in care, a questionnaire was made which consists of "feeling of burden in care" (family Maslash Burnout Inventory for care or M.B.I. in short) and "family needs" (own making). It was mailed to ninety-nine caregiver of the family with the aged with dementia who cared them at home utilizing day-care service at a special nursing home for the aged, and attended family class once a month. 67 valid answers were obtained. The average age of caregiver was 57.0 years; seventy-six percent of them were female. Their difficulties were own health condition and lack of a cooperator for care. The main component analysis of family M.B.I. for care showed that fatigue was the main factor, indicating that it is very important to provide the families with mental support. Many caregivers thought that their care were useful and worthy; however score of "emotional exhaustion" were higher and score of "self attainment" were lower.
Davies, N; Manthorpe, J; Sampson, E L; Iliffe, S
End of life care guidance for people with dementia is lacking and this has been made more problematic in England with the removal of one of the main end of life care guidelines which offered some structure, the Liverpool Care Pathway. This guidance gap may be eased with the development of heuristics (rules of thumb) which offer a fast and frugal form of decision-making. To develop a toolkit of heuristics (rules of thumb) for practitioners to use when caring for people with dementia at the end of life. A mixed-method study using a co-design approach to develop heuristics in three phases. In phase 1, we will conduct at least six focus groups with family carers, health and social care practitioners from both hospital and community care services, using the 'think-aloud' method to understand decision-making processes and to develop a set of heuristics. The focus group topic guide will be developed from the findings of a previous study of 46 interviews of family carers about quality end-of-life care for people with dementia and a review of the literature. A multidisciplinary development team of health and social care practitioners will synthesise the findings from the focus groups to devise and refine a toolkit of heuristics. Phase 2 will test the use of heuristics in practice in five sites: one general practice, one community nursing team, one hospital ward and two palliative care teams working in the community. Phase 3 will evaluate and further refine the toolkit of heuristics through group interviews, online questionnaires and semistructured interviews. This study has received ethical approval from a local NHS research ethics committee (Rec ref: 15/LO/0156). The findings of this study will be presented in peer-reviewed publications and national and international conferences. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.
Fossey, Jane; Garrod, Lucy; Guzman, Azucena; Testad, Ingelin
Objectives This study explored the experiences of a range of health and social care professionals employed in the role of trainer/coaches to support care home staff to implement a psychosocial intervention for residents living with dementia. It aimed to identify the factors which are pertinent to these roles, in the context of a cascade model of training. Method A focus group was convened involving dementia trainer/coaches and supervisors who had worked on Well-being and Health for people with Dementia randomised control trial. Twelve participants explored their preparedness for and experiences of their role as 'Well-being and Health for people with Dementia therapists'. They reflected on their perceptions of the resources and support required. The data were transcribed verbatim and subjected to inductive thematic analysis. Results Three main themes emerged from the data. Within the theme of 'skills in relationship building' were two subthemes of developing trust and getting to know individual staff and each care home. In the second main theme of 'making use of tangible resources' two subthemes relating to using the Well-being and Health for people with Dementia manuals and the supervision of the therapists arose. The third theme, 'being an agent for change' contained three subthemes: effective training methods, creating opportunities for Dementia Champions to reflect and therapists' perceived rewards of their role. Conclusion The findings provide new insights into the trainer/coach role applicable to the practices of services recruiting, training and providing ongoing professional support to practitioners in-reaching into care homes.
Orsulic-Jeras, S; Judge, K S; Camp, C J
Sixteen residents in long-term care with advanced dementia (14 women; average age = 88) showed significantly more constructive engagement (defined as motor or verbal behaviors in response to an activity), less passive engagement (defined as passively observing an activity), and more pleasure while participating in Montessori-based programming than in regularly scheduled activities programming. Principles of Montessori-based programming, along with examples of such programming, are presented. Implications of the study and methods for expanding the use of Montessori-based dementia programming are discussed.
Peacock, Shelley; Duggleby, Wendy; Koop, Priscilla
Dementia is a terminal illness, and family caregivers play a vital role in providing end-of-life care to their relative. The present study begins to address the paucity of research regarding end-of-life caregiving experience with dementia. This study utilized Munhall's methodology for interpretive phenomenology. Seven women and four men were interviewed two to three times within a year of their relative's death; interviews were transcribed verbatim and hermeneutically analyzed. Findings reveal two essential aspects of end-of-life dementia caregiving: being-with and being-there. Further findings are organized according to the existential life worlds. Examination of the life worlds demonstrates that 1) spatiality provided a sense or lack of feeling welcome to provide end-of-life care; 2) temporality was an eternity or time melting away quickly, or the right or wrong time to die; 3) corporeality revealed feelings of exhaustion; and 4) relationality was felt as a closeness to others or in tension-filled relationships. An understanding from bereaved caregivers' perspectives will help healthcare practitioners better support and empathize with family caregivers. Further research is warranted that focuses on other places of death and differences in experience based on gender or relationship to the care receiver.
Sakata, Nobuo; Okumura, Yasuyuki; Fushimi, Kiyohide; Nakanishi, Miharu; Ogawa, Asao
To assess the association between dementia and risk of hospital readmission and to evaluate whether the effect of dementia on hospital readmission varies according to primary diagnosis. Retrospective cohort study. Nationwide discharge database of acute care hospitals in Japan. Individuals aged 65 and older diagnosed with one of the 30 most common diagnoses and discharged from 987 hospitals between April 2014 and September 2015 (N = 1,834,378). The primary outcome was unplanned hospital readmission within 30 days. Poisson generalized estimating equation models were fitted to assess the risks of readmission for individuals with and without dementia, using primary diagnosis as a possible effect modifier and clinical factors as potential confounders. The overall prevalence of dementia was 14.7% and varied according to primary diagnosis, ranging from 3.0% in individuals with prostate cancer to 69.4% in those with aspiration pneumonia. Overall, individuals with dementia had a higher risk of hospital readmission (8.3%) than those without (4.1%) (adjusted risk ratio (aRR])=1.46, 95% confidence interval (CI)=1.44-1.49), although diagnostic category substantially modified the relationship between dementia and hospital readmission. For hip fracture, dementia was associated with greater risk of hospital readmission (adjusted risk 11.5% vs 7.9%; aRR=1.46; 95% CI=1.28-1.68); this risk was attenuated for cholecystitis (adjusted risk 12.8% vs 12.4%; aRR=1.03; 95% CI=0.90-1.18). Risk of hospital readmission associated with dementia varied according to primary diagnosis. Healthcare providers could enforce interventions to minimize readmission by focusing on comorbid conditions in individuals with dementia and specific primary diagnoses that increase their risk of readmission. © 2018, Copyright the Authors Journal compilation © 2018, The American Geriatrics Society.
Research-based information about the prevalence of other serious medical conditions in people with dementia has become available only recently, and the true prevalence is not known, primarily because many people with dementia do not have a diagnosis. The existing information is sufficient, however, to show that these other conditions are common in people with dementia. It is also clear that coexisting medical conditions increase the use and cost of health care services for people with dementia, and conversely, dementia increases the use and cost of health care services for people with other serious medical conditions. Nurses and other healthcare professionals should expect to see these relationships in their elderly patients. They should know how to recognize possible dementia and assess, or obtain an assessment of, the patient's cognitive status. They should expect the worsening of cognitive and related symptoms in acutely ill people with dementia and try to eliminate factors that cause this worsening, to the extent possible, while assuring the family that the symptoms are likely to improve once the acute phase of illness or treatment is over. Families, nurses, and other health care professionals are challenged by the complex issues involved in caring for a person with both dementia and other serious medical conditions. Greater attention to these issues by informed and thoughtful clinicians will improve outcomes for the people and their family and professional caregivers.
Implementation of an evidence-based intervention to improve the wellbeing of people with dementia and their carers: study protocol for 'Care of People with dementia in their Environments (COPE)' in the Australian context.
Clemson, Lindy; Laver, Kate; Jeon, Yun-Hee; Comans, Tracy A; Scanlan, Justin; Rahja, Miia; Culph, Jennifer; Low, Lee-Fay; Day, Sally; Cations, Monica; Crotty, Maria; Kurrle, Susan; Piersol, Catherine; Gitlin, Laura N
There are effective non-pharmacological treatment programs that reduce functional disability and changed behaviours in people with dementia. However, these programs (such as the Care of People with dementia in their Environments (COPE) program) are not widely available. The primary aim of this study is to determine the strategies and processes that enable the COPE program to be implemented into existing dementia care services in Australia. This study uses a mixed methods approach to test an implementation strategy. The COPE intervention (up to ten consultations with an occupational therapist and up to two consultations with a nurse) will be implemented using a number of strategies including planning (such as developing and building relationships with dementia care community service providers), educating (training nurses and occupational therapists in how to apply the intervention), restructuring (organisations establishing referral systems; therapist commitment to provide COPE to five clients following training) and quality management (coaching, support, reminders and fidelity checks). Qualitative and quantitative data will contribute to understanding how COPE is adopted and implemented. Feasibility, fidelity, acceptability, uptake and service delivery contexts will be explored and a cost/benefit evaluation conducted. Client outcomes of activity engagement and caregiver wellbeing will be assessed in a pragmatic pre-post evaluation. While interventions that promote independence and wellbeing are effective and highly valued by people with dementia and their carers, access to such programs is limited. Barriers to translation that have been previously identified are addressed in this study, including limited training opportunities and a lack of confidence in clinicians working with complex symptoms of dementia. A strength of the study is that it involves implementation within different types of existing services, such as government and private providers, so the study
Ridder, Hanne Mette Ochsner; Stige, Brynjulf; Qvale, Liv Gunnhild
Objectives: Agitation in nursing home residents with dementia leads to increase in psychotropic medication, decrease in quality of life, and to patient distress and caregiver burden. Music therapy has previously been found effective in treatment of agitation in dementia care but studies have been...... methodologically insufficient. The aim of this study was to examine the effect of individual music therapy on agitation in persons with moderate/severe dementia living in nursing homes, and to explore its effect on psychotropic medication and quality of life. Method: In a crossover trial, 42 participants...... with dementia were randomized to a sequence of six weeks of individual music therapy and six weeks of standard care. Outcome measures included agitation, quality of life and medication. Results: Agitation disruptiveness increased during standard care and decreased during music therapy. The difference at −6...
The aim of this study was to explore the connection between the nature of agitated behaviour and meaningful biographical experiences within two types of dementia in a moderate stadium. The two dementia types included Alzheimer Disease (SDAT) and Multi-infarction aphrenia (MID). Biographical narrative interviews with 26 nursing home residents suffering from dementia have been concluded. Topics were their first thirty years of life (based on a foreign anamnesis). The challenging behaviour has been observed systematically in nursing situations. The data has been evaluated with the comparative casuistics method (Jüttemann, 1990). The behaviour has been measured with the CMAI-scale before and also after having moved to a nursing home. Residents behaviour patterns can be divided into three biographical central characters: Life as finding, life as emotional disorder and life as struggle. Institutional characteristics: Loss of near rhythms of life, losing control over the personal area, experience of social isolation and certain characteristics from nurses: staff detractions and the exercise of nursing actions which appears threats contribute to the phenomena. A disparity is shown between the types of dementia in terms of patterns of demonstrated behaviour. In addition gender differences could be shown. The recognition of the phenomena by means of the CMAI-scale elucidate that the phenomena appears for the first time or is stronger after the resettlement to a nursing home. These findings can improve nurses' understanding of the phenomena within long-term care.
Spijker, A.; Verhey, F.; Graff, M.J.L.; Grol, R.P.T.M.; Adang, E.M.M.; Wollersheim, H.C.H.; Vernooy-Dassen, M.J.F.J.
BACKGROUND: Care for people with dementia and their informal caregivers is a challenging aim in healthcare. There is an urgent need for cost-effective support programs that prevent informal caregivers of people with dementia from becoming overburdened, which might result in a delay or decrease of
Scerri, Anthony; Scerri, Charles
Dementia training programmes for staff working in long-term care settings have been found to be effective in improving staff outcomes. This study investigated the impact of a dementia training programme for all Maltese nursing staff working in public nursing/residential homes on their knowledge, attitudes and confidence. Additionally, we identified the predictors of these domains before and after the programme. A 14-hour training programme focusing on dementia management, care and policy was developed for all nursing staff working in public nursing and residential homes in Malta. A pretest-posttest design was used to evaluate the participants' knowledge of dementia, attitudes and confidence in working with residents with dementia using validated tools. Demographic variables were measured and compared with each staff domain. The majority of nursing staff attended the training programme with 261 fully completed questionnaires being collected pre-training and 214 post-training. The programme significantly improved nursing staff knowledge, attitudes and confidence. Stepwise regression analysis of each staff domain showed that the strongest predictor in all models at pre-training was the intensity of previous training programmes. Furthermore, staff who attended previous training continued to improve in their attitudes and confidence following programme completion. The study continues to shed further evidence on the impact of dementia training programs on staff outcomes. It also indicated that the intensity of previous participation in dementia training programmes was related to the participants' knowledge, attitudes and confidence and that continual exposure to training had a cumulative effect.
Curyto, Kimberly J; Vriesman, Deedre K
Competent dementia care requires caregivers with specialized knowledge and skills. The Knowledge of Dementia Competencies Self-Assessment Tool was developed to help direct care workers (DCWs) assess their knowledge of 7 dementia competencies identified by the Michigan Dementia Coalition. Item selection was guided by literature review and expert panel consultation. It was given to 159 DCWs and readministered to 57 DCWs in a range of long-term care settings and revised based on qualitative feedback and statistical item analyses, resulting in 82 items demonstrating good internal consistency and test-retest reliability. Performance on items assessing competencies rated as most important was significantly related to training in these competencies. The DCWs in day care obtained higher scores than those in home care settings, and their sites reported a greater number of hours of dementia training. Validation in a more diverse group of DCWs and assessing its relationship to other measures of knowledge and skill is needed. © The Author(s) 2015.
Polenick, Courtney A; Leggett, Amanda N; Maust, Donovan T; Kales, Helen C
Medical care tasks are commonly provided by spouses caring for persons living with dementia (PLWDs). These tasks reflect complex care demands that may interfere with sleep, yet their implications for caregivers' sleep outcomes are unknown. The authors evaluated the association between caregivers' medical/nursing tasks (keeping track of medications; managing tasks such as ostomy care, intravenous lines, or blood testing; giving shots/injections; and caring for skin wounds/sores) and care-related sleep disturbances. A retrospective analysis of cross-sectional data from the 2011 National Health and Aging Trends Study and National Study of Caregiving was conducted. Spousal caregivers and PLWDs/proxies were interviewed by telephone at home. The U.S. sample included 104 community-dwelling spousal caregivers and PLWDs. Caregivers reported on their sociodemographic and health characteristics, caregiving stressors, negative caregiving relationship quality, and sleep disturbances. PLWDs (or proxies) reported on their health conditions and sleep problems. Caregivers who performed a higher number of medical/nursing tasks reported significantly more frequent care-related sleep disturbances, controlling for sociodemographic and health characteristics, caregiving stressors, negative caregiving relationship quality, and PLWDs' sleep problems and health conditions. Post hoc tests showed that wound care was independently associated with more frequent care-related sleep disturbances after accounting for the other medical/nursing tasks and covariates. Spousal caregivers of PLWDs who perform medical/nursing tasks may be at heightened risk for sleep disturbances and associated adverse health consequences. Interventions to promote the well-being of both care partners may benefit from directly addressing caregivers' needs and concerns about their provision of medical/nursing care. Copyright © 2018 American Association for Geriatric Psychiatry. Published by Elsevier Inc. All rights
Full Text Available BACKGROUND: The Dementia In Residential care: EduCation intervention Trial (DIRECT was conducted to determine if delivery of education designed to meet the perceived need of GPs and care staff improves the quality of life of participants with dementia living in residential care. METHODOLOGY/PRINCIPAL FINDINGS: This cluster-randomised controlled trial was conducted in 39 residential aged care facilities in the metropolitan area of Perth, Western Australia. 351 care facility residents aged 65 years and older with Mini-Mental State Examination ≤ 24, their GPs and facility staff participated. Flexible education designed to meet the perceived needs of learners was delivered to GPs and care facility staff in intervention groups. The primary outcome of the study was self-rated quality of life of participants with dementia, measured using the QOL-Alzheimer's Disease Scale (QOL-AD at 4 weeks and 6 months after the conclusion of the intervention. Analysis accounted for the effect of clustering by using multi-level regression analysis. Education of GPs or care facility staff did not affect the primary outcome at either 4 weeks or 6 months. In a post hoc analysis excluding facilities in which fewer than 50% of staff attended an education session, self-rated QOL-AD scores were 6.14 points (adjusted 95%CI 1.14, 11.15 higher at four-week follow-up among residents in facilities randomly assigned to the education intervention. CONCLUSION: The education intervention directed at care facilities or GPs did not improve the quality of life ratings of participants with dementia as a group. This may be explained by the poor adherence to the intervention programme, as participants with dementia living in facilities where staff participated at least minimally seemed to benefit. TRIAL REGISTRATION: ANZCTR.org.au ACTRN12607000417482.
Beer, Christopher; Horner, Barbara; Flicker, Leon; Scherer, Samuel; Lautenschlager, Nicola T; Bretland, Nick; Flett, Penelope; Schaper, Frank; Almeida, Osvaldo P
The Dementia In Residential care: EduCation intervention Trial (DIRECT) was conducted to determine if delivery of education designed to meet the perceived need of GPs and care staff improves the quality of life of participants with dementia living in residential care. This cluster-randomised controlled trial was conducted in 39 residential aged care facilities in the metropolitan area of Perth, Western Australia. 351 care facility residents aged 65 years and older with Mini-Mental State Examination ≤ 24, their GPs and facility staff participated. Flexible education designed to meet the perceived needs of learners was delivered to GPs and care facility staff in intervention groups. The primary outcome of the study was self-rated quality of life of participants with dementia, measured using the QOL-Alzheimer's Disease Scale (QOL-AD) at 4 weeks and 6 months after the conclusion of the intervention. Analysis accounted for the effect of clustering by using multi-level regression analysis. Education of GPs or care facility staff did not affect the primary outcome at either 4 weeks or 6 months. In a post hoc analysis excluding facilities in which fewer than 50% of staff attended an education session, self-rated QOL-AD scores were 6.14 points (adjusted 95%CI 1.14, 11.15) higher at four-week follow-up among residents in facilities randomly assigned to the education intervention. The education intervention directed at care facilities or GPs did not improve the quality of life ratings of participants with dementia as a group. This may be explained by the poor adherence to the intervention programme, as participants with dementia living in facilities where staff participated at least minimally seemed to benefit. ANZCTR.org.au ACTRN12607000417482.
Jones, Ian Rees
Research addressing social class and dementia has largely focused on measures of socioeconomic status as causal risk factors for dementia and in observed differences in diagnosis, treatment and care. This large body of work has produced important insights but also contains numerous problems and weaknesses. Research needs to take account of the ways in which ageing and social class have been transformed in tandem with the economic, social and cultural coordinates of late modernity. These changes have particular consequences for individual identities and social relations. With this in mind this article adopts a critical gaze on research that considers interactions between dementia and social class in three key areas: (i) epidemiological approaches to inequalities in risk (ii) the role of social class in diagnosis and treatment and (iii) class in the framing of care and access to care. Following this, the article considers studies of dementia and social class that focus on lay understandings and biographical accounts. Sociological insights in this field come from the view that dementia and social class are embedded in social relations. Thus, forms of distinction based on class relations may still play an important role in the lived experience of dementia. © 2017 Foundation for the Sociology of Health & Illness.
Hamad, Ahmad I.; Ibrahim, Mohammed A.; Sulaiti, Essa M.
Dementia is the major public health problem among the elderly in developed countries and a growing problem in the underdeveloped countries. There are no published data on dementia in any of the Arab countries. The aim of this study was to determine the different subtypes of dementia among Qataris. A retrospective and prospective ongoing hospital based study in which all medical records of the patients with diagnosis of dementia seen at the Hamad General Hospital, Doha, Qatar, between June 1997 and June 2003, whether inpatient and outpatient were reviewed. Dementia was defined according to diagnostic and statistical manual (DSM) IV criteria. Those who had dementia were evaluated by a psychologist, psychiatrist, neurologist and a geriatrician. All had brain computerized tomography, magnetic resonance imaging or both and routine blood test. Finally, they were classified into sub-types according to the cause of dementia. One of 300 patients, 134 fulfilled the inclusion criteria, most of them were illiterate, married and non-smokers. Among those dementia sub-types were: Alzheimer disease (AD) 39 (29%), vascular dementia (VaD) 30 (22%), mixed AD and VaD 20 (15%) and Parkinson's disease with dementia due to other medical conditions. Our stidy showed that AD is more prevalent than VaD. It also showed that patients and their families seek medical help late due to to the general belief among the public that forgetfulness and other associated cognitive impairment are part of normal aging process. The emergence of new drugs and advancement in prevention of cerebrovascular diseases make early diagnosis of dementia sub-type important. A community based study to show the real prevalence and incidence of sub-types of dementia is highly indicated. These data are necessory for planning and setting up community services and health care programs for demented patients. (author)
Kaisey, Marwa; Mittman, Brian; Pearson, Marjorie; Connor, Karen I; Chodosh, Joshua; Vassar, Stefanie D; Nguyen, France T; Vickrey, Barbara G
Care management approaches have been proven to improve outcomes for patients with dementia and their family caregivers (dyads). However, acceptance of services in these programs is incomplete, impacting effectiveness. Acceptance may be related to dyad as well as healthcare system characteristics, but knowledge about factors associated with program acceptance is lacking. This study investigates patient, caregiver, and healthcare system characteristics associated with acceptance of offered care management services. This study analyzed data from the intervention arm of a cluster randomized controlled trial of a comprehensive dementia care management intervention. There were 408 patient-caregiver dyads enrolled in the study, of which 238 dyads were randomized to the intervention. Caregiver, patient, and health system factors associated with participation in offered care management services were assessed through bivariate and multivariate regression analyses. Out of the 238 dyads, 9 were ineligible for this analysis, leaving data of 229 dyads in this sample. Of these, 185 dyads accepted offered care management services, and 44 dyads did not. Multivariate analyses showed that higher likelihood of acceptance of care management services was uniquely associated with cohabitation of caregiver and patient (p management participation could result in increased adoption of successful programs to improve quality of care. Using these factors to revise both program design as well as program promotion may also benefit external validity of future quality improvement research trials. Copyright © 2011 John Wiley & Sons, Ltd.
Within contemporary medical practice, Parkinson's disease (PD) is treated using a biomedical, neurological approach, which although bringing numerous benefits can struggle to engage with how people with PD experience the disease. A bio-psycho-social approach has not yet been established in PD; however, bio-psycho-social approaches adopted within dementia care practice could bring significant benefit to PD care. This paper summarises existing bio-psycho-social models of dementia care and explores how these models could also usefully be applied to care for PD. Specifically, this paper adapts the bio-psycho-social model for dementia developed by Spector and Orrell (), to suggest a bio-psycho-social model, which could be used to inform routine care in PD. Drawing on the biopsychosocial model of Dementia put forward by Spector and Orrell (), this paper explores the application of a bio-psycho-social model of PD. This model conceptualises PD as a trajectory, in which several interrelated fixed and tractable factors influence both PD's symptomology and the various biological and psychosocial challenges individuals will face as their disease progresses. Using an individual case study, this paper then illustrates how such a model can assist clinicians in identifying suitable interventions for people living with PD. This model concludes by discussing how a bio-psycho-social model could be used as a tool in PD's routine care. The model also encourages the development of a theoretical and practical framework for the future development of the role of the PD specialist nurse within routine practice. A biopsychosocial approach to Parkinson's Disease provides an opportunity to move towards a holistic model of care practice which addresses a wider range of factors affecting people living with PD. The paper puts forward a framework through which PD care practice can move towards a biopsychosocial perspective. PD specialist nurses are particularly well placed to adopt such a model
Kulibert, Danica; Ebert, Alexandria; Preman, Sharayah; McFadden, Susan H
Although evidence is mounting that personalized music has beneficial effects for long-term care residents with dementia, little research has examined the effects of personalized music for the majority of persons with dementia living at home. These individuals live at home with care partners who may also benefit from having music that is personalized for their loved one. Using the Music & Memory SM program of personalized playlists delivered via iPod Shuffles®, the current study examined the effects of the Music & Memory program for persons with dementia by using the Bath Assessment of Subjective Quality of Life in Dementia scale and a Music Listening Experience Scale developed for this study. We also administered three scales that captured care partner experiences. Transcripts of the Bath Assessment of Subjective Quality of Life in Dementia administrations at the beginning of the study and 3 months later, plus interviews about the Music & Memory program, were then analyzed using the interpretive phenomenological analysis method. Themes about the Music & Memory program and life living with dementia for from diagnosed persons and their care partners are discussed.
Creavin, Sam T; Wisniewski, Susanna; Noel-Storr, Anna H; Trevelyan, Clare M; Hampton, Thomas; Rayment, Dane; Thom, Victoria M; Nash, Kirsty J E; Elhamoui, Hosam; Milligan, Rowena; Patel, Anish S; Tsivos, Demitra V; Wing, Tracey; Phillips, Emma; Kellman, Sophie M
BACKGROUND: The Mini Mental State Examination (MMSE) is a cognitive test that is commonly used as part of the evaluation for possible dementia.OBJECTIVES: To determine the diagnostic accuracy of the Mini-Mental State Examination (MMSE) at various cut points for dementia in people aged 65 years and over in community and primary care settings who had not undergone prior testing for dementia.SEARCH METHODS: We searched the specialised register of the Cochrane Dementia and Cognitive Improvement G...
Petriwskyj, Andrea; Gibson, Alexandra; Parker, Deborah; Banks, Susan; Andrews, Sharon; Robinson, Andrew
Ensuring older adults' involvement in their care is accepted as good practice and is vital, particularly for people with dementia, whose care and treatment needs change considerably over the course of the illness. However, involving family members in decision making on people's behalf is still practically difficult for staff and family. The aim of this review was to identify and appraise the existing quantitative evidence about family involvement in decision making for people with dementia living in residential aged care. The present Joanna Briggs Institute (JBI) metasynthesis assessed studies that investigated involvement of family members in decision making for people with dementia in residential aged care settings. While quantitative and qualitative studies were included in the review, this paper presents the quantitative findings. A comprehensive search of 15 electronic databases was performed. The search was limited to papers published in English, from 1990 to 2013. Twenty-six studies were identified as being relevant; 10 were quantitative, with 1 mixed method study. Two independent reviewers assessed the studies for methodological validity and extracted the data using the JBI Meta Analysis of Statistics Assessment and Review Instrument (JBI-MAStARI). The findings were synthesized and presented in narrative form. The findings related to decisions encountered and made by family surrogates, variables associated with decisions, surrogates' perceptions of, and preferences for, their roles, as well as outcomes for people with dementia and their families. The results identified patterns within, and variables associated with, surrogate decision making, all of which highlight the complexity and variation regarding family involvement. Attention needs to be paid to supporting family members in decision making in collaboration with staff.
Full Text Available To explore the healthcare resource utilization, psychotropic drug use and mortality of older people with dementia.A nationwide propensity score-matched cohort study.National Health Insurance Research database.A total of 32,649 elderly people with dementia and their propensity-score matched controls (n=32,649.Outpatient visits, inpatient care, psychotropic drug use, in-hospital mortality and all-cause mortality at 90 and 365 days.Compared to the non-dementia group, a higher proportion of patients with dementia used inpatient services (1 year after index date: 20.91% vs. 9.55%, and the dementia group had more outpatient visits (median [standard deviation]: 7.00 [8.87] vs. 3.00 [8.30]. Furthermore, dementia cases with acute admission had the highest psychotropic drug utilization both at baseline and at the post-index dates (difference-in-differences: all <0.001. Dementia was associated with an increased risk of all-cause mortality (90 days, Odds ratio (OR=1.85 [95%CI 1.67-2.05], p<0.001; 365 days, OR=1.59 [1.50-1.69], p<0.001 and in-hospital mortality (90 days, OR=1.97 [1.71-2.27], p<0.001; 365 days, OR=1.82 [1.61-2.05], p<0.001 compared to matched controls.When older people with dementia are admitted for acute illnesses, they may increase their use of psychotropic agents and their risk of death, particularly in-hospital mortality.
Lepeleire, J. De; Wind, A.W.; Iliffe, S.; Moniz-Cook, E.; Wilcock, J.; Gonzalez, V.M.; Derksen, E.W.C.; Gianelli, M.V.; Vernooy-Dassen, M.J.F.J.
OBJECTIVES: To explore the extent of variation in the detection of dementia in primary care across Europe, and the potential for the development of European guidelines. METHOD: A mixture of focus group and adapted nominal group methods involving 23 experts of different disciplines and from eight
What to ask your doctor about dementia; Alzheimer disease - what to ask your doctor; Cognitive impairment - what to ask your doctor ... Alzheimer's Association. Dementia Care Practice Recommendations ... in a Home Setting. Updated 2009. Alz.org. www.alz.org/national/ ...
Machiels, Mariska; Metzelthin, Silke F; Hamers, Jan P H; Zwakhalen, Sandra M G
To provide adequate nursing care it is important for nursing staff to communicate effectively with people with dementia. Due to their limited communication skills, people with dementia have difficulties in understanding communication and expressing themselves verbally. Nursing staff members often report communication difficulties with people with dementia, which emphasises the urgent need for interventions to improve their communication with people in this specific target group. To provide an up-to-date overview of communication interventions that are applicable during daily nursing care activities, irrespective of care setting, and to describe the effects on communication outcomes in people with dementia and nursing staff. Systematic literature review DATA SOURCES: The Cochrane Library, CINAHL, PsycINFO, and Pubmed databases were searched for all articles published until the 23rd of February 2016. Papers were included, if: (1) interventions focused on communication between nursing staff and people with dementia and were applicable during daily nursing care; (2) studies were (randomised) controlled trials; (3) papers were written in English, Dutch, or German. Data were extracted on content and communication outcomes of interventions, and on methodological quality of the studies. The data extraction form and methodological quality checklist were based on the Method Guidelines for Systematic Reviews for the Cochrane Back Review Group. Six studies on communication interventions were included. All of the studies incorporated a communication skills training for nursing staff with a broad range in frequency, duration and content. In addition, there was wide variation in the communication outcome measures used. Four studies measured non-verbal communication, all found positive effects on at least some of the communication outcomes. Four studies measured verbal communication, of which three found positive effects on at least one of the measured outcomes. Methodological
Lokon, Elizabeth; Sauer, Philip E; Li, Yue
This exploratory study compares the impact of five activity types on the well-being of institutionalized people with dementia: the intergenerational art program Opening Minds through Art, art and music therapies, creative activities, non-creative activities, and no activities at all. We validated the Scripps Modified Greater Cincinnati Chapter Well-Being Observational Tool, and used that instrument to systematically observe N = 67 people with dementia as they participated in different activity types. People with dementia showed the highest well-being scores during Opening Minds through Art compared to all other activities. No significant well-being differences were found between creative activities led by licensed art/music therapist versus regular activity staff. Furthermore, no significant well-being differences were found between creative and non-creative activities that were both led by regular activity staff. Overall, people with dementia benefit from participating in activities, regardless of the type (creative or non-creative), or who conducts them (licensed therapists or activity staff). However, in order for people with dementia to reach significantly high levels of overall well-being, we recommend that activities are specifically designed for people with dementia and incorporate a 1:1 ratio between people with dementia and well-trained volunteers/staff members. © The Author(s) 2016.
Plastow, N A
The increased availability of assistive technologies, particularly tagging and tracking technology, raises questions for occupational therapists working in dementia care. As experts in environmental adaptation to support participation, occupational therapists need to be clear about what technologies are available to address wandering behaviour, how emerging technologies will be used in their practice, and how they will proactively respond to the ethical issues involved in these technologies. ...
BACKGROUND The demand for critical care services among elderly with dementia outpaces that of their non-dementia elderly counterparts. However, there are scarce data on the corresponding attributes among ICU-managed patients with dementia. MATERIAL AND METHODS We used the Texas Inpatient Public Use Data File to examine temporal trends of the demographics, burden of comorbidities, measures of severity of illness, use of healthcare resources, and short-term outcomes among hospitalizations aged 65 years or older with a reported diagnosis of dementia, who were admitted to ICU (D-ICU hospitalizations) between 2001 and 2010. Average annual percent changes (AAPC) were derived. RESULTS D-ICU hospitalizations (n=276,056) had increasing mean (SD) Charlson comorbidity index [1.7 (1.5) vs. 2.6 (1.9)], with reported organ failure (OF) nearly doubling from 25% to 48.5%, between 2001–2001 and 2009–2010, respectively. Use of life support interventions was infrequent, but rose in parallel with corresponding changes in respiratory and renal failure. Median total hospital charges increased from $26,442 to $36,380 between 2001–2002 and 2009–2010. Routine home discharge declined (–5.2%/year [–6.2%– –4.1%]) with corresponding rising use of home health services (+7.2%/year [4.4–10%]). Rates of discharge to another hospital or a nursing facility remained unchanged, together accounting for 60.4% of discharges of hospital survivors in 2010. Transfers to a long-term acute care hospital increased 9.2%/year (6.9–11.5%). Hospital mortality (7.5%) remained unchanged. CONCLUSIONS Elderly D-ICU hospitalizations have increasing comorbidity burden, with rising severity of illness, and increasing use of health care resources. Though the majority survived hospitalization, most D-ICU hospitalizations were discharged to another facility.
McGilton, Katherine S; Höbler, Fiona; Campos, Jennifer; Dupuis, Kate; Labreche, Tammy; Guthrie, Dawn M; Jarry, Jonathan; Singh, Gurjit; Wittich, Walter
Introduction Hearing and vision loss among long-term care (LTC) residents with dementia frequently goes unnoticed and untreated. Despite negative consequences for these residents, there is little information available about their sensory abilities and care assessments and practices seldom take these abilities or accessibility needs into account. Without adequate knowledge regarding such sensory loss, it is difficult for LTC staff to determine the level of an individual's residual basic competence for communication and independent functioning. We will conduct a scoping review to identify the screening measures used in research and clinical contexts that test hearing and vision in adults aged over 65 years with dementia, aiming to: (1) provide an overview of hearing and vision screening in older adults with dementia; and (2) evaluate the sensibility of the screening tools. Methods and analysis This scoping review will be conducted using the framework by Arksey and O'Malley and furthered by methodological enhancements from cited researchers. We will conduct electronic database searches in CENTRAL, CINAHL, EMBASE, MEDLINE and PsycINFO. We will also carry out a ‘grey literature’ search for studies or materials not formally published, both online and through interview discussions with healthcare professionals and research clinicians working in the field. Our aim is to find new and existing hearing and vision screening measures used in research and by clinical professionals of optometry and audiology. Abstracts will be independently reviewed twice for acceptance by a multidisciplinary team of researchers and research clinicians. Ethics and dissemination This review will inform health professionals working with this growing population. With the review findings, we aim to develop a toolkit and an algorithmic process to select the most appropriate hearing and vision screening assessments for LTC residents with dementia that will facilitate accurate testing and can
Wang, Su-Chin; Yu, Ching-Len; Chang, Su-Hsien
The purpose was to examine the effectiveness of music care on cognitive function, depression, and behavioral problems among elderly people with dementia in long-term care facilities in Taiwan. The study had a quasi-experimental, longitudinal research design and used two groups of subjects. Subjects were not randomly assigned to experimental group (n = 90) or comparison group (n = 56). Based on Bandura's social cognition theory, subjects in the experimental group received Kagayashiki music care (KMC) twice per week for 24 weeks. Subjects in the comparison group were provided with activities as usual. Results found, using the control score of the Clifton Assessment Procedures for the Elderly Behavior Rating Scale (baseline) and time of attending KMC activities as a covariate, the two groups of subjects had statistically significant differences in the mini-mental state examination (MMSE). Results also showed that, using the control score of the Cornell Scale for Depression in Dementia (baseline) and MMSE (baseline) as a covariate, the two groups of subjects had statistically significant differences in the Clifton Assessment Procedures for the Elderly Behavior Rating Scale. These findings provide information for staff caregivers in long-term care facilities to develop a non