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
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.
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.
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: email@example.com.
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.
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
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.
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
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.
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.
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.
Iecovich, Esther; Rabin, Barbara
The study's purpose was to examine (a) bedside nurses' care practices when providing care to patients with dementia or those who are physically disabled and (b) the extent to which these actions vary by type of hospital, type of ward, and nurse's characteristics. The sample included 265 nurses in internal medicine and geriatric wards in 2 general hospitals in Israel. The results showed that the most prevalent practices were giving greater attention to these patients, locating them in a room near the nurses' station and asking family members to stay with the patient or to hire paid carers. Use of restraints was more prevalent in patients with dementia than those who were physically disabled. Use of specific practices significantly varied by type of ward and hospital, suggesting that nurses' care practices are more connected with organizational characteristics than other factors.
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.
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
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.
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.
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.
Ngo, Jennifer; Holroyd-Leduc, Jayna M
dementia is a highly prevalent acquired cognitive disorder that interferes with activities of daily living, relationships and quality of life. Recognition and effective management strategies are necessary to provide comprehensive care for these patients and their families. High-quality clinical practice guidelines can improve the quality and consistency of care in all aspects of dementia diagnosis and management by clarifying interventions supported by sound evidence and by alerting clinicians to interventions without proven benefit. we aimed to offer a synthesis of existing practice recommendations for the diagnosis and management of dementia, based upon moderate-to-high quality dementia guidelines. we performed a systematic search in EMBASE and MEDLINE as well as the grey literature for guidelines produced between 2008 and 2013. thirty-nine retrieved practice guidelines were included for quality appraisal by the Appraisal of Guidelines Research and Evaluation II (AGREE-II) tool, performed by two independent reviewers. From the 12 moderate-to-high quality guidelines included, specific practice recommendations for the diagnosis and/or management of any aspect of dementia were extracted for comparison based upon the level of evidence and strength of recommendation. there was a general agreement between guidelines for many practice recommendations. However, direct comparisons between guidelines were challenging due to variations in grading schemes. © The Author 2014. Published by Oxford University Press on behalf of the British Geriatrics Society. All rights reserved. For Permissions, please email: firstname.lastname@example.org.
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
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.
Zuidema, Sytse U.; Johansson, Alice; Selbaek, Geir; Murray, Matt; Burns, Alistair; Ballard, Clive; Koopmans, Raymond T. C. M.
Background: To produce a practice guideline that includes a set of detailed consensus principles regarding the prescription of antipsychotics (APs) amongst people with dementia living in care homes. Methods: We used a modified Delphi consensus procedure with three rounds, where we actively specified
Zuidema, S.U.; Johansson, A; Selbaek, G.; Murray, M.; Burns, A.; Ballard, C.; Koopmans, R.T.C.M.
BACKGROUND: To produce a practice guideline that includes a set of detailed consensus principles regarding the prescription of antipsychotics (APs) amongst people with dementia living in care homes. METHODS: We used a modified Delphi consensus procedure with three rounds, where we actively specified
... 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, ...
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.
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.
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
Yusoff, S; Koh, C T; Mohd Aminuddin, M Y; Krishnasamy, M; Suhaila, M Z
The Malaysian Clinical Practice Guidelines (CPG) for Management of Dementia (second edition) was launched in April 2010 by the Ministry of Health Malaysia. A training programme for the management of dementia, involving all categories of staff working at primary and secondary centres, was implemented to ensure that care delivery for people with dementia was in accordance with the guidelines. The study aimed to look into improving knowledge and understanding of dementia following training, and to evaluate the effectiveness of the training programme using a clinical audit indicator recommended in the guidelines. The study entailed 2 phases (at national and state levels). The first phase involved the CPG training programme run as a 1.5-day workshop, in which participants filled up pre- and post-workshop questionnaires. A second phase involved analysing all the referral letters to the memory clinic at the Hospital Sultan Ismail, Johor Bahru 1 year before and after the training programme. There was a significant improvement in knowledge about dementia and its management among the health care professionals following training. The mean percentage score for the pre-workshop test was 63% while for the post-workshop test it was 78%, giving a difference of 15%. Although there was an overall improvement in knowledge gain following training in both specialist and non-specialist groups, these differences were not statistically significant (t = 1.32; 95% confidence interval, -2.61 to 9.61; p = 0.25). The proportion of referrals with a possible diagnosis of dementia from primary clinic referrals to the memory clinic also increased from 18% to 44% after training. There was an overall improvement in the knowledge about dementia among the health care professionals following the training, which was reflected in the increase in referrals to the memory clinic. Although the initial results appeared to be promising, a multicentre study is warranted to conclude that the training had been
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.
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.
Ayalon, Liat; Arean, Patricia; Bornfeld, Heather; Beard, Renee
Despite a growing literature on effective interventions for Alzheimer's disease (AD) and agitation, the management of these conditions in long term care (LTC) often is inadequate. The goals of the present study were: (a) to evaluate existing beliefs about evidence based practices (EBP) for the management of Alzheimer's disease and agitation among LTC staff; and (b) to evaluate the contribution of demographic and attitudinal variables to LTC staff beliefs about these EBP. A cross sectional study of 371 LTC staff members completed an EBP questionnaire, a short demographic questionnaire, and an attitudinal questionnaire about AD and agitation. Paraprofessional caregivers, those of lower educational level, and ethnic minorities were more likely to be in disagreement with the EBP views examined in this study. Those in disagreement with the EBP views also reported a preference towards not working with residents with AD and agitation and a sense of helplessness associated with such work. Disagreement with EBP views was associated with both normalization and stigmatization of AD and agitation. Paraprofessional caregivers, ethnic minorities, and people of lower educational level are most at need for educational activities about AD and neuropsychiatric symptoms. Educational efforts geared towards changing the belief system of LTC staff should target not only EBP but also information about AD and agitation as conditions that are deviant from the normal aging process, yet non-stigmatizing. It is expected that following EBP will empower staff and improve staff motivation to work with residents with AD and agitation. (c) 2008 John Wiley & Sons, Ltd.
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
... Eating Handling their own personal care Help With Memory Loss People who have early memory loss can ... Give the person clear choices, and a visual cue, such as pointing to something, if possible. DO ...
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.
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.
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.
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.
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 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
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.
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.
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...
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.
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.
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....
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.
Evans, N.C.; Pasman, H.R.W.; Donker, G.A.; Deliens, L.; Block, L.; Onwuteaka-Philipsen, B.D.
Background: End-of-life care is often provided in primary care settings. Aim: To describe and compare general-practitioner end-of-life care for Dutch patients who died from 'cancer', 'organ failure' and 'old-age or dementia'. Design: A cross-sectional, retrospective survey was conducted within a
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…
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.
Full Text Available Alfredo Raglio,1,2 Stefania Filippi,2 Daniele Bellandi,3 Marco Stramba-Badiale4 1Department of Public Health, Experimental and Forensic Medicine, University of Pavia, Pavia, Italy; 2APSP “Margherita Grazioli”, Povo, Trento, Italy; 3Geriatric Department, Sospiro Foundation, Sospiro, Cremona, Italy; 4Department of Geriatrics and Cardiovascular Medicine, IRCCS Istituto Auxologico Italiano, Milan, Italy Abstract: Music is an important resource for achieving psychological, cognitive, and social goals in the field of dementia. This paper describes the different types of evidence-based music interventions that can be found in literature and proposes a structured intervention model (global music approach to persons with dementia, GMA-D. The literature concerning music and dementia was considered and analyzed. The reported studies included more recent studies and/or studies with relevant scientific characteristics. From this background, a global music approach was proposed using music and sound–music elements according to the needs, clinical characteristics, and therapeutic–rehabilitation goals that emerge in the care of persons with dementia. From the literature analysis the following evidence-based interventions emerged: active music therapy (psychological and rehabilitative approaches, active music therapy with family caregivers and persons with dementia, music-based interventions, caregivers singing, individualized listening to music, and background music. Characteristics of each type of intervention are described and discussed. Standardizing the operational methods and evaluation of the single activities and a joint practice can contribute to achieve the validation of the application model. The proposed model can be considered a low-cost nonpharmacological intervention and a therapeutic–rehabilitation method for the reduction of behavioral disturbances, for stimulation of cognitive functions, and for increasing the overall quality of life
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
Raglio, Alfredo; Filippi, Stefania; Bellandi, Daniele; Stramba-Badiale, Marco
Music is an important resource for achieving psychological, cognitive, and social goals in the field of dementia. This paper describes the different types of evidence-based music interventions that can be found in literature and proposes a structured intervention model (global music approach to persons with dementia, GMA-D). The literature concerning music and dementia was considered and analyzed. The reported studies included more recent studies and/or studies with relevant scientific characteristics. From this background, a global music approach was proposed using music and sound-music elements according to the needs, clinical characteristics, and therapeutic-rehabilitation goals that emerge in the care of persons with dementia. From the literature analysis the following evidence-based interventions emerged: active music therapy (psychological and rehabilitative approaches), active music therapy with family caregivers and persons with dementia, music-based interventions, caregivers singing, individualized listening to music, and background music. Characteristics of each type of intervention are described and discussed. Standardizing the operational methods and evaluation of the single activities and a joint practice can contribute to achieve the validation of the application model. The proposed model can be considered a low-cost nonpharmacological intervention and a therapeutic-rehabilitation method for the reduction of behavioral disturbances, for stimulation of cognitive functions, and for increasing the overall quality of life of persons with dementia.
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
Walker, Ian F; Lord, Paul A; Farragher, Tracey M
Improving dementia diagnosis rates in England has been a key strategic aim of the UK Government but the variation and low diagnosis rates are poorly understood. The aim of this study was to explore the variation in actual versus expected diagnosis of dementia across England, and how these variations were associated with general practice characteristics. A cross-sectional, ecological study design using secondary data sources and median regression modelling was used. Data from the year 2011 for 7711 of the GP practices in England (92.7%). Associations of dementia diagnosis rates (%) per practice, calculated using National Health Service England's 'Dementia Prevalence Calculator' and various practice characteristics were explored using a regression model. The median dementia diagnosis rate was 41.6% and the interquartile range was 31.2-53.9%. Multivariable regression analysis demonstrated positive associations between dementia diagnosis rates and deprivation of the population, overall Quality and Outcomes Framework performance, type of primary care contract and size of practice list. Negative associations were found between dementia diagnosis rates and average experience of GPs in the practice and the proportion of the practice caseload over 65 years old. Dementia diagnosis rates vary greatly across GP practices in England. This study has found independent associations between dementia diagnosis rates and a number of patient and practice characteristics. Consideration of these factors locally may provide targets for case-finding interventions and so facilitate timely diagnosis.
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
Giebel, Clarissa; Roe, Brenda; Hodgson, Anthony; Britt, David; Clarkson, Paul
Public involvement is an important element in health and social care research. However, it is little evaluated in research. This paper discusses the utility and impact of public involvement of carers and people with dementia in a five-year programme on effective home support in dementia, from proposal and design to methods of data collection, and provides a useful guide for future research on how to effectively involve the public. The Home SupporT in Dementia (HoST-D) Programme comprises two elements of public involvement, a small reference group and a virtual lay advisory group. Involving carers and people with dementia is based on the six key values of involvement - respect, support, transparency, responsiveness, fairness of opportunity, and accountability. Carers and people with dementia gave opinions on study information, methods of data collection, an economic model, case vignettes, and a memory aid booklet, which were all taken into account. Public involvement has provided benefits to the programme whilst being considerate of the time constraints and geographical locations of members.
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.
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
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
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 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
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.
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.
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.
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.
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.
Hsiao, Hsin-Yi; Liu, Zhaorui; Xu, Ling; Huang, Yueqin; Chi, Iris
Mental health providers are the major resource families rely on when experiencing the effects of dementia. However, mental health resources and manpower are inadequate and unevenly distributed between cities and towns in China. This study was conducted to examine similarities and differences in knowledge, attitudes, and clinical practices concerning dementia and working with family caregivers from mental health providers' perspectives in city versus town settings. Data were collected during focus group discussions with 40 mental health providers in the Xicheng (city) and Daxing (town) districts in Beijing, China in 2011. Regional disparities between providers' knowledge of early diagnosis of dementia and related counseling skills were identified. Regional similarities included training needs, dementia-related stigma, and low awareness of dementia among family caregivers. Culturally sensitive education specific to dementia for mental health providers and a specialized dementia care model for people with dementia and their family caregivers are urgently needed. Implications for geriatric practitioners and educators are discussed.
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…
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
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.
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,
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.
Spiro, Neta; Farrant, Camilla L; Pavlicevic, Mercédès
Does current music therapy practice address the goals encapsulated in the UK Department of Health document, Living well with dementia: a national dementia strategy (the Dementia Strategy) published in 2009? A survey elicited the views of clients, family members, music therapists, care home staff and care home managers, about this question by focusing on the relationship between music therapy and the 17 objectives outlined in the Dementia Strategy. The results showed that the objectives that are related to direct activity of the music therapists (such as care and understanding of the condition) were seen as most fulfilled by music therapy, while those regarding practicalities (such as living within the community) were seen as least fulfilled. Although the responses from the four groups of participants were similar, differences for some questions suggest that people's direct experience of music therapy influences their views. This study suggests that many aspects of the Dementia Strategy are already seen as being achieved. The findings suggest that developments of both music therapy practices and government strategies on dementia care may benefit from being mutually informed.
Geldmacher, David S.; Kerwin, Diana R.
Objective: To review evidence-based guidance on the primary care of Alzheimer’s disease and clinical research on models of primary care for Alzheimer’s disease to present a practical summary for the primary care physician regarding the assessment and management of the disease.
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.
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 ...
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.
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.
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.
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...
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
Fukui, Sadaaki; Okada, Shinichi; Nishimoto, Yukio; Nelson-Becker, Holly B
Dementia care has been trapped in a "trial and error" type of practice due to difficulty understanding the needs of older adults with severe dementia. Behavioral and Psychological Signs and Symptoms of Dementia (BPSD) can be quite difficult for residential staff. However, some experienced care workers succeed in establishing effective relationships. The goal of this study was to: 1) develop a process to identify needs behind BPSD; 2) find solutions using a team approach; and 3) apply the results to educate new workers. The KJ method was employed to reach decision-making about best practices in residential dementia care. This qualitative method is used to organize group data collected in the field and is based on understanding complex situations. A group process of 12 Japanese care workers experienced in understanding and responding to the "repeated appeal to return home" of residents in nursing care facilities is highlighted along with an illustrative case example. The workgroup met over two years. The study revealed five steps in understanding the needs behind the appeal, which include: (1) Listen to the voice and go with the flow of the behavior; (2) Learn about the inner experience; (3) Learn about the contextual environment of "here and now" situations; (4) Reflect on the care environment; and (5) Find the keyword. This needs identification process has application to other cultural contexts. The implications of this study for practitioners who work with people with dementia in residential settings will be discussed.
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...
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…
Kerwin, Diana R.
Objective: To review evidence-based guidance on the primary care of Alzheimer’s disease and clinical research on models of primary care for Alzheimer’s disease to present a practical summary for the primary care physician regarding the assessment and management of the disease. Data Sources: References were obtained via search using keywords Alzheimer’s disease AND primary care OR collaborative care OR case finding OR caregivers OR guidelines. Articles were limited to English language from January 1, 1990, to January 1, 2013. Study Selection: Articles were reviewed and selected on the basis of study quality and pertinence to this topic, covering a broad range of data and opinion across geographical regions and systems of care. The most recent published guidelines from major organizations were included. Results: Practice guidelines contained numerous points of consensus, with most advocating a central role for the primary care physician in the detection, diagnosis, and treatment of Alzheimer’s disease. Review of the literature indicated that optimal medical and psychosocial care for people with Alzheimer’s disease and their caregivers may be best facilitated through collaborative models of care involving the primary care physician working within a wider interdisciplinary team. Conclusions: Evidence-based guidelines assign the primary care physician a critical role in the care of people with Alzheimer’s disease. Research on models of care suggests the need for an appropriate medical/nonmedical support network to fulfill this role. Given the diversity and breadth of services required and the necessity for close coordination, nationwide implementation of team-based, collaborative care programs may represent the best option for improving care standards for patients with Alzheimer’s disease. PMID:24392252
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.
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
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.
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...
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.
Walters, K; Hardoon, S; Petersen, I; Iliffe, S; Omar, R Z; Nazareth, I; Rait, G
Existing dementia risk scores require collection of additional data from patients, limiting their use in practice. Routinely collected healthcare data have the potential to assess dementia risk without the need to collect further information. Our objective was to develop and validate a 5-year dementia risk score derived from primary healthcare data. We used data from general practices in The Health Improvement Network (THIN) database from across the UK, randomly selecting 377 practices for a development cohort and identifying 930,395 patients aged 60-95 years without a recording of dementia, cognitive impairment or memory symptoms at baseline. We developed risk algorithm models for two age groups (60-79 and 80-95 years). An external validation was conducted by validating the model on a separate cohort of 264,224 patients from 95 randomly chosen THIN practices that did not contribute to the development cohort. Our main outcome was 5-year risk of first recorded dementia diagnosis. Potential predictors included sociodemographic, cardiovascular, lifestyle and mental health variables. Dementia incidence was 1.88 (95% CI, 1.83-1.93) and 16.53 (95% CI, 16.15-16.92) per 1000 PYAR for those aged 60-79 (n = 6017) and 80-95 years (n = 7104), respectively. Predictors for those aged 60-79 included age, sex, social deprivation, smoking, BMI, heavy alcohol use, anti-hypertensive drugs, diabetes, stroke/TIA, atrial fibrillation, aspirin, depression. The discrimination and calibration of the risk algorithm were good for the 60-79 years model; D statistic 2.03 (95% CI, 1.95-2.11), C index 0.84 (95% CI, 0.81-0.87), and calibration slope 0.98 (95% CI, 0.93-1.02). The algorithm had a high negative predictive value, but lower positive predictive value at most risk thresholds. Discrimination and calibration were poor for the 80-95 years model. Routinely collected data predicts 5-year risk of recorded diagnosis of dementia for those aged 60-79, but not those aged 80+. This
Dementia diagnosis is important for many different reasons. Firstly, to separate dementia, or major neurocognitive disorder, from MCI (mild cognitive impairment), mild neurocognitive disorder. Secondly, to define the specific underlying brain disorder to aid treatment, prognosis and decisions regarding care needs and assistance. The diagnostic method of dementias is a puzzle of different data pieces to be fitted together in the best possible way to reach a clinical diagnosis. Using a modified case methodology concept, risk factors affecting cognitive reserve and symptoms constituting the basis of the brain damage hypothesis, can be visualized, balanced and reflected against test results as well as structural and biochemical markers. The model's origin is the case method initially described in Harvard business school, here modified to serve dementia diagnostics.
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
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
Full Text Available The daily lives of individuals with dementia, cognitive aspects need to be strengthened in order to maintain the quality. For this reason, dementia, cognitive, psycho-social applications there is a need to increase activity. Dementia drug treatment interventions used as an aid to increase cognitive activity. These interventions, behavior, emotion, perception and stimulation-oriented approaches can be classified into four groups. Dementia cognitive enhancer activity and an older group, this intervention and dissemination practices for selecting the most appropriate method to be applied. All psychosocial practices to increase cognitive activity psychiatrist, psychiatric nurse specialists, psychologists, social workers, occupational therapists can with the condition to study the relevant therapy. [Psikiyatride Guncel Yaklasimlar - Current Approaches in Psychiatry 2014; 6(3.000: 210-216
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.
Teodorczuk, Andrew; Mukaetova-Ladinska, Elizabeta; Corbett, Sally; Welfare, Mark
Older patients with dementia and delirium receive suboptimal hospital care. Policy calls for more effective education to address this though there is little consensus on what this entails. The purpose of this clarification study is to explore how practice gaps are constructed in relation to managing the confused hospitalised older patient. The…
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.
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.
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.
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.
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.
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 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
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.
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.
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.
Keady, John; Sage, Karen; Wilkinson, Ray
Abstract Background There has been increasing interest in dementia care in recent years, including how practitioners, service providers and society in general can help individuals to live well with the condition. An important aspect to this is provision of advice to ensure conversation partners effectively support the person with dementia in conversation. Aims To provide a descriptive review of the literature examining everyday conversation in dementia in order to inform practice and research. Methods & Procedures This review used a method specifically developed for reviewing conversation analytic and related literature. A range of databases were searched using key words and explicitly described inclusion criteria leading to a final corpus of 50 titles. Using this qualitative methodology, each paper was examined and data extracted. The contribution of each of these is described and the implications for practice and research are outlined. Main Contribution This review examined studies into conversation in Alzheimer's disease, vascular dementia and Lewy body dementia, grouping these into: early influential studies; work drawing on positioning theory; studies using social and linguistic approaches; collaborative storytelling; formulaic language; studies specifically using conversation analysis; and conversation as a target for individualized therapy. In addition, more recent work examining primary progressive aphasia and behavioural variant frontotemporal dementia was explored. Overall, this review indicates that research examining conversation in natural settings provides a rich source of data to explore not just the challenges within conversation for those taking part, but also the skills retained by the person with dementia. An important aspect of this understanding is the notion that these skills relate not only to information exchange but also aspects of social interaction. The role of others in scaffolding the conversation abilities of the person with dementia
Kindell, Jacqueline; Keady, John; Sage, Karen; Wilkinson, Ray
There has been increasing interest in dementia care in recent years, including how practitioners, service providers and society in general can help individuals to live well with the condition. An important aspect to this is provision of advice to ensure conversation partners effectively support the person with dementia in conversation. To provide a descriptive review of the literature examining everyday conversation in dementia in order to inform practice and research. This review used a method specifically developed for reviewing conversation analytic and related literature. A range of databases were searched using key words and explicitly described inclusion criteria leading to a final corpus of 50 titles. Using this qualitative methodology, each paper was examined and data extracted. The contribution of each of these is described and the implications for practice and research are outlined. This review examined studies into conversation in Alzheimer's disease, vascular dementia and Lewy body dementia, grouping these into: early influential studies; work drawing on positioning theory; studies using social and linguistic approaches; collaborative storytelling; formulaic language; studies specifically using conversation analysis; and conversation as a target for individualized therapy. In addition, more recent work examining primary progressive aphasia and behavioural variant frontotemporal dementia was explored. Overall, this review indicates that research examining conversation in natural settings provides a rich source of data to explore not just the challenges within conversation for those taking part, but also the skills retained by the person with dementia. An important aspect of this understanding is the notion that these skills relate not only to information exchange but also aspects of social interaction. The role of others in scaffolding the conversation abilities of the person with dementia and the potential of this for developing interventions are
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.
Ángel Julio Romero Cabrera
Full Text Available Considering as our main goal to expose the state of the art in diagnosis and treatment of dementia insisting in its latest advances and suggesting practical contributions for its management in our context, we offer a panoramical view of dementia as an important health problem and expose the essentials for its diagnosis and management including cognitive impairment diagnosis, variants, etiologic diagnosis, the diagnosis of demential syndrome, the importance of neuropsychiatric assessment and the treatment options. We emphasize in the need to provide appropriate orientation to families and those who take care of the elderly.
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.
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.
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.
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.
... 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 ...
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.
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.
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.
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.
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
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
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
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...
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
indicated by correlations with the caregiver-reported Neuropsychiatric Inventory (NPI total score and NPI caregiver distress score; sensitivity to three-month change compared with NPI “reliable change” groups; and known-groups validity, indicated by significant separation of Mini-Mental Status Examination severity groups and clinical diagnostic groups. Although not designed as a screening study, there was evidence for good operating characteristics, according to area under the receiver-operator curve with respect to gold standard clinical diagnoses, relative to Mini-Mental Status Examination or NPI.Conclusion: The HABC-Monitor demonstrates good reliability and validity as a clinically practical multidimensional tool for monitoring symptoms of dementia through the informal caregiver.Keywords: dementia, symptoms, monitor, validation, cognitive impairment, memory care
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...
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.
Kokorelias, Kristina M; Ryan, Ellen B; Elliot, Gail
Regression to mother tongue is common in those with dementia. In two long-term care facilities, we explored the use of bilinguals' two languages for five older adults with mild-moderate dementia who have begun to regress to Greek. We also examined the role of Montessori DementiAbility Methods: The Montessori Way-based English language activities in fostering conversational use of English. Over 10 sessions, participants' vocabulary or grammatical structure in English did not improve. However, four of the five participants were able to maintain a conversation in English for longer periods of time. This study contributes to strategies for optimizing meaningful conversation for bilingual long-term care residents with dementia. Moreover, the data suggest a change in the policy and practice for dementia care so that there are more opportunities for residents to speak English in non-English mother-tongue facilities. Greater attention to the specific language needs of bilinguals in English-dominant settings would also be advisable.
Lužný, Jan; Ivanová, Kateřina; Juríčková, Lubica
Non-adherence to treatment in seniors with dementia is a frequent and potentially dangerous phenomenon in routine clinical practice which might lead to the inappropriate treatment of a patient, including the risk of intoxication. There might be different causes of non-adherence in patients with dementia: memory impairment, sensory disturbances, limitations in mobility, economical reasons limiting access to health care and medication. Non-adherence leads to serious clinical consequences as well as being a challenge for public health. to estimate prevalence of non-adherence in seniors with dementia and to study correlation between cognitive decline and non-adherence. Prospective study, analyzing medical records of seniors with dementia admitted to the inpatient psychogeriatric ward in the Kromeriz mental hospital from January 2010 to January 2011. Cognitive decline measured by MMSE, prevalence of Non-adherence to treatment and reasons for patient Non-adherence were studied. Non-adherence to any treatment was detected in 31.3% of seniors; memory impairment was the most common cause of non-adherence to treatment. In conclusion, non-adherence to treatment in the studied group of seniors with dementia correlates with the severity of cognitive impairment - a higher cognitive decline correlates with a higher risk of non-adherence to treatment.
Full Text Available Background: Non-adherence to treatment in seniors with dementia is a frequent and potentially dangerous phenomenon in routine clinical practice which might lead to the inappropriate treatment of a patient, including the risk of intoxication. There might be different causes of non-adherence in patients with dementia: memory impairment, sensory disturbances, limitations in mobility, economical reasons limiting access to health care and medication. Non-adherence leads to serious clinical consequences as well as being a challenge for public health. Aim: to estimate prevalence of non-adherence in seniors with dementia and to study correlation between cognitive decline and non-adherence. Subjects and Methods: Prospective study, analyzing medical records of seniors with dementia admitted to the inpatient psychogeriatric ward in the Kromeriz mental hospital from January 2010 to January 2011. Cognitive decline measured by MMSE, prevalence of Non-adherence to treatment and reasons for patient Non-adherence were studied. Results: Non-adherence to any treatment was detected in 31.3% of seniors; memory impairment was the most common cause of non-adherence to treatment. Conclusion: In conclusion, non-adherence to treatment in the studied group of seniors with dementia correlates with the severity of cognitive impairment – a higher cognitive decline correlates with a higher risk of non-adherence to treatment.
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.
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.
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
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...
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
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.
... aging. Many different diseases can cause dementia, including Alzheimer's disease and stroke. Drugs are available to treat some of these diseases. While these drugs cannot cure dementia or repair brain damage, they may improve ...
... continue to look for new genes that may be responsible for the development of Alzheimer’s disease and other forms of dementia. Several research projects hope to identify dementia biomarkers (measurable biological signs ...
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
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.
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
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.
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.
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. ...
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.
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.
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
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.
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.
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.
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.
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
Mitchell, Gary; Agnelli, Joanne
Distress is one of the most common clinical manifestations associated with dementia. Pharmacological intervention may be appropriate in managing distress in some people. However, best practice guidelines advocate non-pharmacological interventions as the preferred first-line treatment. The use of non-pharmacological interventions encourages healthcare professionals to be more person-centred in their approach, while considering the causes of distress. This article provides healthcare professionals with an overview of some of the non-pharmacological approaches that can assist in alleviating distress for people living with dementia including: reminiscence therapy, reality orientation, validation therapy, music therapy, horticultural therapy, doll therapy and pet therapy. It provides a summary of their use in clinical practice and links to the relevant literature.
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.
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
, communication, knowledge regarding dementia, aspects of person centred care, system factors and the multidisciplinary team were consistently and frequently cited. Small group education which is flexible, individualized, practical and case based was sought. Conclusion The effectiveness and sustainability of an educational intervention based on these findings needs to be tested. In addition, future interventions should focus on supporting cultural change to facilitate sustainable improvements in care.
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.
ter Meulen, Ruud; Wright, Katharine
According to Bayertz the core meaning of solidarity is the perception of mutual obligations between the members of a community. This definition leaves open the various ways solidarity is perceived by individuals in different communities and how it manifests itself in a particular community. This paper explores solidarity as manifested in the context of families in respect of caregiving for a family member who has become dependent because of disease or illness. Though family caregiving is based on the same perception of mutual obligation as the solidarity that supports welfare arrangements in society, the manifestation of solidarity in families is different. Solidarity that underpins welfare arrangements is based on a perception of mutual obligation towards an anonymous dependent other and is enforced by the government. Solidarity in families is directed towards a concrete other and is based on free choice, albeit often accompanied by a strong sense of personal duty. In this paper we try to distinguish between solidarity as a sociological concept and as a moral concept. An important moral element of solidarity, as expressed in families, is the need for recognition of family caregivers, not only of their concrete practical efforts, but also of their own identity as caregivers and as individuals. We illustrate this argument by referring to examples in the Nuffield Council on Bioethics report Dementia: ethical issues, about the experiences of family caregivers in dementia care and the importance for them of recognition of their role. © 2012 Blackwell Publishing Ltd.
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.
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
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
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.
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.
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
Kelly, I.; Butler, M.-L.; Ciblis, A.; McNulty, J.P.
Introduction: Neuroimaging plays an essential supportive role in the diagnosis of dementia, assisting in establishing the dementia subtype(s). This has significant value in both treatment and care decisions and has important implications for prognosis. This study aims to explore the development and nature of neuroimaging protocols currently used in the assessment of dementia and Alzheimer's disease (AD). Methods: An online questionnaire was designed and distributed to lead radiography personnel working in computed tomography (CT), magnetic resonance imaging (MRI) and positron emission tomography (PET) departments (n = 94) in both hospital-based and out-patient imaging centres in the Republic of Ireland. Results: Response rates for each modality ranged from 42 to 44%. CT, MRI, and PET were used to specifically diagnose dementia or AD by 43%, 40% and 50% of responding centres respectively. Of these, dementia-specific neuroimaging protocols were utilised in 33%, 50% and 100% of CT, MRI and PET centres respectively, with the remainder using either standard or other non-specific protocols. Both radiologists and clinical specialist radiographers participated in the development of the majority of protocols. The Royal College of Radiologists (RCR) guidelines were most commonly referenced as informing protocol development, however, none of the MRI respondents were able to identify any guidelines used to inform MR protocol development. Conclusion: Currently there is no consensus in Ireland on optimal dementia/AD neuroimaging protocols, particularly for PET and MRI. Similarly the use of validated and published guidelines to inform protocols is not universal. - Highlights: • We examined the nature of neuroimaging protocols for dementia and Alzheimer's disease in Ireland. • Dementia or Alzheimer's disease-specific protocols were used by between 33 and 100% of centres depending on modality. • Stated dementia-specific protocols were identical for CT whereas
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.
This article describes the ways in which practice development can aid Nurse Managers to enhance both efficiency and effectiveness, focussing particularly on the care of older people with delerium and dementia. Practitioners caring for this group of patients in acute general hospitals need specialist skills, particularly skills in working with the unusual ('challenging') behaviours that these patients often exhibit. These skills are rarely present at the point of registration but practice development techniques can facilitate the acquisition of appropriate skills with resultant benefits for both patients and organization. The study contains an outline of the ways in which a practice development approach can be delivered and appraised: the theories are outlined, strategies for delivery of the techniques are described and methods of evaluation are suggested. These theories and techniques are being applied in a project in Portsmouth called 'Rise to the Challenge', which has the specific aim of improving the care of people with delerium and dementia in an acute hospital setting. This project is currently running and will be evaluated in the summer of 2008.
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.
Ketelaar, Nicole A B M; Jukema, Jan S; van Bemmel, Marlies; Adriaansen, Marian J M; Smits, Carolien H M
This practice based explorative study aims to provide insight into the ways in which case managers shape and fill up the evaluation phase of their support of the informal care network of persons with dementia. A combination of quantitative and qualitative research methods were used. A group of 57 case managers of persons with dementia in three different organisational networks took part in this study. Results from the quantitative and qualitative data are organized into four themes: (1) attitude towards evaluation, (2) forms of evaluation, (3) implementation of evaluation and (4) content of evaluation. There are different ways in shaping evaluation and the content of it. The importance of interim and final evaluation is recognized, but is difficult to realize in a methodical way. Barriers experienced by the case managers include various factors associated both with clients as professionals. Case managers evaluate continuously and in an informal way to assess whether the extent of their assistance is meeting the needs of the client and informal network. Case managers do not use systematic evaluation to measure the quality of care they offer to persons with dementia and their caregivers. The findings demand a discussion on the level of clients, as well as on the professional and societal level about the way case managers should evaluate their support.
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.
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.
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.
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.
... Poor judgment and loss of ability to recognize danger Using the wrong word, not pronouncing words correctly, ... disease and other dementias. In: Goldman L, Schafer AI, eds. Goldman-Cecil Medicine . 25th ed. Philadelphia, PA: ...
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.
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.
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.
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.
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.
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.
This patient is suffering from dementia, which is a ... Common symptoms of dementia: • difficulty with .... activities, help patients to rid themselves of ... Avoid changes in daily routine.6. In addition ... Referral to a physiotherapist for an appropriate ...
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.
Heinrich, S; Laporte Uribe, F; Roes, M; Hoffmann, W; Thyrian, J R; Wolf-Ostermann, K; Holle, B
Stakeholders involved in community dementia support services often work on their own and without coordination with other services. These circumstances can result in a lack of information and support for people with dementia and their family caregivers at home. To increase the coordination between existing support services, so-called 'Dementia Care Networks' (DCNs) have been established. Most of the tasks that are performed in DCNs are based on communication strategies. Therefore, knowledge management (KM) is a key process in these networks. However, few studies have focused on this topic. This study attempted to evaluate KM strategies in DCNs across Germany as part of the DemNet-D study. A qualitative interview study design was used. Qualitative data were collected during single and group interviews with key persons associated with thirteen DCNs. Interviews were audiotaped and transcribed, and a structured content analysis was conducted. The framework for the analysis was derived from a KM model. Information dissemination strategies for people with dementia and their informal caregivers based on actively established contacts appear to be more successful than passive strategies. General practitioners often play a key role as external gatekeepers in initiating contact between a network and a person affected by dementia. In this context, case managers can help integrate external stakeholders, such as general practitioners or pharmacists, into DCNs using different KM strategies. The systematic development of common objectives under an agency-neutral leadership seems to be an important aspect of successful KM within DCNs. The findings reported here can help DCNs optimize their KM strategies for generating tailored information and support services for people with dementia living at home and their family caregivers. In particular, the identified potential knowledge distribution barriers and facilitators will be of practical use to DCN stakeholders. Copyright © 2015 The
Karen Harrison Dening
.45; tube feeding; k = 0.20; PABAK = -0.22. However, both PWD and carers showed marked uncertainty about their preferences for end of life treatment choices. Relationship quality, carer distress and burden had no influence on agreement.This study is the first to have used the LSPQ with PWD in the UK to consider treatment options in hypothetical illness scenarios. Key finding are that family carers had a low to moderate agreement with PWD on preferences for end of life treatment. This underscores how planning for care at the end of life is beset with uncertainty, even when the carer and PWD perceive the care-giving/receiving relationship is good. Families affected by dementia may benefit from early and ongoing practical and emotional support to prepare for potential changes and aid decision making in the context of the realities of care towards the end of life.
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.
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
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.
Dröes, R M; Chattat, R; Diaz, A; Gove, D; Graff, M; Murphy, K; Verbeek, H; Vernooij-Dassen, M; Clare, L; Johannessen, A; Roes, M; Verhey, F; Charras, K
Because the pattern of illnesses changes in an aging population and many people manage to live well with chronic diseases, a group of health care professionals recently proposed reformulating the static WHO definition of health towards a dynamic one based on the ability to physically, mentally and socially adapt and self-manage. This paper is the result of a collaborative action of the INTERDEM Social Health Taskforce to operationalize this new health concept for people with dementia, more specifically the social domain, and to formulate directions for research and practice to promote social health in dementia. Based on the expertise of the Social Health Taskforce members (N = 54) three groups were formed that worked on operationalizing the three social health dimensions described by Huber et al.: (1) capacity to fulfil potential and obligations; (2) ability to manage life with some degree of independence; (3) participation in social activities. For each dimension also influencing factors, effective interventions and knowledge gaps were inventoried. After a consensus meeting, the operationalizations of the dimensions were reviewed by the European Working Group of People with Dementia (EWGPWD). The social health dimensions could be well operationalized for people with dementia and are assessed as very relevant according to the Social Health Taskforce and EWGPWD. Personal (e.g. sense of coherence, competencies), disease-related (e.g. severity of cognitive impairments, comorbidity), social (support from network, stigma) and environmental factors (e.g. enabling design, accessibility) that can influence the person with dementia's social health and many interventions promoting social health were identified. A consensus-based operationalization of social health in dementia is proposed, and factors that can influence, and interventions that improve, social health in dementia identified. Recommendations are made for research and practice.
Hewer, Walter; Thomas, Christine
Psychiatric symptoms in dementia and delirium are associated with a substantially reduced quality of life of patients and their families and often challenging for professionals. Pharmacoepidemiological surveys have shown that, in particular, patients living in nursing homes receive prescriptions of psychotropic agents in significant higher frequency than recommended by current guidelines. This article focuses on a critical appraisal of this gap from the point of view of German healthcare services. Narrative review with special reference to the German dementia guideline from 2016 and recently published practice guidelines for delirium in old age in German and English language. The indications for use of psychotropic agents, especially antipsychotics, are defined narrowly in the German dementia guideline. According to this guideline for several psychopathological symptoms evidence based recommendations cannot be given, currently. For delirium several practice guidelines related to different treatment settings have been published recently. Comparable to the German dementia guideline they recommend general medical interventions and nonpharmacological treatment as first line measures and the use of psychotropic agents only under certain conditions. These guidelines differ to some extent regarding the strength of recommendation for psychopharmacological treatment. The guidelines discussed here advocate well-founded a cautious prescription of psychotropic agents in patients with dementia and delirium. This contrasts to everyday practice which is characterized by significantly higher prescription rates. This gap may explained partially by a lack of evidence-based recommendations regarding certain psychopathological symptoms. Most notably, however, epidemiological data disclose an unacceptable rate of hazardous overtreatment with psychotropic agents, especially in long-term care of persons with dementia. In this situation counteractive measures by consequent implementation
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.
Nardone, Raffaele; Golaszewski, Stefan; Trinka, Eugen
Transcranial magnetic stimulation (TMS) has been used extensively to characterize motor system pathophysiology in Alzheimer's disease (AD) and other forms of dementia, as well to monitor the effects of certain pharmacological agents. Among the studies focusing on motor cortical excitability measures, the most consistent finding is a significant reduction of short-latency afferent inhibition (SAI) in AD and other forms of dementia in which the cholinergic system is affected, such as dementia with Lewy bodies. SAI evaluation may thus provide a reliable biomarker of cortical cholinergic dysfunction in dementias. Moreover, most TMS studies have demonstrated cortical hyperexcitability and asymptomatic motor cortex functional reorganization in the early stages of the disease. Integrated approaches utilizing TMS together with high-density EEG have indicated impaired cortical plasticity and functional connectivity across different neural networks in AD. Paired associative stimulation-induced plasticity has also been found to be abnormal in patients with AD. The development of novel noninvasive methods of brain stimulation, in particular repetitive TMS (rTMS) and transcranial direct current stimulation (tDCS), has increased the interest in neuromodulatory techniques as potential therapeutic tools for cognitive rehabilitation in AD. Preliminary studies have revealed that rTMS and tDCS can induce beneficial effects on specific cognitive functions in AD. Future studies are warranted to replicate and extend the initial findings. © 2013 Elsevier B.V. All rights reserved.
Bagheri, Nasser; Wangdi, Kinley; Cherbuin, Nicolas; Anstey, Kaarin J
We have a poor understanding of whether dementia clusters geographically, how this occurs, and how dementia may relate to socio-demographic factors. To shed light on these important questions, this study aimed to compute a dementia risk score for individuals to assess spatial variation of dementia risk, identify significant clusters (hotspots), and explore their association with socioeconomic status. We used clinical records from 16 general practices (468 Statistical Area level 1 s, N = 14,746) from the city of west Adelaide, Australia for the duration of 1 January 2012 to 31 December 2014. Dementia risk was estimated using The Australian National University-Alzheimer's Disease Risk Index. Hotspot analyses were applied to examine potential clusters in dementia risk at small area level. Significant hotspots were observed in eastern and southern areas while coldspots were observed in the western area within the study perimeter. Additionally, significant hotspots were observed in low socio-economic communities. We found dementia risk scores increased with age, sex (female), high cholesterol, no physical activity, living alone (widow, divorced, separated, or never married), and co-morbidities such as diabetes and depression. Similarly, smoking was associated with a lower dementia risk score. The identification of dementia risk clusters may provide insight into possible geographical variations in risk factors for dementia and quantify these risks at the community level. As such, this research may enable policy makers to tailor early prevention strategies to the correct individuals within their precise locations.
ARÉVALO SÁNCHEZ, ELIZABETH
The purposeofthisresearch istovalue thecarepractices that mothers perform on themselves and on the baby to whom she is going to give birth. 150 pregnant women that go to the Centro Operativo Local Engativá medical facility, registered on project 7317: "Preganant Families: healthy and desired babies of the Administrative DepartmentofSocialWellbeing", using a quantitative and descriptive methodology. We applied the "Instrument to value those care practices that are performed on themselves and o...
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
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.
O'Malley, Mary; Innes, Anthea; Wiener, Jan M
Alzheimer's disease results in marked declines in navigation skills that are particularly pronounced in unfamiliar environments. However, many people with Alzheimer's disease eventually face the challenge of having to learn their way around unfamiliar environments when moving into assisted living or care-homes. People with Alzheimer's disease would have an easier transition moving to new residences if these larger, and often more institutional, environments were designed to compensate for decreasing orientation skills. However, few existing dementia friendly design guidelines specifically address orientation and wayfinding. Those that do are often based on custom, practice or intuition and not well integrated with psychological and neuroscientific knowledge or navigation research, therefore often remaining unspecific. This paper discusses current dementia friendly design guidelines, reports findings from psychological and neuropsychological experiments on navigation and evaluates their potential for informing design guidelines that decrease spatial disorientation for people with dementia.
Braden, Barbara A; Gaspar, Phyllis M
Dementia is exhibited by both emotional and physical states such as agitation. Chemical restraints, often used for agitated behaviors, are not always effective and produce untoward effects. Baby doll therapy is a nonpharmacologic therapy that can affect agitated behavior in dementia patients, yet a protocol for the therapy did not exist. An implementation protocol for doll therapy for those with dementia was developed and implemented with 16 residents in a dementia care center. Outcomes were measurements of the impact of the dolls on six areas of the resident's behavior and their reactions to the doll. Participants had an increase in level of happiness, activity/liveliness, interaction with staff and others, and ease of giving care. There was also a reduction in the level of anxiety. The increase in happiness was a statistically significant outcome. Baby doll therapy is an effective nonpharmacological approach for improving the well-being of patients with moderate to severe dementia. © The Author(s) 2014.
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...
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
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,
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…
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
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
cultural change interventions had a greater effect on improving the quality of life for people with dementia (SMD: 0.191; 95% CI: 0.079 to 0.302.Conclusion: This systematic review and meta-analysis provided evidence for person-centered care in clinical practice for people with dementia. Person-centered care interventions were shown to reduce agitation, neuropsychiatric symptoms, and depression and to improve the quality of life. Person-centered care interventions can effectively reduce agitation for a short term using intensive and activity-based intervention. However, an educational strategy that promotes learning and skill development of internal care staff is needed to enhance patient’s quality of life and to ensure the sustainability of the effects of behavioral problems. The feasibility and effectiveness of the intervention, the severity of patient disease, and intervention type and duration should be considered as part of an intervention design. Keywords: dementia, meta-analysis, patient-centered care, person-centered care, neuropsychiatric symptoms, systematic review
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
... Complementary Health Practices for Cognitive Function, Dementia, and Alzheimer’s Disease Share: Many people, particularly older individuals, worry ... it is the first sign of dementia or Alzheimer’s disease . In fact, forgetfulness has many causes. It ...
Butler, Rob; Radhakrishnan, Raghavakurup
Dementia is characterised by chronic, global, non-reversible deterioration in memory, executive function, and personality. Speech and motor function may also be impaired. We conducted a systematic review and aimed to answer the following clinical questions: What are the effects of treatments on cognitive symptoms of dementia (Alzheimer's, Lewy body, or vascular)? What are the effects of treatments on behavioural and psychological symptoms of dementia (Alzheimer's, Lewy body, or vascular)? We searched: Medline, Embase, The Cochrane Library, and other important databases up to July 2011 (Clinical Evidence reviews are updated periodically; please check our website for the most up-to-date version of this review). We included harms alerts from relevant organisations such as the US Food and Drug Administration (FDA) and the UK Medicines and Healthcare products Regulatory Agency (MHRA). We found 49 systematic reviews, RCTs, or observational studies that met our inclusion criteria. We performed a GRADE evaluation of the quality of evidence for interventions. In this systematic review, we present information relating to the effectiveness and safety of the following interventions: acetylcholinesterase inhibitors (donepezil, galantamine, rivastigmine), antidepressants (clomipramine, fluoxetine, imipramine, sertraline), antipsychotics (haloperidol, olanzapine, quetiapine, risperidone), aromatherapy, benzodiazepines (diazepam, lorazepam), cognitive behavioural therapy (CBT), cognitive stimulation, exercise, ginkgo biloba, memantine, mood stabilisers (carbamazepine, sodium valproate/valproic acid), music therapy, non-steroidal anti-inflammatory drugs (NSAIDs), omega 3 (fish oil), reminiscence therapy, and statins.
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.
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.
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.
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.
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.
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
Skomakerstuen Ødbehr, Liv; Kvigne, Kari; Hauge, Solveig; Danbolt, Lars Johan
To investigate nurses' attitudes towards and accommodations of patients' expressions of religiosity and faith in dementia care. Holistic care for people with dementia addresses patients' religiosity and faith. Nurses' accommodations of patients' religiosity have not been studied extensively even though nurses report a lack of experience and knowledge regarding religious care. This study has a qualitative research design. Eight focus group interviews with 16 nurses and 15 care workers in four Norwegian nursing homes were conducted from June 2011-January 2012. The interview text was analysed using van Manen's hermeneutic-phenomenological approach and Lindseth and Nordberg's structural analysis. The following three main themes reflected the nurses' and care workers' attitudes towards and accommodations of patients' expressions of religiosity and faith: (i) embarrassment vs. comfort, described in the sub-themes 'feelings of embarrassment' and 'religiosity as a private matter'; (ii) unknown religious practice vs. known religious practice, described as 'religious practice that was scary' or 'religious practice that was recognizable'; and (iii) death vs. life, described as 'difficulty talking about death 'or 'focusing on life and the quality of life'. Nurses and care workers were uncertain and lacked knowledge of the patients' expressions of religiosity and faith in terms of both their substance and their function. Nurses struggled with ambivalent feelings about patients' religious expressions and with unclear understanding of the significance of religiosity. These challenges compromised person-centred and holistic care on several occasions. © 2014 John Wiley & Sons Ltd.
Wang, Donna S.
Dementia can be debilitating not only for the older adult suffering from memory loss and confusion, but for family members as well. Understanding caregiving for ethnic minorities is critical. In Asian communities, addressing dementia and other mental health issues can be compounded by cultural factors such as perceptions of mental health and…
Teodorczuk, Andrew; Mukaetova-Ladinska, Elizabeta; Corbett, Sally; Welfare, Mark
Older patients with dementia and delirium receive suboptimal hospital care. Policy calls for more effective education to address this though there is little consensus on what this entails. The purpose of this clarification study is to explore how practice gaps are constructed in relation to managing the confused hospitalised older patient. The intent is to inform educational processes in the work-place beyond traditional approaches such as training. Adopting grounded theory as a research method and working within a social constructionist paradigm we explored the practice gaps of 15 healthcare professionals by interview and conducted five focus groups with patients, carers and Liaison mental health professionals. Data were thematically analysed by constant comparison and theoretical sampling was undertaken until saturation reached. Categories were identified and pragmatic concepts developed grounded within the data. Findings were then further analysed using cultural historical activity theory as a deductive lens. Practice gaps in relation to managing the confused older patient are determined by factors operating at individual (knowledge and skill gaps, personal philosophy, task based practice), team (leadership, time and ward environmental factors) and organisational (power relationships, dominance of medical model, fragmentation of care services) levels. Conceptually, practice appeared to be influenced by socio-cultural ward factors and compounded by a failure to join up existing "patient" knowledge amongst professionals. Applying cultural historical activity theory to further illuminate the findings, the central object is defined as learning about the patient and the mediating artifacts are the care relationships. The overarching medical dominance emerges as an important cultural historical factor at play and staff rules and divisions of labour are exposed. Lastly key contradictions and tensions in the system that work against learning about the patient are
Bayen, Eleonore; Jacquemot, Julien; Netscher, George; Agrawal, Pulkit; Tabb Noyce, Lynn; Bayen, Alexandre
Falls of individuals with dementia are frequent, dangerous, and costly. Early detection and access to the history of a fall is crucial for efficient care and secondary prevention in cognitively impaired individuals. However, most falls remain unwitnessed events. Furthermore, understanding why and how a fall occurred is a challenge. Video capture and secure transmission of real-world falls thus stands as a promising assistive tool. The objective of this study was to analyze how continuous video monitoring and review of falls of individuals with dementia can support better quality of care. A pilot observational study (July-September 2016) was carried out in a Californian memory care facility. Falls were video-captured (24×7), thanks to 43 wall-mounted cameras (deployed in all common areas and in 10 out of 40 private bedrooms of consenting residents and families). Video review was provided to facility staff, thanks to a customized mobile device app. The outcome measures were the count of residents' falls happening in the video-covered areas, the acceptability of video recording, the analysis of video review, and video replay possibilities for care practice. Over 3 months, 16 falls were video-captured. A drop in fall rate was observed in the last month of the study. Acceptability was good. Video review enabled screening for the severity of falls and fall-related injuries. Video replay enabled identifying cognitive-behavioral deficiencies and environmental circumstances contributing to the fall. This allowed for secondary prevention in high-risk multi-faller individuals and for updated facility care policies regarding a safer living environment for all residents. Video monitoring offers high potential to support conventional care in memory care facilities. ©Eleonore Bayen, Julien Jacquemot, George Netscher, Pulkit Agrawal, Lynn Tabb Noyce, Alexandre Bayen. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 17.10.2017.
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.
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.
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.
Waldorff, Frans Boch; Møller, S
OBJECTIVE: To examine GPs' self-reported basic diagnostic evaluation of dementia according to the recommendations in multidisciplinary consensus guidelines and to analyse explanatory factors for GP performance. DESIGN: Postal questionnaire study, spring 1998. SETTING: General practice in Denmark...
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.
Ridder, Hanne Mette Ochsner; Stige, Brynjulf
Agitation is a major challenge within institutions of care for the elderly. The effect of music therapy on agitation and quality of live is investigated in a practice-relevant research combined with a Randomized Controlled Trial and multicentre research. The research protocol is developed...... in dialogue with practicing music therapists....
Halek, Margareta; Holle, Daniela; Bartholomeyczik, Sabine
One of the most difficult issues for care staff is the manifestation of challenging behaviour among residents with dementia. The first step in managing this type of behaviour is analysing its triggers. A structured assessment instrument can facilitate this process and may improve carers' management of the situation. This paper describes the development of an instrument designed for this purpose and an evaluation of its content validity and its feasibility and practicability in nursing homes. The development process and evaluation of the content validity were based on Lynn's methodology (1998). A literature review (steps 1 + 2) provided the theoretical framework for the instrument and for item formation. Ten experts (step 3) evaluated the first version of the instrument (the Innovative dementia-oriented Assessment (IdA®)) regarding its relevance, clarity, meaningfulness and completeness; content validity indices at the scale-level (S-CVI) and item-level (I-CVI) were calculated. Health care workers (step 4) evaluated the second version in a workshop. Finally, the instrument was introduced to 17 units in 11 nursing homes in a field study (step 5), and 60 care staff members assessed its practicability and feasibility. The IdA® used the need-driven dementia-compromised behaviour (NDB) model as a theoretical framework. The literature review and expert-based panel supported the content validity of the IdA®. At the item level, 77% of the ratings had a CVI greater than or equal to 0.78. The majority of the question-ratings (84%, n = 154) and answer-ratings (69%, n = 122) showed valid results, with none below 0.50. The health care workers confirmed the understandability, completeness and plausibility of the IdA®. Steps 3 and 4 led to further item clarification. The carers in the study considered the instrument helpful for reflecting challenging behaviour and beneficial for the care of residents with dementia. Negative ratings referred to the time required and the
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.
Brown, Ellen Leslie; Raue, Patrick J; Halpert, Karen
Depression and dementia are the two most common psychiatric syndromes in the older adult population. Depression in older adults with and without dementia often goes unrecognized and untreated. The current guideline recommends a three-step procedure that can be used across health care settings to screen for the presence of depressive symptoms. Implementation of the evidence-based guideline requires administration of the Mini-Mental State Examination and either the Geriatric Depression Scale Short Form or Cornell Scale for Depression in Dementia, depending on level of cognitive functioning. The algorithm provided is designed to be used by nurses, physicians, and social workers for the purpose of depression screening in older adults with dementia. Detection of depression in individuals with dementia is hindered by a lack of a validated, brief screening tool. More research is needed on the use of such screenings among older adults with cognitive impairment. Copyright 2015, SLACK Incorporated.
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.
Surr, Claire A; Gates, Cara; Irving, Donna; Oyebode, Jan; Smith, Sarah Jane; Parveen, Sahdia; Drury, Michelle; Dennison, Alison
Ensuring an informed and effective dementia workforce is of international concern; however, there remains limited understanding of how this can be achieved. This review aimed to identify features of effective dementia educational programs. Critical interpretive synthesis underpinned by Kirkpatrick's return on investment model was applied. One hundred and fifty-two papers of variable quality were included. Common features of more efficacious educational programs included the need for educational programs to be relevant to participants' role and experience, involve active face-to-face participation, underpin practice-based learning with theory, be delivered by an experienced facilitator, have a total duration of at least 8 hours with individual sessions of 90 minutes or more, support application of learning in practice, and provide a structured tool or guideline to guide care practice. Further robust research is required to develop the evidence base; however, the findings of this review have relevance for all working in workforce education.
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
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.
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...
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
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.
Jh, Österholm; L-C, Hydén
The overall aim of the study was to investigate if and how persons with dementia were able to take part in negotiations for formal support, as cases of citizenship as practice The transcripts used for analysis were from 11 assessment meetings conducted in Sweden, in which the formal applicant was a person with dementia. The findings suggest that the actual participation of persons with dementia in assessment meetings varies. Communication problems were found in the meetings to different degrees and were dealt with differently and with various consequences. For those persons with dementia contributing at the same levels as the other participants, there was an attempt at mutual understanding. For those making fewer contributions, the other interlocutors took over the initiative and thus affected the practice of citizenship by persons with dementia in a negative way. The practice of citizenship is situation based and varies depending on all participants. When the person with dementia is able to participate in the conversation, social workers can facilitate for them to overcome communication problems by giving them more time and signaling acceptance. If the person with dementia has great problems in participating, the other participants can find different strategies to at least involve her or him in the conversation. © The Author(s) 2014.
O'Sullivan, Grace; Hocking, Clare; McPherson, Kathryn
Objective To develop, deliver, and evaluate dementia-specific training designed to inform service delivery by enhancing the knowledge of community-based service providers. Methods This exploratory qualitative study used an interdisciplinary, interuniversity team approach to develop and deliver dementia-specific training. Participants included management, care staff, and clients from three organizations funded to provide services in the community. Data on the acceptability, applicability, and perceived outcomes of the training were gathered through focus group discussions and individual interviews. Transcripts were analyzed to generate open codes which were clustered into themes and sub-themes addressing the content, delivery, and value of the training. Findings Staff valued up-to-date knowledge and "real stories" grounded in practice. Clients welcomed the strengths-based approach. Contractual obligations impact on the application of knowledge in practice. Implications The capacity to implement new knowledge may be limited by the legislative policies which frame service provision, to the detriment of service users.
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.
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.
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…
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.
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
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.
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.
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. One hundred sixteen general practices in the Netherlands. Community-dwelling individuals aged 70 to 78 (N = 2,994). Nurse-led multidomain intervention targeting cardiovascular risk factors to prevent dementia. The associations between participant baseline sociodemographic (age, sex, education), clinical (medical history, disability, cardiovascular risk), neuropsychiatric (depressive symptoms (Geriatric Depression Scale-15), and cognitive (Mini-Mental State Examination)) characteristics and dropout from the trial and nonadherence to the trial intervention were explored using multilevel logistic regression models. Older age, poorer cognitive function, more symptoms of depression, and greater disability were the most important determinants of dropout of older people. The presence of cardiovascular risk factors was not associated with dropout but was associated with nonadherence. Being overweight was a risk factor for nonadherence, whereas people with high blood pressure or a low level of physical exercise adhered better to the intervention. The association between poorer cognitive function and symptoms of depression and dropout was stronger in the control group than in the intervention group, and vice versa for increased disability. In a large dementia prevention trial with 6-year follow-up, dropout was associated with older age, poorer cognitive function, symptoms of depression, and disability at baseline. These findings can help to guide the design of future dementia prevention trials in older adults. The associations found between cardiovascular risk factors and nonadherence need to be confirmed in other older populations receiving cardiovascular prevention interventions
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.
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.
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
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.
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.
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
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.
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.
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.
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...
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.
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...
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.
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.
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
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
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.
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.
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.
Jarrott, Shannon E; Gigliotti, Christina M
Engaging persons with dementia in meaningful activities supports well-being; however, care staff are challenged to implement age- and ability-appropriate activities in a group setting. We compared a randomly assigned treatment group, who received horticultural therapy-based (HT-based) programming to a comparison group, who engaged in traditional activities (TA) programming, on engagement and affect. Horticultural therapy-based programming was implemented twice weekly at 4 treatment sites for 6 weeks, while regular TA were observed at comparison sites. Results revealed no differences between groups on affective domains. Levels of adaptive behavior differed between the groups, with the treatment group demonstrating higher levels of active, passive, and other engagement and the comparison group demonstrating higher levels of self-engagement. Our results highlight the value of HT-based programs and the importance of simultaneously capturing participants' affective and behavioral responses. Theoretical and practical considerations about the facilitation of and context in which the programming occurs are discussed.
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...
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
Mushi, Declare; Rongai, Amen; Paddick, Stella-Maria; Dotchin, Catherine; Mtuya, Chauka; Walker, Richard
With the increasing number of people surviving into old age in Africa, dementia is becoming an important public health problem. Understanding the social dynamics of dementia in resource-poor settings is critical for developing effective interventions. We explored the socio-cultural beliefs surrounding dementia and the life experience of people with dementia (PWD) and their caregivers in the Hai District of Kilimanjaro, Tanzania. Cross-sectional qualitative design. Forty one PWD were purposively sampled from the Hai District of Kilimanjaro. Twenty five paired interviews with PWD and with caregivers, and 16 with caregivers alone, were conducted. Interviews were tape recorded, transcribed verbatim and analyzed using content analysis approach. Forty one PWD (26 females), aged 70 years and older, were recruited but due to speech difficulties only 25 participated in the interviews. Married were 13, widow in 22 and widower 6. The majority, 33/41 were illiterate. PWD and carers perceived memory problems as a normal part of ageing. Dementia was commonly referred as "ugonjwa wa uzeeni" (disease of old people) or memory loss disease. The majority of PWD 13/12 and carers 7/16 did not know what dementia is or what causes it. Dementia was felt to be associated with stroke, high blood pressure, diabetes, old age, curse/witchcraft and life stress. Half of the participants had used modern care and alternative care such as herbs, prayers or traditional healers. Caregivers complained about the burden of caring for PWD and suggested that community organizations should be involved in addressing the problem. Knowledge about dementia is low and the symptoms are accepted as a problem of old age. PWD and carers demonstrate pluralistic behaviour in seeking help from modern care, prayers and traditional healers. The disease adds significant burden to family members. Family and caregivers need more education on early recognition of symptoms and cost effective management of dementia at family
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
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.
Psychosocial approaches to the management of behavioural and psychological symptoms of dementia have received much support in the scientific literature. The following paper focuses on cognitive behaviour therapy as a valid framework in assessing and treating people with behavioural and psychological symptoms of dementia. The importance of identifying symptoms of depression and anxiety is emphasized, as cognitive behaviour therapy has been shown to be an effective intervention for these conditions in older adults. Modifications of cognitive behaviour therapy for those with dementia are discussed based on available evidence, with emphasis on incorporating nursing home staff in treatment programs and focusing on behavioural elements of cognitive behaviour therapy such as activity scheduling. The paper concludes with suggestions regarding how to incorporate and promote the use of cognitive behaviour therapy in dementia care settings.
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
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.
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.
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.
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.
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.
... Kids and Teens Pregnancy and Childbirth Women Men Seniors Your Health Resources Healthcare Management End-of-Life Issues Insurance & Bills Self Care Working With Your Doctor Drugs, Procedures & Devices Over-the- ...
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.
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
following dissemination of HIV into lymphoid tissues and cells.3. The blood brain barrier ... Key words: Dementia; HIV; HAART; South Africa. Received: 05-10-2009 ..... auditory verbal learning test for verbal memory, the grooved pegboard test for ... psychomotor speed, and the color trails tests 1 and 2 for executive function.
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.
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.
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.
Waldorff, Frans Boch; Vogel, Asmus Mejling; Siersma, Volkert Dirk
Many older patients in general practice have subjective memory complaints (SMC); however, not all share this information with their general practitioner (GP). The association between SMC and future cognitive decline or dementia is not clear, especially in a general practice population. The aim...
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.
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
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
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.
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
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.
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.
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
Stokes, Jonathan; Checkland, Kath; Kristensen, Søren Rud
'Integrated care' is pitched as the solution to current health system challenges. In the literature, what integrated care actually involves is complex and contested. Multi-disciplinary team case management is frequently the primary focus of integrated care when implemented internationally. We examine the practical application of integrated care in the NHS in England to exemplify the prevalence of the case management focus. We look at the evidence for effectiveness of multi-disciplinary team case management, for the focus on high-risk groups and for integrated care more generally. We suggest realistic expectations of what integration of care alone can achieve and additional research questions. © The Author(s) 2016.
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
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...
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.
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
Melhuish, Ruth; Beuzeboc, Catherine; Guzmán, Azucena
Background There is an increasing focus on providing effective psychosocial interventions to improve quality of life in dementia care. This study aims to explore the attitudes and perceptions of staff who participated regularly in Music Therapy (MT) and Dance Movement Therapy (DMT) groups for residents with dementia in a nursing home. Method In-depth interviews were conducted with seven members of care home staff. Data were analysed using interpretative phenomenological analysis. Results A representation modelling the impact of MT and DMT in a nursing care home. Three main themes were identified. 1) Discovering residents' skills and feelings; 2) Learning from the therapists to change approaches to care practice with subthemes: time, space and pace, choice, following the residents' lead; 3) Connection between staff and residents. Conclusion The model indicated that both interventions performed in parallel helped staff to discover residents' skills and feelings. Although it is a small sample size, this study strongly suggests that MT and DMT can have a positive influence in helping care staff to provide a meaningful care environment.
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.
McGilton, Katherine S; Höbler, Fiona; Campos, Jennifer; Dupuis, Kate; Labreche, Tammy; Guthrie, Dawn M; Jarry, Jonathan; Singh, Gurjit; Wittich, Walter
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. 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. 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 inform care planning, thereby improving residents' quality of life
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
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...
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…
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…
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
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.
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
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...
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.
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.
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.
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.
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
Shotton, L; Seedhouse, D
It is difficult to understand the meaning of 'dignity' in human rights, bioethics and nursing literature because the word is used so vaguely. Unless dignity's meaning is spelt out it can disappear beneath more tangible priorities. In this article we define dignity and show how this can help health workers to maintain the dignity of people in their care.
Andersen, Elizabeth A; Spiers, Jude
HOW TO OBTAIN CONTACT HOURS BY READING THIS ARTICLE INSTRUCTIONS 1.2 contact hours will be awarded by Villanova University College of Nursing upon successful completion of this activity. A contact hour is a unit of measurement that denotes 60 minutes of an organized learning activity. This is a learner-based activity. Villanova University College of Nursing does not require submission of your answers to the quiz. A contact hour certificate will be awarded once you register, pay the registration fee, and complete the evaluation form online at http://goo.gl/gMfXaf. To obtain contact hours you must: 1. Read the article, "Care Aides' Relational Practices and Caring Contributions" found on pages 24-30, carefully noting any tables and other illustrative materials that are included to enhance your knowledge and understanding of the content. Be sure to keep track of the amount of time (number of minutes) you spend reading the article and completing the quiz. 2. Read and answer each question on the quiz. After completing all of the questions, compare your answers to those provided within this issue. If you have incorrect answers, return to the article for further study. 3. Go to the Villanova website listed above to register for contact hour credit. You will be asked to provide your name; contact information; and a VISA, MasterCard, or Discover card number for payment of the $20.00 fee. Once you complete the online evaluation, a certificate will be automatically generated. This activity is valid for continuing education credit until October 31, 2019. CONTACT HOURS This activity is co-provided by Villanova University College of Nursing and SLACK Incorporated. Villanova University College of Nursing is accredited as a provider of continuing nursing education by the American Nurses Credentialing Center's Commission on Accreditation. ACTIVITY OBJECTIVES 1. Define the application of Swanson's Middle Range Theory of Caring in care aides' relational care practices for nursing home
van der Steen, Jenny T; Hertogh, Cees M P M; de Graas, Tjomme; Nakanishi, Miharu; Toscani, Franco; Arcand, Marcel
Families of patients with dementia may need support in difficult end-of-life decision making. Such guidance may be culturally sensitive. To support families in Canada, a booklet was developed to aid decision making on palliative care issues. For reasons of cost effectiveness and promising effects, we prepared for its implementation in Italy, the Netherlands and Japan. Local teams translated and adapted the booklet to local ethical, legal and medical standards where needed, retaining guidance on palliative care. Using qualitative content analyses, we grouped and compared adaptations to understand culturally sensitive aspects. Three themes emerged: (1) relationships among patient, physician and other professionals-the authority of the physician was more explicit in adapted versions; (2) patient rights and family position-adding detail about local regulations; and (3) typology of treatments and decisions. Considerations underlying palliative care decisions were detailed (Dutch and Italian versions), and the Japanese version frequently referred to professional and legal standards, and life-prolongation was a competing goal. Text on artificial feeding or fluids and euthanasia was revised extensively. Providing artificial feeding and fluids and discussing euthanasia may be particularly sensitive topics, and guidance on these subjects needs careful consideration of ethical aspects and possible adaptations to local standards and practice. The findings may promote cross-national debate on sensitive, core issues regarding end-of-life care in dementia.
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.
I.P. van Staveren (Irene)
textabstractThe 2008 financial crisis has demonstrated the failure of both utilitarian and deontological ethics in finance. Alternatives do not need to be created from nothing, because the crisis itself has stimulated the emergence of ethically sound finance practices from within the sector. This
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.
Phillips, Louise Jane
to residents with dementia. Drawing on Bakhtinian dialogic communication theory, an empirical analysis is presented of how knowledge is co-produced collaboratively in team case meetings. The focus is on the shifting relations between different voices, articulating different knowledge forms and professional...... identities, and on the relational construction of ”person-centred care” and the collective identity of the team in opposition to the practices and identities of residential care workers and relatives of residents. In conclusion, the paper discusses the implications of the empirical results in relation...
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
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.
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.
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
Backhouse, Amy; Richards, David A; McCabe, Rose; Watkins, Ross; Dickens, Chris
Interventions aiming to coordinate services for the community-based dementia population vary in components, organisation and implementation. In this review we aimed to investigate the views of stakeholders on the key components of community-based interventions coordinating care in dementia. We searched four databases from inception to June 2015; Medline, The Cochrane Library, EMBASE and PsycINFO, this was aided by a search of four grey literature databases, and backward and forward citation tracking of included papers. Title and abstract screening was followed by a full text screen by two independent reviewers, and quality was assessed using the CASP appraisal tool. We then conducted thematic synthesis on extracted data. A total of seven papers from five independent studies were included in the review, and encompassed the views of over 100 participants from three countries. Through thematic synthesis we identified 32 initial codes that were grouped into 5 second-order themes: (1) case manager had four associated codes and described preferences for the case manager personal and professional attributes, including a sound knowledge in dementia and availability of local services; (2) communication had five associated codes and emphasized the importance stakeholders placed on multichannel communication with service users, as well as between multidisciplinary teams and across organisations; (3) intervention had 11 associated codes which focused primarily on the practicalities of implementation such as the contact type and frequency between case managers and service users, and the importance of case manager training and service evaluation; (4) resources had five associated codes which outlined stakeholder views on the required resources for coordinating interventions and potential overlap with existing resources, as well as arising issues when available resources do not meet those required for successful implementation; and (5) support had seven associated codes that
Full Text Available Abstract Background Interventions aiming to coordinate services for the community-based dementia population vary in components, organisation and implementation. In this review we aimed to investigate the views of stakeholders on the key components of community-based interventions coordinating care in dementia. Methods We searched four databases from inception to June 2015; Medline, The Cochrane Library, EMBASE and PsycINFO, this was aided by a search of four grey literature databases, and backward and forward citation tracking of included papers. Title and abstract screening was followed by a full text screen by two independent reviewers, and quality was assessed using the CASP appraisal tool. We then conducted thematic synthesis on extracted data. Results A total of seven papers from five independent studies were included in the review, and encompassed the views of over 100 participants from three countries. Through thematic synthesis we identified 32 initial codes that were grouped into 5 second-order themes: (1 case manager had four associated codes and described preferences for the case manager personal and professional attributes, including a sound knowledge in dementia and availability of local services; (2 communication had five associated codes and emphasized the importance stakeholders placed on multichannel communication with service users, as well as between multidisciplinary teams and across organisations; (3 intervention had 11 associated codes which focused primarily on the practicalities of implementation such as the contact type and frequency between case managers and service users, and the importance of case manager training and service evaluation; (4 resources had five associated codes which outlined stakeholder views on the required resources for coordinating interventions and potential overlap with existing resources, as well as arising issues when available resources do not meet those required for successful implementation
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.
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
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…
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…
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
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
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…
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
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...
Kerns, J William; Winter, Jonathan D; Winter, Katherine M; Boyd, Terry; Etz, Rebecca S
Guidelines, policies, and warnings have been applied to reduce the use of medications for behavioral and psychological symptoms of dementia (BPSD). Because of rare dangerous side effects, antipsychotics have been singled out in these efforts. However, antipsychotics are still prescribed "off label" to hundreds of thousands of seniors residing in nursing homes and communities. Our objective was to evaluate how and why primary-care physicians (PCPs) employ nonpharmacologic strategies and drugs for BPSD. Semi-structured interviews analyzed via template, immersion and crystallization, and thematic development of 26 PCPs (16 family practice, 10 general internal medicine) in full time primary-care practice for at least 3 years in Northwestern Virginia. PCPs described 4 major themes regarding BPSD management: (1) nonpharmacologic methods have substantial barriers; (2) medication use is not constrained by those barriers and is perceived as easy, efficacious, reasonably safe, and appropriate; (3) pharmacologic policies decrease the use of targeted medications, including antipsychotics, but also have unintended consequences such as increased use of alternative risky medications; and (4) PCPs need practical evidence-based guidelines for all aspects of BPSD management. PCPs continue to prescribe medications because they meet patient-oriented goals and because PCPs perceive drugs, including antipsychotics and their alternatives, to be more effective and less dangerous than evidence suggests. To optimally treat BPSD, PCPs need supportive verified prescribing guidelines and access to nonpharmacologic modalities that are as affordable, available, and efficacious as drugs; these require and deserve significant additional research and payer support. Community PCPs should be included in BPSD policy and guideline development. © Copyright 2018 by the American Board of Family Medicine.
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.
Lee, Linda; Molnar, Frank
To provide primary care physicians with an approach to driving safety concerns when older persons present with memory difficulties. The approach is based on an accredited memory clinic training program developed by the Centre for Family Medicine Primary Care Collaborative Memory Clinic. One of the most challenging aspects of dementia care is the assessment of driving safety. Drivers with dementia are at higher risk of motor vehicle collisions, yet many drivers with mild dementia might be safely able to continue driving for several years. Because safe driving is dependent on multiple cognitive and functional skills, clinicians should carefully consider many factors when determining if cognitive concerns affect driving safety. Specific findings on corroborated history and office-based cognitive testing might aid in the physician's decisions to refer for comprehensive on-road driving evaluation and whether to notify transportation authorities in accordance with provincial reporting requirements. Sensitive communication and a person-centred approach are essential. Primary care physicians must consider many factors when determining if cognitive concerns might affect driving safety in older drivers. Copyright© the College of Family Physicians of Canada.
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.
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
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
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
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.
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.
van Riet Paap, Jasper; Vernooij-Dassen, Myrra; Dröes, Rose-Marie; Radbruch, Lukas; Vissers, Kris; Engels, Yvonne
Large numbers of vulnerable patients are in need of palliative cancer and dementia care. However, a wide gap exists between the knowledge of best practices in palliative care and their use in everyday clinical practice. As part of a European policy improvement program, quality indicators (QIs) have been developed to monitor and improve the organisation of palliative care for patients with cancer and those with dementia in various settings in different European countries. A multidisciplinary, international panel of professionals participated in a modified RAND Delphi procedure to compose a set of palliative care QIs based on existing sets of QIs on the organisation of palliative care. Panellists participated in three written rounds, one feedback round and one meeting. The panel's median votes were used to identify the final set of QIs. The Delphi procedure resulted in 23 useful QIs. These QIs represent key elements of the organisation of good clinical practice, such as the availability of palliative care teams, the availability of special facilities to provide palliative care for patients and their relatives, and the presence of educational interventions for professionals. The final set also includes QIs that are related to the process of palliative care, such as documentation of pain and other symptoms, communication with patients in need of palliative care and their relatives, and end-of-life decisions. International experts selected a set of 23 QIs for the organisation of palliative care. Although we particularly focused on the organisation of cancer and dementia palliative care, most QIs are generic and are applicable for other types of diseases as well.
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.
Epilepsy care in Ireland is shared between primary, secondary and tertiary care services with the General Practitioner (GP) managing the process. Barriers to effective epilepsy care in Irish general practice remain undocumented although sub-optimal and fragmented services are frequently anecdotally reported. This survey of Irish GPs reports on such barriers to epilepsy care and on the Information & Communication Technology (ICT) issues potentially relevant to the use of an epilepsy specific Electronic Patient Record (EPR). The response rate was 247\\/700 (35.3%). Respondents supported the concept of shared care for epilepsy 237 (96%) however they were very dissatisfied with existing neurology services, including pathways of referral 207 (84%) and access to specialist neurology advice and investigations 232 (94%). They reported that neurology services and investigations may be accessed more expeditiously by patients with private health insurance than those without 178 (72%). Consequently many patients are referred to the emergency department for assessment and treatment 180 (73%). A deficit in epilepsy care expertise among GPs was acknowledged 86 (35%). While computerisation of GP practices appears widespread 230 (93%), just over half the respondents utilise available electronic functionalities specific to chronic disease management. GP specific electronic systems infrequently link or communicate with external electronic sources 133 (54%). While the current pathways of care for epilepsy in Ireland appear fragmented and inadequate, further investigations to determine the quality and cost effectiveness of the current service are required.
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.
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/ ...
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.
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.
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.
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
Lee, Jung-Ah; Nguyen, Hannah; Park, Joan; Tran, Linh; Nguyen, Trang; Huynh, Yen
Families of ethnic minority persons with dementia often seek help at later stages of the disease. Little is known about the effectiveness of various methods in supporting ethnic minority dementia patients' caregivers. The objective of the study was to identify smartphone and computer usage among family caregivers of dementia patients (i.e., Korean and Vietnamese Americans) to develop dementia-care education programs for them. Participants were asked various questions related to their computer or smartphone usage in conjunction with needs-assessment interviews. Flyers were distributed at two ethnic minority community centers in Southern California. Snowball recruitment was also utilized to reach out to the families of dementia patients dwelling in the community. Thirty-five family caregivers, including 20 Vietnamese and 15 Korean individuals, participated in this survey. Thirty participants (30 of 35, 85.7%) were computer users. Among those, 76.7% (23 of 30) reported daily usage and 53% (16 of 30) claimed to use social media. A majority of the participants (31 of 35, 88.6%) reported that they owned smartphones. More than half of smartphone users (18 of 29, 62%) claimed to use social media applications. Many participants claimed that they could not attend in-class education due to caregiving and/or transportation issues. Most family caregivers of dementia patients use smartphones more often than computers, and more than half of those caregivers communicate with others through social media apps. A smartphone-app-based caregiver intervention may serve as a more effective approach compared to the conventional in-class method. Multiple modalities for the development of caregiver interventions should be considered.
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.
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…
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.
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.
The stages of life are now many, each having its own boundaries, logic, and a prescribed perspective of appropriate relations amongst and between members of the many stages. Just as there is a developing curriculum for the young, there is a developing curriculum in the area of elder care. Within the paradigm of staged human development, the end…
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.
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.
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.
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.
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.
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:
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.
Powers, B A
The concept of everyday ethics was used to emphasize the moral basis of ordinary issues of daily living affecting quality of life for nursing home residents with dementia. To critically examine ethical issues of daily living affecting nursing home residents with dementia and to construct a descriptive taxonomy inductively derived from ethnographic fieldwork data. Combined anthropological methods of participant observation and in-depth interviewing were used in the natural setting of a 147-bed, voluntary, not-for-profit nursing home. Experiences of 30 residents, their family members, and nursing home staff were explored. In addition, the records of 10 ethics committee cases involving residents with dementia further enlarged the database. The taxonomy of everyday ethical issues includes the following four domains: (a) learning the limits of intervention; (b) tempering the culture of surveillance and restraint; (c) preserving the integrity of the individual; and (d) defining community norms and values. Each is representative of constellations of concerns that are grounded in the cultural and moral environment of the nursing home. Results highlight the challenges of recognizing the ethical in the ordinary, and of resolving everyday issues in ways that enhance quality of life for residents with dementia and those (family and staff) who care for them.
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...
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.
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.
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.
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 Abstract Background People with dementia are often inapproachable due to symptoms of their illness. Therefore nurses should establish relationships with dementia patients via their remaining resources and facilitate communication. In order to achieve this, different targeted non-pharmacological interventions are recommended and practiced. However there is no sufficient evidence about the efficacy of most of these interventions. A number of publications highlight the urgent need for methodological sound studies so that more robust conclusions may be drawn. Methods/Design The trial is designed as a cluster randomized controlled trial with 20 nursing homes in Saxony and Saxony-Anhalt (Germany as the units of randomization. Nursing homes will be randomly allocated into 4 study groups consisting of 5 clusters and 90 residents: snoezelen, structured reminiscence therapy, 10-minutes activation or unstructured verbal communication (control group. The purpose is to determine whether the interventions are effective to reduce apathy in long-term care residents with dementia (N = 360 as the main outcome measure. Assessments will be done at baseline, 3, 6 and 12 months after beginning of the interventions. Discussion This trial will particularly contribute to the evidence on efficacy of non-pharmacological interventions in dementia care. Trial Registration ClinicalTrials.gov NCT00653731
White, Carole L; Overbaugh, Kristen J; Pickering, Carolyn E Z; Piernik-Yoder, Bridgett; James, Debbie; Patel, Darpan I; Puga, Frank; Ford, Lark; Cleveland, James
There are currently 15 million Americans who provide over 80% of the care required by their family members with Alzheimer's disease and other dementias. Yet care for caregivers continues to be fragmented and few evidence-based interventions have been translated into routine clinical care and therefore remain inaccessible to most family caregivers. To address this gap, the Caring for the Caregiver program is being developed at UT Health San Antonio, School of Nursing to improve support services and health outcomes for family caregivers. Our purpose is to describe the engagement process undertaken to assess caregiver and community needs and how findings are informing program development. We are using a model of public engagement that consists of communication of information, collection of information from stakeholders, and collaboration where stakeholders are partners in an exchange of information to guide program activities. An assessment of the community was undertaken to identify resources/services for family caregivers. Subsequently, stakeholders were invited to a community-academic forum to discuss strategies to build on existing strengths for family caregiving and to identify gaps in care. Detailed notes were taken and all discussions were recorded and transcribed for analysis. Data were analyzed using thematic content analysis. We conducted site visits with 15 community agencies, interviewed 13 family caregivers, and attended community events including support groups and health and senior fairs. Fifty-three diverse stakeholders attended the community-academic forum. Participants identified existing assets within our community to support family caregivers. Consistent among groups was the need to increase awareness in our community about family caregivers. Themes identified from the discussion were: making the invisible visible, you don't know what you don't know, learning too late, and anticipating and preparing for the future. Incorporating caregiver 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
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.
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.
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.
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...
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.
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.
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.
Xiao, Lily Dongxia; De Bellis, Anita; Kyriazopoulos, Helena; Draper, Brian; Ullah, Shahid
Most caregiver interventions in a multicultural society are designed to target caregivers from the mainstream culture and exclude those who are unable to speak English. This study addressed the gap by testing the hypothesis that personalized caregiver support provided by a team led by a care coordinator of the person with dementia would improve competence for caregivers from minority groups in managing dementia. A randomised controlled trial was utilised to test the hypothesis. Sixty-one family caregivers from 10 minority groups completed the trial. Outcome variables were measured prior to the intervention, at 6 and 12 months after the commencement of trial. A linear mixed effect model was used to estimate the effectiveness of the intervention. The intervention group showed a significant increase in the caregivers' sense of competence and mental components of quality of life. There were no significant differences in the caregivers' physical components of quality of life. © The Author(s) 2015.
Landes, Scott D
This article correlates a particular experience of providing pastoral care for a person in a crisis situation with a particular understanding of the practice of pastoral care. Through engaging in correlative practical theology, it highlights the need for practicing discernment when providing pastoral care for persons utilizing narratives to work through crisis situations.
Kamenski, Gustav; Dorner, Thomas; Lawrence, Kitty; Psota, Georg; Rieder, Anita; Schwarz, Franz; Sepandj, Asita; Spiegel, Wolfgang; Strotzka, Stefan
Background Dementia is considered widely under-detected in primary care, and general practitioners (GPs) frequently ask for easy to use tools to assist in its early detection.Aim To determine the degree of correlation between the Mini-Cog Assessment (Mini-Cog) as performed by GPs and the Mini-Mental State Examination (MMSE).Design of study This was a prospective study (2005, 2006) comparing two cognitive screening instruments.Setting Ten general practices in Austria, with patients with a hitherto undiagnosed suspicion of dementia seen consecutively.Method Sensitivity, specificity and positive and negative predictive values (PPVs and NPVs) of the Mini-Cog (applying both a colour-coded and the original rating method) were assessed for degree of correlation with the MMSE. In phase one GPs examined patients suspected of having dementia using the Mini-Cog; in phase two a neurologist retested them applying the MMSE, a clock-drawing test (CDT) and a routine clinical examination. A questionnaire on the practicability of the Mini-Cog was answered by GPs.Results Of the 107 patients who participated 86 completed the whole study protocol. The Mini-Cog, as performed by the ten GPs, displayed a sensitivity of 0.85 (95% CI: 0.71, 0.98), a specificity of 0.58 (95% CI: 0.46, 0.71), a PPV of 0.47 (95% CI: 0.33, 0.61) and an NPV of 0.90 (95% CI: 0.80, 0.99) as against the MMSE carried out by neurologists. The GPs judged the Mini-Cog useful and time saving.Conclusion The Mini-Cog has a high sensitivity and acceptable specificity in the general practice setting and has proved to be a practicable tool for the diagnosis of dementia in primary care.
Hall, Alex; Wilson, Christine Brown; Stanmore, Emma; Todd, Chris
Ageing societies and a rising prevalence of dementia are associated with increasing demand for care home places. Monitoring technologies (e.g. bed-monitoring systems; wearable location-tracking devices) are appealing to care homes as they may enhance safety, increase resident freedom, and reduce staff burden. However, there are ethical concerns about the use of such technologies, and it is unclear how they might be implemented to deliver their full range of potential benefits. This study explored facilitators and barriers to the implementation of monitoring technologies in care homes. Embedded multiple-case study with qualitative methods. Three dementia-specialist care homes in North-West England. Purposive sample of 24 staff (including registered nurses, clinical specialists, senior managers and care workers), 9 relatives and 9 residents. 36 semi-structured interviews with staff, relatives and residents; 175h of observation; resident care record review. Data collection informed by Normalization Process Theory, which seeks to account for how novel interventions become routine practice. Data analysed using Framework Analysis. Findings are presented under three main themes: 1. Reasons for using technologies: The primary reason for using monitoring technologies was to enhance safety. This often seemed to override consideration of other potential benefits (e.g. increased resident freedom) or ethical concerns (e.g. resident privacy); 2. Ways in which technologies were implemented: Some staff, relatives and residents were not involved in discussions and decision-making, which seemed to limit understandings of the potential benefits and challenges from the technologies. Involvement of residents appeared particularly challenging. Staff highlighted the importance of training, but staff training appeared mainly informal which did not seem sufficient to ensure that staff fully understood the technologies; 3. Use of technologies in practice: Technologies generated frequent
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.
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.
Zwijsen, S.A.; Depla, M.F.I.A.; Niemeijer, A.R.; Francke, A.L.; Hertogh, C.M.P.M.
Introduction: Although in most developed countries the use of restraints is regulated and restricted by law, the concept of restraint in nursing home care remains ambiguous. This study aims to explore how care professionals and family members of nursing home residents with dementia in the
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.
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
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
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
Yi Mohammadi, Joanna Jin; Franks, Kay; Hines, Sonia
. Statistically significant differences in mean dental and denture plaque scores at six months in both groups occurred (student t-test, p effects of this intervention are unknown. Further studies exploring the long-term effects of staff training on oral health education are needed as well as ongoing staff training in aged care facilities.A systematic review on oral health and aspiration pneumonia conducted by Vander Maarel-Wierink et al. has suggested that, in the frail elderly, the best intervention to reduce the incidence of aspiration pneumonia is brushing of teeth after each meal, cleaning dentures once a day, and receiving professional oral health care once a week.The need to advocate for a new model of geriatric dentistry is critical. A holistic multi-disciplinary approach to health care for residents entering aged care homes is imperative to achieve better oral health and comfort for residents, especially with Australia's ageing dentate population. A dental examination and assessment on admission to a RACF should be conducted by a Registered Nurse (RN), followed by an oral health professional such as a dentist, dental hygienist or oral health therapist. Current practice in the majority of Australian government funded nursing homes is that the RN or the Assistant in Nursing (AIN) conduct the oral health assessment as part of the aged care funding instrument (ACFI). Ongoing oral health care supported by an oral health professional is important throughout the individual's residency and eventual palliation whilst in an aged care facility.No systematic reviews conducted on the impact of professional oral care on the oral health of elderly people living in residential aged care facilities could be located, despite extensive searching of Medline, CINAHL, EMBASE, Web of Science, Cochrane Central Register of Trials and Dentistry & Oral Sciences Source (DOSS) databases. A JBI systematic review was conducted in 2004, titled, "Oral hygiene care for adults with dementia in residential
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.
Argyriadou, S; Melissopoulou, H; Krania, E; Karagiannidou, A; Vlachonicolis, I; Lionis, C
Dementia and depression are very common disorders among elderly people and their presence decreases the well-being of the aged. The purpose of this study was to assess the magnitude of dementia and depression among elderly people living in different settings in the catchment area of the Chrisoupolis health centre (HCCh) in northern Greece. A total of 536 patients aged 65 years and over, including 48 subjects living in an old people's home, 75 subjects who were taking part in the activities of the open centre for the elderly and 413 subjects randomly selected from those visiting the HCCh, were interviewed by the primary health care team of the HCCh. Medical and family history data were recorded, while cognitive and mood disorders were assessed by using the Mini Mental State Examination and Geriatric Depression Screening Scale. At the time of the examination, 37.6% of the men and 41.6% of the women showed various degrees of cognitive impairment, while 29.9% of the women and 19.6% of the men showed mild to moderate depression. Diabetes mellitus and hypertension frequently were found to co-exist with depression and dementia. The results reaffirm that there is a high prevalence of the studied mental disorders in older patients in the out-patient setting in Greece. A set of recommendations to Greek GPs has now been formulated, with specific emphasis on the use of different screening tools and the appropriate treatment of the most frequently co-existing chronic diseases.
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.
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.
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.
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.
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.
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.
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…
van Mierlo, L.D.; van der Wiel, A.; Meiland, F.J.M.; van Hout, H.P.J.; Stek, M.L.; Dröes, R.M.
Objectives: In the Netherlands, many community-dwelling people with dementia and behavioral disturbances and their family caregivers receive mental health care from a community psychiatric nurse (CPN). To promote continuity of care for these persons after moving to a nursing home, a transfer
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.
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.
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.
Presents an overview of Islamic health care beliefs and practices, noting health-related social and spiritual issues, fundamental beliefs and themes in Islam, health care beliefs and practices common among Muslims, and health-affecting social roles among Muslims. Cultural, religious, and social barriers to health care and ways to reduce them are…
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.
... 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 ...
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.
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.
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 ...
Costa, Gislaine Desani da; Souza, Rosely Almeida; Yamashita, Cintia Hitomi; Pinheiro, Juliane Cibelle Ferreira; Alvarenga, Márcia Regina Martins; Oliveira, Maria Amélia de Campos
To describe the trans-cultural adaptation of the evaluation instrument entitled Atenció Sanitària de Les Demències: la visió de L' Atenció Primarià from Catalan into versions in Portuguese for doctors and nurses. This study evaluates the knowledge and perspectives of these professionals in their treatment of patients diagnosed with dementia in cases of primary care. The adaptation followed internationally accepted rules, which include the following steps: translation, synthesis, back-translation, revision by a committee of specialists, and a test run with 35 practicing doctors and 35 practicing nurses in Brazil's Family Health Strategy (Estratégia Saúde da Família, or ESF in Portuguese). The translation, synthesis, and back-translation steps were performed satisfactorily; only small adjustments were required. The committee of specialists verified the face validity in the version translated into Portuguese, and all of the items that received an agreement score lower than 80% during the initial evaluation were revised. In the test run, the difficulties presented by the health care professionals did not reach 15% of the sample, and therefore, no changes were made. The Portuguese translation of the instrument can be considered semantically, idiomatically, culturally, and conceptually equivalent to the original Catalan version and is, therefore, appropriate for use in Brazil.
Gislaine Desani da Costa
Full Text Available Objective To describe the trans-cultural adaptation of the evaluation instrument entitled Atenció Sanitària de Les Demències: la visió de L' Atenció Primarià from Catalan into versions in Portuguese for doctors and nurses. This study evaluates the knowledge and perspectives of these professionals in their treatment of patients diagnosed with dementia in cases of primary care. Method The adaptation followed internationally accepted rules, which include the following steps: translation, synthesis, back-translation, revision by a committee of specialists, and a test run with 35 practicing doctors and 35 practicing nurses in Brazil's Family Health Strategy (Estratégia Saúde da Família, or ESF in Portuguese. Results The translation, synthesis, and back-translation steps were performed satisfactorily; only small adjustments were required. The committee of specialists verified the face validity in the version translated into Portuguese, and all of the items that received an agreement score lower than 80% during the initial evaluation were revised. In the test run, the difficulties presented by the health care professionals did not reach 15% of the sample, and therefore, no changes were made. Conclusion The Portuguese translation of the instrument can be considered semantically, idiomatically, culturally, and conceptually equivalent to the original Catalan version and is, therefore, appropriate for use in Brazil.
Mathew, R; Davies, N; Manthorpe, J; Iliffe, S
Decision-making, when providing care and treatment for a person with dementia at the end of life, can be complex and challenging. There is a lack of guidance available to support practitioners and family carers, and even those experienced in end of life dementia care report a lack of confidence in decision-making. It is thought that the use of heuristics (rules of thumb) may aid decision-making. The aim of this study is to identify whether heuristics are used in end of life dementia care, and if so, to identify the context in which they are being used. A narrative literature review was conducted taking a systematic approach to the search strategy, using the Centre for Reviews and Dissemination guidelines. Rapid appraisal methodology was used in order to source specific and relevant literature regarding the use of heuristics in end of life dementia care. A search using terms related to dementia, palliative care and decision-making was conducted across 4 English language electronic databases (MEDLINE, EMBASE, PsycINFO and CINAHL) in 2015. The search identified 12 papers that contained an algorithm, guideline, decision tool or set of principles that we considered compatible with heuristic decision-making. The papers addressed swallowing and feeding difficulties, the treatment of pneumonia, management of pain and agitation, rationalising medication, ending life-sustaining treatment, and ensuring a good death. The use of heuristics in palliative or end of life dementia care is not described in the research literature. However, this review identified important decision-making principles, which are largely a reflection of expert opinion. These principles may have the potential to be developed into simple heuristics that could be used in practice. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/
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.
Ulrich, Lisa-R; Schatz, Tanja R; Lappe, Veronika; Ihle, Peter; Barthen, Linda; Gerlach, Ferdinand M; Erler, Antje
Health service planning that takes into account as far as possible the regional needs and regional discrepancies is a controversial health issue in Germany. In a pilot scheme, we tested a planning process for regional healthcare services, based on the example of dementia care. The aim of this article is to present the strengths and limitations of this planning process. We developed an indicator set for dementia care based on routine regional data obtained from two German statutory health insurance companies. Additionally, primary data based on a questionnaire sent to all GPs in the area were evaluated. These data were expanded through the addition of official socio-demographic population data. Procedures and evaluation strategies, discussion of the results and the derivation of planning measures followed, in close agreement with a group of local experts. Few epidemiological data on regional variations in health care planning are publicly available. Secondary data from statutory health insurance companies can be assessed to support the estimation of regional health care needs, but interpretation is difficult. The use of surveys to collect primary data, and the assessment of results by the local health board may facilitate interpretation and may contribute towards more valid statements regarding regional health planning. Despite the limited availability of data and the considerable efforts involved in data analysis, the project demonstrates how needs-based health service planning can be carried out in a small region, taking into account the increasing demands of the local health care providers and the special local features.
Diehl-Schmid, J; Richard-Devantoy, S; Grimmer, T; Förstl, H; Jox, R
The aim of the present study was to gain insight into the living and care situation in advanced behavioral variant frontotemporal dementia (bvFTD), to describe symptoms and findings in advanced bvFTD, and to evaluate somatic comorbidities and circumstances of death. Standardized interviews were conducted with family caregivers of 83 patients with bvFTD. Forty-four percent of the patients were already deceased at the time of the interview. At the time of the interview or death, respectively, 47% of the patients lived in a nursing home. The median time between symptom onset and nursing home admission was 5.0 ± 5.5 years. In moderate and severe dementia stages almost all patients suffered from severe disabilities including impairment of language, gait, swallowing, and of the ability to care for themselves. Sixteen percent of the patients had got enteral tube feeding. Comorbid somatic diseases were diagnosed in 46% of the patients. Twenty-three percent of the deceased patients had been admitted into a hospital before death. Cardiovascular disease and respiratory disease, mostly pneumonia, were the most frequent causes of death. Advanced bvFTD is characterized by severe cognitive impairment and physical disabilities. BvFTD leads to a premature death. Our findings stress the importance of strategies that maximize patient comfort in advanced disease stages and allow for a peaceful death. Copyright © 2016 John Wiley & Sons, Ltd. Copyright © 2016 John Wiley & Sons, Ltd.
Takizawa, Takeya; Takahashi, Megumi; Takai, Michiko; Ikeda, Taichiro; Miyaoka, Hitoshi
Dementia care practitioner training is essential for professional caregivers to acquire medical knowledge and care skills for dementia patients. We investigated the significance of training in stress management by evaluating caregivers' job stress and coping style before and after they have completed training. The subjects included 134 professional caregivers (41 men, 93 women) recruited from participants in training programmes held in Kanagawa Prefecture from August 2008 to March 2010. A survey using a brief job stress questionnaire and a coping scale was carried out before and after they completed their training. A t-test and multiple regression analysis were performed to evaluate the effects of the training. After the training, the scores of modifiers on the job stress scale and of the coping scale increased, whereas the scores of stress reactions on the job stress scale decreased. However, there were no changes in participants' subjective cognition concerning their workplace environment. Furthermore, the change in stress reaction score tended to correlate with the change in consultation score in all participants and with the change in problem-solving and consultation in male participants. Among female participants, the change in stress reaction score tended to correlate with change in support from superiors and colleagues as modifiers. The factors that correlated to the change in stress reaction score differed between genders. The findings suggest that training caregivers improves their stress reaction and coping skills. © 2016 The Authors. Psychogeriatrics © 2016 Japanese Psychogeriatric Society.
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
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
Ridder, Hanne Mette Ochsner
A Biopsychosocial Perspective on Agitation in Dementia Person-Centered Care and Music for Decreasing Agitation Evidence-Based Research on Music and Music Therapy Clinical Music Therapy Practice and Theory Other Current Developments in Music Recommendations...
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.
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.
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.
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
Jotkowitz, Alan B; Clarfield, A Mark; Glick, Shimon
Patients with dementia and their families can face many difficult and agonizing ethical dilemmas over the course of the illness. An awareness of the Jewish ethical response to some of these issues can help clinicians in treating patients of the Jewish faith and also serve as an example of how one ethical system addresses these questions. The Jewish response is grounded in a profound respect and value for human life in all its forms and man's responsibility to preserve it, but Judaism rejects unproven therapies and recognizes the limitations of modern medicine. Jewish law also codifies normative obligations that children have toward their elderly parents. With these principles in the forefront, this article analyzes a Jewish ethical response to various problems in the care of the demented patient such as truth telling, transfer to a nursing home, artificial nutrition, and end-of-life care, taking into account modern concepts of the doctor-patient relationship and ancient Jewish tradition.
Laditka, Sarah B; Tseng, Winston; Price, Anna E; Ivey, Susan L; Friedman, Daniela B; Liu, Rui; Wu, Bel; Logsdon, Rebecca G; Beard, Renée 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 themes across focus groups. Caregivers most frequently described cognitive health benefits of social engagement and leisure; next in emphasis were benefits of healthy diets. There was less emphasis on physical activity. Participants had heard from television that avoiding smoking, alcohol, and drugs might promote cognitive health. Ways to inform others about cognitive health included information in Filipino newspapers, and handouts in Filipino languages, distributed in Filipino stores, workplaces, community organizations, and health care facilities. Findings suggest an opportunity to develop public health messages promoting cognitive health that are in-language, published in ethnic-specific media, and that are culturally appropriate for Filipino and other Asian Americans.
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.
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.
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.
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.
Amy S. Hwang
Full Text Available Ambient assisted living (AAL aims to help older persons “age-in-place” and manage everyday activities using intelligent and pervasive computing technology. AAL research, however, has yet to explore how AAL might support or collaborate with informal care partners (ICPs, such as relatives and friends, who play important roles in the lives and care of persons with dementia (PwDs. In a multiphase codesign process with six (6 ICPs, we envisioned how AAL could be situated to complement their care. We used our codesigned “caregiver interface” artefacts as triggers to facilitate envisioning of AAL support and unpack the situated, idiosyncratic context within which AAL aims to assist. Our findings suggest that AAL should be designed to support ICPs in fashioning “do-it-yourself” solutions that complement tacitly improvised care strategies and enable them to try, observe, and adapt to solutions over time. In this way, an ICP could decide which activities to entrust to AAL support, when (i.e., scheduled or spontaneous and how a system should provide support (i.e., using personalized prompts based on care experience, and when adaptations to system support are needed (i.e., based alerting patterns and queried reports. Future longitudinal work employing participatory, design-oriented methods with care dyads is encouraged.
Full Text Available Objective: In order to address well-known challenges in dementia care, an inter-professional course was developed to improve medical students’ and nursing students’ competencies in the provision of evidence-based care for people with dementia. The course comprises lectures, problem-based learning (PbL tutorials and visitations to care facilities. A pilot study was conducted to evaluate the acceptance and feasibility of the inter-professional course.Methodology: Alongside preliminary implementation of the newly developed course, a pre-post survey was carried out involving all participating students. The questionnaire contained standardized and open-ended questions on participants’ views regarding the quality and relevance of several course components and characteristics. The data were analyzed by means of descriptive statistics.Results: When the course was offered the first time, multiple barriers became evident, leading to premature course termination and subsequent revision of the curriculum. When the revised course was offered, 10 medical students and 8 nursing students participated. The course proved feasible, and the median overall quality was rated as “2” (IQR 2–3 at a rating scale ranging from 1 (very good to 6 (inadequate. Following aspects were most frequently judged positively: the course’s inter-professional scope, the visitations to care facilities and the PbL tutorials. Potential for improvement was particularly noted with regard to a more distinct focus on well-defined, mainly practical learning outcomes. There were no indications of systematic between-group differences in the medical and nursing students’ perceptions of the course program.Conclusions: The results confirmed the feasibility of the inter-professional course on dementia care and the relevance of its inter-professional scope. However, to ensure sustainable course implementation in the long term, further program adaptations based on current findings and
Chalk, Annabel; Page, Sean
There is increasing interest in developing dementia supportive communities world wide. Dementia RED (Respect Empathy Dignity) is a unique example from North Wales which is based on the twin concepts of people living with dementia as citizens in their community and developing 'bottom up' rather than 'top down' approaches to dementia supportive communities. Most people with dementia prefer to live at home thus making community connectivity key to maintaining healthy relationships and wellbeing. For those living with dementia, the community plays a pivotal role in providing value, meaning, purpose and acceptance. Building dementia supportive communities helps to raise awareness about dementia in the community through engagement and from identifying champions in the locality to voice issues. Dementia RED is an initiative and service which helps to develop such a philosophy in creating a dementia supportive community. © The Author(s) 2014.
Evaluation of an Organisational Intervention to Promote Integrated Working between Health Services and Care Homes in the Delivery of End-of-Life Care for People with Dementia: Understanding the Change Process Using a Social Identity Approach.
Amador, Sarah; Goodman, Claire; Mathie, Elspeth; Nicholson, Caroline
In the United Kingdom, approximately a third of people with dementia live in long-term care facilities for adults, the majority of whom are in the last years of life. Working arrangements between health services and care homes in England are largely ad hoc and often inequitable, yet quality end-of-life care for people with dementia in these settings requires a partnership approach to care that builds on existing practice. This paper reports on the qualitative component of a mixed method study aimed at evaluating an organisational intervention shaped by Appreciativ