Dementia and driving : A survey of clinical practice in aged care assessment teams

NARCIS (Netherlands)

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

Life story resources in dementia care: a review.

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Kindell, Jacqueline; Burrow, Simon; Wilkinson, Ray; Keady, John David

2014-01-01

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.

Implementing Dementia Care Mapping to develop person-centred care: results of a process evaluation within the Leben-QD II trial.

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Quasdorf, Tina; Riesner, Christine; Dichter, Martin Nikolaus; Dortmann, Olga; Bartholomeyczik, Sabine; Halek, Margareta

2017-03-01

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

Between practice, policy and politics: Music therapy and the Dementia Strategy, 2009.

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Spiro, Neta; Farrant, Camilla L; Pavlicevic, Mercédès

2017-04-01

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.

Dementia prevalence and care in assisted living.

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Zimmerman, Sheryl; Sloane, Philip D; Reed, David

2014-04-01

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.

Practices used in Israel by nurses who care during hospitalization for older patients with dementia or who are bedridden.

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Iecovich, Esther; Rabin, Barbara

2014-03-01

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.

Montessori-based dementia care.

Science.gov (United States)

Cline, Janet

2006-10-01

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.

Micro-citizenship, dementia and long-term care.

Science.gov (United States)

Baldwin, Clive; Greason, Michelle

2016-05-01

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.

Who steers the ship? Rural family physicians' views on collaborative care models for patients with dementia.

Science.gov (United States)

Kosteniuk, Julie; Morgan, Debra; Innes, Anthea; Keady, John; Stewart, Norma; D'Arcy, Carl; Kirk, Andrew

2014-01-01

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.

Ethical issues in caring for patients with dementia.

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Hughes, Julian; Common, Jill

2015-08-05

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.

Staff personhood in dementia care settings: "Do they care about me?"

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Cooke, Heather A

2018-06-01

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.

The full spectrum of ethical issues in dementia care: systematic qualitative review.

Science.gov (United States)

Strech, Daniel; Mertz, Marcel; Knüppel, Hannes; Neitzke, Gerald; Schmidhuber, Martina

2013-06-01

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.

Alzheimer's Association Quality Care Campaign and professional training initiatives: improving hands-on care for people with dementia in the U.S.A.

Science.gov (United States)

Gould, Elizabeth; Reed, Peter

2009-04-01

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.

Personalized dementia care: proven effectiveness of psychosocial interventions in subgroups

NARCIS (Netherlands)

van Mierlo, L.D.; van der Roest, H.G.; Meiland, F.J.M.; Dröes, R.M.

2010-01-01

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

Improving family medicine resident training in dementia care: an experiential learning opportunity in Primary Care Collaborative Memory Clinics.

Science.gov (United States)

Lee, Linda; Weston, W Wayne; Hillier, Loretta; Archibald, Douglas; Lee, Joseph

2018-06-21

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.

Citizenship and people living with dementia: A case for the ethics of care.

Science.gov (United States)

Brannelly, Tula

2016-05-01

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.

Improving dementia diagnosis and management in primary care: a cohort study of the impact of a training and support program on physician competency, practice patterns, and community linkages.

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Lathren, Christine R; Sloane, Philip D; Hoyle, Joseph D; Zimmerman, Sheryl; Kaufer, Daniel I

2013-12-10

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.

First TV ad for dementia care.

Science.gov (United States)

2008-12-10

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.

Variations in dementia diagnosis in England and association with general practice characteristics.

Science.gov (United States)

Walker, Ian F; Lord, Paul A; Farragher, Tracey M

2017-05-01

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.

A break-even analysis for dementia care collaboration: Partners in Dementia Care.

Science.gov (United States)

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

2015-06-01

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

A survey of the Queensland healthcare workforce: attitudes towards dementia care and training.

Science.gov (United States)

Travers, Catherine M; Beattie, Elizabeth; Martin-Khan, Melinda; Fielding, Elaine

2013-09-30

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.

Technology-based tools and services for people with dementia and carers: Mapping technology onto the dementia care pathway.

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Lorenz, Klara; Freddolino, Paul P; Comas-Herrera, Adelina; Knapp, Martin; Damant, Jacqueline

2017-01-01

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

Dementia Care: Confronting Myths in Clinical Management.

Science.gov (United States)

Neitch, Shirley M; Meadows, Charles; Patton-Tackett, Eva; Yingling, Kevin W

2016-01-01

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.

The role of higher education in transforming the quality of dementia care: dementia studies at the University of Bradford.

Science.gov (United States)

Downs, M; Capstick, A; Baldwin, P C; Surr, C; Bruce, E

2009-04-01

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.

SveDem, the Swedish Dementia Registry - a tool for improving the quality of diagnostics, treatment and care of dementia patients in clinical practice.

Directory of Open Access Journals (Sweden)

Dorota Religa

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.

The behaviours that dementia care home staff in South Africa find challenging: An exploratory study.

Science.gov (United States)

van Wyk, Adele; Manthorpe, Jill; Clark, Charlotte

2017-10-01

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.

Dementia prevalence, care arrangement, and access to care in Lebanon

DEFF Research Database (Denmark)

Phung, Kieu T T; Chaaya, Monique; Prince, Martin

2017-01-01

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...

Patient preferences for future care - how can Advance Care Planning become embedded into dementia care: a study protocol

Science.gov (United States)

2010-01-01

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

Patient preferences for future care - how can Advance Care Planning become embedded into dementia care: a study protocol

Directory of Open Access Journals (Sweden)

Exley Catherine

2010-01-01

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

Patient preferences for future care--how can Advance Care Planning become embedded into dementia care: a study protocol.

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Robinson, Louise; Bamford, Claire; Beyer, Fiona; Clark, Alexa; Dickinson, Claire; Emmet, Charlotte; Exley, Catherine; Hughes, Julian; Robson, Lesley; Rousseau, Nikki

2010-01-12

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

Comparison of dementia recorded in routinely collected hospital admission data in England with dementia recorded in primary care.

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Brown, Anna; Kirichek, Oksana; Balkwill, Angela; Reeves, Gillian; Beral, Valerie; Sudlow, Cathie; Gallacher, John; Green, Jane

2016-01-01

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.

Care pathways for dementia: current perspectives

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Samsi K

2014-11-01

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

Exploring experience and perspectives of foreign-born direct care workers in dementia care: Accounts of Korean American personal care aides caring for older Korean Americans with dementia symptoms.

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Lee, Sang E; Casado, Banghwa Lee; Hong, Michin

2018-05-01

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.

Dementia care mapping to support staff in the care of people with intellectual disability and dementia: a feasibility study

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Schaap, Feija; Dijkstra, Geke; Fokkens, Andrea; Reijneveld, Sijmen; Finnema, Evelyn

2018-01-01

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

Staff awareness of food and fluid care needs for older people with dementia in residential care: A qualitative study.

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Lea, Emma J; Goldberg, Lynette R; Price, Andrea D; Tierney, Laura T; McInerney, Fran

2017-12-01

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.

Where is God when dementia sneaks into our house? Practical theology and the partners of dementia patients

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Maria Bons-Storm

2016-05-01

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

Developing an educational intervention on dementia diagnosis and management in primary care for the EVIDEM-ED trial

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Iliffe Steve

2012-08-01

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

Innovative practice: Conversational use of English in bilingual adults with dementia.

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Kokorelias, Kristina M; Ryan, Ellen B; Elliot, Gail

2017-02-01

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.

Racial differences in dementia care among nursing home residents.

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Sengupta, Manisha; Decker, Sandra L; Harris-Kojetin, Lauren; Jones, Adrienne

2012-06-01

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.

'Who's actually gonna read this?' An evaluation of staff experiences of the value of information contained in written care plans in supporting care in three different dementia care settings.

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Drummond, C; Simpson, A

2017-08-01

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

Partners in Dementia Care: A Care Coordination Intervention for Individuals with Dementia and Their Family Caregivers

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Judge, Katherine S.; Bass, David M.; Snow, A. Lynn; Wilson, Nancy L.; Morgan, Robert; Looman, Wendy J.; McCarthy, Catherine; Kunik, Mark E.

2011-01-01

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…

Dressing disrupted: negotiating care through the materiality of dress in the context of dementia.

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Buse, Christina; Twigg, Julia

2018-02-01

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.

Dementia care mapping to support staff in the care of people with intellectual disability and dementia: a feasibility study.

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Schaap, Feija D; Fokkens, Andrea S; Dijkstra, Geke J; Reijneveld, Sijmen A; Finnema, Evelyn J

2018-04-24

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 impact of the Dementia ABC educational programme on competence in person-centred dementia care and job satisfaction of care staff.

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Rokstad, Anne Marie Mork; Døble, Betty Sandvik; Engedal, Knut; Kirkevold, Øyvind; Benth, Jūratė Šaltytė; Selbaek, Geir

2017-06-01

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

Sensory stimulation—A way of creating mutual relations in dementia care

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Else Lykkeslet

2014-07-01

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.

Sensory stimulation - a way of creating mutual relations in dementia care.

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Lykkeslet, Else; Gjengedal, Eva; Skrondal, Torill; Storjord, May-Britt

2014-01-01

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.

A consensus guideline for antipsychotic drug use for dementia in care homes. Bridging the gap between scientific evidence and clinical practice

NARCIS (Netherlands)

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

A consensus guideline for antipsychotic drug use for dementia in care homes. Bridging the gap between scientific evidence and clinical practice

NARCIS (Netherlands)

Zuidema, S.U.; Johansson, A; Selbaek, G.; Murray, M.; Burns, A.; Ballard, C.; Koopmans, R.T.C.M.

2015-01-01

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

Intimacy between care home residents with dementia: Findings from a review of the literature.

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Wiskerke, Esther; Manthorpe, Jill

2016-07-13

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.

A qualitative analysis of trainer/coach experiences of changing care home practice in the Well-being and Health in Dementia randomised control trial.

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Fossey, Jane; Garrod, Lucy; Guzman, Azucena; Testad, Ingelin

2018-01-01

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.

Knowledge gap regarding dementia care among nurses in Taiwanese acute care hospitals: A cross-sectional study.

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Lin, Pei-Chao; Hsieh, Mei-Hui; Chen, Meng-Chin; Yang, Yung-Mei; Lin, Li-Chan

2018-02-01

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.

[Benefits of aromatherapy in dementia special care units].

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Bilien, Corinne; Depas, Nathalie; Delaporte, Ghislaine; Baptiste, Nathalie

2016-01-01

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.

How are people with dementia involved in care-planning and decision-making? An Irish social work perspective.

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Donnelly, Sarah; Begley, Emer; O'Brien, Marita

2018-01-01

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

Connecting research discovery with care delivery in dementia: the development of the Indianapolis Discovery Network for Dementia

Directory of Open Access Journals (Sweden)

Boustani MA

2012-11-01

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

Ethical and cultural striving: Lived experiences of minority nurses in dementia care.

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Egede-Nissen, Veslemøy; Sellevold, Gerd Sylvi; Jakobsen, Rita; Sørlie, Venke

2017-09-01

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

Nurses' experience of caring for people with intellectual disability and dementia.

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Cleary, Josephine; Doody, Owen

2017-03-01

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.

Sensory stimulation-A way of creating mutual relations in dementia care

OpenAIRE

Lykkeslet, Else; Gjengedal, Eva; Skrondal, Torill Helene; Storjord, May-Britt

2014-01-01

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...

Meeting psychosocial needs for persons with dementia in home care services - a qualitative study of different perceptions and practices among health care providers.

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Hansen, Anette; Hauge, Solveig; Bergland, Ådel

2017-09-11

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.

Care staff training based on person-centered care and dementia care mapping, and its effects on the quality of life of nursing home residents with dementia.

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Yasuda, Mami; Sakakibara, Hisataka

2017-09-01

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.

The use of the truth and deception in dementia care amongst general hospital staff.

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Turner, Alex; Eccles, Fiona; Keady, John; Simpson, Jane; Elvish, Ruth

2017-08-01

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.

The repeated appeal to return home in older adults with dementia: developing a model for practice.

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Fukui, Sadaaki; Okada, Shinichi; Nishimoto, Yukio; Nelson-Becker, Holly B

2011-03-01

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.

Exploring dementia management attitudes in primary care: a key informant survey to primary care physicians in 25 European countries.

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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

2017-09-01

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.

The use of socially assistive robots for dementia care.

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Huschilt, Julie; Clune, Laurie

2012-10-01

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.

Is drug treatment for dementia followed up in primary care? A Swedish study of dementia clinics and referring primary care centres.

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Lars Sonde

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.

World Federation of Societies of Biological Psychiatry guidelines for the pharmacological treatment of dementias in primary care

DEFF Research Database (Denmark)

Ihl, Ralf; Bunevicius, Robertas; Frölich, Lutz

2015-01-01

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...

Everyday conversation in dementia: a review of the literature to inform research and practice

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Keady, John; Sage, Karen; Wilkinson, Ray

2016-01-01

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

Transforming dementia care in an NHS trust.

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Robinson, Jennifer; Longden, Jane; Murphy, Jayne

2015-02-01

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.

Feedback on end-of-life care in dementia: the study protocol of the FOLlow-up project.

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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

2013-08-07

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.

Cause, care, cure: research priorities for Alzheimer's disease and related dementias.

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Stolee, Paul; Hillier, Loretta M; Cook, Sheila; Rockwood, Kenneth

2011-12-01

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.

Towards good dementia care: Awareness and uptake of an online Dementia Pathways tool for rural and regional primary health practitioners.

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Ollerenshaw, Alison; Wong Shee, Anna; Yates, Mark

2018-04-01

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.

End-of-life care for advanced dementia patients in residential care home-a Hong Kong perspective.

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Luk, James K H; Chan, Felix H W

2017-08-28

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.

Nutrition and dementia care: developing an evidence-based model for nutritional care in nursing homes.

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Murphy, Jane L; Holmes, Joanne; Brooks, Cindy

2017-02-14

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.

Care dependency and nursing care problems in nursing home residents with and without dementia: a cross-sectional study.

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Schüssler, Sandra; Dassen, Theo; Lohrmann, Christa

2016-10-01

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.

Self-management-support in dementia care: A mixed methods study among nursing staff.

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Verkaik, Renate; van Antwerpen-Hoogenraad, Paulien; de Veer, Anke; Francke, Anneke; Huis In Het Veld, Judith

2017-11-01

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

Global music approach to persons with dementia: evidence and practice

Directory of Open Access Journals (Sweden)

Raglio A

2014-10-01

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

Insights Into Care Providers' Understandings of Life Story Work With Persons With Dementia: Findings From a Qualitative Study.

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Berendonk, Charlotte; Caine, Vera

2017-08-01

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.

Initial evaluation of the training programme for health care professionals on the use of Malaysian clinical practice guidelines for management of dementia.

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Yusoff, S; Koh, C T; Mohd Aminuddin, M Y; Krishnasamy, M; Suhaila, M Z

2013-09-01

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

The development of environmental assessment tools to support the creation of dementia friendly care environments: Innovative practice.

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Waller, Sarah; Masterson, Abigail; Evans, Simon C

2017-02-01

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.

Predicting dementia risk in primary care: development and validation of the Dementia Risk Score using routinely collected data.

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Walters, K; Hardoon, S; Petersen, I; Iliffe, S; Omar, R Z; Nazareth, I; Rait, G

2016-01-21

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

Seminar: Music Therapy in Dementia Care

DEFF Research Database (Denmark)

Ridder, Hanne Mette Ochsner

2009-01-01

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....

Reducing care-resistant behaviors during oral hygiene in persons with dementia

Directory of Open Access Journals (Sweden)

Jablonski Rita A

2011-11-01

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

Practical clinical tool to monitor dementia symptoms: the HABC-Monitor

Directory of Open Access Journals (Sweden)

Monahan PO

2012-06-01

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

Love, intimacy and sexuality in residential dementia care: A spousal perspective.

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Roelofs, Tineke Sm; Luijkx, Katrien G; Embregts, Petri Jcm

2017-01-01

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.

Everyday conversation in dementia: a review of the literature to inform research and practice.

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Kindell, Jacqueline; Keady, John; Sage, Karen; Wilkinson, Ray

2017-07-01

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

Using a book chat to improve attitudes and perceptions of long-term care staff about dementia.

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Larocque, Natasha; Schotsman, Chloe; Kaasalainen, Sharon; Crawshaw, Diane; McAiney, Carrie; Brazil, Emma

2014-05-01

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.

Evaluation of a nurse-led dementia education and knowledge translation programme in primary care: A cluster randomized controlled trial.

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Wang, Yao; Xiao, Lily Dongxia; Ullah, Shahid; He, Guo-Ping; De Bellis, Anita

2017-02-01

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.

"We're certainly not in our comfort zone": a qualitative study of GPs' dementia-care educational needs.

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Foley, Tony; Boyle, Siobhán; Jennings, Aisling; Smithson, W Henry

2017-05-22

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.

Models of home care services for persons with dementia: a narrative review.

Science.gov (United States)

Low, Lee-Fay; Fletcher, Jennifer

2015-10-01

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.

Case management considerations of progressive dementia in a home setting.

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Pierce, Mary Ellen

2010-01-01

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.

Specialist mental health consultation for depression in Australian aged care residents with dementia: a cluster randomized trial.

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McSweeney, Kate; Jeffreys, Aimee; Griffith, Joanne; Plakiotis, Chris; Kharsas, Renee; O'Connor, Daniel W

2012-11-01

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.

Care staff perspective on use of texture modified food in care home residents with dysphagia and dementia.

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Austbø Holteng, Lise Birgitte; Frøiland, Christina Tølbøl; Corbett, Anne; Testad, Ingelin

2017-10-01

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

Texture-modified food and fluids in dementia and residential aged care facilities

Directory of Open Access Journals (Sweden)

Painter V

2017-08-01

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

Caring for seniors living with dementia means caring for their caregivers too.

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Poirier, Annie; Voyer, Philippe; Légaré, France; Morin, Michèle; Witteman, Holly O; Kröger, Edeltraut; Martineau, Bernard; Rodríguez, Charo; Giguere, Anik Mc

2018-01-22

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.

Nonphysician Care Providers Can Help to Increase Detection of Cognitive Impairment and Encourage Diagnostic Evaluation for Dementia in Community and Residential Care Settings.

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Maslow, Katie; Fortinsky, Richard H

2018-01-18

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: journals.permissions@oup.com.

Practice development: providing benefits for both managers and older patients with delerium and dementia.

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Bezzant, Kim

2008-03-01

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.

Insight into dementia care management using social-behavioral theory and mixed methods.

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Connor, Karen; McNeese-Smith, Donna; van Servellen, Gwen; Chang, Betty; Lee, Martin; Cheng, Eric; Hajar, Abdulrahman; Vickrey, Barbara G

2009-01-01

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

Are Africans Susceptible to Dementia? Preliminary Reflections on Linguistic Behaviour in Aged Care and the Discourse in Xhosa of a Dementing White Bilingual.

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Makoni, Sinfree; Makoe, Pinky

1999-01-01

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…

Nursing home manager's knowledge, attitudes and beliefs about advance care planning for people with dementia in long-term care settings: a cross-sectional survey.

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Beck, Esther-Ruth; McIlfatrick, Sonja; Hasson, Felicity; Leavey, Gerry

2017-09-01

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

Integrated community-based dementia care: the Geriant model

Directory of Open Access Journals (Sweden)

Ludo Glimmerveen

2015-09-01

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. 

Global music approach to persons with dementia: evidence and practice.

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Raglio, Alfredo; Filippi, Stefania; Bellandi, Daniele; Stramba-Badiale, Marco

2014-01-01

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.

Features of the Japanese national dementia strategy in comparison with international dementia policies: How should a national dementia policy interact with the public health- and social-care systems?

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Nakanishi, Miharu; Nakashima, Taeko

2014-07-01

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.

The intersection of culture in the provision of dementia care: A systematic review.

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Brooke, Joanne; Cronin, Camille; Stiell, Marlon; Ojo, Omorogieva

2017-08-09

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

Staff's reactions towards partnered sexual expressions involving people with dementia living in long-term care facilities.

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Villar, Feliciano; Celdrán, Montserrat; Serrat, Rodrigo; Fabà, Josep; Martínez, Teresa

2018-05-01

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.

Arts-based and creative approaches to dementia care.

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McGreevy, Jessica

2016-02-01

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.

Focus on Dementia Care: Continuing Education Preferences, Challenges, and Catalysts among Rural Home Care Providers

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Kosteniuk, Julie G.; Morgan, Debra G.; O'Connell, Megan E.; Dal Bello-Haas, Vanina; Stewart, Norma J.

2016-01-01

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…

What can the treatment of Parkinson's disease learn from dementia care; applying a bio-psycho-social approach to Parkinson's disease.

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Gibson, Grant

2017-12-01

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

Advance directives for future dementia can be modified by a brief video presentation on dementia care: An experimental study.

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Theresia Volhard

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

Rational decision-making about treatment and care in dementia: a contradiction in terms?

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Wolfs, Claire A G; de Vugt, Marjolein E; Verkaaik, Mike; Haufe, Marc; Verkade, Paul-Jeroen; Verhey, Frans R J; Stevens, Fred

2012-04-01

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.

Effectiveness of person-centered care on people with dementia: a systematic review and meta-analysis

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Kim SK

2017-02-01

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

Perceived Challenges in Dementia Care by Vietnamese Family Caregivers and Care Workers in South Australia.

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Xiao, Lily Dongxia; Habel, Lesley; De Bellis, Anita

2015-09-01

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.

Psychosocial Practices that Enhance Cognitive Activity in Dementia

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Neslihan Lok

2014-09-01

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

Housing choices and care home design for people with dementia.

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Hadjri, Karim; Rooney, Cliona; Faith, Verity

2015-01-01

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.

Updating the Diagnosis and Management of Dementia. Practical Contributions in our Context

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Ángel Julio Romero Cabrera

2012-01-01

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.

Care and Service at Home for Persons With Dementia in Europe.

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Bökberg, Christina; Ahlström, Gerd; Leino-Kilpi, Helena; Soto-Martin, Maria E; Cabrera, Esther; Verbeek, Hilde; Saks, Kai; Stephan, Astrid; Sutcliffe, Caroline; Karlsson, Staffan

2015-09-01

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.

Person-centered care and engagement via technology of residents with dementia in aged care facilities.

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Goh, Anita M Y; Loi, Samantha M; Westphal, Alissa; Lautenschlager, Nicola T

2017-12-01

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.

Translation of the Care of Persons with Dementia in their Environments (COPE) intervention in a publicly-funded home care context: Rationale and research design.

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Fortinsky, Richard H; Gitlin, Laura N; Pizzi, Laura T; Piersol, Catherine Verrier; Grady, James; Robison, Julie T; Molony, Sheila

2016-07-01

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.

Dementia incidence trend over 1992-2014 in the Netherlands: Analysis of primary care data

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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.

2017-01-01

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

Dementia incidence trend over 1992-2014 in the Netherlands: Analysis of primary care data.

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Emma F van Bussel

2017-03-01

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

[Application of the Balance of Care model in decision-making regarding the best care for patients with dementia].

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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.

Attitudes to diagnosis and management in dementia care: views of future general practitioners.

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Tang, Eugene Yee Hing; Birdi, Ratika; Robinson, Louise

2018-03-01

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.

Current experiences and educational preferences of general practitioners and staff caring for people with dementia living in residential facilities.

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Beer, Christopher; Horner, Barbara; Almeida, Osvaldo P; Scherer, Samuel; Lautenschlager, Nicola T; Bretland, Nick; Flett, Penelope; Schaper, Frank; Flicker, Leon

2009-08-12

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

Current experiences and educational preferences of general practitioners and staff caring for people with dementia living in residential facilities

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Scherer Samuel

2009-08-01

, 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.

A co-design process developing heuristics for practitioners providing end of life care for people with dementia.

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Davies, Nathan; Mathew, Rammya; Wilcock, Jane; Manthorpe, Jill; Sampson, Elizabeth L; Lamahewa, Kethakie; Iliffe, Steve

2016-08-02

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

Impact of a person-centred dementia care training programme on hospital staff attitudes, role efficacy and perceptions of caring for people with dementia: A repeated measures study.

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Surr, C A; Smith, S J; Crossland, J; Robins, J

2016-01-01

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

Job strain: a cross-sectional survey of dementia care specialists and other staff in Swedish home care services.

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Sandberg, Linda; Borell, Lena; Edvardsson, David; Rosenberg, Lena; Boström, Anne-Marie

2018-01-01

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.

Dementia Diagnosis, Treatment, and Care in Specialist Clinics in Two Scandinavian Countries

DEFF Research Database (Denmark)

Fereshtehnejad, Seyed-Mohammad; Johannsen, Peter; Waldemar, Gunhild

2015-01-01

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...

A Diagnostic Model for Dementia in Clinical Practice-Case Methodology Assisting Dementia Diagnosis.

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Londos, Elisabet

2015-04-02

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.

Quality in dementia care: A cross sectional study on the Bio-Psycho-Social competencies of health care professionals.

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De Vriendt, Patricia; Cornelis, Elise; Desmet, Valerie; Vanbosseghem, Ruben; Van de Velde, Dominique

2018-01-01

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.

The impact of dementia on influenza vaccination uptake in community and care home residents.

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Shah, Sunil M; Carey, Iain M; Harris, Tess; DeWilde, Stephen; Cook, Derek G

2012-01-01

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.

Volunteering in dementia care – a Norwegian phenomenological study

Directory of Open Access Journals (Sweden)

Söderhamn U

2012-02-01

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

The 'ripple effect': Towards researching improvisational music therapy in dementia care homes.

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Pavlicevic, Mercédès; Tsiris, Giorgos; Wood, Stuart; Powell, Harriet; Graham, Janet; Sanderson, Richard; Millman, Rachel; Gibson, Jane

2015-09-01

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.

Care home design for people with dementia: What do people with dementia and their family carers value?

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Innes, Anthea; Kelly, Fiona; Dincarslan, Ozlem

2011-07-01

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.

A dementia care management intervention: which components improve quality?

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Chodosh, Joshua; Pearson, Marjorie L; Connor, Karen I; Vassar, Stefanie D; Kaisey, Marwa; Lee, Martin L; Vickrey, Barbara G

2012-02-01

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.

Dementia care and labour market: the role of job satisfaction.

NARCIS (Netherlands)

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.

2009-01-01

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,

Dementia Special Care Units in Residential Care Communities: United States, 2010

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... 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 ...

Invisible realities: Caring for older Moroccan migrants with dementia in Belgium.

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Berdai Chaouni, Saloua; De Donder, Liesbeth

2018-01-01

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.

Towards a Community-Based Dementia Care Strategy: A Perspective from Quebec.

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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.

Caring for people with dementia in residential aged care: successes with a composite person-centered care model featuring Montessori-based activities.

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Roberts, Gail; Morley, Catherine; Walters, Wendy; Malta, Sue; Doyle, Colleen

2015-01-01

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.

Promoting collaborative dementia care via online interprofessional education.

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Cartwright, Jade; Franklin, Diane; Forman, Dawn; Freegard, Heather

2015-06-01

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.

Perspectives of policy and political decision makers on access to formal dementia care: expert interviews in eight European countries.

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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

2017-08-03

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.

Evaluation of a WeChat-based dementia-specific training program for nurses in primary care settings: A randomized controlled trial.

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Wang, Feilong; Xiao, Lily Dongxia; Wang, Kaifa; Li, Min; Yang, Yanni

2017-12-01

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.

Everyday ethical problems in dementia care: a teleological model.

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Bolmsjö, Ingrid Agren; Edberg, Anna-Karin; Sandman, Lars

2006-07-01

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.

Predictors of activity involvement in dementia care homes: a cross-sectional study.

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Smit, Dieneke; de Lange, Jacomine; Willemse, Bernadette; Pot, Anne Margriet

2017-08-04

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.

Improving person-centred care in nursing homes through dementia-care mapping: design of a cluster-randomised controlled trial

Science.gov (United States)

2012-01-01

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

Improving person-centred care in nursing homes through dementia-care mapping: design of a cluster-randomised controlled trial

Directory of Open Access Journals (Sweden)

van de Ven Geertje

2012-01-01

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

Personal information documents for people with dementia: Healthcare staff 's perceptions and experiences.

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Baillie, Lesley; Thomas, Nicola

2018-01-01

Person-centred care is internationally recognised as best practice for the care of people with dementia. Personal information documents for people with dementia are proposed as a way to support person-centred care in healthcare settings. However, there is little research about how they are used in practice. The aim of this study was to analyse healthcare staff 's perceptions and experiences of using personal information documents, mainly Alzheimer's Society's 'This is me', for people with dementia in healthcare settings. The method comprised a secondary thematic analysis of data from a qualitative study, of how a dementia awareness initiative affected care for people with dementia in one healthcare organisation. The data were collected through 12 focus groups (n = 58 participants) and 1 individual interview, conducted with a range of healthcare staff, both clinical and non-clinical. There are four themes presented: understanding the rationale for personal information documents; completing personal information documents; location for personal information documents and transfer between settings; impact of personal information documents in practice. The findings illuminated how healthcare staff use personal information documents in practice in ways that support person-centred care. Practical issues about the use of personal information documents were revealed and these may affect the optimal use of the documents in practice. The study indicated the need to complete personal information documents at an early stage following diagnosis of dementia, and the importance of embedding their use across care settings, to support communication and integrated care.

Sense of competence in dementia care staff (SCIDS) scale: development, reliability, and validity.

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Schepers, Astrid Kristine; Orrell, Martin; Shanahan, Niamh; Spector, Aimee

2012-07-01

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.

Concepts of care for people with dementia

Directory of Open Access Journals (Sweden)

Greiner, Wolfgang

2009-01-01

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

Dementia-specific training for nursing home staff : A systematic literature review.

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Riesch, Julia; Meyer, Lucy; Lehr, Bosco; Severin, Thomas

2017-08-22

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.

Dementia - what to ask your doctor

Science.gov (United States)

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/ ...

Predictors of activity involvement in dementia care homes: a cross-sectional study

NARCIS (Netherlands)

D. Smit; Dr. J. de Lange; B. Willemse; A.M. Pot

2017-01-01

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

Associations between Race and Dementia Status and the Quality of End-of-Life Care.

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Luth, Elizabeth A; Prigerson, Holly G

2018-04-05

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

Collaborative project to co-ordinate care for patients with dementia.

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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

2011-05-01

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.

Survival analysis of increases in care needs associated with dementia and living alone among older long-term care service users in Japan.

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Lin, Huei-Ru; Otsubo, Tetsuya; Imanaka, Yuichi

2017-08-15

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.

After the Liverpool Care Pathway—development of heuristics to guide end of life care for people with dementia: protocol of the ALCP study

Science.gov (United States)

Davies, N; Manthorpe, J; Sampson, E L; Iliffe, S

2015-01-01

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

Job strain: a cross-sectional survey of dementia care specialists and other staff in Swedish home care services

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Sandberg L

2018-05-01

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

Music therapy in dementia care and neuro-rehabilitation

DEFF Research Database (Denmark)

Ridder, Hanne Mette Ochsner

2017-01-01

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...

Improving person-centred care in nursing homes through dementia-care mapping: design of a cluster-randomised controlled trial.

NARCIS (Netherlands)

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.

2012-01-01

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

The Experience of Paid Family-Care Workers of People with Dementia in South Korea

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Jungmin Kim, RN, MN

2018-03-01

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

Knowledge, Attitudes, and Clinical Practices for Patients With Dementia Among Mental Health Providers in China: City and Town Differences.

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Hsiao, Hsin-Yi; Liu, Zhaorui; Xu, Ling; Huang, Yueqin; Chi, Iris

2016-01-01

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.

[Treatment with psychotropic agents in patients with dementia and delirium : Gap between guideline recommendations and treatment practice].

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Hewer, Walter; Thomas, Christine

2017-02-01

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

Social representation and practices related to dementia in Hai District of Tanzania.

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Mushi, Declare; Rongai, Amen; Paddick, Stella-Maria; Dotchin, Catherine; Mtuya, Chauka; Walker, Richard

2014-03-19

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

Deconstructing Dementia and Delirium Hospital Practice: Using Cultural Historical Activity Theory to Inform Education Approaches

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Teodorczuk, Andrew; Mukaetova-Ladinska, Elizabeta; Corbett, Sally; Welfare, Mark

2015-01-01

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…

Decision-making experiences of family members of older adults with moderate dementia towards community and residential care home services: a grounded theory study protocol.

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Le Low, Lisa Pau; Lam, Lai Wah; Fan, Kim Pong

2017-06-05

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.

Non-adherence in seniors with dementia - a serious problem of routine clinical practice.

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Lužný, Jan; Ivanová, Kateřina; Juríčková, Lubica

2014-01-01

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.

Effect of horticultural therapy on wellbeing among dementia day care programme participants: A mixed-methods study (Innovative Practice).

Science.gov (United States)

Hall, Jodi; Mitchell, Gary; Webber, Catherine; Johnson, Karen

2016-04-11

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.

When is audit and feedback effective in dementia care? A systematic review.

Science.gov (United States)

Sykes, Michael J; McAnuff, Jennifer; Kolehmainen, Niina

2018-03-01

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

Dementia care in public health in Brazil and the world: A systematic review

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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.

Fall determinants in older long-term care residents with dementia: a systematic review.

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Kröpelin, Tobias F; Neyens, Jacques C L; Halfens, Ruud J G; Kempen, Gertrudis I J M; Hamers, Jan P H

2013-04-01

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.

Is big brother watching you? Responding to tagging and tracking in dementia care

OpenAIRE

Plastow, N A

2006-01-01

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. ...

Availability and Primary Health Care Orientation of Dementia-Related Services in Rural Saskatchewan, Canada.

Science.gov (United States)

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

2015-01-01

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.

Telegerontology as a Novel Approach to Address Health and Safety by Supporting Community-Based Rural Dementia Care Triads: Randomized Controlled Trial Protocol.

Science.gov (United States)

Wallack, Elizabeth M; Harris, Chelsea; Ploughman, Michelle; Butler, Roger

2018-02-22

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

Communication skills training in dementia care: a systematic review of effectiveness, training content, and didactic methods in different care settings.

Science.gov (United States)

Eggenberger, Eva; Heimerl, Katharina; Bennett, Michael I

2013-03-01

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.

Family caregivers' conceptualisation of quality end-of-life care for people with dementia: A qualitative study.

Science.gov (United States)

Davies, Nathan; Rait, Greta; Maio, Laura; Iliffe, Steve

2017-09-01

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.

A qualitative study of nurses' attitudes towards' and accommodations of patients' expressions of religiosity and faith in dementia care.

Science.gov (United States)

Skomakerstuen Ødbehr, Liv; Kvigne, Kari; Hauge, Solveig; Danbolt, Lars Johan

2015-02-01

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.

Evaluating the MESSAGE Communication Strategies in Dementia training for use with community-based aged care staff working with people with dementia: a controlled pretest-post-test study.

Science.gov (United States)

Conway, Erin R; Chenery, Helen J

2016-04-01

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

Mental and physical performance of dementia patients in long-term residential care

Directory of Open Access Journals (Sweden)

Zbigniew Śliwiński

2013-10-01

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

Development and evaluation of the content validity, practicability and feasibility of the Innovative dementia-oriented Assessment system for challenging behaviour in residents with dementia.

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Halek, Margareta; Holle, Daniela; Bartholomeyczik, Sabine

2017-08-14

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

Costs of care for dementia patients in community setting: an analysis for mild and moderate disease stage.

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Schwarzkopf, Larissa; Menn, Petra; Kunz, Simone; Holle, Rolf; Lauterberg, Jörg; Marx, Peter; Mehlig, Hilmar; Wunder, Sonja; Leidl, Reiner; Donath, Carolin; Graessel, Elmar

2011-01-01

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.

End-of-life care in general practice: A cross-sectional, retrospective survey of 'cancer', 'organ failure' and 'old-age/dementia' patients

NARCIS (Netherlands)

Evans, N.C.; Pasman, H.R.W.; Donker, G.A.; Deliens, L.; Block, L.; Onwuteaka-Philipsen, B.D.

2014-01-01

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

Community-Dwelling People Screened Positive for Dementia in Primary Care: A Comprehensive, Multivariate Descriptive Analysis Using Data from the DelpHi-Study.

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Thyrian, Jochen René; Eichler, Tilly; Michalowsky, Bernhard; Wucherer, Diana; Reimann, Melanie; Hertel, Johannes; Richter, Steffen; Dreier, Adina; Hoffmann, Wolfgang

2016-03-30

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.

Diagnostic evaluation of dementia in the secondary health care sector

DEFF Research Database (Denmark)

Phung, Thien Kieu Thi; Andersen, Birgitte Bo; Kessing, Lars Vedel

2009-01-01

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...

After the Liverpool Care Pathway--development of heuristics to guide end of life care for people with dementia: protocol of the ALCP study.

Science.gov (United States)

Davies, N; Manthorpe, J; Sampson, E L; Iliffe, S

2015-09-02

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.

NON-ADHERENCE IN SENIORS WITH DEMENTIA – A SERIOUS PROBLEM OF ROUTINE CLINICAL PRACTICE

Directory of Open Access Journals (Sweden)

Jan Lužný

2014-01-01

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.

The nutritional care of people living with dementia at home: A scoping review.

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Mole, Louise; Kent, Bridie; Abbott, Rebecca; Wood, Chloë; Hickson, Mary

2018-01-24

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

Determinants of job satisfaction in foreign domestic helpers caring for people with dementia in Hong Kong.

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Bai, Xue; Kwok, Timothy C Y; Chan, Natalie Y T; Ho, Florence K Y

2013-09-01

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.

Ethnoculturally-profiled care: Dementia caregiving targeted towards Middle Eastern immigrants living in Sweden.

Directory of Open Access Journals (Sweden)

Eleonor Antelius

2016-12-01

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.

Caring for dementia carers: the role of general practitioners in Ireland.

LENUS (Irish Health Repository)

O'Connor, C

2012-02-01

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.

Caring for dementia carers: the role of general practitioners in Ireland.

LENUS (Irish Health Repository)

O'Connor, C

2011-01-29

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.

Attachment and coping of dementia care staff: The role of staff attachment style, geriatric nursing self-efficacy, and approaches to dementia in burnout.

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Kokkonen, Taru-Maija; Cheston, Richard I L; Dallos, Rudi; Smart, Cordet A

2014-07-01

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.

The Experience of Paid Family-Care Workers of People with Dementia in South Korea.

Science.gov (United States)

Kim, Jungmin; De Bellis, Anita Marie; Xiao, Lily Dongxia

2018-03-01

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.

Consensus on quality indicators to assess the organisation of palliative cancer and dementia care applicable across national healthcare systems and selected by international experts.

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van Riet Paap, Jasper; Vernooij-Dassen, Myrra; Dröes, Rose-Marie; Radbruch, Lukas; Vissers, Kris; Engels, Yvonne

2014-09-17

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.

Strategies for diversity: medical clowns in dementia care - an ethnographic study

OpenAIRE

R?mg?rd, Margareta; Carlson, Elisabeth; Mangrio, Elisabeth

2016-01-01

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...

Family involvement in decision making for people with dementia in residential aged care: a systematic review of quantitative literature.

Science.gov (United States)

Petriwskyj, Andrea; Gibson, Alexandra; Parker, Deborah; Banks, Susan; Andrews, Sharon; Robinson, Andrew

2014-06-01

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.

The Intersection of Intellectual Disability and Dementia: Report of The International Summit on Intellectual Disability and Dementia.

Science.gov (United States)

Watchman, Karen; Janicki, Matthew P

2017-11-02

An International Summit on Intellectual Disability and Dementia, held in Glasgow, Scotland (October 13-14, 2016), drew individuals and representatives of numerous international and national organizations and universities with a stake in issues affecting adults with intellectual disability (ID) affected by dementia. A discussion-based consensus process was used to examine and produce a series of topical reports examining three main conceptual areas: (a) human rights and personal resources (applications of the Convention for Rights of People with Disabilities and human rights to societal inclusion, and perspectives of persons with ID), (b) individualized services and clinical supports (advancing and advanced dementia, post-diagnostic supports, community supports and services, dementia-capable care practice, and end-of-life care practices), and (c) advocacy, public impact, family caregiver issues (nomenclature/terminology, inclusion of persons with ID in national plans, and family caregiver issues). Outcomes included recommendations incorporated into a series of publications and topical summary bulletins designed to be international resources, practice guidelines, and the impetus for planning and advocacy with, and on behalf of, people with ID affected by dementia, as well as their families. The general themes of the conceptual areas are discussed and the main recommendations are associated with three primary concerns. © The Author 2017. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

Strengthening the dementia care triad: identifying knowledge gaps and linking to resources.

Science.gov (United States)

Jensen, Christine J; Inker, Jennifer

2015-05-01

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.

[Family members' experiences of caring for persons with dementia and outreach counseling--an interpretative phenomenological study].

Science.gov (United States)

Vögeli, Samuel; Frei, Irena Anna; Spichiger, Elisabeth

2016-01-01

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.

Horticultural therapy in dementia care: a literature review.

Science.gov (United States)

Blake, Marianne; Mitchell, Gary

2016-01-20

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.

Advance Care Planning in Dementia: Do Family Carers Know the Treatment Preferences of People with Early Dementia?

Directory of Open Access Journals (Sweden)

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.

Social care and support needs of community-dwelling people with dementia and concurrent visual impairment.

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Nyman, Samuel Robert; Innes, Anthea; Heward, Michelle

2017-09-01

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.

Family caregivers’ role implementation at different stages of dementia

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Huang, Huei-Ling; Shyu, Yea-Ing L; Chen, Min-Chi; Huang, Chin-Chang; Kuo, Hung-Chou; Chen, Sien-Tsong; Hsu, Wen-Chuin

2015-01-01

Purpose The purpose of this study was to explore family caregivers’ role-implementation experiences at different stages of dementia. Patients and methods For this cross-sectional, exploratory study, 176 dyads of family caregivers and their community-dwelling elderly relatives with dementia were recruited from the neurological clinics of a medical center in Taiwan. The Family Caregiving Inventory was used to assess family caregivers for caregiving activities, role strain, role preparation, and help from others at different stages of care receivers’ dementia. Results Family caregivers’ caregiving activities were related to patients’ stages of dementia. For patients with mild dementia, caregivers provided more assistance in transportation and housekeeping. In addition to these two activities, family caregivers of patients with moderate dementia provided more assistance with mobility and protection. For patients with severe dementia, family caregivers provided more assistance with personal care, mobility and protection, transportation, and housekeeping. Overall, family caregivers reported having some preparation to provide care; the most difficult caregiving activity was identified as managing behavioral problems. Conclusion This study’s results provide a knowledge base for designing dementia stage-specific interventions in clinical practice and developing community-based, long-term care systems for families of patients with dementia. PMID:25584022

Effectiveness of interventions to improve family-staff relationships in the care of people with dementia in residential aged care: a systematic review protocol.

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Nguyen, Mynhi; Pachana, Nancy A; Beattie, Elizabeth; Fielding, Elaine; Ramis, Mary-Anne

2015-11-01

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

Dementia in Palliative Care in the Seychelles´ Hospice

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Armando Carlos Roca Socarrás

2011-10-01

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.

Where is God when dementia sneaks into our house? Practical ...

African Journals Online (AJOL)

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 ...

Sexuality, aging, and dementia.

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Benbow, Susan Mary; Beeston, Derek

2012-07-01

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.

Predictors of change and continuity in home care for dementia patients

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Vernooy-Dassen, M.J.F.J.; Felling, A.J.A.; Persoon, J.M.G.

1997-01-01

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

Demographic and socio-economic influences on community-based care and caregivers of people with dementia in China

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Ruoling Chen

2016-06-01

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.

Long-term Care Nurses' Communication Difficulties with People Living with Dementia in Taiwan

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Jing-Jy Wang, PhD

2013-09-01

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.

Implementing the Namaste Care Program for residents with advanced dementia: exploring the perceptions of families and staff in UK care homes.

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Stacpoole, Min; Hockley, Jo; Thompsell, Amanda; Simard, Joyce; Volicer, Ladislav

2017-10-01

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

What is it to be a daughter? Identities under pressure in dementia care

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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

Dementia and family burden of care in Lebanon

DEFF Research Database (Denmark)

Chaaya, Monique; Phung, Kieu; Atweh, Samir

2017-01-01

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...

Building capacity and resilience in the dementia care workforce: a systematic review of interventions targeting worker and organizational outcomes.

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Elliott, Kate-Ellen J; Scott, Jennifer L; Stirling, Christine; Martin, Angela J; Robinson, Andrew

2012-06-01

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.

Screening of Dementia in Portuguese Primary Care: Methodology, Assessment Tools, and Main Results

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Laetitia Teixeira

2017-11-01

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.

Driving and dementia: Efficient approach to driving safety concerns in family practice.

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Lee, Linda; Molnar, Frank

2017-01-01

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.

[The experience of adult Korean children caring for parents institutionalized with dementia].

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Kwon, Suhye; Tae, Young Sook

2014-02-01

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.

Costs of Informal Care for People Suffering from Dementia: Evidence from a Danish Survey

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Marie Jakobsen

2011-11-01

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.

Dementia in Eastern Mediterranean countries: A systematic review.

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Yaghmour, Sara Mahmoud; Bartlett, Ruth; Brannelly, Tula

2018-01-01

Globally, there is an increase in the older population, whose lives are affected by local cultural norms. In Eastern Mediterranean countries, dementia is conventionally hidden from view with few dedicated services or recognition for diagnosis. The aim of this systematic review is to explore the limited literature on dementia and cognitive impairment among older people in Eastern Mediterranean countries to present an evaluation of current practices and to consolidate knowledge for future planning. Thirty-three studies were identified for inclusion in the review, and four themes were apparent. Firstly, prevalence, comorbidity and gender: In Eastern Mediterranean countries, many studies identify that the prevalence of dementia is high. As is the case elsewhere, many older adults in Eastern Mediterranean countries have at least one coexisting long-term condition, and some experience low life-satisfaction. Secondly, culture: In Eastern Mediterranean countries, the older adult is highly respected, and placement outside of the family home is considered an abandonment of family duty. The term dementia carries stigma, and it is widely believed that dementia is caused by 'fate'. Thirdly, recognition and tools: There is a lack of verified assessment instruments to assess for dementia. Despite concerns about the cultural appropriateness of the Mini-Mental State Exam, particularly for people who have low literacy levels, and low literacy being the norm in Eastern Mediterranean countries, the Mini-Mental State Examination is the main assessment instrument. Translation and transition of non-Arabic assessment instruments and tools with psychometric properties presents a challenge for clinicians. Finally, workforce issues: health care workers lack knowledge about dementia, as dementia care is a relatively recent addition to the nursing and medical syllabi. While there were some inconsistencies in the papers published, many of the articles call for increasing educational programmes

Deconstructing dementia and delirium hospital practice: using cultural historical activity theory to inform education approaches.

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Teodorczuk, Andrew; Mukaetova-Ladinska, Elizabeta; Corbett, Sally; Welfare, Mark

2015-08-01

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

Effectiveness of advance care planning with family carers in dementia nursing homes: A paired cluster randomized controlled trial.

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Brazil, Kevin; Carter, Gillian; Cardwell, Chris; Clarke, Mike; Hudson, Peter; Froggatt, Katherine; McLaughlin, Dorry; Passmore, Peter; Kernohan, W George

2018-03-01

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.

Impacts of Art Museum-Based Dementia Programming on Participating Care Partners

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Lamar, Katherine L.; Luke, Jessica J.

2016-01-01

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…

Implementation of a baby doll therapy protocol for people with dementia: Innovative practice.

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Braden, Barbara A; Gaspar, Phyllis M

2015-09-01

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.

Improving dementia care: The role of screening and detection of cognitive impairment

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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

2014-01-01

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

[Evaluation by case managers dementia : An explorative practice based study on types and content].

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Ketelaar, Nicole A B M; Jukema, Jan S; van Bemmel, Marlies; Adriaansen, Marian J M; Smits, Carolien H M

2017-06-01

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.

Silent and suffering: a pilot study exploring gaps between theory and practice in pain management for people with severe dementia in residential aged care facilities

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Peisah C

2014-10-01

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

Peculiarities in Dementia Treatment and Care in the Nursing Home

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Armando Carlos Roca Socarrás

2011-10-01

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.

We are not all coping: a cross?sectional investigation of resilience in the dementia care workforce

OpenAIRE

Elliott, Kate?Ellen J.; Stirling, Christine M.; Martin, Angela J.; Robinson, Andrew L.; Scott, Jennifer L.

2015-01-01

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...

Home is where the future is: The BrightFocus Foundation consensus panel on dementia care.

Science.gov (United States)

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

2018-01-01

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.

Digital life storybooks for people with dementia living in care homes: an evaluation

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Subramaniam P

2016-09-01

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

Supporting people who have dementia to die with dignity.

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Ryan, Tony; Ingleton, Christine; Gardiner, Clare; Nolan, Mike; Gott, Merryn

2009-06-01

This article highlights some of the key themes and challenges in the empirical, policy and clinical literature on end-of-life care for people with dementia. It is intended to promote critical discussion in this increasingly important area of policy and practice. The authors argue that end-of-life care for people with dementia should recognise the needs of the person and those of their family carers and staff involved.

Prediction of dementia in primary care patients.

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Frank Jessen

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.

Consensus Statement of the International Summit on Intellectual Disability and Dementia Related to End-of-Life Care in Advanced Dementia

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McCallion, Philip; Hogan, Mary; Santos, Flavia H.; McCarron, Mary; Service, Kathryn; Stemp, Sandy; Keller, Seth; Fortea, Juan; Bishop, Kathleen; Watchman, Karen; Janicki, Matthew P.

2017-01-01

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…

Advancing an Ethic of Embodied Relational Sexuality to Guide Decision-Making in Dementia Care.

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Grigorovich, Alisa; Kontos, Pia

2018-03-19

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.

Factors Concerning Veterans With Dementia, Their Caregivers, and Coordination of Care: A Systematic Literature Review.

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Mileski, Michael; Scott Kruse, Clemens; Brooks, Matthew; Haynes, Christine; Collingwood, Ying; Rodriguez, Rachel

2017-11-01

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

Systematic review: Effective home support in dementia care, components and impacts - Stage 2, effectiveness of home support interventions.

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Clarkson, Paul; Hughes, Jane; Roe, Brenda; Giebel, Clarissa M; Jolley, David; Poland, Fiona; Abendstern, Michele; Chester, Helen; Challis, David

2018-03-01

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.

Dementia registries around the globe and their applications: A systematic review.

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Krysinska, Karolina; Sachdev, Perminder S; Breitner, John; Kivipelto, Miia; Kukull, Walter; Brodaty, Henry

2017-09-01

Patient registries are valuable tools helping to address significant challenges in research, care, and policy. Registries, well embedded in many fields of medicine and public health, are relatively new in dementia. This systematic review presents the current situation in regards to dementia registries worldwide. We identified 31 dementia registries operating on an international, national, or local level between 1986 and 2016. More than half of the registries aimed to conduct or facilitate research, including preclinical research registries and registries recruiting research volunteers. Other dementia registries collected epidemiological or quality of care data. We present evidence of practical and economic outcomes of registries for research, clinical practice and policy, and recommendations for future development. Global harmonization of recruitment methods and minimum data would facilitate international comparisons. Registries provide a positive return on investment; their establishment and maintenance require ongoing support by government, policy makers, research funding bodies, clinicians, and individuals with dementia and their caregivers. Copyright © 2017 the Alzheimer's Association. All rights reserved.

Health Care Service Utilization of Dementia Patients before and after Institutionalization: A Claims Data Analysis

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Larissa Schwarzkopf

2014-06-01

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.

Quality dementia care: Prerequisites and relational ethics among multicultural healthcare providers.

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Sellevold, Gerd Sylvi; Egede-Nissen, Veslemøy; Jakobsen, Rita; Sørlie, Venke

2017-01-01

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.

Ethical challenges: Trust and leadership in dementia care.

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Jakobsen, Rita; Sørlie, Venke

2016-09-01

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.

Non-pharmacological approaches to alleviate distress in dementia care.

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Mitchell, Gary; Agnelli, Joanne

2015-11-25

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.

Evidence-Based Practice Guideline: Depression Detection in Older Adults With Dementia.

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Brown, Ellen Leslie; Raue, Patrick J; Halpert, Karen

2015-11-01

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.

Social-Professional Networks in Long-Term Care Settings With People With Dementia: An Approach to Better Care? A Systematic Review.

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Mitchell, Janet I; Long, Janet C; Braithwaite, Jeffrey; Brodaty, Henry

2016-02-01

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

Caregiver outcomes of partners in dementia care: effect of a care coordination program for veterans with dementia and their family members and friends.

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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

2013-08-01

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.

The Bromhead Care Home Service: the impact of a service for care home residents with dementia on hospital admission and dying in preferred place of care.

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Garden, Gill; Green, Suzanne; Pieniak, Susan; Gladman, John

2016-04-01

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.

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.

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Adams, Trevor

2008-12-10

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.

The Association between Quality Improvement Initiatives in Dementia Care and Supportive Psychosocial Work Environments in Nursing Homes.

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Nakanishi, Miharu; Tei-Tominaga, Maki

2018-05-08

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.

The Association between Quality Improvement Initiatives in Dementia Care and Supportive Psychosocial Work Environments in Nursing Homes

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Miharu Nakanishi

2018-05-01

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.

Translating knowledge into practice: An exploratory study of dementia-specific training for community-based service providers.

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O'Sullivan, Grace; Hocking, Clare; McPherson, Kathryn

2017-08-01

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.

Theoretical foundations guiding culture change: The work of the Partnerships in Dementia Care Alliance.

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Dupuis, Sherry; McAiney, Carrie A; Fortune, Darla; Ploeg, Jenny; Witt, Lorna de

2016-01-01

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.

Family caregiver challenges in dementia care in Australia and China: a critical perspective

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2014-01-01

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

Aquatic exercise for residential aged care adults with dementia: benefits and barriers to participation.

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Henwood, Timothy; Neville, Christine; Baguley, Chantelle; Beattie, Elizabeth

2017-09-01

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.

Utilization of legal and financial services of partners in dementia care study.

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Shrestha, Srijana; Judge, Katherine S; Wilson, Nancy L; Moye, Jennifer A; Snow, A Lynn; Kunik, Mark E

2011-03-01

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.

Neuroimaging in dementia

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Barkhof, Frederik [VU Univ. Medical Center, Amsterdam (NL). Dept. of Radiology and Image Analysis Center (IAC); Fox, Nick C. [UCL Institute of Neurology, London (United Kingdom). Dementia Research Centre; VU Univ. Medical Center, Amsterdam (Netherlands); Bastos-Leite, Antonio J. [Porto Univ. (Portugal). Dept. of Medical Imaging; Scheltens, Philip [VU Univ. Medical Center, Amsterdam (Netherlands). Dept. of Neurology and Alzheimer Center

2011-07-01

Against a background of an ever-increasing number of patients, new management options, and novel imaging modalities, neuroimaging is playing an increasingly important role in the diagnosis of dementia. This up-to-date, superbly illustrated book aims to provide a practical guide to the effective use of neuroimaging in the patient with cognitive decline. It sets out the key clinical and imaging features of the wide range of causes of dementia and directs the reader from clinical presentation to neuroimaging and on to an accurate diagnosis whenever possible. After an introductory chapter on the clinical background, the available ''toolbox'' of structural and functional neuroimaging techniques is reviewed in detail, including CT, MRI and advanced MR techniques, SPECT and PET, and image analysis methods. The imaging findings in normal ageing are then discussed, followed by a series of chapters that carefully present and analyze the key imaging findings in patients with dementias. A structured path of analysis follows the main presenting feature: disorders associated with primary gray matter loss, with white matter changes, with brain swelling, etc. Throughout, a practical approach is adopted, geared specifically to the needs of clinicians (neurologists, radiologists, psychiatrists, geriatricians) working in the field of dementia, for whom this book should prove an invaluable resource. (orig.)

Holding on while letting go: trauma and growth on the pathway of dementia care in families.

Science.gov (United States)

McCormack, Lynne; Tillock, Katrina; Walmsley, Bruce D

2017-06-01

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.

Consensus statement of the international summit on intellectual disability and Dementia related to post-diagnostic support.

Science.gov (United States)

Dodd, Karen; Watchman, Karen; Janicki, Matthew P; Coppus, Antonia; Gaertner, Claudia; Fortea, Juan; Santos, Flavia H; Keller, Seth M; Strydom, Andre

2017-09-07

Post diagnostic support (PDS) has varied definitions within mainstream dementia services and different health and social care organizations, encompassing a range of supports that are offered to adults once diagnosed with dementia until death. An international summit on intellectual disability and dementia held in Glasgow, Scotland in 2016 identified how PDS applies to adults with an intellectual disability and dementia. The Summit proposed a model that encompassed seven focal areas: post-diagnostic counseling; psychological and medical surveillance; periodic reviews and adjustments to the dementia care plan; early identification of behaviour and psychological symptoms; reviews of care practices and supports for advanced dementia and end of life; supports to carers/ support staff; and evaluation of quality of life. It also explored current practices in providing PDS in intellectual disability services. The Summit concluded that although there is limited research evidence for pharmacological or non-pharmacological interventions for people with intellectual disability and dementia, viable resources and guidelines describe practical approaches drawn from clinical practice. Post diagnostic support is essential, and the model components in place for the general population, and proposed here for use within the intellectual disability field, need to be individualized and adapted to the person's needs as dementia progresses. Recommendations for future research include examining the prevalence and nature of behavioral and psychological symptoms (BPSD) in adults with an intellectual disability who develop dementia, the effectiveness of different non-pharmacological interventions, the interaction between pharmacological and non-pharmacological interventions, and the utility of different models of support.

Decision Trajectories in Dementia Care Networks: Decisions and Related Key Events.

Science.gov (United States)

Groen-van de Ven, Leontine; Smits, Carolien; Oldewarris, Karen; Span, Marijke; Jukema, Jan; Eefsting, Jan; Vernooij-Dassen, Myrra

2017-10-01

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.

Caring for people with dementia disease (DD) and working in a private not-for-profit residential care facility for people with DD.

Science.gov (United States)

Ericson-Lidman, Eva; Larsson, Lise-Lotte Franklin; Norberg, Astrid

2014-06-01

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.

Health Policy and Dementia.

Science.gov (United States)

Powell, Tia

2018-02-01

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.

The impact of organisational culture on the delivery of person-centred care in services providing respite care and short breaks for people with dementia.

Science.gov (United States)

Kirkley, Catherine; Bamford, Claire; Poole, Marie; Arksey, Hilary; Hughes, Julian; Bond, John

2011-07-01

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

Citizenship as practice: Handling communication problems in encounters between persons with dementia and social workers.

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Jh, Österholm; L-C, Hydén

2016-11-01

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.

Effective Dementia Education and Training for the Health and Social Care Workforce: A Systematic Review of the Literature.

Science.gov (United States)

Surr, Claire A; Gates, Cara; Irving, Donna; Oyebode, Jan; Smith, Sarah Jane; Parveen, Sahdia; Drury, Michelle; Dennison, Alison

2017-10-01

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.

Role of Advance Care Planning in Proxy Decision Making Among Individuals With Dementia and Their Family Caregivers.

Science.gov (United States)

Kwak, Jung; De Larwelle, Jessica A; Valuch, Katharine O'Connell; Kesler, Toni

2016-01-01

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.

Developing relationships between care staff and people with dementia through Music Therapy and Dance Movement Therapy: A preliminary phenomenological study.

Science.gov (United States)

Melhuish, Ruth; Beuzeboc, Catherine; Guzmán, Azucena

2017-04-01

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.

Can We Help Care Providers Communicate More Effectively With Persons Having Dementia Living in Long-Term Care Homes?

Science.gov (United States)

Rochon, Elizabeth; Sidani, Souraya; Shaw, Alexander; Ben-David, Boaz M.; Saragosa, Marianne; Boscart, Veronique M.; Wilson, Rozanne; Galimidi-Epstein, Karmit K.

2016-01-01

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

Inequalities in Access to Treatment and Care for Patients with Dementia and Immigrant Background

DEFF Research Database (Denmark)

Stevnsborg, Lea; Jensen-Dahm, Christina; Nielsen, Thomas R

2016-01-01

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...

[Dementia and depression determine care dependency in Parkinson's disease: analysis of 1,449 outpatients receiving nursing care in Germany].

Science.gov (United States)

Riedel, O; Dodel, R; Deuschl, G; Förstl, H; Henn, F; Heuser, I; Oertel, W; Reichmann, H; Riederer, P; Trenkwalder, C; Wittchen, H U

2011-08-01

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.

Implementing Montessori Methods for Dementia™ in Ontario long-term care homes: Recreation staff and multidisciplinary consultants' perceptions of policy and practice issues.

Science.gov (United States)

Ducak, Kate; Denton, Margaret; Elliot, Gail

2018-01-01

Montessori-based activities use a person-centred approach to benefit persons living with dementia by increasing their participation in, and enjoyment of, daily life. This study investigated recreation staff and multidisciplinary consultants' perceptions of factors that affected implementing Montessori Methods for Dementia™ in long-term care homes in Ontario, Canada. Qualitative data were obtained during semi-structured telephone interviews with 17 participants who worked in these homes. A political economy of aging perspective guided thematic data analysis. Barriers such as insufficient funding and negative attitudes towards activities reinforced a task-oriented biomedical model of care. Various forms of support and understanding helped put Montessori Methods for Dementia™ into practice as a person-centred care program, thus reportedly improving the quality of life of residents living with dementia, staff and family members. These results demonstrate that when Montessori Methods for Dementia™ approaches are learned and understood by staff they can be used as practical interventions for long-term care residents living with dementia.

Social health and dementia: a European consensus on the operationalization of the concept and directions for research and practice.

Science.gov (United States)

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

2017-01-01

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.

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

NARCIS (Netherlands)

Zwijsen, S.A.; Gerritsen, D.L.; Eefsting, J.A.; Smalbrugge, M.; Hertogh, C.M.P.M.; Pot, A.M.

2015-01-01

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

NARCIS (Netherlands)

Zwijsen, S.A.; Gerritsen, D.L.; Eefsting, J.A.; Smalbrugge, M.; Hertogh, C.M.; Pot, A.M.

2015-01-01

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

Evaluation of a Telephone-Delivered, Community-Based Collaborative Care Management Program for Caregivers of Older Adults with Dementia.

Science.gov (United States)

Mavandadi, Shahrzad; Wray, Laura O; DiFilippo, Suzanne; Streim, Joel; Oslin, David

2017-09-01

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.

Self-perceived competence among medical residents in skills needed to care for patients with advanced dementia versus metastatic cancer.

Science.gov (United States)

Manu, Erika; Marks, Adam; Berkman, Cathy S; Mullan, Patricia; Montagnini, Marcos; Vitale, Caroline A

2012-06-01

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.

Detection of dementia in primary care: comparison of the original and a modified Mini-Cog Assessment with the Mini-Mental State Examination.

Science.gov (United States)

Kamenski, Gustav; Dorner, Thomas; Lawrence, Kitty; Psota, Georg; Rieder, Anita; Schwarz, Franz; Sepandj, Asita; Spiegel, Wolfgang; Strotzka, Stefan

2009-12-01

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.

Utilisation of formal and informal care and services at home among persons with dementia: a cross-sectional study.

Science.gov (United States)

Bökberg, Christina; Ahlström, Gerd; Karlsson, Staffan

2017-09-04

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.

Decreasing spatial disorientation in care-home settings: How psychology can guide the development of dementia friendly design guidelines.

Science.gov (United States)

O'Malley, Mary; Innes, Anthea; Wiener, Jan M

2017-04-01

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.

Exploring the impact of music concerts in promoting well-being in dementia care.

Science.gov (United States)

Shibazaki, Kagari; Marshall, Nigel A

2017-05-01

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.

The cost of care homes for people with dementia in England: a modelling approach.

Science.gov (United States)

Romeo, Renee; Knapp, Martin; Salverda, Suzanne; Orrell, Martin; Fossey, Jane; Ballard, Clive

2017-12-01

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.

Who Is Responsible? A Man With Dementia Wanders From Home, Is Hit by a Train, and Dies.

Science.gov (United States)

Young, Yuchi; Papenkov, Maksim; Nakashima, Taeko

2018-07-01

The impact of dementia and Alzheimer's disease extends far beyond the healthcare needs of the person with dementia. As the disease progresses, individuals with dementia often require ongoing formal or informal care for their basic daily routine because of behavior changes and continuing loss of cognitive function. Most of the care for people with dementia takes place at home, and the unpaid, informal caregivers are often spouses or other relatives. Providing long-term informal care at home for someone with dementia is psychologically, physically, and financially draining. The tragedy described in this case elucidates the far-reaching societal impact of dementia care and the implicit health policy considerations. In 2007, a 91-year-old Japanese man with dementia was in the care of his wife when he wandered from home, was hit by a train, and died, immediately affecting the Central Japan Railway Company operations and, subsequently, legal practice as well as Japanese elder care policy. The railway sued the man's wife and son for negligence and lost revenue, winning both trials at the local and district courts. This ruling shocked families and caregivers in Japan, where care for elderly parents traditionally falls on the oldest son, and brought attention to the complex issues related to dementia care. A decade later, we revisit this case to provoke a renewed dialogue about the matrix of responsibilities and liabilities associated with caregiving; to illuminate the unmet needs of the person with dementia, as well as his or her informal caregivers; and the financial implications related to long-term care policy. We close with 2 practical suggestions which preserve the dignity of the individual and provide reassurance for caregivers. Copyright © 2018 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.

The experience of providing end-of-life care to a relative with advanced dementia: an integrative literature review.

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Peacock, Shelley C

2013-04-01

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.

Development of a Curriculum for Long-Term Care Nurses to Improve Recognition of Depression in Dementia

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Williams, Christine L.; Molinari, Victor; Bond, Jennifer; Smith, Michael; Hyer, Kathryn; Malphurs, Julie

2006-01-01

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…

The development and evaluation of an online dementia resource for primary care based health professionals

Directory of Open Access Journals (Sweden)

Aisling A. Jennings

2018-03-01

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.

SAIDO learning as a cognitive intervention for dementia care: a preliminary study.

Science.gov (United States)

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

2015-01-01

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.

Hearing and vision screening tools for long-term care residents with dementia: protocol for a scoping review

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McGilton, Katherine S; Höbler, Fiona; Campos, Jennifer; Dupuis, Kate; Labreche, Tammy; Guthrie, Dawn M; Jarry, Jonathan; Singh, Gurjit; Wittich, Walter

2016-01-01

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

Health Services Utilization in Older Adults with Dementia Receiving Care Coordination: The MIND at Home Trial.

Science.gov (United States)

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

2018-02-01

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.

Development of an international schedule for the assessment and staging of care for dementia

NARCIS (Netherlands)

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.

2015-01-01

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,

Japanese care workers' perception of dementia-related physically and psychologically aggressive behaviour symptoms.

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Hirata, Hiromi; Harvath, Theresa A

2017-03-01

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

Integrating unmet needs into dementia health-related quality of life research and care: Introduction of the Hierarchy Model of Needs in Dementia.

Science.gov (United States)

Scholzel-Dorenbos, Carla J M; Meeuwsen, Els J; Olde Rikkert, Marcel G M

2010-01-01

To make an inventory of needs assessment instruments in dementia, to explore the interaction between unmet needs and health-related quality of life (HRQoL) and to relate these to the conceptual model of Maslow's Hierarchy of needs in order to design a dementia-specific model. Narrative review of literature on (measures of) needs of patients and caregivers and HRQoL determinants important in dementia. Relating these needs to individual goal setting instruments and Maslow's Hierarchy of needs model. The Camberwell Assessment of Needs for the Elderly (CANE) turns out to be a valid tool to assess needs of dementia patients, suitable for research and clinical use. The Carers' Needs Assessment for Dementia (CNA-D) is a valid instrument to assess needs of caregivers. Patients identified significantly fewer needs than (in)formal caregivers. The most important needs, that also determine large part of HRQoL, are need for information; support with regard to symptoms of dementia; social contact and company; and for health monitoring and safety. Goal attainment scaling in dementia is an important but not yet valid outcome measure, with only few data on feasibility in dementia patients. There are several instruments to assess needs of dementia patients and caregivers. Domains of unmet needs and HRQoL overlap. The Hierarchy Model of Needs in Dementia (HMND) offers a new theoretical framework to address the interplay between meeting of needs and improvement of HRQoL in dementia. By identifying unmet needs in dementia-research and focussing on unmet needs in dementia-care, much can be done to improve HRQoL.

Can an EASYcare based dementia training programme improve diagnostic assessment and management of dementia by general practitioners and primary care nurses? The design of a randomised controlled trial

Directory of Open Access Journals (Sweden)

Lucassen PL

2008-04-01

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

Family solidarity and informal care: the case of care for people with dementia.

Science.gov (United States)

ter Meulen, Ruud; Wright, Katharine

2012-09-01

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.

The Cost of Dementia in Denmark

DEFF Research Database (Denmark)

Kronborg Andersen, C; Søgaard, Jes; Hansen, E

1999-01-01

In a population-based study of dementia, the cost of care for 245 demented elderly and 490 controls matched by age and gender was estimated. Dementia of Alzheimer's type was diagnosed according to the NINCDS-ADRDA criteria, and vascular dementia and other types of dementia were diagnosed accordin...... with dementia and the matched controls and amounts on average to DKK 77,000 per person per year. However, priority setting cannot be based on the cost of dementia per se, but only on the cost of a specific dementia intervention compared to its health benefit.......In a population-based study of dementia, the cost of care for 245 demented elderly and 490 controls matched by age and gender was estimated. Dementia of Alzheimer's type was diagnosed according to the NINCDS-ADRDA criteria, and vascular dementia and other types of dementia were diagnosed according...... to the DSM-IIIR criteria. Severity of dementia was determined by the Clinical Dementia Rating scale. The annual cost of medical care, domestic care, home help, nursing home and special equipment for nondemented patients was DKK 22,000 per person while the cost for very mildly, mildly, moderately and severely...

Reduction in Fall Rate in Dementia Managed Care Through Video Incident Review: Pilot Study.

Science.gov (United States)

Bayen, Eleonore; Jacquemot, Julien; Netscher, George; Agrawal, Pulkit; Tabb Noyce, Lynn; Bayen, Alexandre

2017-10-17

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.

Pain management in patients with dementia

Directory of Open Access Journals (Sweden)

Achterberg WP

2013-11-01

Full Text Available Wilco P Achterberg,1 Marjoleine JC Pieper,2 Annelore H van Dalen-Kok,1 Margot WM de Waal,1 Bettina S Husebo,3 Stefan Lautenbacher,4 Miriam Kunz,4 Erik JA Scherder,5 Anne Corbett6 1Department of Public Health and Primary Care, Leiden University Medical Center, Leiden, 2Department of General Practice and Elderly Care Medicine, VU University Medical Center Amsterdam, Amsterdam, The Netherlands; 3Department of Global Public Health and Primary Care, University of Bergen, Bergen, Norway; 4Physiological Psychology, Otto Friedrich University Bamberg, Bamberg, Germany; 5Department of Clinical Neuropsychology, VU University Amsterdam, Amsterdam, The Netherlands; 6Wolfson Centre for Age-Related Diseases, King's College London, London, UK Abstract: There are an estimated 35 million people with dementia across the world, of whom 50% experience regular pain. Despite this, current assessment and treatment of pain in this patient group are inadequate. In addition to the discomfort and distress caused by pain, it is frequently the underlying cause of behavioral symptoms, which can lead to inappropriate treatment with antipsychotic medications. Pain also contributes to further complications in treatment and care. This review explores four key perspectives of pain management in dementia and makes recommendations for practice and research. The first perspective discussed is the considerable uncertainty within the literature on the impact of dementia neuropathology on pain perception and processing in Alzheimer's disease and other dementias, where white matter lesions and brain atrophy appear to influence the neurobiology of pain. The second perspective considers the assessment of pain in dementia. This is challenging, particularly because of the limited capacity of self-report by these individuals, which means that assessment relies in large part on observational methods. A number of tools are available but the psychometric quality and clinical utility of these are

Dementia case-finding in hospitals: a qualitative study exploring the views of healthcare professionals in English primary care and secondary care.

Science.gov (United States)

Burn, Anne-Marie; Fleming, Jane; Brayne, Carol; Fox, Chris; Bunn, Frances

2018-03-17

In 2012-2013, the English National Health Service mandated hospitals to conduct systematic case-finding of people with dementia among older people with unplanned admissions. The method was not defined. The aim of this study was to understand current approaches to dementia case-finding in acute hospitals in England and explore the views of healthcare professionals on perceived benefits and challenges. Qualitative study involving interviews, focus groups and thematic content analysis. Primary care and secondary care across six counties in the East of England. Hospital staff involved in dementia case-finding and primary care staff in the catchment areas of those hospitals. We recruited 23 hospital staff and 36 primary care staff, including 30 general practitioners (GPs). Analysis resulted in three themes: (1) lack of consistent approaches in case-finding processes, (2) barriers between primary care and secondary care which impact on case-finding outcomes and (3) perceptions of rationale, aims and impacts of case-finding. The study shows that there were variations in how well hospitals recorded and reported outcomes to GPs. Barriers between primary care and secondary care, including GPs' lack of access to hospital investigations and lack of clarity about roles and responsibilities, impacted case-finding outcomes. Staff in secondary care were more positive about the initiative than primary care staff, and there were conflicting priorities for primary care and secondary care regarding case-finding. The study suggests a more evidence-based approach was needed to justify approaches to dementia case-finding. Information communicated to primary care from hospitals needs to be comprehensive, appropriate and consistent before GPs can effectively plan further investigation, treatment or care. Follow-up in primary care further requires access to options for postdiagnostic support. There is a need to evaluate the outcomes for patients and the economic impact on health and care

Doll Therapy in Dementia Care Mitchell Gary Doll Therapy in Dementia Care 136pp £17.99 Jessica Kingsley 9781849055703 184905570X [Formula: see text].

Science.gov (United States)

2017-06-30

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.

Reliability and validity of the international dementia alliance schedule for the assessment and staging of care in China.

Science.gov (United States)

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

2017-11-21

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.

A scoping review of crisis teams managing dementia in older people.

Science.gov (United States)

Streater, Amy; Coleston-Shields, Donna Maria; Yates, Jennifer; Stanyon, Miriam; Orrell, Martin

2017-01-01

Research on crisis teams for older adults with dementia is limited. This scoping review aimed to 1) conduct a systematic literature review reporting on the effectiveness of crisis interventions for older people with dementia and 2) conduct a scoping survey with dementia crisis teams mapping services across England to understand operational procedures and identify what is currently occurring in practice. For the systematic literature review, included studies were graded using the Critical Appraisal Skills Programme checklist. For the scoping survey, Trusts across England were contacted and relevant services were identified that work with people with dementia experiencing a mental health crisis. The systematic literature review demonstrated limited evidence in support of crisis teams reducing the rate of hospital admissions, and despite the increase in number of studies, methodological limitations remain. For the scoping review, only half (51.8%) of the teams had a care pathway to manage crises and the primary need for referral was behavioral or psychological factors. Evidence in the literature for the effectiveness of crisis teams for older adults with dementia remains limited. Being mainly cohort designs can make it difficult to evaluate the effectiveness of the intervention. In practice, it appears that the pathway for care managing crisis for people with dementia varies widely across services in England. There was a wide range of names given to the provision of teams managing crisis for people with dementia, which may reflect the differences in the setup and procedures of the service. To provide evidence on crisis intervention teams, a comprehensive protocol is required to deliver a standardized care pathway and measurable intervention as part of a large-scale evaluation of effectiveness.

Music as a health promoting agent in dementia care. Results from a Norwegian/Danish context

DEFF Research Database (Denmark)

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...

Determinants of Dropout and Nonadherence in a Dementia Prevention Randomized Controlled Trial: The Prevention of Dementia by Intensive Vascular Care Trial.

Science.gov (United States)

Beishuizen, Cathrien R L; Coley, Nicola; Moll van Charante, Eric P; van Gool, Willem A; Richard, Edo; Andrieu, Sandrine

2017-07-01

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

Optimizing Patient Care and Research: The Amsterdam Dementia Cohort

NARCIS (Netherlands)

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.

2014-01-01

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

Neuroimaging in dementia and Alzheimer's disease: Current protocols and practice in the Republic of Ireland

International Nuclear Information System (INIS)

Kelly, I.; Butler, M.-L.; Ciblis, A.; McNulty, J.P.

2016-01-01

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

Constructing togetherness throughout the phases of dementia: a qualitative study exploring how spouses maintain relationships with partners with dementia who live in institutional care.

Science.gov (United States)

Førsund, Linn Hege; Kiik, Riina; Skovdahl, Kirsti; Ytrehus, Siri

2016-10-01

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.

Dementia-Related Work Activities of Home Care Nurses and Aides: Frequency, Perceived Competence, and Continuing Education Priorities

Science.gov (United States)

Morgan, Debra G.; Kosteniuk, Julie G.; O'Connell, Megan E.; Dal Bello-Haas, Vanina; Stewart, Norma J.; Karunanayake, Chandima

2016-01-01

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…

Family Caregivers' Experiences of Caring for a Relative With Younger Onset Dementia: A Qualitative Systematic Review.

Science.gov (United States)

Cabote, Christy Joy; Bramble, Marguerite; McCann, Damhnat

2015-08-01

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.

Multi-sensory stimulation in 24-hour dementia care: effects of snoezelen on residents and caregivers.

NARCIS (Netherlands)

Weert, J. van; Dulmen, S. van; Bensing, J.

2011-01-01

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

Multi-sensory stimulation in 24-hour dementia care: effects of snoezelen on residents and caregivers