Health and Social Care in the Community, 25(2), 2017, pp.734-742.
Publisher:
Wiley
Despite the rapidly ageing population and a predicted sevenfold increase in the prevalence of dementia in minority ethnic communities, people from these communities remain under-represented in specialist dementia services. Leventhal's Model of Self-Regulation suggests perceptions of illness facilitate help-seeking behaviours such as the use of services. This scoping exercise makes use...
(Publisher abstract)
Despite the rapidly ageing population and a predicted sevenfold increase in the prevalence of dementia in minority ethnic communities, people from these communities remain under-represented in specialist dementia services. Leventhal's Model of Self-Regulation suggests perceptions of illness facilitate help-seeking behaviours such as the use of services. This scoping exercise makes use of the model to explore perceptions of dementia in British Indian, African and Caribbean, and East and Central European communities in the United Kingdom. Between August 2013 and April 2014, culturally specific dementia awareness roadshows were attended by people living with dementia, carers and members of the public. During the roadshows, 62 British Indian, 50 African and Caribbean, and 63 East and Central European attenders participated in discussion groups and a dementia knowledge quiz. Thematic and framework analysis were conducted on the discussion group data. Three main themes are presented: Perceptions of dementia, awareness of dementia in the wider family and community, and awareness and use of services. The findings suggest that although groups attributed a biological basis for memory loss, a number of misconceptions prevailed regarding the cause of dementia. Groups also made use of religion, as opposed to medical healthcare services, as a form of personal and treatment control. Seeking help from healthcare services was hindered by lack of awareness of services, and culturally specific barriers such as language. The findings have a number of implications for policy and practice including the development of public health interventions and the need to focus further on reducing barriers to accessing services.
(Publisher abstract)
Subject terms:
dementia, black and minority ethnic people, ethnicity, attitudes, service uptake;
This briefing paper draws on current research on minority ethnic carers of people living with dementia and highlights implications for policy and practice. It focuses on five areas: the assumption that all minority ethnic carers feel culturally obliged to provide care; the nature of family care in minority ethnic communities; access to health service support for carers from minority ethnic...
(Edited publisher abstract)
This briefing paper draws on current research on minority ethnic carers of people living with dementia and highlights implications for policy and practice. It focuses on five areas: the assumption that all minority ethnic carers feel culturally obliged to provide care; the nature of family care in minority ethnic communities; access to health service support for carers from minority ethnic communities; carer coping strategies; and the negative impact of caregiving for minority ethnic carers. The briefing demonstrates that ethnicity has a strong influence on the experience of supporting a relative with dementia, affecting access to services, patterns of family care, service use, ways of coping and well-being. It concludes that policymakers, commissioners and service providers need to recognise the importance of providing culturally suitable services to support carers of people with dementia.
(Edited publisher abstract)
Subject terms:
dementia, black and minority ethnic people, carers, literature reviews, coping behaviour, access to services, cultural identity;
Dementia: the International Journal of Social Research and Practice, 11(5), September 2012, pp.677-693.
Publisher:
Sage
More than a decade ago, the Alzheimer’s Society estimated that one third of people with dementia lived alone. Despite this, there has been little research exploring how these individuals manage their identities and cope with dementia. This study explored how women who live alone with dementia see themselves and how they cope in their day-to-day lives, in the absence of someone to reflect...
More than a decade ago, the Alzheimer’s Society estimated that one third of people with dementia lived alone. Despite this, there has been little research exploring how these individuals manage their identities and cope with dementia. This study explored how women who live alone with dementia see themselves and how they cope in their day-to-day lives, in the absence of someone to reflect their identities back to them, and to help them with day-to-day living. Eight English women (75-95 years) with Alzheimer’s Disease and/or mixed vascular dementia were interviewed. Four overarching themes were identified; living with a changing sense of self; a fluctuating awareness of memory problems; seeking sanctuary versus risking danger; and being with others, connection versus disconnection. Through interpretative phenomenological analysis topics emerged about loss, embodiment, adapting, awareness, safety, relationships, exclusion and loneliness. The majority of women were widowed and many mourned the loss of their husbands and past selves as wives, professionals, mothers and independent adults. Memory loss had the most significant impact through loss of independence. However, the women were actively engaged in re-constructing their sense of self, using a variety of coping strategies. Relationships with friends, neighbours and attendance at memory clubs were important. A search for meaningful relationships was apparent, conflicting with feeling vulnerable and a consequent desire for self protection.
Subject terms:
self-concept, social networks, user views, women, Alzheimers disease, coping behaviour, dementia;
Dementia: the International Journal of Social Research and Practice, 18(1), 2019, pp.8-35.
Publisher:
Sage
An influential review in 2010 concluded that non-pharmacological multi-component interventions have positive effects on cognitive functioning, activities of daily living, behaviour and mood of people with dementia. Our aim here is to provide an up-to-date overview of research into psychosocial interventions and their impact on psychosocial outcomes. We focused on randomised controlled trials...
(Edited publisher abstract)
An influential review in 2010 concluded that non-pharmacological multi-component interventions have positive effects on cognitive functioning, activities of daily living, behaviour and mood of people with dementia. Our aim here is to provide an up-to-date overview of research into psychosocial interventions and their impact on psychosocial outcomes. We focused on randomised controlled trials, controlled studies and reviews published between October 2008 and August 2015, since the earlier review. The search of PsychInfo, Medline and the Cochrane database of systematic reviews yielded 61 relevant articles, organised into four themes echoing key phases of the care pathway: Living at home with dementia (five reviews, eight studies), carer interventions (three reviews, four studies), interventions in residential care (16 reviews, 12 studies) and end-of-life care (three reviews, two studies), along with an additional group spanning community and institutional settings (six reviews, two studies). Community findings suggested that appointment of dementia specialists and attention to case management can produce positive outcomes; physical therapies, cognitive training and modified cognitive behaviour therapy also had a range of benefits. There was more limited evidence of positive benefits for people with dementia through interventions with family carers. Thirty-two articles focused on the management of ‘behavioural symptoms’ through a range of interventions all of which had some evidence of benefit. Also a range of multi-component and specific interventions had benefits for cognitive, emotional and behavioural well-being of people with dementia in residential settings, as well as for quality of life. Overall, interventions tended to be short term with impact only measured in the short term. We recommend further research on interventions to promote living well in the community post-diagnosis and to address end-of-life care. Development of psychosocial interventions would benefit from moving beyond the focus on control of behaviours to focus on wider aspects of life for people with dementia.
(Edited publisher abstract)
Objectives: Qualitative research has suggested that spousal experiences of discontinuity in their relationship with a person who has dementia (i.e. the relationship is experienced as radically changed) may contribute to heightened feelings of burden, entrapment, isolation, guilt and intolerance of behaviours that challenge. By contrast, continuity in the relationship may contribute to a greater...
(Publisher abstract)
Objectives: Qualitative research has suggested that spousal experiences of discontinuity in their relationship with a person who has dementia (i.e. the relationship is experienced as radically changed) may contribute to heightened feelings of burden, entrapment, isolation, guilt and intolerance of behaviours that challenge. By contrast, continuity in the relationship may contribute to a greater sense of achievement and gratification from providing care. The present study served as a quantitative test of these suggestions. Method: A convenience sample of 71 spouses of people with dementia completed three questionnaires - the Zarit Burden Interview (ZBI), the Positive Aspects of Caregiving measure (PAC) and the Birmingham Relationship Continuity Measure (BRCM). Results: In accordance with the hypotheses, the experience of greater relationship continuity (higher BRCM scores) was correlated with fewer negative emotional reactions to caregiving (lower ZBI scores; rho = −.795) and more positive emotional reactions (higher PAC scores; rho = .764). Conclusions: The study provided some quantitative support for suggestions arising from qualitative research about how perceptions of continuity/discontinuity in the relationship may impact on the caregiving spouse's emotional well-being. Helping couples to maintain a sense of continuity and couplehood may assist their emotional adjustment to dementia.
(Publisher abstract)
Subject terms:
relationships, continuity of care, informal care, carers, dementia, partners, wellbeing, stress;
In response to the need for improved access to dementia services for minority ethnic communities, the Alzheimer's Society piloted, in 2014, the Information Programme for South Asian Families (IPSAF), an adapted version of its existing course for carers. It delivered this in partnership with local black and minority ethnic community and faith organisations, a new approach for the Alzheimer's
(Edited publisher abstract)
In response to the need for improved access to dementia services for minority ethnic communities, the Alzheimer's Society piloted, in 2014, the Information Programme for South Asian Families (IPSAF), an adapted version of its existing course for carers. It delivered this in partnership with local black and minority ethnic community and faith organisations, a new approach for the Alzheimer's Society. In most cases, the partnerships formed were strong and effective, and have given rise to ongoing plans for joint working that bring benefits to both the local organisations and the Alzheimer's Society. However, the current realities of UK voluntary and community sector dynamics raise questions of ownership and issues around how to establish genuine partnerships. In this article, the authors reflect on what the IPSAF experience indicates about the potential for equitable partnerships between small and large organisations, and draw out lessons for building effective, mutually beneficial relationships.
(Edited publisher abstract)
Subject terms:
dementia, joint working, voluntary sector, service provision, black and minority ethnic people, South Asian people, Alzheimers disease, health care;
Health and Social Care in the Community, 24(2), 2016, p.165–174.
Publisher:
Wiley
The uptake of advance care planning (ACP) is particularly low among people with dementia. This may reflect barriers to communication between professionals, patients and families in the face of lack of consensus about the process. This study aimed to methodically investigate consensus views of how ACP should be explained and carried out with people with dementia. A three-round Delphi study
(Publisher abstract)
The uptake of advance care planning (ACP) is particularly low among people with dementia. This may reflect barriers to communication between professionals, patients and families in the face of lack of consensus about the process. This study aimed to methodically investigate consensus views of how ACP should be explained and carried out with people with dementia. A three-round Delphi study explored views of how and when ACP should be addressed, what should be covered, who should be involved and why rates of ACP are low. Seventeen participants took part comprising family members, old age psychiatrists and policy makers. Thirty-two items reached consensus. The panel agreed on 11 different areas for discussion. They concurred that ACP was best addressed after the person has come to terms with the diagnosis when the individual feels ready to do so. There was a consensus view that the process should be couched in terms of ‘certain possibilities’. Consensus items emphasised personal choice and autonomy, while also prioritising the need to discuss financial aspects and to include spouses. There was no consensus that professionals should be involved, although the panel viewed them as carrying some responsibility for low uptake. It is suggested that ACP should include general discussion of values as well as coverage of specific points. Professionals need to offer discussion and information on ACP, but also make clear that the patient has the right to choose whether to pursue ACP or not.
(Publisher abstract)
Subject terms:
care planning, dementia, communication skills, patients, professionals, families, advance care planning, service uptake, communities;
Family relationships are important for wellbeing across the lifecourse and are known to be important for people living with dementia, bringing benefits to self-esteem and identity, as well as providing support for people living at home. Recent research has explored the impact of dementia upon relationships. Much of this research is qualitative in nature and rarely included in systematic reviews...
(Publisher abstract)
Family relationships are important for wellbeing across the lifecourse and are known to be important for people living with dementia, bringing benefits to self-esteem and identity, as well as providing support for people living at home. Recent research has explored the impact of dementia upon relationships. Much of this research is qualitative in nature and rarely included in systematic reviews, however, it has the potential to provide significant contributions to understanding the interplay between family relationships and dementia and to inform interventions. A systematic synthesis of qualitative research concerning the impact of dementia upon family relationships was undertaken, using thematic synthesis. Eleven articles were reviewed, which address the perspectives of people living with dementia and their spouse and/or adult children. The aims of this review are to illuminate what is currently known about the reciprocal influences between family relationships and dementia from the perspectives of the family (including the person with dementia); and to consider the implications of these findings for research and practice. Four super-ordinate themes were identified: ‘a shared history’, ‘negotiating the impact of dementia upon the relationship’, ‘openness and awareness’ and ‘shifting sands’. This synthesis contributes to an emerging field but also highlights gaps in current understanding of the impact of dementia upon relationships and in providing appropriate interventions. Implications for research and practice are considered.
(Publisher abstract)
Subject terms:
dementia, family relations, Alzheimers disease, self-esteem, literature reviews, family members, home care, carers;
Dementia: the International Journal of Social Research and Practice, 9(2), May 2010, pp.169-189.
Publisher:
Sage
The responsibility for community based care for older people with dementia is often left to a spouse, and, unlike caring for a partner with physical health problems, care of dementia sufferers has been found to be associated with high rates of depression, and a sense of burden. This qualitative study explores spouse caregivers’ understanding of, and responses to, partners with dementia
The responsibility for community based care for older people with dementia is often left to a spouse, and, unlike caring for a partner with physical health problems, care of dementia sufferers has been found to be associated with high rates of depression, and a sense of burden. This qualitative study explores spouse caregivers’ understanding of, and responses to, partners with dementia. Interviews were held with six wives, aged 64 to 78 years, who had been providing care to their husbands in the community for at least two years. Transcripts were analysed using Interpretative Phenomenological Analysis and four interconnected themes were proposed and described: same person or different; relational change; emotional responses to behaviours; and impact on day-to-day life. Participants’ sense of continuity with the past was suggested to influence each theme. The construct of continuity was proposed to be elastic, with both intra-psychic and inter-psychic factors impacting upon its elasticity. In conclusion, the authors suggest that a sense of continuity seemed to be associated with better adjustment to care giving.
Subject terms:
interpersonal relationships, older people, partners, activities of daily living, carers, community care, coping behaviour, dementia, depression, emotions;
...to resident, and staff to family. The implications of different approaches to communication are discussed, and recommendations made for practice. This is the first in a three part series on dementia care exploring communication.
The Gold Standards Framework, now part of the NHS End of Life Care Programme, identifies good communication as one vital aspect of care. This study gathered the views of care home staff on communication issues. Focus groups were conducted with 36 members of direct care staff from nine nursing and residential care homes. Three types of communication were identified: staff to staff, staff to resident, and staff to family. The implications of different approaches to communication are discussed, and recommendations made for practice. This is the first in a three part series on dementia care exploring communication.
Subject terms:
nurses, older people, relatives, staff, care homes, care workers, communication skills, communication, dementia, families;