Continuing to care for people with dementia: Irish family carers' experience of their relative's transition to a nursing home

The purpose of this study is to describe carers’ experience of the transition of their relative who has dementia to nursing home care. It is intended that this will provide evidence-based guidance for the development of initiatives to support carers. This aim is addressed by answering the following questions: 1. What are carers’ key influences in making the decision for their relative to move to a long stay setting? Who is involved in making this decision? 2. What are carers’ experiences of making the transition from caring for their relative at home to them being cared for in a long stay setting? 3. How has the family carer’s role changed as a result of their relative’s move to a long stay setting? 4. What types of roles do carers want to have? 5. How can carers be supported in these roles

Concluding narratives of a career with dementia: accounts of Iris Murdoch at her death

Obituaries and other accounts of well-known people at their death offer a narrative defining identity through the life story. It is particularly poignant when the story is told of an author, and draws upon not only life course metaphors but also features of the author's fiction. In this paper we look at a case where the dementia of a famous author figures in the tributes at her death. The predominant narrative of dementia has until recently been that of a tragic loss of self. This has reinforced an image of social death. Biomedical determinism has similarly focused on the disease, rather than seeing the person and allowing their voice to be heard. While Iris Murdoch may not have wanted tributes to tell her story, they have allowed us to examine conventional narratives of a person with dementia. We chart the ‘career’ of a person with dementia, and their perceived transformation of identity, defined in terms of being demented rather than with dementia. Bad and good are attributed to aspects of Iris Murdoch's life through a repertoire of available stereotypes. These appear to involve the retrospective application of characteristics of dementia, along with those of goodness and purity. Common gender representations relating to Iris Murdoch's married life and the caring situation are interwoven in the accounts. We are told a story that reflects and reproduces conventional narratives of the life course and of dementia, characterising the deceased in terms of a moral career

Continuing to care for people with dementia: Irish family carers' experience of their relative's transition to a nursing home

The purpose of this study is to describe carers’ experience of the transition of their relative who has dementia to nursing home care. It is intended that this will provide evidence-based guidance for the development of initiatives to support carers. This aim is addressed by answering the following questions: 1. What are carers’ key influences in making the decision for their relative to move to a long stay setting? Who is involved in making this decision? 2. What are carers’ experiences of making the transition from caring for their relative at home to them being cared for in a long stay setting? 3. How has the family carer’s role changed as a result of their relative’s move to a long stay setting? 4. What types of roles do carers want to have? 5. How can carers be supported in these roles

'Making the most of time during personal care' : nursing home staff experiences of meaningful engagement with residents with advanced dementia

YesObjectives: Dementia progressively affects cognitive functioning, including the ability to communicate. Those who struggle to communicate are often considered unable to relate to other people. Frontline care workers are in a position to connect with residents. However, we know little about their perspectives. The aim of this study was to understand how and when nursing home staff meaningfully engaged with residents with advanced dementia. Methods: Semi-structured interviews, supplemented by informal conversations, were conducted with 21 staff from seven nursing homes. Inductive thematic analysis identified themes in the accounts. Results: Four themes related to how staff engaged with residents with advanced dementia (initiating meaningful engagement, recognising subtle reactions, practising caring behaviours, patience and perseverance). Two themes related to when meaningful engagement occurred (lacking time to connect, making the most of time during personal care). Conclusion: A key barrier to implementing formal interventions to improve care is lack of staff time. Staff overcome this by using personal care time for meaningful engagement with residents. Their approach, developed through experience, is consonant with person-centred dementia care. Building on this, future research should use participatory approaches building on practice wisdom to further develop and evaluate meaningful engagement with residents with advanced dementia.The work reported in this article contributed to a PhD by the first author, with funding awarded to the Centre for Applied Dementia Studies at the University of Bradford by BUPA

Development of an awareness-based intervention to enhance quality of life in severe dementia: trial platform.

RIGHTS : This article is licensed under the BioMed Central licence at http://www.biomedcentral.com/about/license which is similar to the 'Creative Commons Attribution Licence'. In brief you may : copy, distribute, and display the work; make derivative works; or make commercial use of the work - under the following conditions: the original author must be given credit; for any reuse or distribution, it must be made clear to others what the license terms of this work are.BACKGROUND: Quality of residential care for people with severe dementia is in urgent need of improvement. One reason for this may be the assumption that people with severe dementia are unaware of what is happening to them. However, there is converging evidence to suggest that global assumptions of unawareness are inappropriate. This trial platform study aims to assist care staff in perceiving and responding to subtle signs of awareness and thus enhance their practice. METHODS/DESIGN: In Stage One, a measure of awareness in severe dementia will be developed. Two focus groups and an expert panel will contribute to item and scale development. In Stage Two observational data will be used to further develop the measure. Working in four care homes, we will recruit 40 individuals with severe dementia who have no, or very limited, verbal communication. Data on inter-rater reliability and frequency of all items and exploratory factor analysis will be used to identify items to be retained. Test-retest and inter-rater reliability for the new measure will be calculated. Correlations with scores for well-being and behaviour and with proxy ratings of quality of life will provide an indication of concurrent validity. In Stage Three the new measure will be used in a single blind cluster randomised trial. Eight care homes will participate, with 10 residents recruited in each giving a total sample of 80 people with severe dementia. Homes will be randomised to intervention or usual care conditions. In the intervention condition, staff will receive training in using the new measure and will undertake observations of designated residents. For residents with dementia, outcomes will be assessed in terms of change from baseline in scores for behaviour, well-being and quality of life. For care staff, outcomes will be assessed in terms of change from baseline in scores for attitudes, care practice, and well-being. DISCUSSION: The results will inform the design of a larger-scale trial intended to provide definitive evidence about the benefits of increasing the sensitivity of care staff to signs of awareness in residents with severe dementia. TRIAL REGISTRATION: ISRCTN59507580 http://www.controlled-trials.com.Published versio

Methodological problems in dementia research in primary care: a case study of a randomized controlled trial

The emerging UK national research network in neurodegenerative diseases and dementias aims to promote large-scale community-based studies of therapeutic interventions, based in primary care. However, trials in primary care settings can be problematic, a common difficulty being the recruitment of a large enough sample. The article discusses recruitment issues in a multi-centre randomized controlled trial of differing educational approaches to improving dementia care in general practice. Sample size calculations based on community studies of prevalence may be misleading in intervention trials which may recruit practices with atypical demography. Recruitment rates for practitioners in this study were lower than expected. Professionals excluded themselves from the study mainly due to pressures of time and staff shortages, and we detected both ambivalent attitudes to primary care research and a perception that research into dementia care was not a high priority. Evaluation of the quality of care may be perceived as criticism of clinical practice, at a time when general practice is undergoing major administrative and contractual changes. Variations in Research Ethics Committee conditions for approval led to different methods of recruitment of patients and carers into the study, a factor which may have contributed to disparate levels of recruitment across study sites. Patient and carer levels of recruitment were lower than expected and were affected partly by carers' time pressures and other family commitments, but largely by problems in identifying patients and carers in the practices. The development of research potential in primary care is at an early stage and studies reliant on patient recruitment in general practice must allow for multiple obstacles to enrollment. This is particularly relevant for studies of dementia care, where the prevalence of dementia in a demographically average population is low and the incidence very low, compared with other disabilities. Professionals may give dementia low priority in allocating practice time for research projects, and strategies to address this problem are needed

The relation between mood, activity, and interaction in long-term dementia care

YesObjective: The aim of the study is to identify the degree of association between mood, activity engagement, activity location, and social interaction during everyday life of people with dementia (PwD) living in long-term care facilities. Method: An observational study using momentary assessments was conducted. For all 115 participants, 84 momentary assessments of mood, engagement in activity, location during activity, and social interaction were carried out by a researcher using the tablet-based Maastricht Electronic Daily Life Observation-tool. Results: A total of 9660 momentary assessments were completed. The mean age of the 115 participants was 84 and most (75%) were women. A negative, neutral, or positive mood was recorded during 2%, 25%, and 73% of the observations, respectively. Positive mood was associated with engagement in activities, doing activities outside, and social interaction. The type of activity was less important for mood than the fact that PwD were engaged in an activity. Low mood was evident when PwD attempted to have social interaction but received no response

General Practitioners’ perceptions of the stigma of dementia and the role of reciprocity

YesA qualitative exploration of the stigma of dementia reported that GPs described lack of reciprocity as one way in which people with dementia are perceived within society. This was closely linked to their perception of dementia as a stigma. In this paper, we explore whether GPs perceive people with dementia as lacking reciprocity and, so, if this is linked with societal opinions about dementia as a stigma. The implications of both perceptions of people with dementia failing to reciprocate and of stigma for timely diagnosis are explored. GPs’ perceptions of societal views of people with dementia included a perception of a lack of reciprocity. Specifically, an absence of reciprocity was linked with; failing to respond to human contact, the absence of an appropriate return on social investment and failing to contribute to, or being a burden to, society. GPs reported a link between societal perceptions of lack of reciprocity and stereotypes about advanced dementia, difficulties communicating with people with dementia and lack of opportunities for people with dementia to reciprocate. GPs occupy a key position, they can challenge stereotypes and, with support and targeted training about communicating with people living with dementia, can emphasise the ways in which people with dementia can communicate, thereby enhancing their potential to reciprocate. Such changes have implications for improved care and quality of life through the continued maintenance of social inclusion and perceptions of personhood.non

"I just keep thinking that I don't want to rely on people." a qualitative study of how people living with dementia achieve and maintain independence at home: stakeholder perspectives

YesBACKGROUND: Most people living with dementia want to remain in their own homes, supported by family and paid carers. Care at home often breaks down, necessitating transition to a care home and existing interventions are limited. To inform the development of psychosocial interventions to enable people with dementia to live well for longer at home, we qualitatively explored the views of people living with dementia, family carers and health and social care professionals, on how to achieve and maintain independence at home and what impedes this. METHODS: We conducted an inductive thematic analysis of qualitative interviews with 11 people living with dementia, 19 professionals and 22 family carers in England. RESULTS: We identified four overarching themes: being in a safe and familiar environment, enabling not disabling care, maintaining relationships and community connectedness, and getting the right support. For people living with dementia, the realities of staying active were complex: there was a tension between accepting support that enabled independence and a feeling that in doing so they were accepting dependency. Their and professionals' accounts prioritised autonomy and 'living well with dementia', while family carers prioritised avoiding harm. Professionals promoted positive risk-taking and facilitating independence, whereas family carers often felt they were left holding this risk. DISCUSSION: Psychosocial interventions must accommodate tensions between positive risk-taking and avoiding harm, facilitating autonomy and providing support. They should be adaptive and collaborative, combining self-management with flexible support. Compassionate implementation of rights-based dementia care must consider the emotional burden for family carers of supporting someone to live positively with risk.This work was supported by the Alzheimer’s Society (UK) and was carried out within the UCL Alzheimer’s Society Centre of Excellence for Independence at home, NIDUS (New Interventions in Dementia Study) programme (Alzheimer’s Society Centre of Excellence grant 330). This project is also part-funded funded by The National Institute for Health Research Applied Research Collaboration North West Coast (ARC NWC)