End-of-life care and dementia

In the UK, research continues to confirm that people with certain chronic illnesses, such as chronic lung disease and cardiac failure, represent the ‘disadvantaged dying’ compared to those with terminal cancer. But what is the situation for people dying with advanced dementia and what is the experience of their carers? Practical guidance for clinicians is scarce. In Standard 7 of the National Service Framework for Older People, which covers mental health, there is mention neither of how care should be provided nor of how patient choice should be ensured for people with dementia at the end of life. In the UK, 5% of the population aged 65 and over and 20% of those aged 80 and over have dementia similar prevalence figures are found in the USA. Current predictions suggest that the number of people with dementia will increase by 40% by 2026 and will double by 2050. The increased demand for end-of-life care for people with dementia will be associated with major social and economic costs, but what is the current standard of such care? How can the quality be improved? And how should future services be configured to cope with this increasing need? In this paper, we review current knowledge around end-of-life care in dementia, discuss the clinical challenges and ethical dilemmas presented to carers, consider the difficulties in delivering such care and suggest practical approaches to improve the quality of such care

Selfhood in younger onset dementia: Transitions and testimonies.

Younger people with dementia and their carers are an overlooked population for research, policy and practice attention. In this study, data were collected from both the United States and the UK in order to explore the meaning and construction of selfhood and identity. The US data collection included in-depth interviews with 23 people diagnosed with younger-onset dementia, while the UK data collection comprised 15 face-to-face interviews with younger carers of younger people with dementia; all carers were/had been caring for a younger person with dementia diagnosed through the DSM-IV-R criteria. A grounded theory analysis of the data resulted in the emergence of five themes to explain the interview data, these were: (1) identity as a worker; (2) identity of abandoned individual; (3) sexual identity; (4) family identity; and (5) identity as an individual engaged in living. Additional research is necessary to further develop the attributes and application of these identity profiles

Transforming lived places into the connected neighbourhood: A longitudinal narrative study of five couples where one partner has an early diagnosis of dementia

To support people with dementia to live at home, a key national and international policy driver is to create dementia-friendly communities which draws attention to the importance of a local neighbourhood and living well with dementia. However, there is a lack of evidence about how people with dementia define and interact with their neighbourhood. This longitudinal narrative research aimed to uncover the meaning, construction and place of neighbourhood in the lives of people with dementia and their care partners through a participatory approach. Five couples, where one partner had an early diagnosis of dementia and capacity to consent, participated in the (up to) one-year mixed qualitative method study. During this time-frame, 65 home visits were conducted, resulting in over 57 hours of interview data alongside the development of other artefacts, such as neighbourhood maps, photographs, diaries and field notes. Narrative analysis was applied within and across the data-sets. This led to the emergence of three themes to describe a connected neighbourhood. First, ‘connecting to people’ is about the couples’ connections with family members, friends and neighbours through a sense of belonging, group identification and responsibilities. Second, ‘connecting to places’ shares the couples’ emotional and biographical attachment to places. Third, ‘connecting to resources’ refers to the couples actively seeking support to live independently and to retain neighbourhood connections

Understanding the personhood of Deaf people with dementia: Methodological issues

AbstractThis article concerns Deaf people in the United Kingdom, who use sign language, who have a formal diagnosis of dementia and who have participated in interviews in British Sign Language (BSL) about their experience of living with dementia. We address the methodological challenges involved in enabling culturally meaningful participation in circumstances where the non-verbal is not equivalent to the non-linguistic. We demonstrate the use of interpretative narrative representation of data for purposes of cultural brokering. We explore the contribution of Deaf people's experiences and the analysis of their visual, spatial narratives to debates about personhood and the embodied self in dementia studies. Finally, we consider the significance of the situational as cultural in relation to holistic interpretation of narrative