Objectives: A lack of compassion in UK healthcare settings has received much recent attention. This study explores the experiences of people with dementia in the last year of life and time surrounding death and how the presence and lack of compassion, kindness and humanity influenced the experience of care. Design: Qualitative in-depth interviews with bereaved informal carers of people with dementia. Setting: United Kingdom. Participants: Forty bereaved carers -31 women and nine men -with an age range of 18-86 years and from wide socioeconomic backgrounds participated. Main outcome measures: Experiences of carers of care for person with dementia during last year of life. Results: The interviews highlighted differences and challenges in care settings in providing compassionate, humanistic care and the impact of the care experienced by the person with dementia during the last year of life on informal carers during the bereavement period and beyond. Excellent examples of compassionate care were experienced alongside very poor and inhumane practices. Conclusion: The concepts of compassion, kindness and humanity in dementia care are discussed within the paper. The ability to deliver care that is compassionate, kind and humanistic exists along a continuum across care settingsexamples of excellent care sit alongside examples of very poor care and the reasons for this are explored together with discussion as to how health and social care staff can be trained and supported to deliver compassionate care.

Background Many people do not discuss end of life preferences with those closest to them, although this can be beneficial to the individual and wider population. This study evaluated a community intervention to promote end of life preparation and discussion among people who are currently well. Methods A series of presentations and workshops (the intervention) were delivered to community groups and people working within health and social care. Participants were invited to complete a three-stage follow-up survey at Baseline, Post intervention and at three months' follow-up. Results Baseline questionnaires were completed by 498 individuals. Overall, 51% reported talking with close family or friends about their end of life care and 58% reported talking about what they would like to happen after their death. There was a significant positive relationship between increasing age group and having talked about end of life wishes. The majority of participants were already comfortable in talking about end of life (overall mean score 8.28/10). Post intervention, 73% stated that they planned to take action including 61% who planned a specific conversation and 55% who planned another action. At follow-up 64% reported that they had taken some action due to the intervention, including 43% who had talked about their own end of life preferences and 39% who had taken some other action. Conclusions Well-designed community-based interventions can be successful in prompting people to consider and discuss their end of life preferences. Electronic supplementary material The online version of this article (10.1186/s12904-019-0407-8) contains supplementary material, which is available to authorized users.

BackgroundDiscussing end of life preferences can be beneficial, and it is thought that the best time to have these conversations is usually when people are well. This review aims to establish current evidence for the effectiveness of community-based interventions to encourage people to consider, and to discuss with those closest to them, their preferences for end of life care or what they wish to happen after their death.MethodsA systematic literature review was undertaken. A systematic search was conducted using Scopus and Google, and academic experts were contacted. Studies were included if they evaluated interventions intended to encourage people to discuss their end of life preferences with those closest to them, or to address known barriers to these discussions. Reported outcomes had to relate to attitude or behaviour change in the target group, or target group perceptions of the intervention. Studies were excluded if the intervention targeted only people with a life-limiting illness, or intended specifically to facilitate communication of end of life preferences between patients and healthcare staff. Studies were systematically described and assessed for quality. There was no attempt to combine results of different studies.ResultsThe Scopus search identified 5,743 citations, and the Google search identified over 40,000, of which the first 40 pages were scanned. Five studies were included, four identified through the Scopus search and one from a book identified through Google. Three studies reported positive results, two were less positive. A peer education programme on end of life planning for older people, featuring small discussion workshops, was positively appraised by participants. An arts project bringing hospice users and school pupils together appeared to help normalise death for school pupils. A public information ‘roadshow’ engaged people using an informal questionnaire survey, facilitating conversations between people who participated together. Public lectures by physicians intending to promoting home death as a possibility were unsuccessful in changing attitudes at six months follow-up. A module on end of life planning delivered as part of ‘expert patient’ education programme on the management of chronic illness was not well received by participants.ConclusionsAvailable evidence highlights the importance of actively engaging people rather than passively providing information, and of ensuring an appropriate context for interventions. However, data are limited and there is a need for more research and for sharing of best practice.

It is estimated that there are 35.6 million people with dementia worldwide and this is projected to increase to over 115 million by the year 2050. Dementia is a progressive neurodegenerative disease that significantly reduces survival. End-of-life care received by this group is often poor and does not equate to that offered in other life limiting illnesses.This review highlights results from a large UK study of informal carers of people with dementia to explore what are determinants of care for people with dementia and their family carers. New perspectives as to models of care for end-of-life care for patients with dementia are discussed together with how these may be implemented and delivered within wider community settings and contexts, where many people with dementia may be cared for in the future.

Background: Dementia is a life-limiting illness, but the trajectory of dying can be difficult to establish and care at end of life can be variable and problematic. Methods: This UK study was carried out to explore the end-of-life-care experiences of people with dementia from the perspective of their family carers. In-depth interviews were conducted with 40 bereaved family carers of people with dementia. Results: Forty family carers (male n = 9, female n = 31) age range: 18–86 years were interviewed. Issues with poor communication were common. The hard work of caring and issues regarding unpredictability of living and dying with dementia were also commonplace within the study. Only three patients were referred for specialist palliative care support at the end of life, all of whom had a dual diagnosis of dementia and cancer. Conclusion: This qualitative study has identified that there are several gaps in the end-of-life care of people with dementia, and frequently, there is poor communication during the last year of life. The need for high-quality integrated care for people dying with dementia with appropriate support during the last year of life is identified. COVID-19 has disproportionately affected people with dementia, and in the post-pandemic era, there is an urgent need to ensure every person dying with dementia is supported to die in their preferred place and that family members are supported and enabled to be treated as the ‘expert’ in terms of their knowledge of their relatives’ care and preferences.