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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. [ABSTRACT FROM AUTHOR]

Background Discussing 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. Methods A 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. Results The Scopus search identified 5743 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. Conclusions Available 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. [ABSTRACT FROM AUTHOR]