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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.

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 settings - examples 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: 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]