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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]

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. [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]

Background: Death is universal. Only 37% of adults have a will and 48% have stated their wishes regarding cremation or burial.(1) Planning and communication can help prevent some of the distress associated with dying and bereavement., Aim: To evaluate an intervention to encourage people to plan for the end of their life and to communicate their wishes to those closest to them., Method: Two interventions were delivered via community groups: 'Awareness' presentations aimed to raise awareness of benefits of preparing and talking about end of life issues. 'How to' workshops aimed to give people confidence and tools to open relevant conversations. To evaluate their impact, we conducted a 3-stage questionnaire survey; administered before, immediate after and 3 months after events., Results: At baseline (n = 498; 76% female) 76% had previously discussed end of life care or wishes after death. Most were comfortable talking about these subjects, giving a mean score of 8.28/10. At follow-up (n = 133); 60% indicated they had made changes following the event; 43% had talked about their own end of life wishes, 9% for the first time; and 39% reported making other changes. The change in the proportion of people who had ever talked about their own end of life wishes was statistically significant (p = 0.033)., Conclusion: Well designed community events can improve planning and communication of end of life preferences among general population., Reference: Dying Matters Survey http://www.comres.co.uk/polls/Dying_Matters_Public_April12.pdf., (© 2015, Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.)

Background: Public health approaches to end of life are a relatively recent development; hence research methodology in this area is also being developed., Aim: A workshop for practitioners and researchers describing methodologies used by an end of life public health programme to develop and test interventions and assess the needs and potential for success of further work., Methods: During the workshop we will describe the methodologies used in a programme which aimed to reframe death and loss as social event and additionally included participatory approaches and engaging communities. Mixed methods approaches of direct observational methods, longitudinal questionnaire surveys to determine both immediate and sustained effectiveness of interventions and also semi-structured interviews will be described. The workshop will present this work, reflect on other methodologies that could be used; discuss what worked well and not so well, and encourage discussion of other people's research in this area and further development. The importance of retention and follow up of participants will be discussed as will issues regarding qualitative interviewing in this area and further interventions regarding how participants can be encouraged to share their thoughts and ideas re public health and palliative care thereby helping to shape the practical and research agenda. The subject and value of evaluation as opposed to research will also be discussed., Conclusion: At the end of this workshop, researchers and practitioners wishing to evaluate and research their programmes will have gained a better understanding of the theoretical and practical applications of research and evaluation., (© 2015, Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.)

Background: Societal barriers to open discussion of personal feelings and preferences relating to death may hinder planning for end of life and supporting people who are dying or bereaved., Aim: To explore views about talking about death, dying and loss., Method: Semi-structured interviews were conducted with 31 people; age range 30 to 83 years., Results: Making wills and communicating end of life wishes were considered very important; mostly for the sake of the family left behind. Participants also valued confidence to discuss other people's end of life wishes and support them appropriately if they were dying or bereaved. Many participants were very comfortable talking about their own death. Identified barrier to talking about end of life wishes included not wanting to upset others; others not listening; not being about to find an appropriate moment; not knowing enough about the options available; and fear of death, especially of the unknown. Financial costs were seen as a barrier to making a will. Participants talked of the importance of raising awareness of what death and dying involves; what end of life options available; and the importance of communication. Information on the process of normal grieving and how to support somebody who has been bereaved were also suggested., Conclusion: Being able to talk about end of life wishes and know how to support people who are dying or bereaved are important to many people, and they would welcome interventions to facilitate this at a societal level., (© 2015, Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.)