Dewhurst F, Poole M, Tomkow L, Tissa F, Ngouala M, Ogden M, Damisa E, Dixon J, Knapp M, Hanratty B
BMJ Supportive & Palliative Care 2024, 14, A26
Available online 18 Mar 2024
Background and Aims
Dementia is a leading cause of death internationally. Yet end-of-life care is often poor or non-existent. People with dementia from ethnic minority or socioeconomically deprived communities are even less likely to receive good palliative care. Despite this, research into end-of-life care often fails to include people from these populations. Aims: Our aim is to find out what research is required to improve end of life care for everyone with dementia and how inclusivity can be facilitated.
Methods
A scoping review of the academic literature (Medline, CINAHL, EMBASE, Psychinfo and Scopus databases) published between Jan 2000 to April 2023 was conducted, supplemented by citation tracking, reference checking and grey literature review. The health inequalities present for those with dementia at the end-of-life, how care barriers and facilitators differ across different ethnic, religious, cultural and socioeconomic groups and the current research gaps were shared with diverse key stakeholders through a series of workshops. Conclusions were then used to provide evidence-based recommendations for inclusive end-of-life care and future research.
Results
Themes from the literature played out in the personal and professional experience of key stakeholders. Society in general lacks adequate knowledge on palliative and end-of-life care and dementia, particularly as a terminal diagnosis. Palliative care providers are ignorant to the needs of those dying in the margins. There is a dearth of support services and a lack of appreciation of appropriate models of inclusive care for those with dementia and their families. Lack of funding perpetuates poverty and a lack of trust of those who commission and provide care.
Conclusions
Future research should focus on international education strategies, how optimal end-of-life care differs for those with dementia compared to other life-limiting conditions and appropriate models of inclusive, appropriately funded care.