Research project - DECIDE
Diverse Experiences of End-of-Life Care in Dementia
Dr Felicity Dewhurst (Flic), one of our Consultants in Palliative Medicine, led a research project that focused on helping to improve care for all people with dementia as they approach the end of their lives.
According to a recent report by Marie Curie, titled ‘Dying in Poverty – exploring poverty at the end of life in the UK’, we know that people with dementia who are from ethnic minority communities or who experience poverty are less likely to receive good end-of-life care.
This study looked at what issues are important to resolve to ensure good end-of-life care for people with dementia from ethnic minority groups and those experiencing poverty.
The research team was led by Dr Felicity Dewhurst, Consultant in Palliative Care at St Oswald’s Hospice, and two other lead researchers, Dr Louise Tomkow and Dr Marie Poole, who are based at Newcastle University, University of Manchester, and London School of Economics.
National Institute for Health and Social Care Research (NIHR Three Schools Dementia Programme).
2024
To find out what research is required to improve end-of-life care for everyone with dementia and how to facilitate inclusivity.
A review of the academic literature was conducted. Findings were shared with diverse key stakeholders through a series of workshops. Conclusions were subsequently used to provide evidence-based recommendations for inclusive end-of-life care and future research.
Themes from the literature were evident in the personal and professional experiences of key stakeholders. Palliative care providers are often ignorant of the needs of those dying in the margins. Support services are scarce and unequal geographically. There is a lack of personalised and culturally appropriate care for those with dementia and their families.
Themes from the stakeholder groups included a need for better communication between services, and more investment into dementia as a palliative condition, with avenues created to increase trust and facilitate engagement with services.
Future research should focus on educational strategies, including how optimal end-of-life care differs for those with dementia compared to other life-limiting conditions, with appropriate models of inclusive, appropriately funded care needed.
Read the published abstract below.
Read the published abstract