3190 End-of-life dementia care: a qualitative study of the experiences and perceptions of minority ethnic and economically disadvantaged communities

Abstract

Background Dementia is a leading cause of death globally. However, people living with dementia are often underrepresented in specialist palliative care services. Existing research on palliative care for people with dementia frequently fails to include people from minority ethnic groups and those living in poverty. Aims This study explored the experiences and perceptions of end-of-life dementia care among underserved groups in England. The study also investigated how ethnicity, religion, and socioeconomic status influence these experiences. Methods Ten workshops were conducted, involving 29 Experts-by-Experience (EbE) with professional or personal experience of caring for people living with dementia from disadvantaged communities. Qualitative data from these workshops were analysed thematically. Results The findings highlight cultural, socioeconomic, and systemic barriers to accessing quality end-of-life care. Participants noted pervasive fear, stigma, and mistrust surrounding dementia and end-of-life care. Financial concerns were frequently described as major drivers of inequities in care. Conclusions This study reveals that individuals from minority ethnic and disadvantaged communities face significant challenges in accessing equitable, high-quality end-of-life dementia care. Future research should co-create culturally sensitive interventions with these communities to address disparities in care.