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

Abstract

Background: Dementia is a leading cause of morbidity and mortality amongst ageing populations. However, palliative care is often poor or non-existent. People from minority ethnic and economically disadvantaged communities are especially likely to miss out. Research exploring how inclusive end-of-life (EOL) care should be provided for people living with dementia (PLWD) is limited and commonly fails to include sufficient representation of people from minority ethnic groups and those living in poverty.

Aims: Our aim was to understand the experiences and perceptions of EOL dementia care amongst underserved groups and investigate how ethnicity and socioeconomic status influence experiences and perceptions of EOL dementia care.

Methods: Ten workshops were held with a total of 29 Experts-by-Experience (EbE). All had professional and/or personal experience of care for people from disadvantaged groups living with dementia in England. The groups explored (i) current evidence gaps, (ii) barriers and facilitators to EOL care for PLWD across different ethnic and socioeconomic groups and (iii) recommendations for care and future research. The discussions were recorded, transcribed and the qualitative data analysed thematically.

Results: Data point to cultural, socioeconomic and systemic barriers to accessing quality EOL care for PLWD. EbE described how there is fear and stigma of talking about dementia and EOL care, and a mistrust of health and care services. Financial concerns were pervasive throughout the data and were described by EbE as significant drivers of inequalities in access to quality care.

Conclusion: EbE from minority ethnic and socioeconomically disadvantaged groups report poor experiences of EOL dementia care. Our data suggests there is a need to improve multiple aspects of care, including access and coordination. Future research should work with underserved communities to co-produce culturally sensitive interventions to address inequalities in dementia EOL care.