Roche, Moïse Martial; (2023) Exploring and Meeting the Needs of Black African and Caribbean Older People with Dementia and their Family Carers: A Qualitative Study. Doctoral thesis (Ph.D), UCL (University College London).

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Abstract

This thesis speaks to the intersections of three important contemporary social issues: race, ethnicity and dementia. It explores the nature of disparities and inequalities in dementia and dementia care through the experiences of UK-dwelling Black African and Caribbean adults. I report on the meanings that individuals of Black ethnicity attach to dementia, how they construct their own experiential reality of dealing with it and the factors and structures surrounding it, and how the broader social and environmental context impinges upon these meanings. I conducted a systematic review about the perception and experiences of dementia among Black adults and a large national multi-setting qualitative study with ethnographic observations of the lived experience of UK Black African and Caribbean people about their understanding of dementia and their expectations of health and social care services. 32 participants from diverse backgrounds, mixed heritages and experiences were included with people with dementia, family carers, and health and social care professionals recruited from community and care home settings. I met regularly with members of the public with lived experience of dementia and other stakeholders to situate my findings within current socio-political realities. Thematic analysis of the data collected conceptualised three main themes: 1_Dementia as a killer and foreign disease, 2_Ageing as a permanent visitor and 3_Kinship, care and cultural distance. These related to shared experiences of migration; lack of social and economic capital; and threats to their identity and legitimacy of belonging. I concluded that the lens of race and ethnicity cannot fully explain the experience of living with dementia in Black communities. While inequalities cluster around the categories of race and ethnicity, the experience of dementia in these communities is much more intersectional. Future research and policy as well as health and social care practice therefore need to adapt to this complex situation of minority migration rather than reducing everything to one dimension.

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