A grounded theory analysis of the experiences of carers for people living with dementia from three BAME communities: Balancing the need for support against fears of being diminished

Abstract

An estimated 25,000 people of Black, Asian and other Minority Ethnic (BAME) origins live with dementia in UK – a number which is expected to increase sevenfold by 2051. People from many BAME communities experience dementia in a markedly different way to their white British counterparts. For instance diagnosis is more likely to occur at an advanced stage of the illness, while there is a lower take-up of mainstream dementia services. This research study focused on the experiences of caregivers for family and friends living with dementia from South Asian, African Caribbean and Chinese communities in Bristol. Data were collected through interviews with 27 participants and 8 focus groups attended by 76 participants. Additionally, interviews were carried out with 16 paid staff and volunteers working for Voluntary and Community Sector Organisations (VCSOs) that provided services for older people from these three communities. As concepts emerged during data analysis, so these were checked with each community. The grounded theory, ‘fear of diminishment’ was present across all communities: participants both needed and wanted support, but they were reluctant to accept this if it came at the cost of being diminished as a person. To resolve this dilemma, informants turned to BAME-led VCSOs, which provided ongoing support and advocated on behalf of their members. However, the services provided by these VCSOs varied and reflected differences in the ways in which communities enacted the theory. Given the increasing importance of cultural diversity within dementia care, this study has important implications for communities across the UK and elsewhere, and points towards the need for sustainable and equitable resourcing of dementia care within BAME-led VCSOs.