Perspectives of Minority Ethnic Caregivers of People with Dementia Interviewed as Part of the IDEAL Programme

Abstract

Postwar migrants from the Caribbean and Indian subcontinent (Bangladesh, India, and Pakistan) to the UK are now experiencing the onset of age-related diseases such as dementia. Our evidence base, both quantitative and qualitative, documenting the experiences of family caregivers of people with dementia is largely drawn from studies undertaken with white European, North American, and Australasian populations. Consequently, there is a need for research in the field of dementia caregiving to reflect the increasing diversity in ethnic identities of the older adult population of the UK. Using semistructured interviews, we investigated the experiences of 18 caregivers of people with dementia in Black Caribbean, Black African, and South Asian (Indian, Pakistani, and Bangladeshi) communities in England. Participants were recruited from the Join Dementia Research platform and were predominantly female intergenerational carers. We identified the following three themes: motivation to care (spending time with the care recipient and reciprocity), positive and negative consequences of caregiving (rewards and consequences), and the cultural context of caregiving (cultural norms and values supporting caregiving and negative attitudes towards dementia). Our findings develop existing literature by identifying (a) the importance of spending time with the person they care for, (b) the absence of faith as a caregiving driver, and (c) the challenge of watching the declining health of a parent. We highlight how the different motivations to care are intertwined and dynamic. This is illustrated by the linking of obligation and reciprocity in our dataset and positive and negative experiences of caregiving.