Caring for a relative with dementia: Navigating racism and cultural expectations. An interpretative phenomenological analysis

Background: Due to the increasingly ageing and rapidly growing population, rates of dementia are predicted to continue to rise over the next 30 years. Evidence suggests that people from Black African and Caribbean (BAC) communities are at increased risk of being diagnosed with a label of dementia. In the UK, dementia policy emphasises providing support to enable people with dementia to live in their own homes with the support of family carers. The current research seeks to explore the meaning BAC familial caregivers attribute to the experience of looking after a relative with dementia. In addition, this study explores how historical experiences of racism can present in dementia and the understanding of this experience from the perspective of familial caregivers. Method: This qualitative study used semi-structured interviews to explore caregiving experiences with eight participants. The transcripts were analysed using interpretative phenomenological analysis (IPA). Results: Three group experiential themes (GETs) and six subthemes were developed, guided by the exploration into how BAC familial carers make sense of their experience looking after a relative with a label of dementia. Overall, the themes illustrate the complexities of caring for a relative with a label of dementia against a milieu of tension at the intersection of care, culture, ethnicity, and community. Participants shared their experience of witnessing their relative re-experience memories of racist incidents, which was understood to be an enactment of a longing desire for safety and happiness in a country with which they had a complicated relationship. Conclusion: Clinical and broader implications of the research findings are presented, and considerations are made for future research to advance understanding of this subject.