Using the self-regulatory model to explore cultural understandings of dementia and inform a culturally sensitive intervention
In the UK, it is estimated, by the year 2025, 50,000 people from minority ethnic communities will be living with dementia. Focusing on people with dementia who have immigrated to the UK from Ireland and the Caribbean, the aim of this thesis was to explore how these families perceived and coped with dementia, to find out whether there were specific cultural influences that required distinctive support. Two systematic literature reviews were conducted; one explored how people from Irish and African Caribbean backgrounds cope with chronic illnesses. The second, considered how interventions can be successfully adapted for different cultural groups. Twenty-four families (eight Irish, eight African Caribbean, and eight white British) were involved in this study. Families, including the person with dementia where possible, took part in interviews. Using an analytic template based on the self-regulatory model of illness, relevant interview material was collated under ten themes: dementia identity, cure, personal control, treatment control, timeline, emotions, causes, coherence, consequences, and coping. Minority ethnic groups distrusted formal services, often due to past discrimination. They experienced care home environments as culturally alien and community stigma discouraged them from using mainstream services. There was a high level of familism and trust between family members, and families looked to their own communities for support. These communities were not always dementia aware and there were high levels of stigma. Based on these finding and preliminary co-design work, future work should consider developing interventions to address stigma in communities and raise awareness in health care professionals.
Dementia, Ethnicity, Health inequalities, Illness perceptions, Irish, African-Caribbean, Caregiving, Family, Ethnic communities
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