Why do ethnic elders present later to UK dementia services? A qualitative study

Background: Western policy initiatives prioritize early diagnosis of dementia, but minority ethnic (ME) people currently present later to dementia specialist care than their indigenous counterparts. In order to allow the development of rational interventions, we completed this first study to explore the link between attitudes to help-seeking for dementia and the help-seeking pathway in the ME and indigenous population. Methods: We purposively recruited a maximum variation sample comprising 18 family carers of people with dementia from the major UK ethnic groups. We used semi-structured interviews to determine the barriers to and facilitators of help-seeking, and the pathways to diagnosis. Two researchers independently coded interviews and recruitment continued until theoretical saturation was reached. Results: ME carers, in contrast to the indigenous population, tended to delay help-seeking until they could no longer cope or until others commented on the problems. They often thought that families should look after their own elders and a diagnosis alone was purposeless. This appeared to relate to beliefs about the etiology of cognitive impairment, negative beliefs about psychiatry and their sense of familial responsibility. Conclusions: ME carer beliefs were an important barrier to early diagnosis. Further work should explore whether an intervention can modify these attitudes, so that families understand that a diagnosis may allow planning and avoidance of crises; rather than signifying a failure in duty, disloyalty, or relinquishing of the caring role. Further research should focus on developing interventions to tackle barriers to help-seeking in ethnic minorities so that healthcare access can be equitable for all.