Understanding dementia amongst people in minority ethnic and cultural groups

Aim. This paper is a report of a study to explore perceptions of ageing, dementia and ageing-associated mental health difficulties amongst British people of Punjabi Indian origin. Background. People from ethnic minorities are often under-represented in mental health services. Contributing factors may include lack of knowledge of dementia in these communities, lack of detection in primary care, expectations of family care and lack of appropriate services. For this to change, greater knowledge is needed about awareness and conceptualization of dementia in minority ethnic communities. Method. A focus-group study was conducted between 2001 and 2003 with 49 English-, Hindi- and Punjabi-speaking British South Asians, aged 17-61 years. Views of ageing and ageing-associated difficulties were explored in initial groups. In a second set of groups, vignettes were used for more specific exploration of awareness and understanding of dementia. Data were subjected to thematic analysis. Findings. Ageing was seen as a time of withdrawal and isolation, and problems as physical or emotional; cognitive impairment was seldom mentioned. There was an implication that symptoms of dementia partly resulted from lack of effort by the person themselves and possibly from lack of family care. Therefore people should overcome their own problems and family action might be part of the solution. There was a sense of stigma and a lack of knowledge about mental illness and services, alongside disillusionment with doctors and exclusion from services. Conclusion. Health promotion and health interventions delivered with respect for the cultural context are needed, as well as education of healthcare professionals about South Asian conceptualizations of dementia.