Access to dementia diagnosis and support in a diverse South Asian community : a qualitative study

Abstract

Although members of the United Kingdom (UK) South Asian population appear to have an elevated risk of developing dementia, this population accesses dementia services less frequently, compared with the majority white population. The disparity between the prevalence of people with dementia and the reported incidence of dementia, especially among South Asian populations (the UK‟s largest ethnic minority), is of concern to public health service providers. This study aimed to identify the socio-cultural issues in accessing dementia services in the population living in Blackburn with Darwen [BwD], in the Northwest of England. This qualitative study explores how members of the BwD South Asian Indian and Pakistani population perceive dementia, and how their family members engage with local dementia care services and with healthcare professionals providing dementia services. Data collection included: three focus groups with thirteen people involved in a community project; two interviews with people living with dementia and their family members; and eight interviews with nine dementia services healthcare professionals [HCPs]. The data was analysed using thematic analysis. The findings suggest that members of the South Asian population are under-represented in dementia diagnostic services. Firstly, this appears to be due to a lack of knowledge in the Muslim South Asian Indian and Pakistani community about the nature of dementia. Various negative perceptions of dementia, influenced by cultural beliefs, were also identified which lead to people with dementia being stigmatised and hidden from public view by their families. This may explain why health professionals report that this population seeks help at a later stage of the illness, and thus there is an argument for public health services to develop culturally relevant outreach programmes.