Perceptions of dementia and use of services in minority ethnic communities: a scoping exercise

Despite the rapidly ageing population and a predicted sevenfold increase in the prevalence of dementia in minority ethnic communities, people from these communities remain under-represented in specialist dementia services. Leventhal's Model of Self-Regulation suggests perceptions of illness facilitate help-seeking behaviours such as the use of services. This scoping exercise makes use of the model to explore perceptions of dementia in British Indian, African and Caribbean, and East and Central European communities in the United Kingdom. Between August 2013 and April 2014, culturally specific dementia awareness roadshows were attended by people living with dementia, carers and members of the public. During the roadshows, 62 British Indian, 50 African and Caribbean, and 63 East and Central European attenders participated in discussion groups and a dementia knowledge quiz. Thematic and framework analysis were conducted on the discussion group data. Three main themes are presented: Perceptions of dementia, awareness of dementia in the wider family and community, and awareness and use of services. The findings suggest that although groups attributed a biological basis for memory loss, a number of misconceptions prevailed regarding the cause of dementia. Groups also made use of religion, as opposed to medical healthcare services, as a form of personal and treatment control. Seeking help from healthcare services was hindered by lack of awareness of services, and culturally specific barriers such as language. The findings have a number of implications for policy and practice including the development of public health interventions and the need to focus further on reducing barriers to accessing services.