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

Abstract

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 ofillness facilitate help-seeking behaviours such as the use of services. Thisscoping exercise makes use of the model to explore perceptions ofdementia in British Indian, African and Caribbean, and East and CentralEuropean communities in the United Kingdom. Between August 2013and April 2014, culturally specific dementia awareness roadshows wereattended by people living with dementia, carers and members of thepublic. During the roadshows, 62 British Indian, 50 African and Caribbean, and 63 East and Central European attenders participated indiscussion groups and a dementia knowledge quiz. Thematic andframework analysis were conducted on the discussion group data. Threemain themes are presented: Perceptions of dementia, awareness ofdementia in the wider family and community, and awareness and use ofservices. The findings suggest that although groups attributed a biologicalbasis for memory loss, a number of misconceptions prevailed regardingthe cause of dementia. Groups also made use of religion, as opposed tomedical healthcare services, as a form of personal and treatment control. Seeking help from healthcare services was hindered by lack of awarenessof services, and culturally specific barriers such as language. The findingshave a number of implications for policy and practice including thedevelopment of public health interventions and the need to focus further on reducing barriers to accessing services.