Awareness and understanding of dementia in African/Caribbean and South Asian families

The objective of this study was to explore awareness, recognition and understanding of dementia symptoms in families of South Asian and African/Caribbean descent in the UK. In-depth, semistructured interviews were carried out with South Asian and African/Caribbean carers. Interview transcripts were analysed by coding the data into themes and investigating links between them, using the constant comparison approach of grounded theory. Thirty carers of a person with dementia of South Asian and African/Caribbean heritage were interviewed. Maximum variation sampling was used to include carers with a broad range of socio-demographic characteristics. Most participants were aware of the condition ‘dementia’, but used different terms to describe the disorder. Many, however, had not heard of the condition before their relative developed it, suggesting general awareness of dementia is low. Difficulties can arise in the caring relationship due to a lack of understanding of the condition – in particular when family members place blame for the symptoms on the person with dementia. Conclusions of the study are that knowledge of dementia is limited, in terms of awareness of the condition as well as understanding of the causes. This research highlights the importance of raising dementia awareness and emphasises the importance of the provision of clear and understandable information, from health and social service providers.