Qualitative study exploring knowledge and attitudes towards dementia risk prediction, barriers to dementia services and service improvement recommendations with diverse populations in England.

Abstract

This study explored knowledge of dementia, attitudes towards dementia risk prediction and barriers and facilitators to accessing dementia services for diverse populations in England. Qualitative study using task group methodology, interrogated through framework analysis. Task groups were held primarily in-person at local community venues (n=12) with one task group conducted online. 147 individuals (mean age=63 years old, 62% female) were recruited, representing low-income and ethnically diverse groups from two sites (Nottingham and Newcastle, UK). Participants were from diverse ethnic backgrounds with 37% Black or Black British, 24% Asian or Asian British, 20% white, 9% not provided, 7% Arab and 1% other ethnicities. Participants possessed some knowledge about dementia but highlighted a need for better access to information about dementia. Participants were knowledgeable about dementia risk factors, but knowledge of risk prediction was low. Attitudes towards dementia risk prediction were cautiously optimistic, and the use of risk prediction tools was viewed as empowering. However, participants stressed the need to consider the psychological impact of a high-risk result. Barriers to accessing dementia services included stigma, denial, language, cultural and religious views about dementia. Recommendations for service improvement included engaging with communities in their spaces, workforce training around dementia awareness, cultural competency and communicating with diverse groups, improving the provision of information in different languages and access to translators. As international policy on dementia shifts focus to prevention, there is a growing interest in identifying those at high risk and intervening early. This study illustrates current levels of dementia knowledge and attitudes towards risk prediction among socioeconomically and ethnically diverse groups in the UK. Barriers to health services for diverse populations and service improvement recommendations offer a starting point for providers to develop culturally aware and inclusive dementia services.