What works well for people with dementia and their supporters from South Asian, African and Caribbean communities in the UK: A narrative synthesis systematic review and expert consultations

Abstract

OBJECTIVES: This review aims to synthesise the evidence regarding the use and provision of dementia services and support for people with dementia and/or supporters from South Asian, African or Caribbean backgrounds living in the UK. METHODS: A narrative synthesis systematic review of the original research articles published up to April 2024 was conducted. A lay summary of the initial review findings was evaluated by experts-by-experience (n = 15) for scrutiny and to enable further discussions, to produce key recommendations for further developing dementia services. RESULTS: A total of 18 studies (16 qualitative and 2 mixed methods studies) met the full inclusion criteria and were included in the review. The review findings and experts-by-experience consultations highlighted that: (1) dementia is not openly discussed or disclosed within many diverse ethnic communities. This can lead to family carers and people with dementia feeling isolated and unsupported. (2) Mainstream dementia support services and hospitals often do not meet diverse communities' cultural and religious needs, and (3) home-based care supported by external care agencies can be helpful but ensuring consistency of care staff in their culturally appropriate care can be extremely difficult to ensure. CONCLUSIONS: Encouraging South Asian, African and Caribbean communities to increase their dementia knowledge is important. However, mainstream dementia support services also need to incorporate their cultural and religious essentials into care packages to encourage their help seeking behaviours and tackle dementia stigma. Collaborative service developments between the diverse communities, Health and Social Care providers and policy makers are essential to ensure equitable and culturally appropriate dementia care for diverse community members in the future.