Sleep Disturbances and Dementia in the UK South Asian Community: A Qualitative Study to Inform Future Adaptation of the DREAMS-START Intervention.

Abstract

Background/Objectives: Little is known about experiences of sleep disturbance in dementia amongst South Asian families, the UK's biggest minority ethnic group. We aimed to explore their experiences of these alongside translation and preliminary cultural adaptation of an existing effective multicomponent intervention, DREAMS-START. Methods: We interviewed family carers of people living with dementia who had participated in the DREAMS-START (n = 7) trial or other dementia studies (n = 4), conducting reflective thematic analysis. We translated DREAMS-START into Hindi and consulted with Hindi speakers with experience in dementia care, revising iteratively. Results: We identified two overarching themes: (i) the experience of dementia-related sleep disturbance in South Asian families, including the impact of multigenerational living, cultural expectations and practices, and existing relationships; and (ii) considerations for culturally adapting DREAMS-START, including language barriers, linguistic and other changes to peripheral elements to increase engagement and relevance, and culturally competent facilitation of the intervention. Conclusions: Consideration of multigenerational family structures, within-member dynamics, culturally appropriate activities and lack of access to support are important during consultation and intervention. It was thought that cultural adaptation of the intervention in language and facilitator cultural competence, including consideration of the schedule of prayer, would increase relevance and thus community access. We will use this preliminary work to inform future cultural adaptation and testing of the intervention with the intention to widen access for UK-based South Asian families.