Integrating lived experience to develop a tailored sleep intervention for people living with dementia and carepartners

Abstract

Objectives Sleep disturbances are highly prevalent and have adverse health consequences for both people living with dementia and their carepartners. Despite this, they are under-addressed caregiving settings. This study aimed to explore these sleep disturbances and co-design a multimodal sleep intervention for people living with dementia and their carepartners. Methods We conducted two focus groups and five semi-structured interviews ( n = 4 people living with dementia, n = 6 carepartners). Active involvement of community advisors was sought throughout the design, development, and facilitation phases. Reflexive thematic analysis was used to explore sleep-related experiences and receive feedback to shape intervention development. Findings People living with dementia reported disruptions to sleep and circadian rhythms, including sleep disturbances and confusion between day and night. Multiple sleep challenges were encountered by carepartners including insomnia, hypervigilance, and daytime impairment. The proposed sleep intervention was received positively, with significant insights emphasising the need for a multimodal toolkit approach, adaptation of the intervention across different dementia stages, and a focus on tailoring the program to carepartners. Conclusion Sleep interventions for caregivers and care-recipients should target both sleep and daytime functioning to ensure holistic support. Participants were receptive towards time-friendly, online, multimodal sleep interventions that combine cognitive behaviour therapies, light therapy, mindfulness, and exercise elements.