Sleep at home for older persons with dementia and their caregivers: a qualitative study of their experiences and challenges

Abstract

Most people with dementia (PwD) live with the support of their caregiver. Sleep issues are common among all types of dementia and increase the burden on the IC. Disturbed nights may lead to earlier admission to nursing homes. This study explored the experiences and challenges related to the sleep of PwD and IC. A qualitative study using semi-structured interviews was performed. The target groups were PwD, ICs, and care professionals. The sample comprised 20 informal caregivers, 2 PwD, and 9 care professionals. Thematic analysis was used to identify patterns within and across data concerning the experiences and challenges of participants. In total, 31 participants were interviewed in 28 sessions. Three themes were identified, namely, (a) challenges in maintaining time orientation and day/night routines, (b) irregularities and concerns of informal caregivers at night, and (c) environmental cues that support or disturb sleep. The results provide insight into the experiences of IC at home regarding their sleep and the sleep of PwD at home. Our results may guide the development of non-pharmacological interventions to support sleep and day structure with a certain balance in activities.