Sleep Profiles of Caregivers for Persons Living with Dementia: A Qualitative Study

Abstract

Sleep disturbance is prevalent among caregivers of people living with dementia. However, gaps exist about caregivers’ sleep patterns before and during their caregiving trajectory. This exploratory secondary analysis using a qualitative descriptive approach aimed to (1) identify and describe current caregivers’ patterns of change in sleep before and during caregiving, and (2) understand caregivers’ perceptions of their current sleep compared to their pre-caregiving sleep. We conducted semi-structured interviews with 19 caregivers taking part in a larger randomized controlled trial. Participants were female (n = 11), white (n = 13) and on average 63 years of age. Interview questions focused on caregivers’ sleep patterns. The interviews were audio-recorded using a videoconferencing platform and ranged from 20 to 45 minutes. We conducted thematic analysis of the interview transcripts. Three distinct caregiver-sleep profiles emerged from the qualitative data: changed and dissatisfied, changed and satisfied, and unchanged and dissatisfied. Caregivers whose sleep was categorized as changed reported a difference when comparing their current sleep pattern to their pre-caregiving sleep pattern. This was usually a change from good to poor sleep. Caregivers whose sleep was unchanged had poor sleep pre-caregiving and continued to have poor sleep during caregiving. Caregivers also reported being satisfied or dissatisfied with their current sleep pattern, defined in terms of distress and impairment. These three subtypes highlight the heterogeneity of caregivers’ sleep experiences and debut a useful clinical framework with which to identify, categorize, and target caregivers at risk for sleep disturbance, many who may be ready to engage in behaviors to improve their sleep. Knowing caregivers’ sleep profiles will enable health care providers and researchers to determine caregivers’ needs and readiness for interventions then work collaboratively with them to improve their sleep problems.