Daily sleep, well-being, and adult day services use among dementia care dyads

Study Aim/Purpose:  The study aimed to describe the daily sleep characteristics over several days among persons living with dementia (PLWD) and their caregivers, and how these characteristics differ before and after a day of adult day services (ADS) use compared to before and after a non-ADS use day. The study also examined the association of daily sleep characteristics with sleep quality and daytime functioning of PLWD and their caregivers and examined the moderating effect of ADS use on these associations.

Summary of Methods: The total study sample was 173 family caregivers participating in the larger Daily Stress and Health (DaSH) study. Caregivers were eligible if they were 1) providing primary care to a PLWD who lived in the same household, 2) using ADS for at least two days a week, and 3) their care recipient had a physician’s diagnosis of dementia. Using a sleep diary, caregivers reported daily bedtime, wake time and sleep quality for themselves and the PLWD across 8 consecutive days. On each day, caregivers also reported their own level of fatigue and answers to 20 questions derived from the Non-Specific Psychological Distress Scale that resulted in scores on negative and positive affect. The caregivers also reported PLWD’s daytime behavior problems and sleep problems each day using a daily record.

ADS use was tracked on each of 8 consecutive evenings through evening phone calls, when the caregiver reported use or nonuse of ADS that day. The analyses considered ADS use one both that day and the day before so that sleep on a given night could be assessed in three ways: using ADS on both days, using ADS neither day, or only using ADS on one of the days. The authors compared mean differences in bedtime, wake time and total time in bed on nights before versus after ADS use and conducted multi-level analysis using models to examine associations of daily sleep length and quality with caregiver and PLWD well-being.

Summary of Results:  Descriptive analyses found that total time in bed was shorter for caregivers and PLWD on the night before an upcoming ADS use day. Analyses of sleep quality found that for caregivers, either longer or shorter amounts of time in bed than usual were associated with poorer sleep quality. Perhaps not surprising, longer time in bed by PLWD across days tended to be associated with better caregiver-reported sleep quality. With regard to daytime functioning of the caregiver and the PLWD, daily total time in bed was the strongest positive predictor for daytime functioning for both parties. The authors also found an association between PLWDs’ overnight sleep problems and higher caregiver negative affect and lower caregiver positive affect. However, using ADS the following day was associated with earlier bedtime and wake time (shorter total time in bed) for the caregivers and PLWD but was also associated with better reported sleep quality for PLWD. Using ADS on the previous day also weakened the associations between 1) a caregiver’s own typical time in bed over the study period and their daytime fatigue, and 2) PLWD’s sleep problems and caregivers’ lower daytime positive affect. Additionally, a significant interaction was found between ADS use the day before and the amount of time the caregiver spent in bed the following day, thus potentially ameliorating the caregiver’s sense of fatigue.

Study Limitations (as cited by authors):  The authors note that the secondary data they used for this study did not include information on activity levels, so they were not able to determine whether improved activity levels were the mechanism causing the direct association between sleep and well-being measures for caregivers and PLWD. Information on contextual factors, such as daily alcohol use and whether the caregiver and PLWD sleep in the same bed, were also not collected so could not be controlled for. Another limitation cited was the lack of objective sleep measures.

Authors’ Discussion/Conclusions:  The authors conclude that these findings indicate that regular ADS use may benefit sleep health for caregivers of PLWD and their care recipients by encouraging earlier and more regular sleep timing. While the research did not identify how ADS use resulted in shorter bedtimes and better sleep quality for the PLWD, the authors suggest that knowing there will be ADS the following day may lower anticipatory or actual stress and thus result in better sleep and reduced negative impacts on the caregiver and PLWD. It is also possible, the authors note, that PLWD and caregivers sleep better because ADS services also help PLWD become physically and socially active. With regard to policy implications, the authors recommend that long-term care policies provide stronger support for community-based respite programming like ADS to improve these outcomes for caregivers and the health of PLWD, and thus avoid early institutionalization of PLWD. With regard to future research, the authors suggest that sleep diaries be supplemented by actigraphy to determine if the current findings can be replicated using objective measures of sleep duration and quality.