Understanding Dyadic Sleep Association between Persons with Dementia and Family Caregivers: A Mixed Methods Study
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Understanding Dyadic Sleep Association between Persons with Dementia and Family Caregivers: A Mixed Methods Study

Abstract

Background: Alzheimer’s dementia and related dementias (hereafter dementia) can affect sleep disturbance (e.g., nighttime awakening behaviors and poor sleep quality among persons with dementia (PWD). Estimates suggest sleep problems affect approximately 60-70% of PWD such as the difficulty of falling asleep and multiple wakes at night resulting in advanced cognitive impairment. In addition to the impact of sleep disturbance on PWD, sleep disturbance also is one of the foremost health problems affecting family caregivers of PWD. Family caregivers (e.g., spouses, partners, and adult children) experience the increased awakenings and demands of PWD at night which is associated with increased stress, depressive symptoms, and burden of caregivers. Little research has investigated dyadic interrelationships in sleep quality among PWD and family caregivers. PWD are often excluded from participation in sleep research due to memory deficits and impaired expressive language. Also, immigrant ethnic minorities (e.g., Korean Americans) are also understudied in sleep research. To fully understand sleep quality among PWD-caregiver dyads, we should include both perspectives together. Purpose: The specific aims of the study are (1) to describe dyads’ sleep parameters (i.e., total/deep/REM/light sleep duration, awaken duration, latency duration, sleep efficiency) using wearable technology (i.e., smart ring) and sleep diaries, (2) to identify interrelationships of sleep parameters between PWD and caregivers, and (3) to describe lived experiences of sleep disturbances and sleep interrelationships of PWD and their family caregivers. Methods: An observational descriptive study design was used using mixed methods including quantitative and qualitative approaches using wearable devices’ data (i.e., smart ring), daily sleep diaries, surveys, and individual interviews with cohabitating PWD and caregivers. Dyads were recruited in Southern California. Wearable technology (i.e., smart ring) monitored sleep parameters (i.e., total/deep/REM/light sleep duration, awaken duration, latency duration, sleep efficiency) for 4 weeks. Validated questionnaires assessed sleep disturbances and depressive symptoms for dyads, stress, and caregiving burden for caregivers. Thematic analysis was applied to dyads’ interview data transcribed verbatim in English. Caregivers provided verbal consent, plus surrogate consent for their PWD. PWD provided verbal assent. All PWD were assessed for their decision-making capacity. Results: A total of 11 dyads (N=22) participated in the study: mean age of PWD was 82.7 years (SD=2.3); caregivers were 69.1 years (SD=10.2). Nine PWD (18.2%) were male, all caregivers (100%) were female, and 4 dyads (36.4 %) used the same bed. Sleep parameters of deep/REM/ awaken duration/ Sleep efficiency of PWD were significantly correlated with those of caregivers, respectively (All Ps < 0.05). Major themes included (1) linked sleep disturbances between PWD and caregivers, (2) sleep disturbances beyond control, (3) mixed attitudes about sleep quality in dyads, (4) language challenges within and outside the Korean American dyads, and (5) dyadic activity: strategies that improve sleep quality for dyads. Conclusion: Findings demonstrate PWD’s sleep parameters (i.e., deep /REM sleep duration, awaken duration, sleep efficiency) were significantly correlated with caregivers’ ones. Additionally, findings illustrate sleep disturbances of dyads (PWD - caregivers) connected to each other were beyond their control. The Korean American dyads (i.e., parent PWD and offspring caregivers) expressed communication challenges among them and also, they addressed limited community resources available in their primary language. A dyadic approach and wearable device used in this study show the potential to measure objective sleep quality for both PWD and their caregivers, particularly the immigrant population. Future studies should address special attention on dyadic approaches and cultural competency with large samples and diverse ethnic minorities.

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