Caring for a Relative With Dementia in Long-Term Care During the COVID-19 Pandemic: A Prospective Longitudinal Study.

Abstract

The coronavirus disease 2019 (COVID-19) pandemic introduced unprecedented threats and disruptions for caregivers of people with dementia living in residential long-term care (LTC) facilities. Qualitative and cross-sectional studies have reported substantial negative effects of the pandemic on dementia caregivers' well-being, but little to no prospective research has examined the impact of COVID-19 on caregiver well-being using pre-pandemic assessments. The present study used longitudinal data from an ongoing randomized controlled trial of a psychosocial intervention to support family caregivers whose relatives had entered LTC. Data collection began in 2016 and continued through 2021. Caregivers (N = 132) completed up to 7 assessments measuring their depressive symptoms, self-efficacy, and burden. Latent growth curve models testing preregistered hypotheses revealed no significant effects of the pandemic on caregiver outcomes on average, though caregivers varied in terms of individual intercepts and slopes. Furthermore, factors such as caregiver-care recipient relationship closeness, care recipient's COVID-19 infection status, and caregivers' ratings of LTC facilities' COVID-19 policies did not significantly moderate trajectories of well-being. Findings highlight the heterogeneity of caregivers' experiences during the pandemic, and suggest caution when interpreting cross-sectional findings on the impacts of the COVID-19 pandemic on caregiver well-being and distress.