Dementia Care Research and Psychosocial Factors

Abstract

Background: Family caregivers of persons living with dementia (PLWD) in rural areas of the United States (U.S.) are isolated, under-served, and experience poor health outcomes. We evaluated the impact of an online workshop on the psychological well-being and health of rural caregivers.

Methods: We conducted a randomized controlled trial of an asynchronous 6-week online peer-led small group workshop, Building Better Caregivers, that is designed to increase self-care and caregiving skills. Caregivers use materials at home whenever they have time, self-pace their learning, and chat asynchronously with other caregivers through threaded discussion board conversations. Caregivers living in U.S. rural areas, 18+ years old, and giving care ≥ 10 hours a week to a family member or friend living with dementia were randomly assigned in a 3:1 ratio to intervention or attention control (phone calls and caregiver handbook, plus workshop after trial completion). Data were collected at baseline, 1.5 months, and 6 months. Primary outcomes were depressive symptoms and stress. Secondary outcomes were loneliness, caregiving self-efficacy, and self-reported health. Longitudinal outcomes were modeled with (generalized) linear mixed effect models and compared with corresponding contrasts between the two groups over time.

Results: 409 caregivers participated, and 88% were retained at 6 months. Participants were aged 62.3±11.2 years; 85% identified as female; 90% identified as heterosexual; 86% identified as White; 55% had ≥ bachelor's degree. (Table 1) Most provided care to a spouse (44%), parent (44%), or other relative (7%), and 76% lived with the PLWD. Among PLWD at baseline, 51% needed assistance with at least two activities of daily living (ADLs), and 39% required assistance with three or more ADLs. Compared to controls at 1.5 months, intervention group participants had lower depression symptoms, stress, and loneliness, and higher caregiving self-efficacy. (Table 2) At 6 months, intervention group participants had fewer depressive symptoms and were less likely to report poor health than controls. Specifically, intervention group caregivers maintained similar levels of depressive symptoms and self-rated health throughout the trial whereas controls worsened substantially.

Conclusions: Findings suggest that the Building Better Caregivers online workshop improves the well-being of rural caregivers who perform high burden care.