Time for Living & Caring: An Online Intervention to Support Dementia Caregivers’ Use of Respite

Abstract

AbstractBackgroundBecause of the demanding care needs associated with dementia, family caregivers often have increasing anxiety and burden over time. Respite, defined as time away from caregiving, is the most requested type of caregiver support and is hypothesized to benefit caregiver wellbeing. However, many caregivers report low respite satisfaction, feeling as though they wasted their time or that they did not know how to use their respite time in a way that benefited them.MethodTime for Living and Caring (TLC) is a virtual coaching “app” that helps caregivers schedule and plan their respite time. With funding support from NIA (R01‐AG061946), we conducted a pilot test with dementia caregivers (n = 159), randomized into one of two delivery methods – an immediate group that could access all features and functions of the app for 16 weeks, and a delayed‐attention group that received initial instructions on calendaring for 8 weeks and then the more interactive coaching features during the second 8 weeks. This additive “dosing” model where the immediate group received “2 doses” in the first 8 weeks while the delayed‐attention group got “1 dose” initially and “1 dose” during weeks 8‐16 was evaluated using generalized linear modeling on caregiver‐reported anxiety and burden levels over time.ResultsBoth immediate and delayed‐attention groups reported 1) increased respite time, 2) increased respite satisfaction, and 3) felt that they were better caregivers because of respite. At 8 weeks, the immediate group did not change in anxiety while the delayed group worsened (p < 0.001). At 16 weeks, the groups were similar in their anxiety levels. By the 20‐week follow‐up period, when neither group had access to TLC, both groups were worsening in their anxiety. Caregiver burden worsened at 16 weeks for the immediate group.ConclusionTLC shows potential as an intervention model to improve respite quality and minimize increases in anxiety and burden over time. Intervention delivery that provides additional features or instructions after the initial orientation may keep participants more engaged and result in better caregiver outcomes over time, compared to providing the full set of online resources all at once.