ICare4Me for FTD: A pilot randomized study to improve self-care in caregivers of persons with frontotemporal degeneration.

Abstract

A tremendous burden is placed on frontotemporal degeneration (FTD) caregivers who sacrifice their own self-care to manage the functional impairments of their loved one, contributing to high levels of stress and depression. Health coaching provides support for coping with stress while fostering self-care behaviors. We report on preliminary evidence for efficacy of a virtual health coach intervention aimed at increasing self-care. Thirty-one caregivers of persons with behavioral variant FTD (bvFTD) were assigned randomly to an intervention group, which included 10 coaching sessions over 6 months plus targeted health information or the control group receiving standard care augmented with the health information. Caregiver self-care (primary outcome), stress, depression, coping, and patient behavioral symptoms were collected at enrollment and 3 and 6 months. Change over time was evaluated between the intervention and control groups using linear mixed-effects models. There was a significant group-by-time interaction for self-care monitoring (t58 = 2.37, p = 0.02 and self-care confidence (t58 = 2.32, p = 0.02) on the Self-Care Inventory, demonstrating that caregivers who received the intervention improved their self-care over time. Behavioral symptoms were reduced in bvFTD patients whose caregivers received the intervention (t54 = -2.15, p = 0.03). This randomized controlled trial (RCT) shows promise for health coaching as a way to increase support that is urgently needed to reduce poor outcomes in FTD caregivers.