Effectiveness of a virtual health coach intervention for caregivers of persons with frontotemporal degeneration

Abstract

AbstractBackgroundFrontotemporal degeneration (FTD) is a common cause of young‐onset dementia. A tremendous burden is placed on caregivers who often sacrifice their own self‐care needs in order to manage the cognitive decline and subsequent functional impairments of their loved one, contributing to extraordinarily high levels of stress and depression. Health coaching is a support intervention that is personalized and multidimensional, providing support for coping with stress while fostering self‐care. Here we report on the efficacy of a virtual health coach intervention (Virtual Caregiver Coach for You; ViCCY) aimed at increasing self‐care behaviors and reducing stress in FTD caregivers.MethodIn this pilot randomized control trial, 30 caregivers of persons with behavioral variant FTD (bvFTD) were randomly assigned to either the intervention group (ViCCY) which included 10 coaching sessions over 6 months plus targeted health information through the internet or the control group receiving standard care augmented with the targeted health information through the internet. Caregiver self‐report measures on self‐care (primary outcome), stress, depression and coping were collected at enrollment, 3 and 6 months. Using linear mixed‐effects models, we evaluated differences in change over time between the intervention and control groups.ResultsThere were no significant differences in baseline characteristics between the groups. There was a significant group‐by‐time interaction for self‐care monitoring (t58 = 2.37, p = 0.0210) and self‐care confidence (t58 = 2.32, p = 0.0239) on the Self‐Care Inventory, demonstrating that caregivers who received the ViCCY intervention improved in their self‐care over time. The intervention group also reported lower self‐neglect over time compared to the control group (Health Care Self Neglect Scale: t58 = ‐2.38, p = 0.0417). No differences were observed between the groups on the secondary outcome measures of stress, depression and coping.ConclusionsbvFTD caregivers are a unique population who defer their own self‐care in response to the stress of caregiving. This RCT shows promise for remotely delivered health coaching as an innovative way to increase support that is urgently needed to reduce poor outcomes in this distressed and underserved caregiver population.