iCare4Me for FTD: A pilot randomized study to improve self‐care in caregivers of persons with frontotemporal degeneration

Author:

Massimo Lauren12,Hirschman Karen B.2,Aryal Subhash2,Quinn Ryan2,Fisher Lauren2,Sharkey Michelle2,Thomas Gladys2,Bowles Kathryn H.2,Riegel Barbara2

Affiliation:

1. Frontotemporal Degeneration Center, Department of Neurology University of Pennsylvania Philadelphia Pennsylvania USA

2. School of Nursing University of Pennsylvania Philadelphia Pennsylvania USA

Abstract

AbstractIntroductionA 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.MethodsThirty‐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.ResultsThere 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).DiscussionThis 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.

Funder

National Institutes of Health

Publisher

Wiley

Subject

Psychiatry and Mental health,Neurology (clinical)

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