# Improving Self-Care of Informal Caregivers of Adults with Heart Failure

> **NIH NIH R01** · UNIVERSITY OF PENNSYLVANIA · 2020 · $403,378

## Abstract

Abstract
Informal caregiving for a person with dementia is incredibly demanding and stressful, particularly for caregivers
of persons with frontotemporal degeneration (FTD). FTD is a common cause of young-onset dementia with no
known cure. It is an understudied neurodegenerative disease that affects the frontal and temporal lobes of the
brain and results in progressive deterioration in executive functioning, language and social comportment that
ultimately leads to death. Most patients with FTD remain in the community through the end of their lives,
depending on informal caregivers to assist them. As a consequence, FTD caregivers report significant stress
and poor self-care that result in high levels of physical and mental health issues. Very few supportive
interventions have been tested specifically for FTD caregivers, and those that exist have generally focused on
education around patient behavior management. Health coaching is a support intervention that is personalized
and multidimensional, providing support for coping with perceived stress while fostering self-care. Caregiving
duties often confine caregivers to the home and many are unable to attend in-person sessions, so we will
evaluate a virtual support intervention (ViCCY [“Vicky”] – Virtual Caregiver Coach for You), that is currently
being tested in heart failure caregivers (R01NR018196). In this administrative supplement, we propose to
enroll 30 informal FTD caregivers with poor self-care (Health Self-Care Neglect scale) randomizing them 1:1 to
an intervention or control group. We will leverage the resources in R01NR018196 to deliver standard care
augmented with Health Information (HI) through the Internet, but the ViCCY caregiver group will also receive
10 front-loaded coaching support sessions tailored to individual issues. The control group will have access to
the same HI resources over the same interval, using the same Internet program, but without coaching support.
At baseline, 3 and 6 months we will collect caregiver data on measures of self-care, stress, depression, coping,
and health status (Aim 1). Previous work suggests that caregivers must adjust their own affect and demeanor to
meet the needs of the patient with behavioral symptoms and negative emotional-behavioral responses may
increase behavioral and psychological symptoms of dementia (BPSD). Therefore, we will also explore the
relationship between caregiver self-care and BPSD in the person with FTD (Aim 2). The results of the
proposed study will support a future R01 application where we will evaluate efficacy and cost-effectiveness of
ViCCY in FTD disorders. This application meets the specific requests of NOT-AG-20-008.

## Key facts

- **NIH application ID:** 10121151
- **Project number:** 3R01NR018196-02S1
- **Recipient organization:** UNIVERSITY OF PENNSYLVANIA
- **Principal Investigator:** BARBARA J RIEGEL
- **Activity code:** R01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2020
- **Award amount:** $403,378
- **Award type:** 3
- **Project period:** 2019-01-23 → 2023-11-30

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10121151

## Citation

> US National Institutes of Health, RePORTER application 10121151, Improving Self-Care of Informal Caregivers of Adults with Heart Failure (3R01NR018196-02S1). Retrieved via AI Analytics 2026-06-11 from https://api.ai-analytics.org/grant/nih/10121151. Licensed CC0.

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