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.

Public Health Relevance

Frontotemporal degeneration (FTD) is common cause of young-onset dementia and the vast majority of these functionally limited patients are living at home with care provided to them by their loved ones. This study has the potential to address this underserved and distressed segment of the population (caregivers of FTD patients) by improving their abilities to cope with the stress of providing daily care to a loved one and refocus their attentions onto themselves (self-care). If perceived stress decreases in caregivers and they are able to care for themselves more effectively, this study will provide a new and innovative way to increase the support available for these caregivers.

National Institute of Health (NIH)
National Institute of Nursing Research (NINR)
Research Project (R01)
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Huss, Karen
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University of Pennsylvania
Other Health Professions
Schools of Nursing
United States
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