A pilot study published in the journal Alzheimer’s & Dementia: Translational Research and Clinical Interventions tests if the remote support program “Virtual Caregiver Coach for You” (ViCCY) was effective in helping care partners of people with behavioral variant FTD (bvFTD) maintain better self-care habits. The study was co-authored by AFTD grant recipient Lauren Mossimo, PhD, CRNP, and others from the University of Pennsylvania FTD Center and School of Nursing.

As the authors emphasize, care partners for those with FTD face numerous challenges while supporting a loved one, with studies consistently finding that FTD care partners suffer from higher levels of distress and depression than those with other forms of dementia. A landmark 2017 study, funded and co-written by AFTD, found that 67 percent of FTD care partners reported declines in their own health. Additionally, a 2013 study underscored through interviews with spouses of persons diagnosed the isolation and frustration care partners feel while simultaneously dealing with a distressing shift in their family dynamics.

Care partners facing high stress are less vigilant towards their own needs, often neglecting to engage in self-care. Not only does this significantly impact the mental and physical well-being of care partners, it can make managing the behavioral symptoms of the person diagnosed more difficult, especially in a disease like bvFTD.

ViCCY, which care partners can access from the comfort of home, aims to provide support for coping with this stress while encouraging care partners to look after their needs. Advanced practice nurses with extensive health coaching training administered ViCCY during its pilot phase. The nurses used a combination of psychological and behavioral practices to guide care partners in identifying their personal values, solving the problems they faced, and putting care goals into action. Topics discussed by the nurses included the importance of sleep, relaxation techniques, and more.

To evaluate ViCCY, researchers enrolled 31 participants from the University of Pennsylvania Frontotemporal Degeneration Center, with participants divided between a group testing ViCCY and a control group. Care partners in both groups received an iPad with access to health information, including disease-specific resources from AFTD and caregiving resources from the Caregiver Action Network and the National Alliance of Caregivers. In addition to these digital resources, participants in the ViCCY test group also received 10 counseling sessions for six months.

Researchers used the Self-Care Inventory (SCI) to evaluate if ViCCY effectively encouraged self-care behaviors. Using the SCI, researchers checked to see if there were improvements in:

• Self-care maintenance: A care partner’s ability to promote their own well-being.
• Self-care monitoring: A care partner’s capacity to recognize symptoms of stress/depression.
• Self-care management: A care partner’s capability to actively manage the above symptoms.
• Self-care confidence: A care partner’s confidence in their ability to manage their well-being.

The research team also asked participants to report on the severity of behavioral symptoms of their loved ones using the Neuropsychiatric Inventory (NPI), a tool used to measure the occurrence of behaviors in diseases like bvFTD. The authors hoped to determine if better care partner self-care affected symptom severity using the NPI.

Across the four domains of self-care, researchers noted the following results among the participants who took part in ViCCY sessions:

• The improvements in self-care maintenance were insignificant, with researchers noting an average monthly increase of .12 points in SCI scores in this area.
• Participants saw a significant improvement in self-care monitoring, reporting an average increase of three points per month.
• Improvements in self-care management were not statistically significant, with participant care partners reporting an increase of .10 points per month on average.
• Self-care confidence, however, improved by three points per month on average, according to the scores reported by participants.

The researchers noted an overall decrease in self-care neglect among care partners who participated in ViCCY compared to those in the control group. Additionally, the care partners in the ViCCY group reported an improvement in the behavioral scores for persons diagnosed, which the authors highlighted as preliminary evidence that health coaching could help improve health outcomes for persons diagnosed and care partners.

The authors note that the smaller study size of the pilot may have contributed to a lack of findings on some measures and that further studies are needed. Furthermore, the study participants were largely ethnically, racially, and educationally homogenous; the authors noted that more diversity in future studies is required.

Self-care is easier said than done when you’re a care partner, so AFTD offers Comstock Respite Grants to help care partners look after themselves. Respite Grants can be used for services such as yoga, meditation, or other classes and resources to help you maintain your mental and physical well-being.

Co-author Dr. Lauren Mossimo received an AFTD Pilot Grant in 2018 for an app-based intervention for apathy in FTD. Dr. Mossimo has also served as a presenter for previous AFTD Educational Webinars – she most recently joined David Irwin, MD, to present the webinar Brain Donations — Who, What, Where, When, and Why?