By Geralyn Magan
Researchers are seeking to adapt an evidence-based intervention for family caregivers so it addresses the unique needs of those who care for loved ones from afar.
A two-year, $385,000 grant from the National Institutes of Health (NIH) will help researchers at the LeadingAge LTSS Center @UMass Boston begin work on developing and testing an intervention to support long-distance caregivers of older adults with Alzheimer’s disease and related dementias who live in the community and receive non-medical home care services.
Verena Cimarolli, director of health services research and partnerships at the LTSS Center, is the principal investigator for the research study. Kathrin Boerner, an LTSS Center fellow and professor of gerontology at UMass Boston, will serve as co-investigator. The Gerontology Department at UMass Boston is a project partner.
Research published this summer in The Gerontologist by a group of authors, including Cimarolli and Boerner, showed that long-distance caregivers offer assistance that is similar to assistance provided by geographically proximate caregivers. However, distance adds an extra layer of complexity to the caregiving role and can intensity care-related stress and burden. Researchers found that long-distance caregivers could benefit from supportive services as they cope with this added burden.
Long-distance caregiving is a common and growing phenomenon, according to Cimarolli. As many as 11% of family caregivers in the U.S. live more than two hours away from their care recipient, and half of them are primary caregivers. Most (85%) care recipients with long-distance caregivers have significant cognitive impairment and close to 50% of care recipients with significant cognitive impairment live in the community.
PHASE 1: ADAPTING AN EVIDENCE-BASED INTERVENTION
During the first phase of the NIH study, researchers will work with an advisory committee of caregiving experts to modify the “Resources for Enhancing Alzheimer’s Caregiver Health” (REACH) intervention so it addresses the unique challenges facing long-distance caregivers. The research team will develop a manual and training materials for delivering the new intervention to long-distance caregivers.
REACH, a dementia caregiving intervention originally developed with funds from NIH, is designed to empower caregivers to problem-solve challenges they experience. The program is geared primarily to caregivers who live a relatively short distance from the care recipient and are involved in day-to-day caregiving tasks.
Details of the adapted intervention are yet to be determined. But Cimarolli expects that it will feature individual support sessions between long-distance caregivers and their trained caregiving coach. The sessions will be conducted through video conferencing using internet-connected tablets provided to study participants.
PHASE 2: FEASIBILITY OF THE INTERVENTION
During the second phase of the study, a sample group of 40 long-distance caregivers and their care recipients will be recruited to help researchers examine the feasibility of conducting the adapted intervention. Staff of the Family Caregiver Alliance will deliver the intervention.
Caregivers participating in the study will use their tablets to attend support group sessions with other long-distance caregivers, and to connect with their care recipients, who will also receive internet-connected tablets. The care recipient’s home care aide will help the care recipient use the technology.
“We won’t be looking at whether the intervention is effective in reducing caregiver burden,” clarified Cimarolli. “We’ll be asking whether it is possible to get an intervention like this up and running and implemented. Are we going to be able to recruit long-distance caregivers of someone who lives at home and receives home care? Can we recruit an ethnically diverse group of caregivers? How will the long-distance caregivers respond to the intervention?”
LONG-TERM RESEARCH GOALS
Researchers will use study results to further refine the design and content of the long-distance caregiver intervention. Then, they plan to apply for additional funding.
“Our long-term goal is to conduct a randomized trial where we will look at the effects of the intervention,” says Cimarolli. “Can it reduce caregiver burden? Will it reduce depression and stress? The clinical trial will help us determine the benefits of this intervention for caregivers.”