By Geralyn Magan
Research about family caregiving will help LeadingAge members reach out more effectively to support families of their residents and clients, predicts Robyn Stone, senior vice president of research at LeadingAge.
National and international researchers, including LeadingAge Senior Vice President of Research Robyn Stone, gathered recently at the University of California, Davis (UC Davis) to map out priorities for future research on family caregiving.
“Research about family caregiving is so important to the missions of LeadingAge members,” says Stone. “That research will help members reach out more effectively to support families of their residents and clients, while also offering those family members evidence-based strategies and products to help them carry out their caregiving responsibilities.”
The Research Priorities in Caregiving Summit: Advancing Family-Centered Care across the Trajectory of Serious Illness was designed to provide expert guidance that will eventually help federal funders and foundations make decisions about how best to allocate their research dollars for maximum impact in high-need areas. The Gordon and Betty Moore Foundation supported the summit, which was convened by the Family Caregiving Institute in the Betty Irene Moore School of Nursing at UC Davis.
“In 1950, there were approximately 3 adults over the age of 65 for every 100 people of working age,” says Institute Director Terri Harvath. “By 2050, that ratio is expected to be 30 to 100. It is incumbent upon us to figure out how we can best support the families who are providing care to older adults, because we as a nation and world cannot pay for the care that older adults will need.”
RESEARCH PRIORITIES
Fifty national and international experts in family caregiving spent 2 days identifying research priorities that “break new ground, not necessarily reinvent wheels,” says Stone, who was one of the first researchers to conduct national studies of family caregivers in the 1980s.
Summit discussions centered on 4 areas of research:
Trajectory of family caregiving: Summit participants recognized that caregiving can have either a gradual or a sudden onset, can be episodic or chronic, or have a combination of these features.
“You can be a caregiver for a month or you can be a caregiver for 20 years,” says Stone. “You could be caring for somebody with dementia, for someone with multiple chronic illnesses, or for someone who has cancer. It’s critical for researchers to address the different trajectories of caregiving, and identify ways to meet the resource needs of these various sub-groups.”
Technology in caregiving: The rapid acceleration of technology innovations was also a topic of discussion during the summit.
“We talked a great deal about how to use technology to support caregivers, either as a platform to disseminate information that caregivers need, or to actually help family members carry out their caregiving responsibilities,” says Stone.
Unique needs of family caregiver populations: The summit shed light on the unique experiences of caregivers from certain populations, such as under-represented minorities or members of the LGBTQ community, who have been largely ignored in previous caregiving research.
“The focus on cultural diversity was really very key for me,” says Stone. “The increasing diversity of the elderly population over the next 25 years, as well as the increase in diversity of families, raises a whole new set of questions about cultural competence and cultural understanding.”
Heterogeneity of family caregiving: The caregiving experience will be different, depending on whether a family member is caring for someone with dementia versus cancer, if care is handled from a distance or through someone living in the home, or if caregiving takes place in a rural or an urban area. Experts at the summit explored how these different variables might impact caregiving and how those variables should influence the research agenda.
Stone says she was pleased that summit participants also discussed the role of the formal workforce in supporting family caregivers.
“We talked about the potential for research that focuses not just on the dyad of the family caregiver and the care recipient and the family structure,” she says. “We also addressed how we can start building the competencies of both families and the formal workforce, particularly front-line aides, so they can work together as a team to take a person-centered approach and really provide the best care and support for elders.”
Over the next few months, the Family Caregiving Institute will continue refining the research priorities identified during the summit. Harvath and her team plan to solicit feedback on the priorities from funders and researchers before disseminating them widely.