The Family Caregiving Institute at the Betty Irene Moore School of Nursing at UC Davis brought together more than 50 national and international experts in family caregiving at a two-day summit designed to map out research priorities.
Organizers of The Research Priorities in Caregiving Summit: Advancing Family-Centered Care across the Trajectory of Serious Illness, which took place March 22-23, aim to identify research priorities so that investment by funders yields the greatest impact. The agenda they developed emphasizes interventions that incorporate multicultural approaches and the use of technology to optimize care for a person with serious illness. A variety of disciplines were represented in the conversation, including nursing, medicine, social gerontology and computer technology.
“Every year, there are fewer people available to engage in family caregiving than we have people who are turning 65. In 1950, there were approximately three adults over the age of 65 for every 100 people of working age. By 2050, that ratio is expected to be 30 to 100,” said Terri Harvath, executive associate dean and director for the institute at the School of Nursing. “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 to pay for the care that older adults will need.”
The number of older adults living with chronic disease, functional decline and serious illness is growing exponentially at a time when availability of both family and professional caregivers is strained. It is estimated that one in five American households is involved in a wide range of caregiving activities that vary in intensity from checking on aging parents to providing total care to a disabled family member. Summit organizers believe achieving optimal outcomes for this vulnerable population involves advancing the knowledge needed to improve the quality of care delivered by families, health professionals, and community programs.
“I hope we don’t recreate a wheel and build on the shoulders of the work that has come before us,” said Kathy Kelly, executive director of the Family Caregiver Alliance. “I hope we start to think about caregiving more creatively, because the new generations of caregivers are not thinking in the most tried-and-true ways we’re accustomed to. We have to be forward thinking in our approach.”
“The most important goal of this conference is an action plan,” added Kenneth Hepburn, a gerontologist and professor at the Nell Hodgson Woodruff School of Nursing at Emory University. “I think nursing gets this issue better than most fields I see. The fact that resources have been poured into a caregiving institute gives me tremendous optimism.”
The research priorities focused on four main areas:
Trajectory of family caregiving
Since caregiving can have either a gradual or a sudden onset, can be episodic or chronic, or a combination of these, caregivers needs and most-needed supports over time must be understood by researchers.
Technology in caregiving
Technology innovations continue to rapidly accelerate. Researchers need to understand how to best use technology to support caregivers either in their learning needs or as an adjunct to care.
Unique needs of family caregiver populations
Historically, caregivers from certain populations, such as under-represented minorities or members of the LGBTQ community, are largely ignored in previous caregiving research. The summit sheds light on their unique experiences and what additional supports may be needed.
Heterogeneity of family caregiving
Caregiving is different whether caring for someone with dementia versus cancer, if care is handled from a distance or through someone living in the home, in a rural or an urban area. Experts hope to better understand how those different variables impact caregiving and how they need to influence the research conducted.
“There is increased attention focused on family caregiving by policy makers and the National Institutes of Health. This summit builds on those reports and conferences,” Harvath said. “By the end of the summit, we hope to have a list of prioritized areas for caregiving research that can help funders, both federal and also foundations interested in this area, to make decisions about how best to steward the research dollars to have maximal impact in high-need areas.”
Funded through a grant from the Gordon and Betty Moore Foundation, the goal of the Family Caregiving Institute is to advance research, education and policy to support caregivers in the demands that impact their mental, physical and financial health, and threaten their quality of life.
“We’re very fortunate to have received this funding in order to bring in leaders from across the country to weigh in on priorities in family caregiving,” Harvath said. “Coupled with our faculty — who have expertise in aging, technology and family caregiving — it puts us in a good position to be a broker of this very important conversation.”