Backed by a $1 million grant, Pitt researchers are launching a study into the effects of providing long-term care for elder relatives.
The Stern Foundation and the Emily Kelly Roseburgh Fund of the Pittsburgh Foundation are providing the money to back Pitt’s new Caregiver Project, an effort to study family members who work full time or nearly full time to provide care for an older relative with cognitive, mental or physical limitations.
For now, the project aims to compile concrete data on the lives and needs of family caregivers, to inform the direction of later initiatives and public services. Researchers don’t have a set timeline for how long this first survey will take.
Pitt’s Health Policy Institute, the University Center for Social and Urban Research and the RAND Corporation are also participating in the project, which aims to bring awareness to the high — and rising — demand placed on caregivers in order to improve the support services available to caregivers and their families.
Everette James, director of Pitt’s Health Policy Institute, said the project is beginning at an ideal time, given the high amount of responsibility shouldered by many family caregivers.
“It became clear to us that the caregivers’ burden was rising to a point of national concern,” James said.
The increasing burden placed on caregivers is due to the changing demands of taking care of an elderly relative. In the past, a caregiver’s tasks included helping with menial household chores and self-care such as eating and bathing.
Now, many caregivers also provide medical care in the form of giving injections and managing medication, according to Richard Schulz, a Pitt psychiatry professor and the director of the Institute on Aging. Medical advances, shorter hospital stays and an increase in new home-care technologies have pushed responsibilities from hospitals to homes, according to the Family Caregiver Alliance.
James said the project will include professionals from within the University and beyond, and from a variety of fields such as nursing and urban studies, in order to ensure they address all aspects of the caregiver experience.
“It makes sense for so many people to be helping us out. We have the perfect environment to conduct this sort of research,” James said. “Pittsburgh has a large elderly population, and we have a large concentrated hospital and insurance network.”
Allegheny County has long been one of the oldest counties in the country. A 2014 report from the University Center for Social and Urban Research found that as the population declined, the number of people who made up the older generation increased to 18 percent, making Allegheny County one of the oldest. Researchers predict that the proportion of elderly residents will increase to 22 percent by 2030.
Nationally, members of the baby boomer generation — Americans born right after World War II, when the birth rate in the country spiked — are soon going to reach an age where they need assistance. The American population aged 65 and up is expected to double in the next 15 years.
This makes now the perfect time to start caregiver research, said Jeffrey Wasserman, director of RAND Health.
“There already is a large demand for caregiving, and it’s just going to grow while the supply of caregivers shrink,” Wasserman said.
The Caregiver Project drew inspiration in part from a report from the Committee on Family Caregiving for Older Adults, a part of the National Academy of Sciences, Engineering and Medicine, which Schulz chairs. The report, “Families Caring for an Aging America,” included the work of about 20 specialists and took about two years to complete.
For some family caregivers, caring for a loved one strengthens the bond between the caregiver and their older relative.
But for many people, the responsibility and the amount of necessary work causes significant distress.
Caregivers of older adults often work around-the-clock to take care of their loved ones, which leaves little time for relaxing or having a social life. The report showed that certain risk factors –– such as low socioeconomic status, lack of social support and a care recipient with high levels of suffering –– are more likely to predict negative health side effects for the caregiver.
Caregivers may also have to quit their jobs in order to support family members, which can lead to financial strain. Because of these factors, caregivers of older adults are more likely than the average person to experience elevated levels of stress and emotional discomfort.
In its report, the Committee on Family Caregiving for Older Adults recommended the incoming governmental administration develop a strategy to provide support services to family caregivers.
“We have no system in place that allows us to identify how many caregivers there are, what they do, what they earn and so on,” Schulz said. “It’d be relatively easy to take advantage of some existing national surveys to get a better handle of the number of families with a caregiver in the U.S.”
The Caregiver Project is implementing one such survey in western Pennsylvania to compile information on the needs of caregivers and the amount of resources available to them. James said the survey, which is funded by the grant, will give the researchers “more information on how to go about implementing a system to relieve the burdens of a caregiver.”
In addition to nationwide initiatives, the committee also recommended state governments implement programs to address the needs of older adults and their caregivers.
A Pennsylvania state-run program, called the Pennsylvania Caregiver Support Program, is an example of what the committee had in mind for other states. That program helps caregivers or people who are 55 or above who care for related children by providing assistance, education and counseling and reimbursement for supplies.
In Pittsburgh, the ultimate goal of the project is to act as a catalyst for encouraging more research on family caregivers in America, according to James.
“We plan on making western Pennsylvania the headquarters for caregiving research in the U.S.,” James said.