Why caregivers in Pittsburgh are facing increased stress
Carol Moore called it a labor of love, the six years she spent caring for her younger sister afflicted with heart disease, diabetes and other medical issues.
When her sister, Margaret Christopher, a retired Pittsburgh Public Schools teacher and dean, died Sept. 30 of a massive heart attack, Moore proudly reflected on the time they spent together in their Garfield home.
“I know I was able to take very good care of her,” Moore, 76, also a retired teacher, said of her 72-year-old sister. “I was able to be there for her and with her. We were able to talk. We were able to laugh. We were able to have a good time.”
Moore was among 1,000 residents from Allegheny, Westmoreland, Butler, Armstrong, Beaver, Fayette and Washington counties interviewed this year for what the University of Pittsburgh called the most comprehensive local survey of “the caregiving landscape.”
The Pittsburgh Regional Caregivers Survey of relatives and friends taking care of adults over age 50 found 84 percent of the actual caregivers are over 50, compared to 73 percent nationally. Forty-eight percent of those they help are part of what's described as the “oldest-old” group — those over age 85 — compared to 32 percent nationally.
Those surveyed received no pay to care for someone age 50 or older. Caregivers typically prepare and distribute medicines, give baths, operate medical equipment and provide food and shelter.
The survey results follow a report last year that showed as the nation's elderly population grows — a result of people living longer and baby boomers reaching retirement age — little is being done to support the unpaid caregivers who support them.
Nearly 18 million informal caregivers in the United States provide care and support to older adults who because of limitations in their physical, mental or cognitive functioning require assistance, according to the survey. Census data show 18.1 percent of adults in Allegheny County are older than 65, compared with 15.1 percent nationally.
“Caregivers have been around forever, but what has changed very significantly is that the kinds of tasks that caregivers are being asked to do are much more complex and demanding,” said Richard Schulz, a Pitt professor of psychiatry. “Caregiving is for many a career that starts out very gradually and subliminally when an older relative begins to have minor health-related problems with respect to activities of daily living. It's kind of an insidious process. It begins gradually and may take years to unfurl, but the stress of the chronicity becomes long-term.”
Schulz heads the Caregiver Project, a two-year, $1 million initiative funded by the Stern Family Foundation and the Emily Kelly Roseburgh Memorial Fund of the Pittsburgh Foundation.
Moore, a widow, moved in with her sister in 2011 after Christopher's husband died.
She concurred that the tasks were easy at first but grew more complex as her sister's medical conditions increased. She made adjustments, such as moving her sister into a first-floor bedroom and installing a bathroom on the same level.
“It started out with me cooking her meals and making sure she took all her medicine,” Moore said. “In the beginning, she could do a lot of things for herself. By the end, it was hard just seeing her not being able to do things she used to do. She had really bad arthritis and couldn't walk very far. Things like that.”
Caring for her sister would have been much more challenging had Moore not been retired.
“It's especially challenging for working caregivers with full-time jobs,” Schulz said.
Schulz and Everette James, director of Pitt's Health Policy Institute, want to make Pittsburgh a center for caregiving innovations.
“This is a key moment where the region can look at this survey, understand needs of the population and move forward with policy interventions,” James said. “This survey is further evidence that the time has come for a concerted effort to improve caregiver policy at local, state and federal levels.”
The team believes more detailed policy would need to include four key components:
• A formal assessment of potential informal caregivers to determine their capabilities.
• Systematic support for caregivers that includes training to provide care and a referral system for additional needs.
• Training for health care providers on how to interact with, assess, engage and educate caregivers.
• A process to monitor and evaluate the previous three components.
“Pittsburgh could be the bellwether for the rest of the country on how these issues are recognized and reported,” said Scott Beach, interim director of the University Center for Social and Urban Research at Pitt, which conducted the survey. “Our region has more ‘oldest old' adults — those who are older than 85 years — than in the U.S. as a whole, and the people who provide informal care to them are also older than the national average for caregivers. Their caregiving duties are having more of an impact on their careers, they are spending more out-of-pocket money, and they report more negative aspects of being a caregiver.”
AARP Pennsylvania estimates there are 1.6 million family caregivers in the state providing 1.5 billion hours of unpaid work each year. The organization values that work at about $19.2 billion per year.
“Investing in a robust and systematic approach to caregiving should ultimately cut health care costs,” Schulz said.
Ben Schmitt is a Tribune-Review staff writer. Reach him at 412-320-7991, firstname.lastname@example.org or via Twitter at @Bencschmitt.