Like many family members who start to care for an aging relative, Janet Lore learned as she went.
Lore, 65, of Irwin, started caring for her mother, Jeanne Anthony, when the older woman moved to Irwin from Levittown, Bucks County, in 1994 at the age of 67.
It wasn’t much trouble at first. When her mother needed to go somewhere, Lore drove her. But Anthony, whom the family called Nan, enjoyed being at home, reading, cooking and cleaning. Then glaucoma weakened her vision, making those activities more difficult.
Soon traces of dementia appeared — the once-organized woman left things in unusual places, such as a bill on an ironing board. Lore discovered her mother had been missing payments and started writing the checks herself. Family members started to question how often Nan was eating. Nearly a year ago, two days after Thanksgiving, Lore found her mother collapsed in a bathroom.
“The whole thing about caregiving is I think it all happens in little steps,” Lore, a retired schoolteacher, said in an interview.
She, her husband and their daughter each helped care for Nan until her death in March. They all said that talking with someone who had been a caregiver might have helped, but they didn’t know who to ask.
Their experience is common, according to a sweeping new report on caregiving in America led by the University of Pittsburgh’s director of gerontology, Richard Schulz. 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, the report states.
Commissioned by the National Academies of Sciences, Engineering and Medicine, the report, “Families Caring for an Aging America,” draws on published studies on caregiving and aging to produce federal- and state-level recommendations on how to meet caregivers’ needs.
“We need to embrace the role of family caregivers in the health care system,” Schulz said in an interview.
Schulz and Everette James, director of Pitt’s Health Policy Institute, aim to make Pittsburgh a center for the innovations the report calls for. The Health Policy Institute partnered with California-based RAND Corporation to launch a $1 million effort called The Caregiver Project. The project will continue research on local caregiving and try to find caregivers in need.
The 280-page report estimates that one in five Americans will be 65 or older by 2030, with the greatest growth in the “oldest old” who are living longer with help from advances in medicine. A trend toward home-based care and away from nursing homes means caregivers are responsible for more complex medical tasks at home, Schulz said.
“Things that medical professionals used to do are now being done by caregivers,” he said.
Families are shrinking, leaving fewer people to perform those tasks, according to the report.
Randomized controlled trials have shown that education and training can improve quality of life for caregivers and care recipients and save money: Counseling and increased involvement in care management are associated with drops in nursing-home admissions for older adults with dementia, according to the report.
The report recommends drawing on existing community resources — including Area Agencies on Aging, which in Pennsylvania are funded by state lottery dollars — to help increase education and training.
Mildred Morrison, administrator of the Allegheny County Area Agency on Aging, said the agency has services and lots of information to offer. Morrison said she wishes people would ask for help earlier.
“People first approach us at the point of crisis. They’re either burnt out or they have clashes in their lives,” she said.
That contact usually starts a sort of negotiation, she said, in which a staffer from the agency meets with family members and finds out what tasks the family can do and what the agency could help with or arrange for help with.
One entry point for starting to help caregivers, according to the report, is the hospital. Involving caregivers in planning when seniors leave hospitals has been shown to reduce return trips to the hospital and to shorten stays, according to the report. Many hospitals already involve caregivers in planning, and a Pennsylvania law is set to go into effect in the spring requiring hospitals to involve caregivers in discharge planning.
Acknowledging economic restraints in Medicare, Social Security and other funding sources, the report recommends finding the most vulnerable caregivers and helping them first. Efforts to find people in need could include insurance companies, which often insure entire families and could be able to identify opportunities for aid in medical records and the relationships the companies have with their customers, Schulz said. Improving family caregiving — whether by supporting a caregiver in need or finding new opportunities for a family member to provide services — could save the companies money, he said.
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.
“With the numbers growing so quickly and so rapidly, we think from the AARP perspective, it’s a very critical issue,” said Ray Landis, the organization’s advocacy manager in the state.
Like Morrison, Landis said his organization often hears from people who need help with caregiving quickly but don’t know where to go. Many calls come from out-of-state relatives, he said.
“The thing we’re struggling with is how to get the information out to people before a crisis situation,” he said.
People increasingly call with questions about getting help changing an IV or performing other medical tasks, he said.
“That’s a lot different than preparing meals or helping in bathing or dressing or something,” he said.
The AARP supports recommendations in the report calling for increased assistance for caregivers, including some kind of respite, he said. Anecdotal evidence indicates that caregivers who are too stressed can become sick, he said.
Janet Lore, after helping her mother following the collapse, found that Thanksgiving leftovers in the older woman’s refrigerator remained untouched two days after the family meal, suggesting she might have been lying in the bathroom for a long time. Her mother wouldn’t say, or didn’t know, how long it had been.
After another collapse a little while later, the family decided to send her to a senior living facility in Greensburg. She spent time there and in hospitals before developing pneumonia. She was moved to a hospice and died March 11 at 89.
The family was at the same time caring for the mother of Bob Lore, Janet’s husband. Helping care for both women prompted Lore’s daughter, Amy Kowinsky, 39, who works in quality improvement at a UPMC hospital, to begin studying gerontology.
Kowinsky said she saw the effects her grandparents’ aging had on her parents and wants to try to improve the experience for others.
Had Nan been more closely connected to other people in the community, the burden on the family might have been less, Kowinsky said. Caregiving resources — and some sympathy — would have been helpful, she said.
Wes Venteicher is a Tribune-Review staff writer. Reach him at 412-380-5676 or email@example.com.