It Wears You Down

Caring for her father fell to Patrice Cottrell about nine years ago. It involved a few errands, at first. Doctor visits, marshaling his medications, coordinating health care and financial matters and scouting out and evaluating long-term care possibilities followed as his health declined.

There were late-night calls when he was anxious about living alone, but he refused professional home care and assisted-living options. For much of that time, she held a full-time job, opting for evening hours to better accommodate her father’s doctor appointments and other needs until his death last year at the age of 93.

“It wears you down,” said Cottrell, a 60-year-old Penn Hills woman with three grown sons living in three states. “Only people who’ve gone through it know the emotional toll and physical toll it takes. You’re constantly going. Your concerns are always about someone other than yourself.”

If anybody is likely to have similar experiences, it’s southwestern Pennsylvanians, a recent survey of local caregivers suggests.

Local men and women who care for elderly friends or relatives are more likely to be 50 years old or older than their counterparts elsewhere in the nation. Like Cottrell, they are more likely to care for very old adults, aged 85 or older. They spend more hours doing it. And they’re more likely to add medical and nursing tasks to their list of duties.

More than 1,000 “informal” caregivers aged 65 or older in the Pittsburgh Metropolitan Statistical Area were interviewed last year for the survey conducted by the University Center for Social and Urban Research at the University of Pittsburgh (UCSUR) and the Health Policy Institute’s Stern Center for Evidence Based Policy. The findings offer a comprehensive profile of local caregivers and the elderly friends and relatives they help.

Advances in medicine and health care have led more people to live longer, which has elevated informal caregiving to a national issue. Comparing the local findings with those from major national surveys reveals similarities and, in some cases, striking differences between caregivers in southwestern Pennsylvania and the rest of the nation.

“We have a situation that, because we have an older, more-disabled population needing more care, we have caregivers providing higher-intensity, more challenging care, spending more of their out-of-pocket money to provide support—and suffering greater adverse consequences, as a result,” said Richard Schulz, professor of psychology at the University of Pittsburgh School of Medicine and director of the Caregiver Project, which examines informal caregiving issues.

“To the extent this experience has adverse effects on them now, it’s likely that these effects will carry over into their own old age and may exacerbate their need for care.”

‘Oldest old’

Nearly half of local caregivers care for friends and relatives who are aged 85 years or older, the survey reports. This “oldest old” population on average is more frail, more likely to experience health setbacks and hospitalization and demand higher levels of personal care. Nationally, less than one-third of caregivers help people who are that old.

It’s a consequence of the region’s demographic profile. Older adults command a greater share of the Pittsburgh MSA population than they do in the nation, particularly adults over age 85, according to U.S. Census Bureau data. Nearly 17 percent of seniors in Allegheny County are 85 or older. By comparison, they make up less than 13 percent of the U.S. senior population.

That lends to older adults in the region having higher levels of disability and local caregivers providing higher intensity care.

Cottrell’s father battled heart and kidney disease, diabetes, colon cancer and dementia. About 27 percent of the seniors whom local caregivers help have Alzheimer’s disease and dementia. Two-thirds have high blood pressure; more than half have heart disease: 28 percent, diabetes; more than 25 percent have cancer; and more than 1 in 5 have had a stroke.

About 9 in 10 local seniors turn to relatives and friends to help them with such circumstances. And those caregivers are more likely to be older adults themselves: 84 percent of local informal caregivers are 50 years old or older compared to 73 percent nationwide.

“It takes a partnership of a lot of people for somebody to stay in the home or in the least-restrictive environment for them,” said Linda Doman, chairwoman of the Southwestern Pennsylvania Partnership for Aging. “Family caregivers are the glue that holds it all together.”

A challenging experience

Caring for elderly relatives and friends with mounting needs takes a toll on the lives and health of those who take on such responsibilities, survey findings suggest.

Local caregivers tend to spend more hours a week helping older adults. Nearly half spend at least nine hours. And 17 percent say it consumes 40 or more hours of their week. Only 12 percent of U.S. caregivers devote such long hours to caring for older adults.

About half of local caregivers are employed, similar to the national rate. But local caregivers are more likely to report that caring for older adults negatively affects their work. And 40 percent say it led them to go part time, retire early or give up trying to hold down a job.

But few local caregivers get formal help to ease their burden. Nearly 90 percent talk to friends and family about caring for older adults, but 94 percent don’t attend support groups for people in their situation. Only 10 percent get training to help them provide care. Fewer than 1 in 5 use a service that gives them respite from their caregiving duties.

And local caregivers are more likely to have health issues. They’re much more likely to report being bothered by pain and having low energy. While the rate of depression among local caregivers is similar to their national counterparts, 23 percent meet the criteria for anxiety compared to only 13 percent in the United States.

Perhaps it’s not surprising local caregivers feel less positive about their experience. Only 53 percent report “substantial” positive aspects of caring for older adults compared to 67.5 percent nationwide. And they’re twice as likely to report substantial negative aspects.

“I honored my parents. I feel I did the right thing,” Cottrell said. “But I never want to put that on my kids. Not what I went through. I’m just now learning how to take care of me again.”

Gathering crisis

Forecasts call for older adults to claim an increasingly larger share of the regional and national population. Residents 65 and older will make up 21 percent of Allegheny County’s population by 2040, according to UCSUR projections. And more than 1,000 will live to celebrate their 100th birthday.

“It’s not only a workplace issue, it’s also a broader health care issue that has to be addressed,” Schulz said. “We need major system changes in how we deliver health care to older adults that more formally recognizes and supports caregivers and their role in providing that care.”

At the same time, the pool of friends and relatives able to care for older adults is shrinking with the aging of the baby boom generation. In Allegheny County, the ratio of residents of caregiver age to older adults in need of care was 6:1 in 2010, according to an UCSUR analysis. By 2050, the ratio is projected to collapse to 3.6 caregivers for every person in need of care.

“In a way, today is the golden age for caregiving because people who are old and need help have the large baby boomer cohort behind them, able to provide that care,” Schultz said. “The situation becomes much more acute as baby boomers age and look to their children to provide that care.”