Pennsylvania's "invisible workforce" provides $32 billion in unpaid care
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Retired New Hope resident Diane Chew gave up a second act as a business and life coach to care for her husband, Ben, full time after he was diagnosed with Lewy body dementia five years ago.
Why it matters: She's part of Pennsylvania's "invisible workforce" of family caregivers providing an estimated $32.5 billion in unpaid care this year, per a new report from researchers at Columbia University's Mailman School of Public Health. That's up from $22 billion in 2023.
The big picture: Nationwide, millions of families are helping to fill the void of a "shrinking healthcare workforce," per the report.
- The U.S. is facing a nursing shortage that's projected to reach more than 63,000 nurses in 2030, per the American Association of Colleges of Nursing.
- With little help from their states, many family caretakers are left drained from juggling competing responsibilities, including work and caring for children.
What they're saying: "We have soul contracts," Chew, 69, says of her commitment to her husband, whom she met at Penn State five decades ago.
- Chew doesn't qualify for state aid. She has had to dip into the couple's retirement fund to pay for Ben's care, which costs $15,000 a month, including help from a night nurse so Chew can sleep.
- It'd be less expensive to place Ben at a full-time dementia care residential facility, but Chew can't stand the thought of doing that to the "love of my life."
"I have siblings," says Chew, who posts about caretaking and the couple's adventures on social media. "If I have to end up on their couch one of these days, I will."
How it works: Researchers used Bureau of Labor Statistics data from 2024 to assign hourly wages to various caretaking roles — nurse, cook, financial planner — that they used to calculate unpaid labor totals for each state.
- Because most dementia patients require round-the-clock care, such caretakers would need to make at least $100,000 to be fairly compensated for the hours of unpaid work they perform, John McHugh, one of the report's lead researchers, tells Axios.
- Dementia care accounts for 40% of Pennsylvania's unpaid caregiver costs, per a statewide snapshot.
Threat level: Nearly half of U.S. states are on the brink of caretaking crises, including Florida ($60.7 billion), Louisiana ($12.8 billion) and Georgia ($26.8 billion), which require immediate attention, per the report.
- Pennsylvania is one of 21 states that are considered "safe for now," the report says, though researchers warn rising dementia cases could push some of those states over a tipping point.
- Cuts to programs like Medicaid, which some Republicans in the House are pushing, could also propel "some of these states into an at-risk category," McHugh says.
Zoom in: Pennsylvania's situation is stable thanks to an influx of nurses, as well as more than 4,500 home care agencies operating in the Commonwealth, according to the state Department of Health.
- The state has about 85 home health aides per 1,000 residents over 65, per the report.
Yes, but: Pennsylvania has an aging population; 20% of the state's residents are 65 and up.
What we're watching: The report calls for Pennsylvania lawmakers to enact paid family leave and provide tax credits to ease the financial burden on unpaid caretakers.
- State lawmakers in March advanced a bill that would provide a family and medical leave program enabling workers to get paid a percentage of their wages for between 12 and 20 weeks.
- More than a dozen states have a similar program. Pennsylvania's would cover several circumstances, including people caring for family members with serious medical conditions.