As prices have ticked up in recent years, the cost to caregivers has skyrocketed. A study, released Wednesday by AARP, finds that family caregivers — people helping out disabled, chronically ill or elderly adults — now spend an average $11,508 out of pocket each year. That's roughly 60% more than just five years ago, and adds up to 31% of a caregiver's income, on average.
The increase during those years is more than twice the overall rate of inflation of 24%, as measured by the federal Bureau of Labor Statistics' Consumer Price Index.
What's driving the ramp-up? Food, housing and medical expenses are the biggest chunk, finds the study, which queried 2,538 family caregivers.
In other words, just the basics.
The bump in costs comes as family caregivers take on more care and more complicated medical responsibilities at home, says Megan O'Reilly, vice president of governmental affairs at AARP. "The more care that's needed, the more it costs."
And increased spending is only part of the story. The demands of caregiving often require people to reduce their working hours or quit work entirely, the survey finds. It's a double whammy: increased costs on top of lost income.
Increasing demands, falling income
Meghan Maher has seen that first-hand. Just seven weeks after the birth of her first baby, her mother was diagnosed with advanced cancer. Suddenly, Maher was a "sandwich" caregiver — parent and child needing her at the same time.
At first, she tried to manage it all. She returned to her career in cancer research after maternity leave, but keeping up with the demands of work, her mom and her newborn son was too much.
She shrank her hours to part time. But even that wasn't manageable. There was no way to attend all her mother's appointments, coordinate her care, and also be available for big deadlines on the job.
She quit, and the family's income fell by half. Because her husband had a good job, they weren't struggling, but "it was definitely scary," she says now. As her mom got sicker her parents moved in, increasing the household expenses.
Soon after her mother's death in 2017, her father had a series of major complications from abdominal surgery and was critically ill for months. Maher needed to be by his side during hospital stays, advocating for him on a moment's notice, so now the family also needed to pay for child care. She estimates the cost at about $10,000 a year.
Her father eventually recovered, and the family was able to manage despite the difficulties. Many aren't so lucky.
About half of all family caregivers say they've made major financial sacrifices, according to the AARP report: Working more hours, cutting savings, or even drawing down on money put away for retirement.
More family caregivers, bigger bills
Many Americans deal with the cost of care, and more will in the future. About 63 million people now provide ongoing help for a family member or friend — roughly 1 in 4 adults. The need will likely grow: An estimated 70 percent of the people turning 65 today will need some form of help as they age.
Medicare does not pay for routine help either at home or in a facility, and that care is expensive. In 2025, 40 hours of in-home caregiving help a week ran about $72,792 a year, according to the insurance company Genworth, which conducts annual surveys of the cost of care. Skilled nursing costs an average of $115,000 per year for a shared room.
When Maher returned to work, she became a professional death doula. That means she helps clients with the emotional and practical challenges at the end of life. She's self-employed, so she can control her own schedule and limit the number of clients she serves. It allows her the flexibility to help her father as he ages. But her income is half what it would have been in her old career.
With the clients she helps, she sees other ways that care costs pile up. In Florida where she lives, it's routine for chronically ill people to hire an attorney in order to qualify for Medicaid, which unlike Medicare does foot the bill for long-term care. Even though they are eligible for the benefits, the paperwork is so complex that they wind up paying for legal help to navigate it. In Florida, she says, that runs about $6,000.
What she has seen and experienced motivates her to call attention to the caregiving crunch. In April, Maher testified before Congress at a special Senate committee on aging. "Caregiving has also reshaped my professional life," she said on the Senate floor. "The flexibility of self-employment comes with real financial and professional tradeoffs." She was invited by Daughterhood, an organization that offers support and resources for caregivers.
Family caregivers can access some public money, depending on where they live. All states pay some types of family caregivers through Medicaid. In California, for instance, more than 800,000 caregivers earn between $16.90 and $25 an hour for in-home work. Funds for these programs are likely to dwindle due to President Trump's big budget bill that cut nearly $1 trillion out of Medicaid funding over the next decade.
If the person who needs care is eligible for Veterans Administration benefits, they may also be entitled to financial help to cover the cost of caregiving. Like Medicaid, the rules are complex, and many family caregivers hire advocates to advise on eligibility and the application procedure.
More support on the horizon?
The cost of care hasn't been as visible as the cost of gasoline, food and healthcare, says AARP executive vice president Nancy LeaMond. She believes that will change. "When you see the number of people paying this kind of money, I think that'll be an impetus for action in the legislative arena."
In the last few years, Congress has introduced various proposals that could put some money back into the pockets of caregivers, such as allowing caregivers to spend money from their tax-sheltered health savings accounts on their parents' medical expenses. In some states, new rules are already a reality.
Six states now offer tax credits to family caregivers for expenses like retrofitting a home with grab bars or railings, usually between $1,000 and $5,000 a year. Two other states have more limited programs. Last year, two U.S. Senators introduced a bipartisan bill that would establish a similar $5,000 tax credit nationwide.
In 14 states and the District of Columbia, most employers are required to offer paid family and medical leave. Those policies include time off for caregiving for a family member. Another bill introduced into Congress would convert that into a national policy that would require up to 12 weeks of partly paid leave for some workers.
A third proposed federal law would protect the Social Security benefits of caregivers. Under current rules, a person who stops working in order to care full-time for family sees their future Social Security check shrink, because they are no longer earning credits toward retirement. This bill would change the law to continue awarding points to full-time caregivers.
"We spend a lot of time talking to members of Congress, and you can't raise this issue in a meeting without being interrupted by someone telling their own story," says LeaMond. "In time, I believe that will coalesce to support family caregiving."
Kat McGowan is an independent journalist covering adult caregiving who reports the series "What It Takes" for NPR.
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