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New AARP Report Finds Family Caregivers Provide $600 Billion in Unpaid Care Across the U.S.

‘Valuing the Invaluable’ documents the increasing economic, physical and emotional costs of caregiving

Just two hours per week is all the time that family caregiver Ayda Beltré devotes to herself.

That’s on Sundays when she goes to church and must leave her 86-year-old dad, Eugenio, alone. Eugenio is bedridden with a few ailments and has been on oxygen since COVID-19 hit the family in February. Beltré can’t afford the high costs of weekend caregiving help. So, when she leaves the house to go to church to pray for her father’s recovery, it’s a roll of the dice that breaks her heart every time.

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“I give him a big breakfast before I go,” says the 61-year-old resident of Fort Myers, Florida, who is currently unemployed. “While I’m gone, I’m worrying about him.”

High cost of ‘free’ care

For the past six years — seven days a week — Ayda has been a devoted family caregiver for her father because she can’t afford to pay for outside help. During the week, her dad gets 17 hours of caregiving assistance through Medicaid but even then, Beltré says, she rarely leaves the house because she doesn’t feel fully confident in the assistance that the caregivers offer. 

spinner image Ayda Beltre and her father, to whom she is the primary caregiver
Ayda Beltré and her dad Eugenio.
Courtesy Ayda Beltre

Money can’t buy the kind of care that family caregivers devote to their loved ones, from driving to appointments to managing medical claims to providing hands-on assistance. But if it could, the amount is staggering, according to the latest report in AARP’s “Valuing the Invaluable” series.

Care provided by millions of unpaid family caregivers across the U.S. was valued at $600 billion in 2021, the new report estimates, a $130 billion increase in unpaid contributions from the 2019 report. The staggering figure is based on about 38 million caregivers providing an average of 18 hours of care per week for a total of 36 billion hours of care, at an average value of $16.59 per hour.

For perspective, that amount is considerably more than the $433 billion spent by families nationwide in 2021 for all out-of-pocket U.S. health care costs. Put another way, the sheer act of trying to save $600 billion by setting aside $100,000 per year would take a total of 6 million years. 

Time is money. No one knows this better than the nation’s 38 million family caregivers who devote 36 billion hours of free care to older parents, spouses, partners and friends with chronic, disabling and serious health conditions. Family caregivers are the backbone of the long-term care system in the U.S. But with over 60 percent of family caregivers working either full-time or part-time — and 30 percent living with a child or grandchild — they need and deserve more assistance from city, state and federal governments, says the report. For instance, states can expand caregiving tax credits and workplaces can adapt more family-friendly policies such as paid family leave.

AARP is advocating to turn the National Strategy to Support Family Caregivers, which was delivered to Congress last year, into action that provides tangible help for family caregivers.

“Family caregivers are a scarce resource and should be protected and supported,” says Susan Reinhard, the AARP senior vice president who directs its Public Policy Institute. “If they walked off the job, we’d be $600 billion short.”

The pandemic has impacted family caregivers like nothing else and brought to light the tension that many sandwiched caregivers experience while trying to tend to the needs of their own children even as the needs of their aging parents have increased.

At the same time, the very face of the family caregiver continues to evolve. Family caregivers are racially and ethnically diverse, making up almost 40 percent of caregivers in the U.S., according to the report.

Today’s family caregivers are diverse.

spinner image pie chart showing racial diversity of surveyed caregivers. 58% are white, 17% Hispanic, 14% African American, 5% Asian American, and 3% Other. 9% identify as LGBTQ+
AARP Public Policy Institute

So, what we have is a nation of racially diverse family caregivers who are increasingly taking care of their children and their parents — even as they are working. “They don’t think of themselves as caregivers,” says Reinhard. But with the nation’s declining birthrate and aging populations, she says, “we are going to have fewer and fewer [family] caregivers for more and more people.”

One such family caregiver is Roger Desrosiers.

The 74-year-old resident of Concord, New Hampshire, spent nearly 17 years giving evening and weekend caregiving help to his father, Albert, who ultimately died from dementia in 2019 at age 97.

Desrosiers and his wife both worked full-time while also acting as caregivers.

“We melded Dad into our daily lives,” he says.

That meant regularly missing work to drive Albert to doctor’s appointments, many of which were out-of-town. It meant trips back and forth to the pharmacy and managing, at one point, the 14 different medications that Albert was taking.

spinner image Albert and Roger Desrosiers
Roger Desrosiers and his father Albert
Courtesy Roger Desrosiers

That’s why working family caregivers need more flexibility, says AARP’s Reinhard. “They need things like paid sick leave to take family members to the doctor’s office.”

Lack of flexibility, downtime

Family caregivers are too often handing complex medical tasks in the home — often with little to no instruction, according to the report. Many of these are tasks that historically have been performed by trained health care professionals.

The single toughest thing about caregiving, Desrosiers says, was the inability for him and his wife to take time off for themselves. During that 17-year period, he says, they only squeezed in one short vacation. Even that required an enormous amount of planning.

Yet he wouldn’t trade the experience of being a family caregiver for anything.

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“People only look at the downside and not the benefit of having the experience,” he says. “Dad was independent for many years and shared with us all kinds of insights from his life and work and military experience.”  

‘That’s what keeps me going’

Back in Fort Myers, Beltré says she is up to the task of caring for her father — but it keeps getting tougher.

She is just 5 feet tall, but her father is a big man. She sometimes has to ask neighbors to help her to give him a bath, or even just to help get him out of bed.

And she says it seems like she always has to fight the bureaucracies for everything from a few hours of paid day care for her dad to getting him the air mattress that he desperately needed.

Sometimes, she admits, it can feel overwhelming. “I become like a little child, and I wonder: Why can’t I do it?”

Then she gets that nightly reminder of just why she must keep moving forward.

When she walks into her father’s bedroom to say good night, he always looks at her lovingly and whispers back, “Thank you for all you do … God bless you.”

Beltré says that those few words of love and appreciation are all she needs to hear.

“That’s what keeps me going.”

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