Caregivers are in crisis. They told USA TODAY they want to see change.
In taking USA TODAY’s long-term care survey, readers told us their stories and what kind of solutions they’d like to see. But is that change possible?
AARP said in a March 12 report that the cost of providing home care and assisted living for seniors and people with disabilities has skyrocketed over the past five years, putting a strain on middle-class families struggling to pay their bills.
The AARP report found that costs for the most common types of long-term services (home care and assisted living services) jumped nearly 50% from 2019 to 2024, far outpacing the median income growth rate of 22% for older households.
The cost of other long-term services has also increased faster than the income of households that have to pay for this care without public assistance. According to AARP, the cost of adult day services jumped 33% and nursing home care costs increased by up to 25%.
The report details the rising costs of “long-term services and support.” This is a broad category that describes supportive care, such as feeding, bathing, and dressing, that people may need due to aging, illness, or disability. The authors said the report highlights that millions of families face an affordability crisis as the cost of services for older adults and people with disabilities exceeds what families can afford.
“When this happens, families are hit harder and pay a higher price than expected,” said Alan Weil, director of the AARP Public Policy Institute.
Families are not prepared to pay for long-term care
According to the U.S. Department of Health and Human Services, more than half of adults who will turn 65 from 2021 to 2025 will require long-term care services during their lifetime.
But families are often unprepared to deal with the cost of caring for an older adult, Weil said.
A 2022 AARP survey found that nearly half of adults 50 and older incorrectly believed that Medicare, the federal health insurance program for adults 65 and older, covered nursing home care or in-home care with a home health aide.
Medicare does not cover such costs, but Medicaid, the federal-state health care program for low-income families, pays for nursing home care for millions of low-income adults.
But for middle-income families who don’t qualify for Medicaid, costs can rise quickly. According to AARP, in 2020, about 1 in 7 seniors had out-of-pocket costs of more than $100,000.
For families who cannot afford a home health assistant, the burden of providing care often falls on unpaid caregivers. These caregivers, many of them family members, contributed approximately $600 billion to caregiving in 2021, according to AARP.
Why have nursing care costs soared in the last 10 years?
The five-year spike in costs studied by AARP followed a decade of more modest increases in long-term care costs.
State and federal governments have significantly expanded Medicaid support for long-term care services during the coronavirus pandemic, according to long-term care experts not affiliated with AARP.
The public support was aimed at addressing a shortage of workers in nursing homes and home care settings during the worst of the coronavirus pandemic. Another factor is that higher minimum wages have increased spending for low-wage workers such as nursing home employees and home health aides.
Mark Cohen, a professor of gerontology at the University of Massachusetts Boston and co-director of the LeadingAge LTSS Center, said more generous Medicaid payments will decline as the pandemic ends, while the Trump administration’s immigration crackdown is straining nursing homes and home health agencies that rely on immigrant labor.
“The people who care for our most vulnerable citizens are being shut out of the system,” Cohen said.
Cohen said rising costs for nursing homes and home health aides often fall disproportionately on people who pay for their own care. That’s because Medicaid often reimburses health care costs at lower rates, and providers seek to offset lower public payments by passing costs on to consumers who pay out-of-pocket.
Mr Cohen said it would put economic strain on middle-class families. Some states, such as California, are considering how to help families who earn too much to qualify for Medicaid but not enough to cover the rising cost of living and long-term care.
“If they ever need long-term care, they’ll be going up the creek without a paddle,” Cohen said. “Pressures on family support systems are increasing.”
Family reaches ‘breaking point’
According to AARP, the average annual cost of long-term care ranges from $26,000 for adult day services to more than $127,000 for private nursing homes.
For seniors living with an average annual Social Security benefit of $23,700 and an average annual household income of nearly $60,000, these costs can be difficult to manage.
The report also shows that the cost of services varies widely by state. Home Health Assistance Services range from $34,320 in Louisiana to $68,640 in South Dakota.
Affordability is also assessed in this report, taking into account the cost of services and average household income. By this measure, home health aids are the most affordable in Maryland and the most affordable in Maine.
Weil said the report aims to detail how home-based long-term care services are becoming less affordable as costs rise.
He called this a “breaking point” for families and caregivers.
“It is precisely this crisis that this report shines a light on,” Weil said. “And I think we have to be honest that part of the breaking point is that people are going to live without services.”
