Americans face financial ruin as elder care costs soar
"People are exposed to the possibility of depleting almost all their wealth."
Director of the retirement policy program at the
Feylyn Lewis, 35, sacrificed a promising career as a research director in
"That was terrible," she said. "I had to do it."
Millions of families are facing such daunting life choices – and potential financial ruin – as the escalating costs of in-home care, assisted living facilities and nursing homes devour the savings and incomes of older Americans and their relatives.
"People are exposed to the possibility of depleting almost all their wealth," said
The prospect of dying broke looms as an imminent threat for the boomer generation, which looked hopefully toward a comfortable retirement on 401(k)s and pensions. Roughly 10,000 of them will turn 65 every day until 2030, expecting to live into their 80s and 90s as the cost of long-term care explodes, outpacing inflation and reaching a half-trillion dollars a year, according to federal researchers.
The challenges will only grow. By 2050, the population of Americans 65 and older is projected to increase by more than 50%, to 86 million, according to census estimates. The number of people 85 or older will nearly triple to 19million.
To examine the crisis in long-term care,
About 8million people 65 and older reported that they had dementia or difficulty with basic daily tasks.
Most relied on spouses, children, grandchildren or friends.
Nearly 3million had no assistance at all, according to an analysis of the survey data.
Government policy decisions
"We just don't value elders the way that other countries and other cultures do," said
Despite medical advances that have added years to the average life span and allowed people to survive decades more after cancer, heart disease or strokes, federal long-term elder care has not fundamentally changed in the decades since President
Medicare, the federal health insurance program for Americans ages 65 and older, covers the costs of medical care, but generally pays for a home aide or nursing home stay only for a limited time during recovery from surgery or a fall, or for short-term rehabilitation.
Medicaid, the federal-state program, covers long-term care, usually in a nursing home, but only for the poor. Middle-class people must exhaust their assets to qualify, selling much of their property and emptying their bank accounts. If they go into a nursing home, they are permitted to keep only a pittance of their retirement income:
At a skilled nursing home, a long-term resident's care can easily cost more than
"You basically want people to destitute themselves and then you take everything else that they have," said
Her mother,
Under the state Medicaid program's byzantine rules, she had to pay rent to her mother, and that income went toward her mother's care. Glenn sold the family's house just before her mother's death in October. Her lawyer told her the estate had to pay Medicaid back about
A play she wrote about her relationship with her mother, titled "If You See Panic in My Eyes," was read this year at a theater festival.
Private companies' prices
have skyrocketed
The boomer generation is jogging and cycling into retirement, equipped with hip and knee replacements that have slowed their aging. And they are loath to enter the institutional setting of a nursing home.
But they face major expenses for the in-between years, between good health and around-the-clock care.
That has led them to assisted living centers run by for-profit companies and private equity funds that enjoy robust profits in a growing market. Some 850,000 people age 65 or older now live in these facilities that are largely ineligible for federal funds. Some provide only basics like help getting dressed and taking medication; others offer luxury amenities like gourmet meals and spas.
The bills can be staggering. Half the nation's assisted living facilities cost at least
Home care is costly, too. Agencies charge about
The slow, expensive decline
of someone with dementia
As Americans live longer, the number who develop dementia has soared to between 5million and 7million Americans, with their ranks projected to grow to nearly 12million by 2040.
In
His anger has diminished, but early on, she resorted to calling the police when he acted erratically.
"He was hating me and angry, and I didn't feel safe," she said.
She considered memory care units, but the least expensive option cost around
"I'll let go of everything if I have to, but it's a very unfair system," she said. "If you didn't see ahead or didn't have the right type of job that provides for you, it's tough luck."
Margaret said she's reconciled to caring for him as long as she can.
"When I see him sitting out on the porch and appreciating the sun coming on his face, it's really sweet," she said.
The financial threat posed by dementia also weighs heavily on adult children.
Morrell paid legal fees required as her mother's guardian, as well as
"I will never have those kinds of resources," said Morrell, an education consultant. "My children will never have those kinds of resources. We didn't inherit enough or aren't going to earn enough to have the quality of care she got."
Women bear the burden of care
For seven years,
After Sampogna died in
"It's amazing how much time went by," she said. "I'm so grateful to be back in my life again."
Studies are calculating the toll of caregiving on children, especially women. The median lost wages for women providing intensive care for their mothers is
Lewis, the research director, is also tending to her 87-year-old grandfather, ill with prostate cancer and kidney disease.
Making up for lost income seems daunting. But Lewis is regaining hope: She was promoted to assistant dean for student affairs at
Government solutions are elusive
Efforts by lawmakers in
The CLASS Act, part of the Affordable Care Act of 2010, was supposed to give people the option of paying into a long-term insurance program. It was repealed two years later amid compelling evidence that it would never be economically viable.
Two years ago, a proposal called the WISH Act outlined a long-term care trust fund, but it never gained traction.
On the home care front, workers are scarce. The labor shortages are largely attributed to low wages for difficult work. In the Medicaid program, demand has clearly outstripped supply, according to a recent analysis. While the number of home aides in the Medicaid program has increased to 1.4million in 2019 from 840,000 in 2008, the number of aides per 100 people who qualify for home or community care has declined nearly 12%.
This has led to a flurry of attempts to improve wages and working conditions for home health aides. But a
But leading
"So often people just think it's just going to work out," he said. "Too many people get to the point where they're 65 and then say, 'I don't have that much there.'"
In April, President
Turning to Medicaid,
a shredded safety net
The only true safety net for many Americans is Medicaid, which represents, by far, the largest single source of funding for long-term care. More than 4 in 5 middle-class people 65 or older who need long-term care for five years or more will eventually enroll, according to an analysis by the
But gaps in Medicaid coverage leave many people without care. Under federal law, the program is obliged to offer nursing home care in every state. In-home care, which is not guaranteed, is provided under state waivers, and the number of participants is limited. Many states have long waiting lists, and it can be extremely difficult to find aides willing to work at the low Medicaid rate.
Qualifying for a slot in a nursing home paid by Medicaid can also be formidable, with many families spending thousands of dollars on lawyers and consultants to navigate state rules. Homes may be sold or couples may contemplate divorce to become eligible.
And recipients and their spouses may still have to contribute significant sums. After
He was required to contribute
Markowitz died in September at age 86, easing the financial pressure. "I won't be having to pay the nursing home," she said.
Even finding a place willing to take someone can be a struggle.
"I had to refuse to take him back home," she said. "They had no choice but to place him."
He was finally approved for coverage in early 2022, at age 83.
A few months later, he died.
Contributing:
"People are exposed to the possibility of depleting almost all their wealth."
Director of the retirement policy program at the
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