Aisha Adkins’ mother Rosetta was adamant that she wanted to age at home. So when Rosetta’s dementia started worsening at age 59, Aisha started looking around for options.
She quickly found that round-the-clock at-home care was extremely costly, and that her mother didn’t qualify for government assistance. Stuck in the middle, Aisha, who was 29 at the time, ended up quitting her job to take of her mother care of her herself.
At first, Rosetta just needed help preparing meals and reminders to take her medication. But as her care needs deepened, Aisha had to learn how to bathe and dress and feed her mother. She and her father hired a home health aide for a few hours a week when they could, but most of the care fell to the two of them until her mother finally qualified for Medicaid through a complicated process called spousal impoverishment protection, which allowed her father to keep some assets.
“We faced so many challenges; it was really a struggle,” says Adkins. She ended up caring for her mother for ten years on both a full-time and part-time basis, until her mother passed away in 2023.
Many middle-income seniors are unable to afford care
As the U.S. population ages, many families are facing the same challenges. Long-term care, which is assistance with the activities of daily living either in a person’s home or in a facility, is expensive. Most people pay for it either out of their savings, or by spending down those savings until they qualify for Medicaid, which covers long-term care for indigent seniors. (Medicare does not cover senior housing or long-term care.)
But there’s a large group of people who are stuck in-between: they are “too rich” to qualify for the Medicaid benefits that enable them to hire at-home help or put loved ones in a nursing home, but they do not have enough money to pay for the in-home, all-hours care their loved one needs. It then falls to family members to make up the difference. Around two-thirds of caregiving hours for older adults in the U.S. are provided by informal and unpaid caregivers.
On one end of the spectrum, there are many expensive communities for seniors with deep pockets who want to start out in apartments and continue on to assisted living or more extensive care. On the other end, there are nursing home spots available for people who qualify for Medicaid, the government payor of last resort, which is strictly for low-income seniors or people who have spent down their savings.
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But “there aren’t a lot of middle-income options on the market, so inevitably people rely on family care and out-of-pocket home care until they end up qualifying for Medicaid,” says David Grabowski, a health care policy professor at Harvard Medical School and one of the authors of a 2019 study about middle-income seniors. His research predicts that as the U.S. ages, many seniors will have insufficient resources for housing and health care needs.
People like Rosetta Adkins are often referred to as the “missing middle” or “forgotten middle”—the seniors who aren’t wealthy but who also aren’t poor. There just aren’t a lot of options for these seniors in the middle who need care. One 2021 study estimated that a nursing home in the U.S., on average, costs $100,740 per year for a semi-private room, and that home care for six hours a day, five days a week costs $42,120 a year. The costs have only gone up since then.
By 2033, researchers at the University of Chicago estimate, there will be 16 million middle-income seniors who can’t afford to pay for the health, personal care, and housing services they need. They will have to rely on family members—or on themselves—until they can qualify for Medicaid.
There may be even more people in this situation going forward, after the giant cuts to Medicaid in the Trump economic plan recently approved by Congress go into effect. Home and community-based care for low-income seniors is considered an optional program in Medicaid, so states can cut it when their budgets are thin. That may mean that in some states, it will take even longer for people like Rosetta Adkins to qualify for care through Medicaid, putting even more pressure on family members to help out.
“When a state’s Medicaid budget is constrained, which is absolutely going to happen because of this bill, there will be limits on some of these home-based services,” says Allison Orris, a senior fellow at the Center on Budget and Policy Priorities, a national research and policy institute.
A lack of options puts stress on family members
Family members already face intense pressure to provide care for their ailing loved one while still maintaining their careers and taking care of children. One recent report by researchers at Columbia University’s Mailman School of Public Health found that nearly half of U.S. states are on the brink of an unpaid family caregiving emergency.
That means that in many states, unpaid family caregivers are contributing hundreds of billions of dollars of unpaid labor. The report found that dementia care—like the kind sought by the Adkins family—is driving a lot of the labor.
“It is repeatedly the family caregiver who shoulders the immense pressures generated by health care shortages and rising dementia cases,” says John McHugh, lead researcher of the study and an adjunct assistant professor of health policy and management at Columbia University’s Mailman School of Public Health.
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Aisha Adkins, for instance, set aside her career so she could care for her mother. Her life choices for the next decade were determined by what her mother needed: picking a graduate school nearby and then finding a job that would allow her to work remotely. Aisha, who is only 40, is already worried about how she will pay for her own long-term care when she ages because she was out of the workforce so long caring for her mother.
This, too, is not uncommon.
“Many times, family members are reducing their own incomes because they’re taking time out of the workforce, or they’re working less,” says Amber Christ, managing director of health advocacy at Justice in Aging, a nonprofit that advocates on behalf of low-income seniors. “They’re risking their future retirement, which increases the likelihood they’ll age into poverty. So it’s really a multigenerational impact.”
There’s a reason there aren’t many options for middle-income seniors: companies can’t make money providing it. Over the past few decades, many expensive aging facilities have opened as investors put money into options for Baby Boomers who have extensive savings. But those places are out of reach for many seniors.
“The million-dollar model seems to work,” says Grabowski. “But middle-income models don’t seem to thrive.” Though there are options for nursing homes and facilities for seniors on Medicaid, they often provide a relatively low quality of care, with sparse staffing and dilapidated facilities.
Options for middle-income seniors are also limited because many people want to age at home, but at-home care is expensive and there are vast staff shortages, especially in rural areas. The industry is plagued by low compensation, unpredictable scheduling, and high turnover. Analysts predict this shortage will only worsen, with an estimated 4.6 million unfilled jobs by 2032.
Aisha Adkins says that even when her mother qualified for Medicaid, it was extremely difficult to get aides to consistently come to the house and provide care. Inexperienced caregivers didn’t know how to handle her mother’s dementia, so Aisha or her father still had to stay in the home even when a caregiver was around.
“It really fell to my father and myself to ensure that she was safe at all times, even sometimes when the caregiver was in the home,” she says.
Solutions for middle-income seniors are expensive
Adkins says she now advises friends to look into long-term care insurance or think more carefully about putting aside more money for when they age. But even long-term care insurance, which requires people to pay monthly premiums as they age so they can have care when they need it, has proven so inadequate that only about 4% of Americans 50 and older pay for a policy.
Though most people spend down their savings to qualify for Medicaid, elder law attorneys can sometimes help people protect their savings from long-term care costs. “It’s worth meeting with and listening to an elder law attorney to find out how to protect your resources,” says Eric Einhart, president of the National Academy of Elder Law Attorneys.
A few states have tried to help people pay for long-term care by establishing state programs. The WA Cares Fund, in Washington State, is a mandatory program that takes a small percentage of the paychecks of working Washingtonians and then allows them to access benefits of up to $36,500 to pay for long-term care services. But that amount of money won’t last them very long if they need more than a few months of care.
The lack of long-term care planning in the U.S. is a contrast to many other countries. The Netherlands, for instance, has long included long-term care in its universal health care system, and requires that taxpayers contribute a chunk of their income towards insurance premiums. In 2019, Singapore introduced a mandatory long-term care insurance program. Japan has had a mandatory long-term care insurance system since 2000; it requires people 40 and over to contribute.
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Most experts agree that the U.S. needs some sort of plan to help more seniors pay for long-term care, especially as Baby Boomers age. Otherwise, many people will spend down their savings until they qualify for Medicaid, which is going to get very expensive for the U.S. government.
“We’re going to be swamped by just the pure number of individuals in the system who need long-term care going forward,” says Grabowski. “We’re not at a place politically today to talk about this,” he says—because recently so much discussion has been focused on cutting services, rather than adding them—“but in the longer run, it’s a discussion we really need to have.”
It’s something Aisha Adkins knows at her core. Although her mother passed away in 2023, Adkins is gearing up for another struggle. Her father was recently diagnosed with a type of dementia, too. He spent almost all of his savings paying for Rosetta’s care. Now, Aisha is starting to look into options for him. She knows, from experience, that they will be limited.
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