Long-term care options are too expensive for middle-income Americans, narrowing options for millions of seniors
“It’s devastating,” she said. “You can’t wrap your head around it.”
A wave of Americans has been reaching retirement age largely unprepared for the extraordinary costs of specialized care. These aging baby boomers — 73 million strong, the oldest of whom turn 77 this year — pose an unprecedented challenge to the U.S. economy, as individual families shoulder an increasingly ruinous financial burden with little help from stalemated policymakers in Washington.
The dilemma is particularly vexing for those in the economic middle. They can’t afford the high costs of care on their own, yet their resources are too high for them to qualify for federal safety-net insurance. An estimated 18 million middle-income boomers will require care for moderate to severe needs but be unable to pay for it, according to an analysis of the gap by the Center for Retirement Research at Boston College.
“It’s this really enormous financial bomb sitting out there that most people are just hoping won’t hit them,” said Marc A. Cohen, co-director of the LeadingAge LTSS Center at the University of Massachusetts at Boston. “There’s an incredible amount of confusion and denial.”
It’s no surprise that people put off decisions about how to get by during the final years and decades of life; it’s unpleasant to consider, and in the United States, there are few good options. Home care aides are in short supply. Nursing homes are seen as overly institutional and cater to the most disabled.
Assisted-living facilities, the fastest-growing category of elderly care, provide an independent, homelike environment for seniors who need some help with day-to-day functions. Chandeliers, comfy sofas, wood paneling and plush carpets are standard in common areas. You can get your own apartment with your own bathroom. But it starts at $60,000 a year on average, according to the National Investment Center for Seniors Housing & Care (NIC) — and costs go up as residents age and need more care. Locked units for dementia patients, which increasingly are being established within assisted-living facilities or as stand-alone facilities, run more than $80,000 a year on average.
Long-term care costs represent “the single largest financial risk” facing seniors and their families, the National Council on Aging and UMass Boston researchers said in a 2020 report.
“It has to be addressed because ultimately it will be a societal crisis. These are the schoolteachers and the firefighters, the working people who take care of all of us, who cannot afford the [senior housing] that is being built out there right now,” said Beth Mace, chief economist for NIC, a leading data and analytics firm that participated in the study.
Polls show the vast majority of people would prefer aging in place, in their own home. But median costs for 40 hours a week of assistance from a care aide in the home, for things like bathing, dressing, eating and toileting, run over $56,000 a year. A shortage of home care aides, moreover, was exacerbated by the pandemic.
Nursing homes provide the most intensive care for the most dependent seniors and function like medical facilities, averaging $120,000 a year unless you qualify for Medicaid, the federal insurance program for the poor and elderly. Medicaid will kick in only once an elderly person’s resources are drained away.
Nursing homes are viewed as a destination of last resort. More than 70 percent of older Americans say they are unwilling to live in one, according to a 2021 poll by the John A. Hartford Foundation, which advocates and funds research about age-related issues.
Families often rush to shop among these care options when a health or safety crisis strikes. They take out loans, liquidate real estate and ask family members to chip in for costs. They turn to public internet fundraising sites like GoFundMe for help.
But because of the daunting expenses, many simply allow elderly people with dementia and other infirmities to remain in precarious conditions at home, possibly alone or cared for by an aging spouse, extended family, and neighbors or volunteers. Adult children sometimes upend their own lives to care for an aging relative.
“There are people who are in cruise ships and yachts, and there are people who can barely afford to have a life preserver,” said Lin Chojnicki, who toured several assisted-living facilities for her mother near their homes in Enfield, Conn.
The buildings she saw were inviting and seemed safe, she said, but they were unaffordable at over $4,000 a week for base rent and much more for people with dementia. So her mother continues to live alone in her own home, getting by with daily drop-in visits from family.
Advocates are calling on assisted-living developers to build more-affordable options.
“It seems like a failure of industry because you’ve got money on the table and you have people who could afford monthly rents and the industry is not meeting that need,” said Caroline Pearson, the lead author of a landmark 2019 demographic study called “The Forgotten Middle,” warning that millions won’t be able to afford long-term care in old age.
“It is disturbing that the only option is to completely spend down and impoverish yourself,” said Pearson, who is now executive director of the Peterson Center on Healthcare.
Growth in assisted-living facilities has been fueled by real estate investment trusts, which are focused on generating stable, recession-resistant returns from their properties, say experts. That means attracting wealthy clients with greater luxury and amenities.
In 2020, according to federal estimates, there were 818,000 people living in assisted-living and residential units for dementia patients, compared to around 1.2 million in nursing homes. The number of assisted-living facilities grew 24 percent from 2015 through 2022 in 99 U.S. metro areas analyzed by NIC, while the number of nursing homes declined 2.8 percent.
The assisted-living industry’s major Washington trade group, the National Center for Assisted Living, said in an emailed statement that it recognizes affordability is a problem. It said government must have a role in creating better options.
About 17 percent of people living in assisted-living facilities in 2020 were supported by Medicaid insurance, compared with around 75 percent in nursing homes, according to federal data. A persistent concern of the industry is that Medicaid reimbursement does not fully cover the costs of care.
“Even before the pandemic, the long-term care system in this country was broken. It’s too expensive for most people, yet it needs further investment to ensure front-line caregivers receive a competitive wage and facilities continue to modernize,” said LaShuan Bethea, NCAL’s executive director.
“You’re combining housing and health care, and most Americans haven’t thought about or can’t afford to plan for this expense,” she said.
Advocates for the elderly say a solution would be to build insurance programs that will pay for all long-term care and spread the financial burdens over everyone. Germany, Japan and South Korea have government-sponsored long-term care insurance. Congress authorized a long-term care insurance program as part of the Affordable Care Act in 2010, but after 19 months of study, the Obama administration dropped it, calling it unworkable.
Washington state this year is launching a long-term care insurance program, financed by a mandatory employee payroll tax of 0.58 percent, that will provide families $100 a day toward long-term care with a lifetime cap of $36,500. Proponents are working on building support for similar programs in California and Michigan.
Absent any comprehensive insurance, interviews show, family members are left with the burdens of high costs.
One danger is the escalating care fees — as medical need grows — that create a trap for people who think they can afford assisted living over the long haul, said Sherri Lewis, an HIV activist and former pop singer in Los Angeles who placed her mother in a high-end assisted-living facility in Beverly Hills. Lewis’s mother, 93, had a long-term care insurance policy that paid $4,000 a month for life, plus another $3,000 a month in Social Security and other spousal benefits. That covered her mother’s care until her needs grew and the monthly bill rose to $10,000. The facility asked her mother to leave last year and she’s now in a nursing home, Lewis said.
Lewis turned to internet fundraising in a bid for financial help from her network of friends. She said she was considering giving up her mother’s long-term care insurance policy in a desperate bid to qualify for Medicaid.
“Now we’re really in this horrible money pit,” she said. “I’m burned out. I’m at the end of my rope.”
Another Los Angeles resident, Marsha Stevenson, a graphic designer who works from home, lives with and cares for her mother in an apartment. Stevenson got married in June 2020 and still has been unable to move in with her husband. She has taken a pass on career promotions because of the demands of caregiving.
“In the time I’ve been more consistently caregiving in the last 3 years, I’ve gained 20 pounds and have more cardiovascular issues,” said Stevenson, 53, in an email. “Even aside from the pandemic, I no longer can easily get out to see friends or attend events and am often too tired even if I could.”
In Topeka, Kan., Hugh Fitzpatrick, a 70-year-old retired musician with Alzheimer’s, spent the last two years living in his son Bryan Fitzpatrick’s basement, burning through the remnants of $88,000 he received in proceeds from the sale of his house in Houston. Much of the money was spent on a $175-a-day adult day care program. Once the house money was gone, that enabled Fitzpatrick to qualify for Kansas Medicaid, said his brother, Chuck Fitzpatrick.
He moved into a “memory care” unit, as the dementia-care facilities are called, that costs $5,440 a month, Chuck Fitzpatrick said. Medicaid will contribute $4,415 monthly toward the cost and Hugh’s Social Security payment of $1,025 will be applied.
How much Beth Roper’s financial woes will grow depends on unknowns, including how long her husband, Doug, survives and what happens to her own health over the next two decades. In addition to postponing retirement, she abandoned plans to pay for her daughter Kathryn’s wedding.
Doug Roper, who was a history teacher and wrestling coach at Tabb High School in York County, Va., began showing signs of forgetfulness that seemed to accelerate in 2018, the same year he retired, Beth Roper said. By 2022, he could no longer drive and it became clear he needed professional help.
“He got to the point where he was confusing the key fob with the garage door opener trying to unlock the car with the garage door opener,” Beth said. He began ripping up his own clothes. She realized she could no longer trust him on his daily walks, after he started trying to open the doors of random cars around the neighborhood.
Beth scrambled over the summer to find ways to care for Doug. She started to apply for adult day care openings, but the application process was taking too long. Home-care agencies seemed too costly and would still leave her with the heavy burden of caring for Doug overnight. She never seriously considered nursing homes, she said, because Doug was fairly healthy except for his cognitive decline.
She found a suitable room in assisted living for $3,500 a month, but after just four days there the facility management told her he was a wandering risk and needed to be placed in a costlier, locked memory care unit, Beth said. Even there, he recently fell and suffered cuts and bruises on his head and face. Now Beth worries about when she can retire and what, if anything, will be left for her own long-term care.
“You can’t plan for the future. Not to be morbid, but we don’t know how long Doug will live,” she said.
She’s baffled there is no safety net for families in her situation. The Ropers saved for college, they paid off their house, they tithed at church, and they paid thousands of dollars in taxes for more than 70 years of combined work.
“We did everything our country asked us to do,” she said.
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