Jordan Rau, KFF Health News senior correspondent, moderated a Zoom event Dec. 5 about “Dying Broke,” an investigative project undertaken with The New York Times and Times reporter Reed Abelson about America’s long-term care crisis. Panelists shared their lived experiences of caregiving.

The event was hosted by KFF Health News and the John A. Hartford Foundation.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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What’s the difference between long-term care insurance and medical insurance?

Long-term care insurance is for people who may develop permanent cognitive problems like Alzheimer’s disease or who will need help with basic daily tasks like bathing or dressing. It can help pay for personal aides, adult day care, or institutional housing in an assisted living facility or a nursing home. Medicare does not cover such costs for the chronically ill.

How does it work?

Policies generally pay a set rate per day, week, or month — say, up to $1,400 a week for home care aides. Before buying a policy, ask which services it covers and how much it pays out for each kind of care, such as a nursing home, an assisted living facility, a home personal care service, or adult day care. Some policies will pay family members who are providing the care; ask who qualifies as a family member and whether the policy pays for their training.

You should check to see if benefits are increased to take inflation into account, and by how much. Ask about the maximum amount the policy will pay out and if the benefits can be shared by a domestic partner or spouse.

How much does it cost?

In 2023, a 60-year-old man buying a $165,000 policy would typically pay about $2,585 annually for a policy that grew at 3% a year to take inflation into account, according to a survey by the American Association for Long-Term Care Insurance, a nonprofit that tracks insurance rates. A woman of the same age would pay $4,450 for the same policy because women tend to live longer and are more likely to use it. The higher the inflation adjustment, the more the policy will cost.

If a company has been paying out more than it anticipated, it’s more likely to raise rates. Companies need the approval of your state’s regulators, so you should find out if the insurer is asking the state insurance department to increase rates for the next few years — and, if so, by how much — since companies can’t raise premiums without permission. You can find contacts for your state’s insurance department through the National Association of Insurance Commissioners’ directory.

Should I buy it?

It’s probably not worth the cost if you don’t own your home or have a significant amount of money saved and won’t have a sizable pension beyond Social Security. If that describes you, you’ll probably qualify for Medicaid once you spend what you have. But insurance may be worth it if the value of all your savings and possessions, excluding your primary home, is at least $75,000, according to a consumer guide from the insurance commissioners’ association.

Even if you have savings and valuable things that you can sell, you should think about whether you can afford the premiums. While insurers can’t cancel a policy once they’ve sold it to you, they can — and often do — raise the premium rate each year. The insurance commissioners’ group says you probably should consider coverage only if it’s less than 7% of your current income and if you can still pay it without pain if the premium were raised by 25%.

Many insurers are selling hybrid policies that combine life insurance and long-term care insurance. Those are popular because if you don’t use the long-term care benefit, the policy pays out to a beneficiary after you die. But compared with long-term care policies, hybrid policies “are even more expensive, and the coverage is not great,” said Howard Bedlin, government relations and advocacy principal at the National Council on Aging.

When should I buy a policy?

Wait too long and you may have developed medical conditions that make you too risky for any insurer. Buy too early and you may be diverting money that would be better invested in your retirement account, your children’s tuition, or other financial priorities. Jesse Slome, executive director of the American Association for Long-Term Care Insurance, says the “sweet spot” is when you’re between ages 55 and 65. People younger than that often have other financial priorities, he said, that make the premiums more painful.

When can I tap the benefits?

Make sure you know which circumstances allow you to draw benefits. That’s known as the “trigger.” Policies often require proof that you need help with at least two of the six “activities of daily living,” which are: bathing, dressing, eating, being able to get out of bed and move, continence, and being able to get to and use the toilet. You can also tap your policy if you have a diagnosis of dementia or some other kind of cognitive impairment. Insurance companies will generally send a representative to do an evaluation, or require a doctor’s assessment.

Many policies won’t start paying until after you’ve paid out of your own pocket for a set period, such as 20 days or 100 days. This is known as the “elimination period.”

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“We want her to stay in her house,” Jemmott said. “That’s what’s probably keeping her alive, because she’s in her element, not in a strange place.” 

The private insurance market has proved wildly inadequate in providing financial security for most of the millions of older Americans who might need home health aides, assisted living, or other types of assistance with daily living. 

For decades, the industry severely underestimated how many policyholders would use their coverage, how long they would live, and how much their care would cost. 

And as Jemmott belatedly discovered, the older generation of plans — those from the 1980s — often covered only nursing homes. 

Only 3% to 4% of Americans 50 and older pay for a long-term care policy, according to LIMRA, an insurance marketing and research association. That stands in stark contrast to federal estimates that 70% of people 65 and older will need critical services before they die. 

Repeated government efforts to create a functioning market for long-term care insurance — or to provide public alternatives — have never taken hold. Today, most insurers have stopped selling stand-alone long-term care policies: The ones that still exist are too expensive for most people. And they have become less affordable each year, with insurers raising premiums higher and higher. Many policyholders face painful choices to pay more, pare benefits, or drop coverage altogether. 

“It’s a giant bait-and-switch,” said Laura Lunceford, 69, of Sandy, Utah, whose annual premium with her husband leaped to more than $5,700 in 2019 from less than $3,800. Her stomach knots up a couple of months before the next premium is due, as she fears another spike. “They had a business model that just wasn’t sustainable from the get-go,” she said. “Why they didn’t know that is beyond me, but now we’re getting punished for their lack of foresight.”

The glaring gaps in access to coverage persist despite steady increases in overall payouts. Last year, insurers paid more than $13 billion to cover 345,000 long-term care claims, according to industry figures. Many policyholders and their relatives reported that their plans helped them avert financial catastrophes when they faced long-term care costs that would have otherwise eviscerated their savings. 

But others have been startled to learn that policies they paid into over decades will not fully cover the escalating present-day costs of home health aides, assisted living facilities, or nursing homes. And in other cases, people entitled to benefits confront lengthy response times to coverage requests or outright denials, according to records kept by the National Association of Insurance Commissioners, the organization of state regulators. 

Jesse Slome, executive director of the American Association for Long-Term Care Insurance, an industry trade group, said long-term care was the most challenging type of insurance to manage. “You need multiple crystal balls,” Slome said. “And you have to look 20 years into the future and be right.”

The Pandemic Paused a Long-Term Decline 

The industry’s wobbly finances haven’t steadied despite a brief profitable surge during the coronavirus pandemic. Earnings rose because thousands of people who were drawing benefits, many in nursing homes or assisted living facilities, died from covid-19, and other policyholders died before using their insurance. Others stopped tapping their benefits because they fled facilities and went to live with their families, who provided unpaid care. 

Overall, earnings went from $2.3 billion in losses in 2019 to two years of profits totaling $1.1 billion, before receding into the red in 2022 by losing $304 million, according to Fitch Ratings. 

Still, none of that was enough to reverse the industry’s long-term decline. Doug Baker, a director in Fitch’s U.S. life insurance group, said long-term care insurance “is one of the riskiest in our universe” because of the lingering financial burden from underestimating the number of people who would tap their policies. 

More insurers now offer hybrid plans that combine life insurance with long-term care. Those policies are less generous than the ones offered a decade ago — and using the long-term care benefit drains some or all of the money policyholders hoped to leave to their heirs. 

“I don’t think people will offer unlimited again,” said Tom McInerney, the chief executive of Genworth Financial, which suspended selling plans through brokers in 2019. “One way or another, taxpayers are going to have to pay more for long-term care needs of the baby boomers.” 

Many experts believe it’s untenable to expect that a private insurance market can protect most people from the growing burden of long-term care costs. 

“The whole situation is poorly suited to that kind of insurance offering,” said Robert Saldin, a political science professor at the University of Montana who studies the industry. 

Falling Profits and Skyrocketing Premiums

Starting in the 1970s, long-term care insurance was touted as a way to keep older people from eroding their retirement savings or resorting to Medicaid, the state-federal program for the poor and disabled. Early plans were limited to nursing home care but later expanded to cover in-home care and assisted living centers. Sales of the policies doubled from 1990 to 2002.

As demand grew, however, there were signs the industry had vastly miscalculated the cost of its products. Insurers set early policy prices competitively low, based on actuarial models that turned out to be markedly inaccurate. Forecasters’ estimates of policyholders’ longevity were wrong. U.S. life expectancy increased to nearly 77 years in 2000 from about 68 years in 1950, federal records show. And as people lived longer, their need for care increased. 

Industry officials also failed to account for the behavior of savvy consumers determined to keep their long-term care coverage. Insurers counted on policy lapse rates — people giving up their policies or defaulting on payments — of about 4% annually. The actual lapse rate was closer to 1%. 

As the miscalculations sent profits plummeting, insurers raised premiums or exited the market. By 2020, sales of traditional policies had dropped to 49,000 and the number of carriers offering plans had fallen to fewer than a dozen from more than 100. 

Premiums for some consumers doubled in just a year or two. Three class-action lawsuits accused Genworth of failing to disclose to policyholders that it had planned multiyear rate increases, leaving them without information they needed to decide whether to keep their policies. Genworth settled the lawsuits with offers to allow customers to adjust their policies, and in some cases it paid cash damage to those who accepted reduced benefits. The company did not admit wrongdoing.

The increases continue. AM Best, a rating agency, said in a report last November that Genworth “will continue to need annual rate increases for at least several more years to reach economic break-even.” 

Prices for new policies have jumped, too. A decade ago, a couple aged 55 could expect to pay about $3,725 a year for a policy that included $162,000 in total benefits and 3% annual inflation protection, according to the American Association for Long-Term Care Insurance. Today, a policy that is virtually the same would cost $5,025, 35% more, even as rising health costs and inflation have eroded the value of the benefits. 

And that’s only for the people who can qualify. To limit their losses, insurers have narrowed the eligible pool of clients. In 2021, about 30% of applicants ages 60 to 64 were denied long-term care insurance. For applicants 70 to 74, the rejection rate was 47%. Even among people in their 50s, more than 1 in 5 were turned down. Chronic health conditions, a history of stroke or diabetes, or psychiatric illness may all be grounds for disqualification. 

At the same time, insurers began scrutinizing claims more closely. “They tightened their belts,” said Alan Kassan, a senior partner with the California law firm Kantor & Kantor, which represents clients challenging denials. “Then they tightened their claim administration and started denying claims more and more.” 

In 2022, the proportion of traditional long-term care claim denials varied, from 4.5% in Rhode Island to 9.6% in Alaska, according to the National Association of Insurance Commissioners. 

Despite efforts to limit liability, financial problems forced several high-profile insurance providers to drastically revise policy terms and premiums or go into insolvency, affecting the investments of thousands of clients. 

They included Alice Kempski, a retired nurse who, after her husband died, bought a policy from the insurance company Penn Treaty and American Network in 2004 on the advice of a financial adviser, paying premiums of $180 a month for 16 years. By 2017, she was hobbled by osteoporosis and was struggling to manage her multiple medications, according to her daughter, Ann Kempski. She sold the family home in Wilmington, Delaware, in 2017 and, now needing help bathing, moved to an assisted living center there. But when the family tried to file a claim, they discovered that Penn Treaty was insolvent and the policy had been taken over by the Pennsylvania state insurance guaranty fund. 

The fund had frozen Kempski’s benefits and increased her premiums to about $280 a month, her daughter said. Her doctor told Penn that she had “mild dementia” and osteoporosis and should be in an assisted living facility. But the insurer said that there was not enough evidence that she needed help with two daily living activities or had severe cognitive impairment, conditions that would trigger coverage, according to correspondence between Kempski and the company. 

Kempski was paying roughly $5,400 a month out-of-pocket to the assisted living center. She moved in with her daughter when the pandemic hit, but she continued to pay full rent to the facility to save her spot until she returned in 2021. In March of that year, when her daughter was preparing to refile a claim for long-term care insurance and her premiums had reached $320 a month, Kempski had a massive stroke. She died the next month. The insurer never paid for any of her care. 

Coverage in a Facility but Not at Home

The policy held by Angela Jemmott’s mother, Jewell Thomas, went unused for a different reason: Like many older policies, it covered only skilled nursing care in a facility. Her children had purchased the policy after Thomas’ husband died at 56. 

But decades later, once Thomas developed dementia in her 80s, her children realized how desperately their mother wanted to stay home. Jemmott said they tried to add a rider to the policy to cover home care but were told that their mother’s age (older than 75) barred add-ons. Now the siblings jointly pay about $4,000 a month for two home health aides, while still paying the insurance premium of more than $2,500 a year. “We feel like if we stop paying it, another unforeseen need will arise and cause us to wish we kept it,” Jemmott said. 

Not all policyholders are displeased. 

Bert Minushkin, of Royal Palm Beach, Florida, paid monthly premiums for 27 years, beginning in 1993 when the policy was offered as a benefit by Westinghouse Electric Corp., where he worked as a nuclear engineer. Over time, he paid about $120,000 toward the policy, said his daughter Lisa Heffley, 61, of Louisville, Kentucky. 

Diagnosed with dementia, Minushkin began declining swiftly in 2019. His wife spent $220,000 on assisted living facilities and private aides for him over three years, with about $90,000 of the cost offset by his policy, Heffley said. He died in February 2022 at age 91. 

“He didn’t break even, but thank God he had it,” she said. 

Turning to Crowdfunding

Many experts say what’s needed is a government-subsidized or public program that requires people to carry long-term care insurance, as the Netherlands and Singapore have. But federal efforts to create such a system, including the CLASS Act, which was repealed in 2013, and the WISH Act, introduced in 2021, have failed to gain traction in Congress. At the state level, Washington this summer started a first-in-the-nation program that will provide long-term care benefits for residents who pay into a fund, but the maximum benefit of $36,500 will not cover a year in most assisted living facilities.

Lack of a safety net leaves some people unprotected, like Jeffrey Tanck, a real estate broker in Washington, D.C. In 2021, his mother, Sue Tanck, at 75, suffered a serious fall, leaving her with broken arms and a traumatic brain injury. She had been the primary caretaker for his father, Roger, then 77, who had rapidly worsening dementia. 

Without warning, Jeffrey Tanck had to assume charge of his father’s care, moving him into an assisted living center in Ocala, Florida, that now charges $4,600 a month, and had to get his mother into a skilled nursing facility paid for by Medicaid. With no money to cover his father’s costs until he sold their house, Tanck resorted to a plea on the crowdfunding site GoFundMe. 

Wanting to shield himself from a similar financial crisis somewhere down the road, Tanck, who is 51, applied for long-term care insurance, only to be denied. The reason? He takes antidepressants, which help him cope with the anxiety and stress of caring for his parents. 

“What are people supposed to do?” Tanck asked. “I’m going to need something.” 

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What is assisted living?

Assisted living facilities occupy the middle ground of housing for people who can no longer live independently but don’t need the full-time medical supervision provided at a nursing home. They might be right for those who have trouble moving about, bathing, eating, or dressing, or who have Alzheimer’s disease or other forms of dementia.

Assisted living facilities can look like luxury apartments or modest group homes, but they are staffed with aides who can help residents take a shower, get out of bed, get to the dining room, take medications, or help with other daily tasks and needs. Meals, activities, and housekeeping are usually provided. Some facilities have trained nurses on-site, but in many states the facilities are not required to have them at the ready, or at all. Popular buildings — or specialized units within them, such as ones for dementia — have waiting lists.

“The key is to start early,” said Eilon Caspi, an assistant research professor at the University of Connecticut. “You don’t want to wait for the crisis and then have 24 hours to make a decision.”

How can I know how much assisted living will cost me?

The monthly costs to live in a facility generally range from $3,000 to $12,000 or more. Charges are frequently broken into two components: rent and a care plan. Rents are set similarly to the way landlords establish them for apartments, with larger units in more expensive regions having higher rents and rent concessions being more likely when many units are unoccupied.

The costs of care plans are based on how much assistance the facility thinks residents will need, at least when they first move in. Most of them assign residents a “level” or “tier” based on the extent of their needs, but some will itemize charges for specific services. It’s like the difference between a prix fixe and an à la carte menu (except you don’t get to choose which approach you prefer within each facility). Assisted living units or facilities devoted to dementia residents are more likely to set one comprehensive price, though many have tiers.

Make sure the facility’s assessment reflects what the resident will need, or it might increase the price if it is providing more assistance than expected. Check if meals are priced separately.

What charges might catch me by surprise?

Facilities often have nonrecurring initial charges, like move-in fees or “community fees.” You should ask whether there are extra charges for things residents might need or use, like nurse visits, cable television, or other kinds of assistance; such charges can pile up quickly if they’re not detailed as included in the care plan. Some places even charge more if you get medications from a pharmacy other than the one they have a business relationship with.

It’s worth checking a few months after moving in to see if the care plan is more than the resident needs. If so, ask for the price to be lowered to remove services that aren’t being used.

Is it better to go with a facility that charges a set monthly amount or one that bills for each service?

If you want predictability in your monthly bill, you’re safer with a facility that is all-inclusive or that charges by tiers or bundled services. That’s also true if you need assistance with many things. If you don’t need a lot of help, à la carte may be better. Some facilities have an independent-living wing or a program with à la carte pricing, which may be best for those who need only sporadic assistance. If you need more help as time goes on, you can transition to the assisted living section or program and get a care bundle.

What happens when a resident ages and becomes frailer?

Care plans for those needing the most assistance can be double or triple the cost of those for the most independent residents. Ask the facility to explain what causes price increases. Be honest with yourself, and the facility, about what you can afford when the bill rises, because it’s going to. “You’ve got to understand your future is coming,” said Karen Van Dyke, a certified senior adviser in San Diego who helps families find the right facility for them.

Also make sure you understand the maximum level of care the place can provide. If you require more, the home may make you move out. For instance, some places will care for people who have occasional lapses of memory or disorientation but not those whose dementia causes delusions, agitation, or aggression. There are fewer legal protections against evictions in assisted living facilities than in nursing homes. Be realistic about what you need: No one wants to move into a nursing home, but it’s dangerous for residents to stay in an assisted living facility that can’t take care of them.

What happens if I run out of money?

You may have to leave. Most assisted living facilities are for-profit, and they have no legal obligation to keep the indigent. About 1 in 5 facilities accept Medicaid to help pay for the cost of providing care, but Medicaid doesn’t cover rent at assisted living facilities, so even then you may be forced out. Some states or counties will help cover the cost of housing if you have no savings and little retirement income, so it’s worth finding out if that’s available. (Call your local Area Agency on Aging for assistance.) Some facility owners will accept lower fees for longtime residents, but they are the exception.

How can I find out how good a facility is?

While it’s easy to get wowed by fancy dining options, sparkly chandeliers, and other building amenities, none of those are markers of quality care. If you’re considering multiple facilities, ask about the ratio of residents to aides — on nights and weekends as well as weekdays — and whether there are licensed nurses in the building, and when they are there.

The person running the facility is often known as the administrator or director. Ask about how often this position has turned over. If a facility has churned through several administrators in a few years, that’s a troubling sign about the quality of its management and owners.

Which are better — nonprofit or for-profit assisted living facilities?

Researchers have found that for-profit facilities in Minnesota and Florida are more likely to be cited for violating state health regulations, but there’s not solid evidence nationwide. There are good and bad facilities of both ownership types: A small for-profit residence with an engaged owner on-site may provide better care than a mediocre nonprofit. Be aware that nonprofits generally aren’t less expensive than for-profits; while they don’t have to provide returns to investors, they do run like a business and need to earn more than they spend each month for capital improvements and to avoid cash flow problems. Nonprofits often use the same pricing methods as for-profits, and many charge more.

What should I look for during a tour?

Kristine Sundberg, executive director of Elder Voice Advocates in Minnesota, a coalition of family members, tells people to watch how residents engage with a facility’s workers. “Are they active and busy with things, or are they slouched over in a chair, being ignored?” she said. You might aim to visit on weekends, when staffing is often lightest. Ask the facility if it will let families put cameras in residents’ rooms so you can keep tabs on them remotely.

Who can help me?

Along with consumer groups like Sundberg’s, some of the most knowledgeable independent experts are long-term care ombudsmen, who are federally funded advocates for residents of nursing homes and other facilities for older people. Every state has such a program with advocates assigned to particular regions. An Area Agency on Aging is another source. These agencies are local government or nonprofit organizations that each state designates to help older people. They can help you understand your financial options and find facilities. You can locate your agency via https://eldercare.acl.gov/Public/Index.aspx.

If you want to check out a facility’s history of infractions, find the state agency that licenses assisted living facilities. In some states, it’s part of the health department, while others assign this job to their human service or social service agency. A report is written up after a facility is inspected. Licensing agencies may publish inspection reports on their websites, although they aren’t always easy to find. It’s a red flag if a facility is repeatedly cited for the same problem.

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But their cost is so crushingly high that most Americans can’t afford them.

What to Know About Assisted Living

The facilities can look like luxury apartments or modest group homes and can vary in pricing structures. Here’s a guide.

These highly profitable facilities often charge $5,000 a month or more and then layer on fees at every step. Residents’ bills and price lists from a dozen facilities offer a glimpse of the charges: $12 for a blood pressure check; $50 per injection (more for insulin); $93 a month to order medications from a pharmacy not used by the facility; $315 a month for daily help with an inhaler.

The facilities charge extra to help residents get to the shower, bathroom, or dining room; to deliver meals to their rooms; to have staff check-ins for daily “reassurance” or simply to remind residents when it’s time to eat or take their medication. Some even charge for routine billing of a resident’s insurance for care.

“They say, ‘Your mother forgot one time to take her medications, and so now you’ve got to add this on, and we’re billing you for it,’” said Lori Smetanka, executive director of the National Consumer Voice for Quality Long-Term Care, a nonprofit.

About 850,000 older Americans reside in assisted living facilities, which have become one of the most lucrative branches of the long-term care industry that caters to people 65 and older. Investors, regional companies, and international real estate trusts have jumped in: Half of operators in the business of assisted living earn returns of 20% or more than it costs to run the sites, an industry survey shows. That is far higher than the money made in most other health sectors.

Rents are often rivaled or exceeded by charges for services, which are either packaged in a bundle or levied à la carte. Overall prices have been rising faster than inflation, and rent increases since the start of last year have been higher than at any previous time since at least 2007, according to the National Investment Center for Seniors Housing & Care, which provides data and other information to companies.

There are now 31,000 assisted living facilities nationwide — twice the number of skilled nursing homes. Four of every five facilities are run as for-profits. Members of racial or ethnic minority groups account for only a tenth of residents, even though they make up a quarter of the population of people 65 or older in the United States.

A public opinion survey conducted by KFF found that 83% of adults said it would be impossible or very difficult to pay $60,000 a year for an assisted living facility. Almost half of those surveyed who either lived in a long-term care residence or had a loved one who did encountered unexpected add-on fees for things they assumed were included in the price.

Assisted living is part of a broader affordability crisis in long-term care for the swelling population of older Americans. Over the past decade, the market for long-term care insurance has virtually collapsed, covering just a tiny portion of older people. Home health workers who can help people stay safely in their homes are generally poorly paid and hard to find.

And even older people who can afford an assisted living facility often find their life savings rapidly drained.

Unlike most residents of nursing homes, where care is generally paid for by Medicaid, the federal-state program for the poor and disabled, assisted living residents or their families usually must shoulder the full costs. Most centers require those who can no longer pay to move out.

The industry says its pricing structures pay for increased staffing that helps the more infirm residents and avoids saddling others with costs of services they don’t need.

Prices escalate greatly when a resident develops dementia or other serious illnesses. At one facility in California, the monthly cost of care packages for people with dementia or other cognitive issues increased from $1,325 for those needing the least amount of help to $4,625 as residents’ needs grew.

“It’s profiteering at its worst,” said Mark Bonitz, who explored multiple places in Minnesota for his mother, Elizabeth. “They have a fixed amount of rooms,” he said. “The way you make the most money is you get so many add-ons.” Last year, he moved his mother to a nonprofit center, where she lived until her death in July at age 96.

LaShuan Bethea, executive director of the National Center for Assisted Living, a trade association of owners and operators, said the industry would require financial support from the government and private lenders to bring prices down.

“Assisted living providers are ready and willing to provide more affordable options, especially for a growing elderly population,” Bethea said. “But we need the support of policymakers and other industries.” She said offering affordable assisted living “requires an entirely different business model.”

Others defend the extras as a way to appeal to the waves of boomers who are retiring. “People want choice,” said Beth Burnham Mace, a special adviser for the National Investment Center for Seniors Housing & Care. “If you price it more à la carte, you’re paying for what you actually desire and need.”

Yet residents don’t always get the heightened attention they paid for. Class-action lawsuits have accused several assisted living chains of failing to raise staffing levels to accommodate residents’ needs or of failing to fulfill billed services.

“We still receive many complaints about staffing shortages and services not being provided as promised,” said Aisha Elmquist, until recently the deputy ombudsman for long-term care in Minnesota, a state-funded advocate. “Some residents have reported to us they called 911 for things like getting in and out of bed.”

‘Can You Find Me a Money Tree?’

Florence Reiners, 94, adores living at the Waters of Excelsior, an upscale assisted living facility in the Minneapolis suburb of Excelsior. The 115-unit building has a theater, a library, a hair salon, and a spacious dining room.

“The windows, the brightness, and the people overall are very cheerful and very friendly,” Reiners, a retired nursing assistant, said. Most important, she was just a floor away from her husband, Donald, 95, a retired water department worker who served in the military after World War II and has severe dementia.

She resisted her children’s pleas to move him to a less expensive facility available to veterans.

Reiners is healthy enough to be on a floor for people who can live independently, so her rent is $3,330 plus $275 for a pendant alarm. When she needs help, she’s billed an exact amount, like a $26.67 charge for the 31 minutes an aide spent helping her to the bathroom one night.

Her husband’s specialty care at the facility cost much more: $6,150 a month on top of $3,825 in rent.

Month by month, their savings, mainly from the sale of their home, and monthly retirement income of $6,600 from Social Security and his municipal pension, dwindled. In three years, their assets and savings dropped to about $300,000 from around $550,000.

Her children warned her that she would run out of money if her health worsened. “She about cried because she doesn’t want to leave her community,” Anne Palm, one of her daughters, said.

In June, they moved Donald Reiners to the VA home across the city. His care there costs $3,900 a month, 60% less than at the Waters. But his wife is not allowed to live at the veterans’ facility.

After nearly 60 years together, she was devastated. When an admissions worker asked her if she had any questions, she answered, “Can you find me a money tree so I don’t have to move him?”

Heidi Elliott, vice president for operations at the Waters, said employees carefully review potential residents’ financial assets with them, and explain how costs can increase over time.

“Oftentimes, our senior living consultants will ask, ‘After you’ve reviewed this, Mr. Smith, how many years do you think Mom is going to be able to, to afford this?’” she said. “And sometimes we lose prospects because they’ve realized, ‘You know what? Nope, we don’t have it.’”

Potential Buyers From the Bahamas

For residents, the median annual price of assisted living has increased 31% faster than inflation, nearly doubling from 2004 to 2021, to $54,000, according to surveys by the insurance firm Genworth. Monthly fees at memory care centers, which specialize in people with dementia and other cognitive issues, can exceed $10,000 in areas where real estate is expensive or the residents’ needs are high.

Diane Lepsig, president of CarePatrol of Bellevue-Eastside, in the Seattle suburbs, which helps place people, said that she has warned those seeking advice that they should expect to pay at least $7,000 a month. “A million dollars in assets really doesn’t last that long,” she said.

Prices rose even faster during the pandemic as wages and supply costs grew. Brookdale Senior Living, one of the nation’s largest assisted living owners and operators, reported to stockholders rate increases that were higher than usual for this year. In its assisted living and memory care division, Brookdale’s revenue per occupied unit rose 9.4% in 2023 from 2022, primarily because of rent increases, financial disclosures show.

In a statement, Brookdale said it worked with prospective residents and their families to explain the pricing and care options available: “These discussions begin in the initial stages of moving in but also continue throughout the span that one lives at a community, especially as their needs change.”

Many assisted living facilities are owned by real estate investment trusts. Their shareholders expect the high returns that are typically gained from housing investments rather than the more marginal profits of the heavily regulated health care sector. Even during the pandemic, earnings remained robust, financial filings show.

Ventas, a publicly traded real estate investment trust, reported earning revenues in the third quarter of this year that were 24% above operating costs from its investments in 576 senior housing properties, which include those run by Atria Senior Living and Sunrise Senior Living.

Ventas said the prices for its services were affordable. “In markets where we operate, on average it costs residents a comparable amount to live in our communities as it does to stay in their own homes and replicate services,” said Molly McEvily, a spokesperson.

In the same period, Welltower, another large real estate investment trust, reported a 24% operating margin from its 883 senior housing properties, which include ones operated by Sunrise‌, Atria, Oakmont Management Group, and Belmont Village.‌ Welltower did not respond‌‌ to requests for comment.

The median operating margin for assisted living facilities in 2021 was 23% if they offered memory care and 20% if they didn’t, according to David Schless, chief executive of the American Seniors Housing Association, a trade group that surveys the industry each year.

Bethea said those returns could be invested back into facilities’ services, technology, and building updates. “This is partly why assisted living also enjoys high customer satisfaction rates,” she said.

Brandon Barnes, an administrator at a family business that owns three small residences in Esko, Minnesota, said he and other small operators had been approached by brokers for companies, including one based in the Bahamas. “I don’t even know how you’d run them from that far away,” he said.

Rating the Cost of a Shower, on a Point Scale

To consistently get such impressive returns, some assisted living facilities have devised sophisticated pricing methods. Each service is assigned points based on an estimate of how much it costs in extra labor, to the minute. When residents arrive, they are evaluated to see what services they need, and the facility adds up the points. The number of points determines which tier of services you require; facilities often have four or five levels of care, each with its own price.

Charles Barker, an 81-year-old retired psychiatrist with Alzheimer’s, moved into Oakmont of Pacific Beach, a memory care facility in San Diego, in November 2020. In the initial estimate, he was assigned 135 points: 5 for mealtime reminders; 12 for shaving and grooming reminders; 18 for help with clothes selection twice a day; 36 to manage medications; and 30 for the attention, prompting, and redirection he would need because of his dementia, according to a copy of his assessment provided by his daughter, Celenie Singley.

Barker’s points fell into the second-lowest of five service levels, with a charge of $2,340 on top of his $7,895 monthly rent.

Singley became distraught over safety issues that she said did not seem as important to Oakmont as its point system. She complained in a May 2021 letter to Courtney Siegel, the company’s chief executive, that she repeatedly found the doors to the facility, located on a busy street, unlocked — a lapse at memory care centers, where secured exits keep people with dementia from wandering away. “Even when it’s expensive, you really don’t know what you’re getting,” she said in an interview.

Singley, 50, moved her father to another memory care unit. Oakmont did not respond to requests for comment.

Other residents and their families brought a class-action lawsuit against Oakmont in 2017 that said the company, an assisted living and memory care provider based in Irvine, California, had not provided enough staffing to meet the needs of residents it identified through its own assessments.

Jane Burton-Whitaker, a plaintiff who moved into Oakmont of Mariner Point in Alameda, California, in 2016, paid $5,795 monthly rent and $270 a month for assistance with her urinary catheter, but sometimes the staff would empty the bag just once a day when it required multiple changes, the lawsuit said.

She paid an additional $153 a month for checks of her “fragile” skin “up to three times a day, but most days staff did not provide any skin checks,” according to the lawsuit. (Skin breakdown is a hazard for older people that can lead to bedsores and infections.) Sometimes it took the staff 45 minutes to respond to her call button, so she left the facility in 2017 out of concern she would not get attention should she have a medical emergency, the lawsuit said.

Oakmont paid $9 million in 2020 to settle the class-action suit and agreed to provide enough staffing, without admitting fault.

Similar cases have been brought against other assisted living companies. In 2021, Aegis Living, a company based in Bellevue, Washington, agreed to a $16 million settlement in a case claiming that its point system — which charged 64 cents per point per day — was “based solely on budget considerations and desired profit margins.” Aegis did not admit fault in the settlement or respond to requests for comment.

When the Money Is Gone

Jon Guckenberg’s rent for a single room in an assisted living cottage in rural Minnesota was $4,140 a month before adding in a raft of other charges.

The facility, New Perspective Cloquet, charged him $500 to reserve a spot and a $2,000 “entrance fee” before he set foot inside two years ago. Each month, he also paid $1,080 for a care plan that helped him cope with bipolar disorder and kidney problems, $750 for meals, and another $750 to make sure he took his daily medications. Cable service in his room was an extra $50 a month.

A year after moving in, Guckenberg, 83, a retired pizza parlor owner, had run through his life’s savings and was put on a state health plan for the poor.

Doug Anderson, a senior vice president at New Perspective, said in a statement that “the cost and complexity of providing care and housing to seniors has increased exponentially due to the pandemic and record-high inflation.”

In one way, Guckenberg has been luckier than most people who run out of money to pay for their care. His residential center accepts Medicaid to cover the health services he receives.

Most states have similar programs, though a resident must be frail enough to qualify for a nursing home before Medicaid will cover the health care costs in an assisted living facility. But enrollment is restricted. In 37 states, people are on waiting lists for months or years.

“We recognize the current system of having residents spend down their assets and then qualify for Medicaid in order to stay in their assisted living home is broken,” said Bethea, with the trade association. “Residents shouldn’t have to impoverish themselves in order to continue receiving assisted living care.”

Only 18% of residential care facilities agree to take Medicaid payments, which tend to be lower than what they charge self-paying clients, according to a federal survey of facilities. And even places that accept Medicaid often limit coverage to a minority of their beds.

For those with some retirement income, Medicaid isn’t free. Nancy Pilger, Guckenberg’s guardian, said that he was able to keep only about $200 of his $2,831 monthly retirement income, with the rest going to paying rent and a portion of his costs covered by the government.

In September, Guckenberg moved to a nearby assisted living building run by a nonprofit. Pilger said the price was the same. But for other residents who have not yet exhausted their assets, Guckenberg’s new home charges $12 a tray for meal delivery to the room; $50 a month to bill a person’s long-term care insurance plan; and $55 for a set of bed rails.

Even after Guckenberg had left New Perspective, however, the company had one more charge for him: a $200 late payment fee for money it said he still owed.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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Adult Children Discuss the Trials of Caring for Their Aging Parents

The financial and emotional toll of providing and paying for long-term care is wreaking havoc on the lives of millions of Americans. Read about how a few families are navigating the challenges, in their own words.

Feylyn Lewis, 35, sacrificed a promising career as a research director in England to return home to Nashville after her mother had a debilitating stroke. They ran up $15,000 in medical and credit card debt while she took on the role of caretaker.

Sheila Littleton, 30, brought her grandfather with dementia to her family home in Houston, then spent months fruitlessly trying to place him in a nursing home with Medicaid coverage. She eventually abandoned him at a psychiatric hospital to force the system to act.

“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 Richard Johnson, director of the program on retirement policy at the Urban Institute.

The prospect of dying broke looms as an imminent threat for the boomer generation, which vastly expanded the middle class and looked hopefully toward a comfortable retirement on the backbone of 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 price tag for 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 19 million.

The United States has no coherent system of long-term care, mostly a patchwork. The private market, where a minuscule portion of families buy long-term care insurance, has shriveled, reduced over years of giant rate hikes by insurers that had underestimated how much care people would actually use. Labor shortages have left families searching for workers willing to care for their elders in the home. And the cost of a spot in an assisted living facility has soared to an unaffordable level for most middle-class Americans. They have to run out of money to qualify for nursing home care paid for by the government.

For an examination of the crisis in long-term care, The New York Times and KFF Health News interviewed families across the nation as they struggled to obtain care; examined companies that provide it; and analyzed data from the federally funded Health and Retirement Study, the most authoritative national survey of older people about their long-term care needs and financial resources.

About 8 million people 65 and older reported that they had dementia or difficulty with basic daily tasks like bathing and feeding themselves — and nearly 3 million of them had no assistance at all, according to an analysis of the survey data. Most people relied on spouses, children, grandchildren, or friends.

The United States devotes a smaller share of its gross domestic product to long-term care than do most other wealthy countries, including Britain, France, Canada, Germany, Sweden, and Japan, according to the Organization for Economic Cooperation and Development. The United States lags its international peers in another way: It dedicates far less of its overall health spending toward long-term care.

“We just don’t value elders the way that other countries and other cultures do,” said Rachel Werner, executive director of the Leonard Davis Institute of Health Economics at the University of Pennsylvania. “We don’t have a financing and insurance system for long-term care,” she said. “There isn’t the political will to spend that much money.”

What Long-Term Care Looks Like Around the World

Most countries spend more than the United States on care, but middle-class and affluent people still bear a substantial portion of the costs.

Despite medical advances that have added years to the average life span and allowed people to survive decades more after getting cancer or suffering from heart disease or strokes, federal long-term care for older people has not fundamentally changed in the decades since President Lyndon Johnson signed Medicare and Medicaid into law in 1965. From 1960 to 2021, the number of Americans age 85 and older increased at more than six times the rate of the general population, according to census records.

Medicare, the federal health insurance program for Americans 65 and older, covers the costs of medical care, but generally pays for a home aide or a stay in a nursing home only for a limited time during a recovery from a 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, forcing them to sell much of their property and to empty their bank accounts. If they go into a nursing home, they are permitted to keep a pittance of their retirement income: $50 or less a month in a majority of states. And spouses can hold onto only a modest amount of income and assets, often leaving their children and grandchildren to shoulder some of the financial burden.

“You basically want people to destitute themselves and then you take everything else that they have,” said Gay Glenn, whose mother lived in a nursing home in Kansas until she died in October at age 96.

Her mother, Betty Mae Glenn, had to spend down her savings, paying the home more than $10,000 a month, until she qualified for Medicaid. Glenn, 61, relocated from Chicago to Topeka more than four years ago, moving into one of her mother’s two rental properties and overseeing her care and finances.

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 $20,000 from the proceeds.

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.

At any given time, skilled nursing homes house roughly 630,000 older residents whose average age is about 77, according to recent estimates. A long-term resident’s care can easily cost more than $100,000 a year without Medicaid coverage at these institutions, which are supposed to provide round-the-clock nursing coverage.

Nine in 10 people said it would be impossible or very difficult to pay that much, according to a KFF public opinion poll conducted during the pandemic.

Efforts to create a national long-term care system have repeatedly collapsed. Democrats have argued that the federal government needs to take a much stronger hand in subsidizing care. The Biden administration sought to improve wages and working conditions for paid caregivers. But a $150 billion proposal in the Build Back Better Act for in-home and community-based services under Medicaid was dropped to lower the price tag of the final legislation.

“This is an issue that’s coming to the front door of members of Congress,” said Sen. Bob Casey, a Pennsylvania Democrat and chair of the Senate Special Committee on Aging. “No matter where you’re representing — if you’re representing a blue state or red state — families are not going to settle for just having one option,” he said, referring to nursing homes funded under Medicaid. “The federal government has got to do its part, which it hasn’t.”

But leading Republicans in Congress say the federal government cannot be expected to step in more than it already does. Americans need to save for when they will inevitably need care, said Sen. Mike Braun of Indiana, the ranking Republican on the aging committee.

“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.’”

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: falling along a spectrum between good health and needing round-the-clock care in a nursing home.

That has led them to assisted living centers run by for-profit companies and private equity funds enjoying robust profits in this growing market. Some 850,000 people age 65 or older now live in these facilities that are largely ineligible for federal funds and run the gamut, with some providing only basics like help getting dressed and taking medication and others offering luxury amenities like day trips, gourmet meals, yoga, and spas.

The bills can be staggering.

Half of the nation’s assisted living facilities cost at least $54,000 a year, according to Genworth, a long-term care insurer. That rises substantially in many metropolitan areas with lofty real estate prices. Specialized settings, like locked memory care units for those with dementia, can cost twice as much.

Home care is costly, too. Agencies charge about $27 an hour for a home health aide, according to Genworth. Hiring someone who spends six or seven hours a day cleaning and helping an older person get out of bed or take medications can add up to $60,000 a year.

As Americans live longer, the number who develop dementia, a condition of aging, has soared, as have their needs. Five million to 7 million Americans age 65 and up have dementia, and their ranks are projected to grow to nearly 12 million by 2040. The condition robs people of their memories, mars the ability to speak and understand, and can alter their personalities.

In Seattle, Margaret and Tim Newcomb sleep on separate floors of their two-story cottage, with Margaret ever mindful that her husband, who has dementia, can hallucinate and become aggressive if medication fails to tame his symptoms.

“The anger has diminished from the early days,” she said last year.

But earlier on, she had 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 $8,000 a month and some could reach nearly twice that amount. The couple’s monthly income, with his pension from Seattle City Light, the utility company, and their combined Social Security, is $6,000.

Placing her husband in such a place would have gutted the $500,000 they had saved before she retired from 35 years teaching art and French at a parochial school.

“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.”

In the last year, medication has quelled Tim’s anger, but his health has declined so much that he no longer poses a physical threat. 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 who have become guardians of aged parents and have watched their slow, expensive declines.

Claudia Morrell, 64, of Parkville, Maryland, estimated her mother, Regine Hayes, spent more than $1 million during the eight years she needed residential care for dementia. That was possible only because her mother had two pensions, one from her husband’s military service and another from his job at an insurance company, plus savings and Social Security.

Morrell paid legal fees required as her mother’s guardian, as well as $6,000 on a special bed so her mother wouldn’t fall out and on private aides after she suffered repeated small strokes. Her mother died last December at age 87.

“I will never have those kinds of resources,” Morrell, an education consultant, said. “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. You certainly can’t live that way on Social Security.”

Women Bear the Burden of Care

For seven years, Annie Reid abandoned her life in Colorado to sleep in her childhood bedroom in Maryland, living out of her suitcase and caring for her mother, Frances Sampogna, who had dementia. “No one else in my family was able to do this,” she said.

“It just dawned on me, I have to actually unpack and live here,” Reid, 61, remembered thinking. “And how long? There’s no timeline on it.”

After Sampogna died at the end of September 2022, her daughter returned to Colorado and started a furniture redesign business, a craft she taught herself in her mother’s basement. Reid recently had her knee replaced, something she could not do in Maryland because her insurance didn’t cover doctors there.

“It’s amazing how much time went by,” she said. “I’m so grateful to be back in my life again.”

Studies are now calculating the toll of caregiving on children, especially women. The median lost wages for women providing intensive care for their mothers is $24,500 over two years, according to a study led by Norma Coe, an associate professor at the Perelman School of Medicine at the University of Pennsylvania.

Lewis moved back from England to Nashville to care for her mother, a former nurse who had a stroke that put her in a wheelchair.

“I was thrust back into a caregiving role full time,” she said. She gave up a post as a research director for a nonprofit organization. She is also tending to her 87-year-old grandfather, ill with prostate cancer and kidney disease.

Making up for lost income seems daunting while she continues to support her mother.

But she is regaining hope: She was promoted to assistant dean for student affairs at Vanderbilt School of Nursing and was recently married. She and her husband plan to stay in the same apartment with her mother until they can save enough to move into a larger place.

Government Solutions Are Elusive

Over the years, lawmakers in Congress and government officials have sought to ease the financial burdens on individuals, but little has been achieved.

The CLASS Act, part of the Obamacare legislation 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, another proposal, called the WISH Act, outlined a long-term care trust fund, but it never gained traction.

On the home care front, the scarcity of workers has led to a flurry of attempts to improve wages and working conditions for paid caregivers. A provision in the Build Back Better Act to provide more funding for home care under Medicaid was not included in the final Inflation Reduction Act, a less costly version of the original bill that Democrats sought to pass last year.

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 1.4 million 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%.

In April, President Joe Biden signed an executive order calling for changes to government programs that would improve conditions for workers and encourage initiatives that would relieve some of the burdens on families providing care.

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 for the federal government by the Urban Institute. Almost half of upper-middle-class couples with lifetime earnings of more than $4.75 million will also end up on Medicaid.

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-paying Medicaid rate.

Qualifying for a slot in a nursing home paid by Medicaid can 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 Stan Markowitz, a former history professor in Baltimore with Parkinson’s disease, and his wife, Dottye Burt, 78, exhausted their savings on his two-year stay in an assisted living facility, he qualified for Medicaid and moved into a nursing home.

He was required to contribute $2,700 a month, which ate up 45% of the couple’s retirement income. Burt, who was a racial justice consultant for nonprofits, rented a modest apartment near the home, all she could afford on what was left of their income.

Markowitz died in September at age 86, easing the financial pressure on her. “I won’t be having to pay the nursing home,” she said.

Even finding a place willing to take someone can be a struggle. Harold Murray, Sheila Littleton’s grandfather, could no longer live safely in rural North Carolina because his worsening dementia led him to wander. She brought him to Houston in November 2020, then spent months trying to enroll him in the state’s Medicaid program so he could be in a locked unit at a nursing home.

She felt she was getting the runaround. Nursing home after nursing home told her there were no beds, or quibbled over when and how he would be eligible for a bed under Medicaid. In desperation, she left him at a psychiatric hospital so it would find him a spot.

“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.

Reed Abelson is a health care reporter for The New York Times. The New York Times' Kirsten Noyes and graphics editor Albert Sun, KFF Health News data editor Holly K. Hacker, and JoNel Aleccia, formerly of KFF Health News, contributed to this report.

US Health and Retirement Study Analysis

The New York Times-KFF Health News data analysis was based on the Health and Retirement Study, a nationally representative longitudinal survey of about 20,000 people age 50 and older. The analysis defined people age 65 and above as likely to need long-term care if they were assessed to have dementia, or if they reported having difficulty with two or more of six specified activities of daily living: bathing, dressing, eating, getting in and out of bed, walking across a room, and using the toilet. The Langa-Weir classification of cognitive function, a related data set, was used to identify respondents with dementia. The analysis’s definition of needing long-term care assistance is conservative and in line with the criteria most long-term care insurers use in determining whether they will pay for services.

People were described as recipients of long-term care help if they reported receiving assistance in the month before the interview for the study or if they lived in a nursing home. The analysis was developed in consultation with Norma Coe, an associate professor of medical ethics and health policy at the Perelman School of Medicine at the University of Pennsylvania.

The financial toll on middle-class and upper-income people needing long-term care was examined by reviewing data that the HRS collected from 2000 to 2021 on wealthy Americans, those whose net worth at age 65 was in the 50th to 95th percentile, totaling anywhere from $171,365 to $1,827,765 in inflation-adjusted 2020 dollars. This group excludes the super-wealthy. Each individual’s wealth at age 65 was compared with their wealth just before they died to calculate the percentage of affluent people who exhausted their financial resources and the likelihood that would occur among different groups.

To calculate how many people were likely to need long-term care, how many people needing long-term care services were receiving them, and who was providing care to people receiving help, we looked at people age 65 and older of all wealth levels in the 2020-21 survey, the most recent.

The U.S. Health and Retirement Study is conducted by the University of Michigan and funded by the National Institute on Aging and the Social Security Administration.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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Natasha Lazartes

39, Brooklyn, New YorkTherapist

I am 39 years old. I had to care for my father, who passed from cancer in 2019; my mother, who passed in November 2021 from cancer; and since my mother’s passing, I have inherited the care of my grandmother. She is 97, diagnosed with moderate dementia, and considered high risk to be left home alone. We had been applying for Medicaid long-term care to receive a home health aide since early November 2021. She finally got a home health aide in January 2022, but it’s been a nightmare. They are so desperate to hire workers that they will take anyone. She was left without an aide on many random days with a late-notice telephone call or text message from the aide needing the day off and the agencies not able to find a replacement in time. I have changed agencies multiple times. My husband has been a great support the entire time. We rely on security cameras we installed in our apartment to see how she is doing while we are at work. How is it on a daily basis? It is emotionally and physically draining. The health care system for the elderly is neglected, broken, and inadequate to meet any demands, even the basic needs.

“When I signed the lease, I felt like I was breaking my promise.”

Robert Ingenito

44, Mamaroneck, New YorkPublic information officer

My father, who is now 93, had me late in life, at age 49. My mother died from cancer when I was 19. Literally on her deathbed, she said to me, “Don’t put your father in a nursing home.” Now, at 44, I’m married, I have a 6-year-old daughter, and for the past five years my dad has lived with us. I work about 20 hours a week, which allowed me to do something other than being his caregiver. If I had to put a price tag on the quality of care I provided to my dad, it would probably be the equivalent of a high-end assisted living facility. But it was becoming really hard for myself, my wife, and our daughter. His level of care was getting to the point of something I just could not sustain. He couldn’t be left alone. I wasn’t getting any sleep. Recently, I made the extremely difficult decision to move him into an assisted living facility. Fortunately, he has the financial resources to do that. For most people, that’s not even an option. I have been happy with the level of care that he’s getting, but when I signed the lease, I felt like I was breaking my promise. I tried my best to follow my mom’s wishes. But there’s only so much I could do, and I had to do it.

“I was a rebellious teen and she never gave up on me, so how am I going to give up on her?”

Karina Ortega

43, DallasCaregiver

My mother was diagnosed with Alzheimer’s in March 2020, but even before then, I knew something was wrong. One day, she went to visit a family friend and was going to donate some clothes to her. Seven hours later, we still hadn’t heard from her. She got lost. Eventually she found a supermarket that was familiar to her and got home. I’m no longer working at all. This has all taken a toll on my life. I do have a younger brother and an older sister, but my sister has a daughter in college and my brother has a 7-year-old. I’m the only one with no children and have always been the one who would take care of my parents. If Mom gets worse and I can’t care for her? That’s something I struggle with. Putting her in a home? In our culture, that’s looked down upon. I was a rebellious teen, and she never gave up on me, so how am I going to give up on her? I just can’t see it in me to leave my mom because she needs me.

“She passed in October. The state says we still owe close to $20,000 for the year Medicaid paid for her nursing home.”

Gay Glenn

61, Topeka, KansasActor

It was costing us $8,000 out-of-pocket to have people come into my mom’s house to help her, and that was only eight hours a day. I’m watching her savings just dwindle. And then she fell. And then she fell again overnight. At the hospital, they found she had a cracked sacrum. She was in rehab for the maximum number of days that Medicare will cover and couldn’t return home. Because she owned a house, had two rentals, savings, and two cars, she had to pay long-term care costs out of her pocket. I think my mom had about $18,000 in the bank. She had five life insurance policies in her children’s names. We cashed out the policies. In one year, she had to pay $65,000 for her care at the nursing home and spend down an additional $37,000 to be able to be eligible for Medicaid. We just sold her house. She passed in October. The state says we still owe close to $20,000 for the year Medicaid paid for her nursing home. I moved here in February of 2019. I certainly didn’t expect to be here going on five years. It was awful — personally all the time and energy and money to do this for her — and it was great. I was able to protect her and make sure everything was OK for her. I said at the memorial service that my mom was there when I took my first breath, and I was there when she took her last. If that’s not the circle of life, I don’t know what is.

“I’m going to take on some extra work to cover the costs.”

Bryan Ness

62, Angwin, CaliforniaBiology professor

We had it all planned. My mom was going to live with us. She has some cognitive issues from the stroke. All of her long-term memory is just fine. Her short-term memory is just nonexistent. We looked at what it would cost for home care. Even if we limited it to just eight hours a day, it’s more expensive than the assisted living place that’s 10 minutes from our house. It’s a wonderful little place. It’s $4,500 a month. That’s still a lot. She’s run out of her own money. There’s no more than the $1,500 she gets from Social Security. We talked to the place and got it down to $4,000. I got really good responses from GoFundMe. A lot of my former students and friends put in some chunks. I hate begging for money. My wife and I are at least at the age where we don’t have kids we’re supporting anymore. But we’re concerned we are going to hurt our own retirement savings. My wife is already 65. We need to keep our retirement plan going, too. They told us: Don’t ruin your own retirement over this. Well, agreed, but we’ve got to take care of my mom, too. We have a relative who’s giving $500 a month. I’m going to take on some extra work to cover the costs. I felt my career could wind down over the next few years, and now I’ve got an $1,800 bill added to my finances from now until whenever.

“I wish I had known that no one was going to help me.”

Stacey Wheeler

60, Greenville, South CarolinaRetiree

My mom was in independent living. I had someone coming in the morning to get her up. Nobody is getting paid enough to say: “Now, come on, you really want to get dressed. Let’s pick out some earrings.” I should have tried 20 people in hopes of finding one who did that. No one is going to waste time with an old person who doesn’t want to do what they don’t want to do. It’s hard to care about grumpy people when you’re barely putting food on the table. My mom got sick and then needed to be in a wheelchair in assisted living. When she sold her condo, she had about $2,500 a month in retirement and she had about $120,000 in the bank. That starts going fast when you hit $7,000 or $8,000 a month. Everyone’s so worried about being sued by people that every time something happened, they wanted her to go to the ER. I wish I had known that no one was going to help me. I would have kept her in independent living and gone through hiring people until I found one. My husband and I were both retired, fortunately. We couldn’t leave town. We tried twice and had to come back. Ironically, the last place she was in, because she was going to run out of money, was the best place. The room wasn’t as big, but the staff were the best there. Mom died in August 2022.

“They had to send her home with us and we had to keep her chemically sedated.”

Jeanette Landin

55, Brattleboro, VermontAssociate professor

There were wildfires where my mother lived out in California that were getting very close and were causing her health problems. Between that and a series of in-home falls and her inability to drive herself to different places, she finally called in November of 2017 and said, “I think I need to come live with you.” We found a house that would be adequate for both my family and her needs. Her dementia started to get worse. We looked at adult day care and found a local place. It was tremendously expensive to do that. But they were good until they got to a point where they contacted me and said she’s not following directions, she’s refusing to do appropriate hygiene. This was early 2022, and we had to pull her out of that service. In early April, she started getting violent and would threaten my husband that she was going to kill him by chopping his head off. And then she would tell me she was going to kill my daughters. One night I had her taken to the hospital and they found she had been in kidney failure. She was still very violent. They looked at placement in a nursing home. Because of the fact she was violent, she couldn’t be placed anywhere. They had to send her home with us, and we had to keep her chemically sedated. From the time she came home till the time she died, it was seven days. We kept our daughters from coming upstairs. We didn’t want them hearing and seeing what was happening because it’s not something I would wish anybody to ever go through. It was awful.

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Japan

Long-term care insurance is mandatory for Japanese citizens age 40 and over, while in the United States only a small portion of people voluntarily obtain coverage. Half the funding for Japan’s program comes from tax revenues and half from premiums. Older adults contribute 10% to 30% of the cost of services, depending on their income, and insurance picks up the rest. There is a maximum amount people must spend from their income before the insurance covers the remainder of the cost. Workers can also take up to 93 days of paid leave to help relatives with long-term care needs. Japan assigns a care manager to each person using services; each manager oversees about 40 older adults. In 2020, Japan spent 2% of its gross domestic product on long-term care, 67% more than the United States spent that year.

The Netherlands

The Dutch have included long-term care in their universal health care system since 1968. One public insurance program pays for nursing homes and other institutional settings, and another pays for nursing and personal care at home. Enrollment is mandatory. Dutch taxpayers contribute nearly 10% of their income toward insurance premiums, up to a set amount.Out-of-pocket payments amount to about 7% of the cost of institutional care. General taxes pay for a third program in which municipalities provide financial assistance and social support for older people living at home. There is no private long-term care insurance. The Netherlands spent 4.1% of its gross domestic product on long-term care in 2021, more than any other country tracked by the Organization for Economic Cooperation and Development, and four times the amount the United States spent.

Canada

Provinces and territories fund long-term care services through general tax revenue. Money budgeted is not always enough to cover all services, and some localities give priority to those with the greatest needs. The amount of subsidies people can receive, the costs they have to pay out-of-pocket, and the availability of services vary by province and territory, as they do in the United States with state Medicaid programs. The mix of providers also varies regionally: For instance, nursing home care in Quebec is mostly run by a public system while homes in Ontario are mostly for-profit. Notably, Canada’s long-term care system is separate from its national health care system, which pays for hospitals and doctors with no out-of-pocket costs to patients. In 2021, Canada spent 1.8% of its GDP on long-term care, 80% more than the United States spent.

United Kingdom

Local authorities pay for most long-term care through taxes and central government grants. Private providers usually supply services. Government contributions are based on financial need, with copayments usually required. As in the United States, middle-class and wealthy people pay most or all of the costs themselves. Unlike in the United States, the government provides payments directly to lower-income people so they can hire workers to care for them in their homes. The U.K. has also taken steps to shield people from losing all their wealth to pay for long-term care. It subsidizes care for people with savings and property of less than about $30,000, while in the United States most people don’t qualify for Medicaid until they have run through all but $2,000 to $3,000 of their assets. In 2022, the British government proposed extending subsidies to people who have as much as $105,000 of wealth and property, with a lifetime cap of about $100,000 on how much anyone spends on long-term medical care, excluding room and board in a nursing home. But the plan has been postponed until 2025. In 2021, the United Kingdom spent 1.8% of its GDP on long-term care, 80% more than the United States did.

Singapore

Singapore recently instituted a system of mandatory long-term care insurance for those born in 1980 or later. Citizens and permanent residents are automatically enrolled in an insurance plan called CareShield Life starting at age 30. They must pay premiums until they retire or turn 67 (whichever comes later) or are approved to use services. The government subsidizes 20% to 30% of premiums for those who earn around $2,000 a month or less. Monthly payouts start at about $440. Government subsidies for nursing homes and other institutional care can range from 10% to 75%, depending on ability to pay. Those who make more than $2,000 a month receive no subsidies. CareShield is optional for Singaporeans born in 1979 or earlier; they are covered under an older, voluntary plan. Singapore also provides a means-tested monthly cash grant — this year about $290 — to help with caregiving expenses.

Sources: The National Bureau of Economic Research project on international comparisons of long-term care; Kathleen McGarry; The Commonwealth Fund; Organization for Economic Cooperation and Development; government websites.Note: Spending comparisons with the United States are based on the most recent OECD data and include spending from government and compulsory insurance programs as a percent of each country’s gross domestic product, which is the total monetary value of all the finished goods and services produced within a country’s borders. The comparisons cover people of all ages and exclude spending from voluntary insurance plans and out-of-pocket costs. All currency figures are in U.S. dollars.

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Public comments are due Monday on the most sweeping regulatory changes to hit the industry in decades. The proposal has provoked a fierce lobbying battle between nursing homes and patient advocates, with more than 22,000 comments filed already to the Centers for Medicare and Medicaid Services.

(FYI, CMS is accepting comments through Monday in case you still have an itchy pen finger.)

The Health 202 is a coproduction of The Washington Post and KFF Health News.

Official nursing home financial records — those submitted to the government — report that more than 4 in 10 homes lost money in 2021. The industry says that it can’t afford higher payrolls. But instead of pumping more dollars into Medicare and Medicaid to ostensibly help homes hire more staff, CMS has proposed a relief valve: exempting homes from higher staffing requirements if: 

• They’re more than 20 miles from any other long-term care facility and
• In areas with a documented shortage of health-care workers

To the further consternation of patient advocates and many rank-and-file nurses and aides, the agency announced in its draft rule, released in September, that it may also exempt homes that are financially struggling.

Beyond understaffing concerns, excusing broke homes could encourage more financial chicanery in an industry where many operators have mastered the art of appearing poor while their owners siphon money into their own pockets.

The most common trick, honed over decades, involves owners setting up a bunch of separate companies to offload big chunks of the nursing home business — sometimes management, the staff, the equipment or the building itself.

Those companies charge the nursing home whatever their common owner decides, while only the licensed home is required to reveal its finances to the government. The industry insists there is no evidence these related companies charge any more than independent contractors would. 

The CMS proposal would require that states do more to track how much money each home spends on direct care billed to Medicaid, the biggest source of revenue for most homes. In theory, that could help discover which homes are shortchanging employees — and patients. The requirement, however, may be no match for the ingenuity of industry accountants, and notably lacks transparency about where money from Medicare, private insurance and out-of-pocket revenue ends up.

To recap: Existing federal rules only require homes to have at least one registered nurse working for eight consecutive hours each day, and at least one licensed nurse to be on duty around-the-clock. (Those workers are usually licensed practical nurses, or LPNs, who don’t go through as much professional education as registered nurses do.) 

CMS has mandated that homes have “sufficient” staffing but has never defined the term.

The new proposal would require each of the nation’s 15,000 nursing homes to have at least: 

• One registered nurse on duty for every 44 residents 
• A nurse aide for every 10 residents 

The agency has indicated it might add yet another requirement when it finalizes its rule: An umbrella staff ratio of one nurse or nurse aide of any kind for about every seven residents.

(If you’re reading the rule or planning to comment, be aware that CMS talks about staffing in a less accessible way than we do here, using a measurement of hours per resident day — HPRDs, in nursing-home lingo — instead of a staff-to-resident ratio.)

Patient advocates say the industry has plenty of money to raise staffing levels. They are demanding much more staffing than required in the CMS proposal, enough to provide the highest quality care — not just a minimum level of acceptable coverage.

Advocates want at least one nursing home worker for about every six residents, which a 2001 CMS study concluded would result in the best care. But in a move that enraged proponents of greater staffing, CMS didn’t even bother modeling that scenario when it drafted its proposal.

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The Centers for Disease Control and Prevention approved the latest vaccine on Sept. 12, and the new shots became available to the general public within the past week or so. But many nursing homes will not begin inoculations until well into October or even November, though infections among this vulnerable population are rising steeply, to nearly 1%, or 9.7 per 1,000 residents, as of mid-September from a low of 2.2per 1,000 residents in mid-June.

“The distribution of the new covid-19 vaccine is not going well,” said Chad Worz, CEO of the American Society of Consultant Pharmacists. “Older adults in those settings are certainly the most vulnerable and should have been prioritized.”

With the end of the formal public health emergency in May, the federal government stopped purchasing and distributing covid vaccines. That has added complications for operators of nursing homes who have encountered resistance throughout the pandemic in persuading employees and residents to get the shots.

The coronavirus decimated nursing homes during the first two years of the pandemic, killing more than 200,000 residents and staffers. Elizabeth Sobczyk, project director of Moving Needles, a CDC-funded initiative to improve adult immunization rates in long-term care facilities, said without a government agreement to purchase the shots, vaccine manufacturers will make large quantities only once CDC experts have recommended approval.

“Then they need to be FDA inspected — we want safe vaccines — then there is contracting and rollout,” Sobczyk said. “So I completely understand the frustration, but also why the availability wasn’t immediate.”

Even once the shots are available, nursing homes face continuing resistance to the vaccine among nurses and aides. Without state mandates for workers to be vaccinated, most nursing homes are relying on persuasion, and that is often proving difficult.

“People want covid-19 to be in the rearview mirror,” said Leslie Eber, medical director of Orchard Park Health Care Center in Centennial, Colorado. “We’re going to have to remind people more this year that covid-19 is not benign. Maybe it’s a cold for some people, but it’s not going to be a cold for the folks I care for.”

Sixty-two percent of nursing home residents are up to date on their vaccines, meaning they received the second booster available before this month’s new shot. That’s an improvement over the 38% rate at the start of October 2022, according to the most recent federal data as of mid-September.

But only 25% of nursing home employees are up to date, which is close to last October’s rate.

In a written statement, the Department of Health and Human Services said that it will be identifying long-term care facilities with low vaccination rates and reaching out to ensure “proven infection prevention and control measures are being implemented to protect seniors.”This year, more nurses and aides will have to obtain shots at drugstores or health centers, on their personal time rather than at work. Many homes run clinics, with their long-term care pharmacies supplying the vaccine as they did before, but face extra bureaucratic hassles in billing insurers for the vaccine for both residents and employees.

On top of that, homes are rolling out a new vaccine for a dangerous respiratory virus, RSV, which will be a third shot for many residents along with vaccines for covid and the flu.

The trio of vaccines will create more administrative complexity for nursing homes since this year they must bill Medicare to be reimbursed for the shots. The covid vaccine should be charged to Medicare Part B, which covers outpatient and physicians’ services, but the RSV vaccine must be billed to Medicare Part D, the prescription drug benefit.

“The United States has been phenomenal in screwing up vaccinations,” said David Nace, chief medical officer of UPMC Senior Communities in Pittsburgh. “This idea that some are under Part B and some are under Part D and some can be billed by a pharmacy — who in God’s name came up with this?”

While Medicare will pay for vaccines for most nursing home residents, employees may face private insurance red tape and, for a small group, potential out-of-pocket costs.

Leslie Frane, an executive vice president of the Service Employees International Union, which represents more than 134,000 workers in 1,465 nursing homes, said that many homes had stopped running clinics in their facilities and told workers to go to the drugstore to get vaccinated. She said this would lead to more workers skipping their shots.

“There’s very little time, given how many nursing home workers work multiple jobs,” she said.

The CDC has arranged for 25 million to 30 million people lacking health insurance or whose insurance doesn’t cover the complete cost of the vaccine to get free covid shots at select pharmacies, health centers, and medical offices listed at vaccines.gov. Frane said that program is not well known among workers, and Worz said distribution is favoring the large pharmacy chains, slowing access in rural communities. Of the nation’s 19,400 independent pharmacies, federal officials said 627, many in rural areas, are enrolled in the program and 100 are being added.

A big obstacle, though, continues to be resistance to the vaccination among nurses and aides. Like many facility owners, Avalon Health Care Group, which owns or operates more than a dozen nursing homes in Western states, is not mandating staff be vaccinated. Sabine von Preyss-Friedman, Avalon’s chief medical officer, said she tries to address the reasons with each worker and won’t abandon the push.

“We’re not going to just say, ‘OK, everyone get vaccinated’ and then forget about it,” she said.

Avalon’s homes have used modest financial incentives, such as organizing contests between different units, with the winner getting prizes like a pizza party or a drawing for a gift certificate from a department store, and those efforts will resume this year.

Jim Wright, medical director of Our Lady of Hope Health Center and two other nursing homes in Richmond, Virginia, said that rewards and respectful persuasion were not enough to sway his homes’ employees. They tend to be in their 20s and 30s and are not worried about catching covid, which many of them have already weathered.

“They most likely will not do it to protect the residents or protect themselves,” he said. “I don’t know what the answer is.”

Sheena Bumpas, a certified nursing assistant in Duncan, Oklahoma, and vice chair of the National Association of Health Care Assistants, plans on getting this season’s shot but said some of her colleagues won’t.

“Now that the public health emergency has ended, I think people are done with it,” she said.

Edenwald Senior Living, a nursing home within a retirement community in Towson, Maryland, is requiring its workers to be vaccinated unless they can justify an exemption for medical or religious reasons.

As of Sept. 10, about three-fourths of the home’s workers were up to date with their previous covid vaccines, which is triple the national rate for nursing home employees, according to federal records.

Edenwald is relying on the Giant supermarket pharmacy to administer the shots in the auditorium of its independent living section. Sign-up sheets have already been distributed for clinics later this month. The home is billing workers’ insurance for the shots, but facility managers said it will pay for employers without health coverage.

“This is our seventh clinic for covid,” said Meghan Curtis, Edenwald’s director of care management. “We’ve kind of got it down pat.”

Swati Gaur, medical director of three nursing homes affiliated with Northeast Georgia Health System, said leaders may offer recalcitrant employees the option to take the Novavax vaccine. It relies on more traditional virus-blocking technology than the Moderna or Pfizer shots that use messenger RNA.

“We are basically saying, ‘Why are you not taking the vaccine? Have you thought about Novavax? It’s manufactured like the flu vaccine,’” Gaur said.

For the first time, nursing home residents will be offered a vaccine for respiratory syncytial virus, or RSV. The virus causes the hospitalizations of as many as 160,000 people 65 and older each year, killing up to 10,000. Most nursing homes are coupling the flu vaccine with either the covid vaccine or the RSV vaccine, but not attempting to give all three simultaneously.

Gaur said because of the novelty of the vaccine and the relative unfamiliarity with RSV, clinicians will need to spend more time explaining the reason for the shots.

In Dallas Center, Iowa, Spurgeon Manor, an independent nonprofit home, is partnering with the pharmacy from a nearby Hy-Vee grocery store to provide the covid shot, most likely in early October, to 85 residents of the nursing home and an adjoining assisted living center as well as employees.

Alana Marean, Spurgeon’s assistant director of nursing, said workers will be encouraged to receive the shots, but she guessed that not even half would do so. “There’s a lot of stigma out there about it,” she said.

Resident Lee Giese, 95, a retired truck driver, said he’s looking forward to the latest shot after coming down with covid last winter. He suspects his earlier vaccinations helped protect him from more serious symptoms.

He expects most residents of his facility will get the shots, but a few will refuse. “Some people have a death wish,” he said.

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