What to Know About Home Care Services

Finding an aide to help an older person stay at home safely takes work. Here’s a guide.

Robin Lee, 67, has had dementia for about a decade, but the couple was able to take overseas trips and enjoy their marriage of some 40 years until three years ago, when she grew more agitated, prone to sudden outbursts, and could no longer explain what she needed or wanted. He struggled to care for her largely on his own.

“As Mom’s condition got more difficult to navigate, he was just handling it,” said Jesse Lee, the youngest of the couple’s three adult children. “It was getting harder and harder. Something had to change, or they would both perish.”

Frank Lee’s search for trustworthy home health aides — an experience that millions of American families face — has often been exhausting and infuriating, but he has persisted. He didn’t entirely trust the care his wife would get in an assisted living facility. Last August, when a respite program paid for her brief stay in one so Frank, 69, could take a trip to the mountains, she fell and fractured her sacrum, the bone that connects the spine to the pelvis.

There is precious little assistance from the government for families who need a home health aide, unless they are poor. The people working in these jobs are often woefully underpaid and unprepared to help a frail, older person with dementia bathe and use the bathroom, or to defuse an angry outburst.

Usually, it is family that steps into the breach — grown children who cobble together a fragile chain of visitors to help an ailing father; a middle-aged daughter who returns to her childhood bedroom; a son-in-law working from home who keeps a watchful eye on a confused parent; a wife who can barely manage herself looking after a faltering husband.

Frank Lee finally found two aides on his own, with no help from an agency. Using the proceeds from the sale of his stake in a group of restaurants, including the popular Charleston bistro Slightly North of Broad, he pays them the going rate of about $30 an hour. Between his wife’s care and medical expenses, he estimates he’s spending between $80,000 and $100,000 a year.

“Who the hell can afford this?” he asked. “There’s no relief for families unless they have great wealth or see their wealth sucked away.” He worries that he will run out of money and be forced to sell their home of more than three decades. “Funds aren’t unlimited,” he said.

Credited with emphasizing local ingredients and mentoring young chefs in Charleston, Lee retired in 2016, a few years after his wife’s diagnosis.

In an interview at the time, he said, “My wife has given up her life to help me in my career, and now I need to pay attention to her.”

In 2020, he contacted a half-dozen home care agencies. Some couldn’t fill the position. Others sent aides who were quickly overwhelmed by his wife’s behavior. Doctors told the family they believed she has frontotemporal dementia, which appeared to affect her language and how she behaved.

One woman seemed promising, only to quit after a week or two. “We never saw her again,” Lee said. He tried a friend of the family for a time, but she left when her grandmother developed liver cancer.

“It was the whole year of going through different caregivers,” said son Jesse.

Finally, Frank found two women to help. One of them, Ronnie Smalls, has more than a dozen years of experience and is trained in dementia care. She has developed a rapport with Robin, who seems reassured by a quick touch. “We have a really good bond,” Smalls said. “I know her language, her expression.”

One day at the Lees’ cozy one-story house, decorated with furniture made by Robin, and with a yard overflowing with greenery, Smalls fed her lunch at the kitchen table with her husband and daughter. Robin seemed to enjoy the company, murmuring in response to the conversation.

At other times, she seemed oblivious to the people around her. She can no longer walk on her own. Two people are often needed to help her get up from a chair or go to the bathroom, transitions she often finds upsetting. A day without an aide — out because of illness or a family emergency — frays the tenuous links that hold the couple’s life together.

Lee said his wife barely resembles the woman he married, the one who loved hiking, skiing, and gardening, and who started a neighborhood preschool while raising their three children. A voracious reader, she is now largely silent, staring into space.

The prognosis is bleak, with doctors offering little to hang onto. “What’s the end game look like?” Lee asks, wondering if it would be better if his wife had the right to die rather than slowly disappear before his eyes. “As she disintegrates, I disintegrate,” he said. She recently qualified for hospice care, which will involve weekly visits from a nurse and a certified nursing assistant paid under Medicare.

Charleston is flush with retirees attracted by its low taxes and a warm climate, and it boasts of ways to care for them with large for-profit home health chains and a scattering of small agencies. But many families in Charleston and across the nation can’t find the help they need. And when they do, it’s often spotty and far more expensive than they can afford.

Most Americans want to remain in their own homes, living independently, for as long as possible. They want to avoid nursing homes, which they see as providing poor care, polls have found. And the ranks of older people who need such help will grow. By 2030, 1 in 5 Americans will be at least 65 as millions in the baby boomer generation retire.

In dozens of interviews, families described a desperate and sometimes fruitless search for aides to help loved ones with simple tasks on a predictable schedule at an hourly rate they can afford.

Roughly 8 million people 65 and older had dementia or needed help with two or more activities of basic daily life, like getting out of bed, according to an analysis of a federally funded survey of older Americans by KFF Health News and The New York Times. Only a million received paid help outside of a nursing home, and nearly 3 million had no help at all.

Most families can’t afford what agencies charge — about $27 an hour, according to Genworth, a long-term care insurance company. So, many take their chances on untrained caregivers found through word-of-mouth, Craigslist, or other resources.

A Scarcity of Workers

One of the main obstacles to finding paid help is the chronic shortage of workers. Some 3.7 million people had jobs as aides in home health or personal care in 2022, with half of them earning less than $30,000 year, or $14.51 an hour, according to the Bureau of Labor Statistics. The number of people needed is expected to increase by more than 20% over the next decade. But the working conditions are hard, the pay is usually bad, and the hours are inconsistent.

About 3 million people are working in private homes, according to a 2023 analysis by PHI, a nonprofit that studies and acts as an advocate for the workforce, although official estimates may not count many workers paid off the books or hired outside of an agency by a family. Eighty-five percent of home care workers are women, two-thirds are people of color, and roughly a third are immigrants. The pay is often so low that more than half qualify for public assistance like food stamps or Medicaid.

Dawn Geisler, 53, has made only $10 an hour working as a home health aide in the Charleston area for the past four years, without ever getting a raise. She declined to name the agency that employs her because she doesn’t want to lose her job.

Geisler discovered she liked the work after caring for her mother. Unlike an office job, “every day is just a little bit different,” she said. She now juggles two clients. She might accompany one to the doctor and keep the other one company. “I’m taking care of them like they were my own family,” she said.

The agency provides no guarantee of work and doesn’t always tell her what to expect when she walks through the door, except to say someone has Alzheimer’s or is in a wheelchair. Her supervisors often fail to let her know if her client goes to the hospital, so families know to call her cellphone. She has waited weeks for a new assignment without getting paid a penny. She herself has no health insurance and sometimes relies on food banks to put meals on the table.

“I’m not making enough to pay all the bills I have,” said Geisler, who joined an advocacy group called the Fight for $15, which is pushing to raise the minimum wage in South Carolina and across the country. When her car broke down, she couldn’t afford to get it fixed. Instead, she walked to work or borrowed her fiancé’s bicycle.

Most home care agencies nationwide are for-profit and are often criticized for ignoring the needs of workers in favor of the bottom line.

“The business models are based on cheap labor,” said Robyn Stone, the senior vice president of research for LeadingAge, which represents nonprofit agencies. The industry has historically tolerated high turnover but now can’t attract enough workers in a strong, competitive job market. “I think there has been a rude awakening for a lot of these companies,” she said.

Many agencies have also refused to pay overtime or travel costs between jobs, and many have been accused of wage theft in lawsuits filed by home care workers or have been sanctioned by state and federal agencies.

Medicaid, the federal-state program that provides health care for the poor, is supposed to provide home aides but faces shortages of workers at the rates it pays workers. At least 20 states pay less than $20 an hour for a personal care aide, according to a recent state survey by KFF. Aides are often paid less under Medicaid than if they care for someone paying privately.

With low pay and few benefits, many people would rather work the checkout line in a supermarket or at a fast-food chain than take on the emotionally demanding job of caring for an older person, said Ashlee Pittmann, the chief executive of Interim HealthCare of Charleston, a home health agency. She said that she recently raised wages by $2 an hour and had had more success keeping employees, but that she still worried that “we may not be able to compete with some larger companies.”

The Biden administration failed to obtain an additional $400 billion from Congress for home- and community-based services to shift emphasis away from institutional care. President Joe Biden signed an executive order this year to encourage some reforms, and federal officials have proposed requiring home health agencies to spend 80 cents of every government dollar on paying workers under Medicaid. But so far, little has changed.

Falling Through the ‘Doughnut Hole‘

Long-term care coverage for most Americans is a yawning gap in government programs. And the chasm is widening as more Americans age into their 70s, 80s, and 90s.

The government’s main program for people 65 and older is Medicare, but it pays for a home aide only when a medical condition, like recovery from a stroke, has made a person eligible for a nurse or therapist to come to the home. And the aide is usually short-term. Medicare doesn’t cover long-term care.

Medicaid, which does pay for long-term care at home, is limited to serving the poor or those who can demonstrate they have hardly any assets. But, again, the worker shortage is so pervasive that waiting lists for aides are years long, leaving many people without any option except a nursing home.

So millions of Americans keep trying to hang in and stay home as long as they can. They’re not poor enough to qualify for Medicaid, but they can’t afford to hire someone privately.

Many fall through what April Abel, a former home health nurse from Roper St. Francis Healthcare in Charleston, described as “the doughnut hole.”

“I feel so bad for them because they don’t have the support system they need,” she said.

She tried fruitlessly for months to find help for Joanne Ganaway, 79 and in poor health, from charities or state programs while she visited her at home. Ganaway had trouble seeing because of a tear in her retina and was often confused about her medications, but the small pension she had earned after working nearly 20 years as a state employee made her ineligible for Medicaid-sponsored home care.

So Ganaway, who rarely leaves her house, relies on friends or family to get to the doctor or the store. She spends most of her day in a chair in the living room. “It has been difficult for me, to be honest,” she said.

Turning to Respite Services

With no hope of steady help, there is little left to offer overstretched wives, husbands, sons, and daughters other than a brief respite. The Biden administration has embraced the idea of respite services under Medicare, including a pilot program for the families of dementia patients that will begin in 2024.

One nonprofit, Respite Care Charleston, provides weekday drop-off sessions for people with dementia for almost four hours a day.

Lee’s wife went for a couple of years, and he still makes use of the center’s support groups, where caregivers talk about the strain of watching over a loved one’s decline.

On any given morning, nearly a dozen people with dementia gather around a table. Two staff members and a few volunteers work with the group as they play word games, banter, bat balls around, or send a small plastic jumping frog across the table.

Their visits cost $50 a session, including lunch, and the organization’s brief hours keep it under the minimum state requirements for licensing.

“We’re not going to turn someone away,” Sara Perry, the group’s executive director, said. “We have some folks who pay nothing.”

The service is a godsend, families say. Parkinson’s disease and a stroke have left Dottie Fulmer’s boyfriend, Martyn Howse, mentally and physically incapacitated, but he enjoys the sessions.

“Respite Care Charleston has been a real key to his keeping going,” she said, “to both of us, quite frankly, continuing to survive.”

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 kind of home care do you need?

After a fall or surgery, some older people will need short-term care at home from a nurse or therapist to help them recover. Medicare, the federal insurance program for those 65 and older, typically pays for this kind of home health care. A nurse can make sure a wound is healing properly, for example, while a physical therapist can help a person get back on their feet after a knee replacement.

But millions of older Americans need assistance over months or years to stay in their homes safely instead of moving to an assisted living facility or nursing home. They may require help getting out of bed, taking a shower, or going to the bathroom; getting to the doctor; shopping for groceries; or making meals. They would need a home aide or personal care assistant, who may not have much, if any, medical training.

How do I find help?

A wide range of services are available, whether it’s light housekeeping or hiring a private-duty nurse. Monica Moreno, senior director of care and support at the Alzheimer’s Association, suggests that you start by making a simple list of the kind of help you or your loved one needs and the number of hours each day or week required.

To identify agencies and services available in your area, Moreno recommends looking through a database of community resources provided jointly by the association and AARP, the nonprofit group representing older Americans, that is searchable by location. A list of agencies and a brief description of what they provide can be found under the category “care at home.” AARP also has a guide to finding a home health aide.

Should I use an agency?

While Medicare certifies and gives star ratings to home health agencies, the businesses that provide home care services are not subject to federal oversight or required to be licensed in every state. But a good agency will run background checks on its workers and give them training and support. If an aide calls in sick or quits, the agency can find a replacement. Some businesses also bond and insure their caregivers.

To choose an agency, Jennifer Battista, chief operating officer for the Home Care Association of America, suggests inviting several of them to your home to conduct an assessment. Ask them how they vet their employees, whether they run criminal background checks, and whether their employees are required to know how to perform CPR or provide first aid. Be sure to ask for references for individual aides and talk to families who have employed them before.

Once you pick an agency, you may want to try a few caregivers before finding the right one. The more information you share about your loved one’s needs, the better the agency will be able to find an aide who’s a good fit. “It’s a lot like matchmaking,” Battista said.

What about finding someone through word-of-mouth?

Many families have success finding a caregiver by asking people they trust for recommendations, said Nicole Jorwic, a lawyer who is the chief of advocacy and campaigns for Caring Across Generations, an advocacy organization. “Cast a wide net, post on private social media, and ask family and friends,” she said, noting that she found caregivers for her grandparents by asking people in her community.

Churches and other religious institutions, local charities, and community organizations may also have suggestions. A primary care doctor or local medical practice may have experience with specific home care agencies or know of individual caregivers. If you decide to hire someone privately, you should be sure to do a thorough background check and talk to families who have employed them before. Family Caregiver Alliance, a California nonprofit group, provides a guide.

Will Medicare cover the cost of an aide?

Many home agencies erroneously say they can’t send a home aide and will tell a doctor’s office or patient that Medicare won’t pay for one. “This is a long-standing problem,” said Judith Stein, executive director of the Center for Medicare Advocacy, a nonprofit legal group.

While it’s true that Medicare doesn’t pay for long-term care, it may pay for an aide as part of a patient’s care plan if that person also qualifies for a home nurse or therapist for a time. Agencies often refuse to provide someone because Medicare pays a lump sum per patient, meaning the agency isn’t paid more for sending an aide in addition to the nurse or therapist. Talk to the doctor about whether an aide is necessary so one can be specified in the care plan presented to the agency.

Medicare patients are getting fewer visits from an aide now than they did some 25 years ago, and the center is now appealing a judge’s dismissal of a lawsuit claiming that Medicare, under the Department of Health and Human Services, discouraged the use of aides for thousands of people. The judge did acknowledge that many people were not getting care.

Will other insurance pay for an aide?

Under Medicaid, the state-federal program for low-income people that provides long-term care, the cost of an aide is often covered as an alternative to a nursing home. But a shortage of workers can make it difficult to find one even if you qualify. Families complain of frequent no-shows, and because wages are low under the program, agencies often have high turnover among workers.

Some private Medicare Advantage plans offer home care as a supplemental benefit, and it’s possible that some help will be covered under a long-term care insurance policy. If you or your loved one is a veteran, it’s worth checking with the Department of Veterans Affairs to see if it will pay for home care.

How much will an aide cost?

If you decide to pay privately, the hourly rates charged by agencies vary widely, and some agencies may not be able to fill a position for just a few hours a week. In San Jose, California, half the agencies charged more than $37 an hour for a home health aide in 2021, according to Genworth, a long-term care insurer. Across the country, agencies are charging roughly $27 an hour with a little more than half of that going to pay their workers.

There are no good estimates for how much people working for themselves may charge. You could save some money because there is no go-between agency taking a cut, but some independent caregivers charge roughly the same as an agency.

How do I report a problem?

If the agency you’re using is licensed by your state, you can check with the government office overseeing it if you run into a problem. You can also file a complaint with various state agencies, including the state health department.

Where else can I get help?

State or local government agencies that focus on aging or nonprofit groups can provide information. You can also try the Eldercare Locator. The Alzheimer’s Association also has some advice for finding caregivers, and it offers a 24-hour help line: 1-800-272-3900.

What about respite care?

Family caregivers should also think about taking advantage of respite care to give themselves a break from time to time. Depending on the circumstances, insurance may cover the cost, and there are local government and community groups that will pay for an aide for a brief period. Churches and other organizations might also provide respite care.

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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This story can be republished for free (details).

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.

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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This story can be republished for free (details).