The vast majority of Americans want to age in their home and community, spending their twilight years in a familiar and comfortable setting. But the choice is not always their own.
The US long-term care system — such as it is — is broken. Hundreds of thousands of Americans are on waiting lists for home-based care. More than 40 million people report that they have cared for a loved one over 50 without any pay in the last year. The United States ranks near the bottom of developed economies in the number of older adults who receive long-term care at home. Meanwhile, America’s nursing homes are staffed by overwhelmed and underpaid workers, and for-profit takeovers of those facilities have led to worse care for patients.
Covid-19 has made this long-term care crisis impossible to ignore. More than 130,000 nursing home residents have died in the pandemic, accounting for nearly one in four US deaths. Residents of large institutions died at higher rates than those who live in the community.
In America, aging people who need care — in a nursing facility or at home — either must be wealthy enough to pay for it themselves or must deplete their income and assets enough that they qualify for Medicaid. Almost by accident, the health insurance program for low-income Americans has become the main payer for nursing home and home-based care. Experts describe long-term care in the US with a sense of disbelief.
“If you were starting from scratch, you would never design a system this way,” David Grabowski, a Harvard professor who studies the economics of long-term care, told me.
Tricia Neuman, who studies long-term care at the Kaiser Family Foundation, put it even more baldly: “We do not have a system of long-term care in our country.”
America has been struggling for decades to figure out a balance between having people age in long-term care facilities and age at home. President Joe Biden has proposed a massive infusion of federal spending on home-based care. Experts say it should start to address these structural problems — but it’s only a start.
The story of America’s long-term care failure begins in earnest in the 1950s.
Before then, and really for all of human history, if you were lucky enough to age into your elder years, you probably aged at home. Nursing homes didn’t exist. But that also meant you needed somebody to take care of you — and that responsibility would often fall on a spouse or children or another family member. Women in particular often shouldered these duties.
Things started to change in the middle of the 20th century. More women entered the workforce during and after World War II. Americans became less likely to live as adults in the place where they grew up, with more people moving to other parts of the country to seek employment and settle down. Fewer family members were around to provide unpaid care, and so proto-nursing homes — alms houses, board-and-care homes — first appeared.
Then President Lyndon B. Johnson signed Medicaid into law in 1965. One of the benefits covered by the new program for America’s poor was nursing home care — but at first, there was no coverage for home and community care.
In the following years, and accelerating in the 1980s, more older people and people with disabilities were moved into institutional settings. The nursing home industry was born, and it boomed. Today, about 1.2 million Americans live in a nursing home.
Ideally, people would live in those facilities by choice. The most important principle for long-term care policy is personal agency: The patient and their family should have a right to determine what kind of care they receive.
But America has failed to live up to that ideal. More than three in four people over the age of 50 said in a 2018 AARP survey they want to stay in their community as long they can. But fewer than half thought that would be possible — and many of them may end up being right, as the long waiting lists for home- and community-based services attest. As of February 2020, more than 820,000 Americans were stuck on their state Medicaid program’s waiting list for home- and community-based services, according to the Kaiser Family Foundation, and their average wait time is longer than three years.
Even for those lucky enough to be able to afford in-home care, the US long-term care system hasn’t done them any favors. Virginia Veliz, a 70-year-old in Santa Clarita, California, has been coordinating care for her 90-year-old mother, who has Lewy body dementia and Parkison’s disease, for the past five years.
“You really have to treat it like a job,” she said.
Veliz lives with very specific fears about what would happen if her mom moved into a nursing home. Her mother is prone to urinary tract infections; they’ve put her in the hospital multiple times in the past decade. During a recent hospital stay, Veliz came to the room to find her mom, who has hallucinations because of her dementia, hanging over the side of her bed and “traumatized” by the isolation, she said.
With those experiences in her mind, Veliz cannot bear the idea of sending her mom to a nursing home, where she might be alone for hours at a time. Instead, she and her siblings are paying for home health aides five days a week, with physical therapists and physicians stopping by regularly. She knows they are lucky they can afford it, but, in the same breath, she jokes that they need a family therapist to navigate the stress of organizing their mom’s care.
“She just will not get the attention in a convalescent setting, because they don’t have the manpower,” Veliz told me. “What am I afraid of? I’m afraid of them not taking care of her. She’s very fragile.”
There are some people for whom institutional care makes sense — those with severe cognitive decline, for example. Others might simply prefer to live in a nursing home with other people instead of living alone at home.
But the idea is that it should be the patient’s choice. The US still has not found a way to put that decision entirely in the patient’s hands.
“There is a huge unmet need,” Neuman said.
The crisis has been decades in the making, but the Covid-19 pandemic has made it impossible to ignore.
“The pandemic was an accelerant and gave momentum about how to move people out of facilities,” Neuman said. “You had families going to nursing homes urgently to get their parent or grandparent out, even at a great cost personally or financially.”
Gene Dorio, a California doctor who cares for Virginia Veliz’s mother, says he lost three patients to the coronavirus in the past year. As somebody who makes house calls to seniors and cares for patients in nursing homes, he did not seem surprised about the loss of life experienced in the latter.
“They ended up being at the wrong place at the wrong time,” he said. “The long-term care setting … some of these places are abominations.”
Finding a better equilibrium between community-based care and nursing homes will require money. Biden, as part of his American Jobs Plan, has proposed a $400 billion investment over 10 years into home- and community-based services. Many of the details would need to be determined when legislation is drafted in Congress, but the size of the investment alone has caught the attention of experts who work on long-term care issues.
Experts agree that resources — read: money — are the biggest challenge for long-term care. The challenges are so great that they aren’t sure $400 billion is “enough.”
“If the question is, ‘Is that enough?’, I don’t know,” Grabowski said. “Hopefully that will buy you a lot of community-based care.”
Neuman said more or less the same thing.
“It’s remarkable and unusual to see such a huge proposed investment,” she said. “How far this would go, I don’t know. But it is a significant investment.”
The money would presumably be spent, in large part, on home health workers. But there is a tension created by putting a hard number on that investment.
Experts say long-term care workers are underpaid for their difficult work (the average pay can be as little as $10 a day), so better compensation could lead to more people entering the field and staying in the work once they’ve started. Recent research showing some nursing homes see roughly 100 percent turnover in a given year suggests that retention is a serious problem in long-term care.
“You’re not going to get very far in fixing this without money. You need good caregivers. You need to pay them,” Grabowski said. “How do we ensure going forward that this is basically a better job, that starts with better pay and benefits?”
But the more you pay for one worker, the fewer workers you can hire. It’s simple economics.
That doesn’t mean the Biden plan couldn’t still do a lot of good. A single staffer could potentially help a lot of people.
But still: Virginia’s family has hired caregivers who stay with their mother eight hours per day, every weekday. That’s one salaried position for a single patient — and, eventually, with enough of those, even $400 billion could eventually run out.
So the Biden plan isn’t a cure to the ills that afflict America’s long-term care, even if it is “a step in the right direction,” as Grabowski told me.
The pressure on the US’s broken long-term care system will keep growing. The number of Americans over 65 is projected to nearly double by 2060. Though Americans are working later in their lives, the number of people living in nursing homes could still reach 2 million, from the current 1.2 million, as soon as 2030.
That structural problem may eventually require structural reforms. Right now, the US doesn’t provide any government assistance to middle-income people who need long-term care. You are either wealthy enough to pay for your own care or you have to spend enough of your own money on long-term services that you become poor enough to qualify for Medicaid, and then that program takes responsibility for your bills.
“There still could be holes here for middle-income families,” Grabowski said, which he called “the forgotten middle.”
“There’s not a menu of services for this group,” he said. “That still isn’t here in this plan.”
There have been previous proposals to address that problem. The Affordable Care Act initially included what was called the CLASS Act, which would have created a voluntary public insurance program to cover long-term care. But the Obama administration quickly decided it would be too expensive and scrapped the program in 2011 before it ever got off the ground.
Prioritizing home-based care appears to be the preferred solution for both patients and policymakers. But it will cost money. The Netherlands, Norway, and Sweden are considered global leaders in providing community-based services, but they also spend a substantially higher share of their GDPs on long-term care (around 3 percent) than the US (0.5 percent).
On the other hand, the United States spends far more on other kinds of medical care than any other country. As Grabowski wrote in a recent Nature column, just 5 percent of that money is currently being spent on long-term care.
“Dollars could be taken from general health care spending and reallocated to [home and community-based services],” he argued. “This increased spending on HCBS would not only benefit the care recipients but also their family members, who often must take time away from their jobs and risk their own health to provide this care.”
And the choice is not binary between home-based care and nursing homes. The Netherlands in particular has experimented with small group homes, with much success. There is a similar model in the US, called Green House, a loose collective of homes with 10 to 12 beds that house seniors and are served by a small team of nurses.
Researchers have found that the residents of these small-group nursing homes were significantly less likely to contract Covid-19 or die of it compared to people who lived in larger institutions. The authors, from the University of North Carolina, concluded that small homes were “a promising model of care” as nursing homes are “reinvented” post Covid-19.
It’s hard to measure specific outcomes between aging in the community and aging in a nursing home. Tamara Konetzka, a University of Chicago professor, pointed out in a 2014 article that nobody was really sure which was “better” for patients from a health perspective, or which was more cost-effective.
But patient satisfaction and preference appears solidly on the side of aging at home. Rob Waters also covered Green House extensively in a recent issue of Health Affairs and clearly saw promise in the model. But he also highlighted how far it has to go: Right now, less than 1 percent of US nursing home residents live in a Green House.
“We just have a lot of ground to make up,” Grabowski said. “People want them. That’s where we should be directing services.”
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