Our Long-Term Care System Is Killing Americans

Here are 5 steps to reform our nation's approach to care

caring photo of older woman with head on shoulder of younger woman

Getty Images

Nancy LeaMond

En español

Published May 26, 2021

A cottage industry of writers and analysts is now blossoming around THE question of the day: How has the COVID-19 pandemic permanently changed our lives?

Much attention, of course, has focused on jobs and the economy. But we are also beginning a long-overdue conversation on another area that the pandemic exposed as terribly inadequate. That area is long-term care — a critical need that can define the quality of life for any one of us and will be increasingly sought after in the coming years.

The system needs an overhaul. President Biden has launched the conversation by including $400 billion to enhance home- and community-based services (HCBS) in his infrastructure plan. This creates an opportunity for a bipartisan debate and work on a major policy issue that calls out for leadership on both sides of the aisle.

Families in search of long-term care enter a world that is fragmented, confusing, costly, under-regulated and lacking in transparency. Too often, individuals and their loved ones must desperately cobble together a patchwork of ways to get the services they need.

Surveys tell us that people usually do not plan for the cost. Many lack knowledge about long-term care insurance (which may provide only limited protection). Folks who end up in nursing homes often yearn to live in more intimate, less institutional environments. Wherever individuals get care, they depend on low-paid workers with little chance of career advancement.

A national conversation on long-term care should focus on innovations to enhance choice, quality and affordability. It can highlight ways to make care safer and ensure that it is available to all, including underserved population groups who bear the greatest risk of death and disability. Importantly, we should consider ways to strengthen the paid long-term care workforce, while also doing more to support unpaid family caregivers.

The care problem is bigger than COVID-19

The pandemic shows how badly we need this conversation.

Nancy LeaMond

Jared Soares

Nursing homes and other long-term care facilities have accounted for more COVID-19 deaths than any other category — about one-third of all U.S. fatalities, totaling more than 183,000 residents and staff even though less than one percent of Americans live in nursing homes. These numbers are a national disgrace. And they reflect more than the pandemic alone. They are a consequence of deep, structural flaws in our nation's approach to care.

Sadly, reports in the media rarely explore these underlying defects. Left unfixed, they will lead to a personal care crisis for more and more families. With a growing aging population, demographics guarantee it.

Already, over 10,000 Americans turn 65 every day, a group that will represent more than 20 percent of the population in the coming years. According to government data, someone turning 65 today has almost a 70 percent chance of needing long-term care at some point, often for an average of three years. Cases of Alzheimer's, Parkinson's, cancer, heart disease and other chronic health conditions will inevitably increase as more Americans live into their 80s and beyond. Disabilities are significantly more likely among older people — about a quarter of those age 65 to 74 and half of those 75 and older live with a disability, accounting for over 17 million Americans.

Enhanced coverage of home and community-based services (HCBS)

Home is where the heart is, not a rehabilitation facility. An AARP national survey found that more than three-quarters of adults age 50-plus prefer to stay in their homes and communities for as long as possible. However, many people do not understand the challenges they may face in achieving this dream. Costs may include payment to hire aides, as well as significant expenses borne by family caregivers. On average, for the same cost as one person residing in a nursing home, Medicaid can pay for three people receiving HCBS. That gives HCBS the potential to play a much larger role in helping people remain independent, even those with serious health conditions.

The good news is that investment, innovation and adaptation are already at play. States are seeking Medicaid waivers and other options to finance more care in the home. States are also receiving additional temporary enhanced funding for Medicaid HCBS. And forward-thinking medical practices are offering house calls in some locations. This looks like a vast, untapped market, with just 28 percent of older adults having researched community-based services for themselves.
Accessible and affordable care options in urban and rural areas, to fight entrenched health disparities

Everyone should have access to quality care, regardless of income, and the options should be adequately financed. Yet, the pandemic has shown that inequities are pervasive, with the virus wreaking the greatest harm on communities of color. Initial data from nursing homes, for example, shows that COVID-19 death rates have been higher in institutions with larger proportions of African American and Hispanic residents.

Technology and telehealth can help solve part of this problem by conveniently and safely delivering care where the person lives or in their community. To fulfill technology's promise, though, we must ensure it is accessible to everyone and that we have the broadband infrastructure to connect everyone. There is still a long way to go.

After available family and friends have done all they can to provide care, individuals may turn to their savings, tax credits or deductions, where applicable. Costs can be overwhelming, and people need options — a private room in a nursing home can exceed $100,000 a year. Both the public and private sectors can do more. A reinvigorated long-term care insurance market, with strong consumer protections and affordable coverage, can be part of the solution.
A larger cadre of quality, professional workers for our homes and care facilities

A shortage of skilled long-term care workers makes life difficult for individuals and families searching for quality care. To overcome this shortage, we must provide adequate pay and benefits, safe working conditions and career structures that enable advancement.

According to a recent study from the Brookings Institution, health care support, direct care and service workers — mostly women — are paid an average of $13.48 an hour, just above minimum wage in some states. Their work can be extremely demanding. It directly affects individuals’ quality of life, for better or worse. We need more trained, quality workers that families can rely on. Looking beyond the pandemic, this need will only increase.
Support for family caregivers

Helpful family members, friends and neighbors are the backbones of long-term care in America, and they should have greater assistance. AARP and the National Alliance for Caregiving's Caregiving in the U.S. 2020 report reveals that 48 million Americans provide care for adults — and that figure was compiled before the pandemic. These diverse family caregivers cross multiple generations and every demographic. While their efforts may yield a sense of purpose and accomplishment, the dedication can come with a personal cost in the form of stress, financial sacrifice and even sickness.

One in 4 family caregivers reports physical decline from caregiving, and 1 in 3 reports extreme mental stress. Family caregivers who try to balance their duties with paying jobs run into schedule conflicts that over time can undermine their careers and financial security. Their medical and other care responsibilities are increasing, meanwhile, as more individuals get serious health care treatments at home, including dialysis and chemotherapy. In addition, family caregivers spend, on average, nearly $7,000 in out-of-pocket costs annually, or nearly 20 percent of their income.

For all these reasons, we support the bipartisan Credit for Caring Act, reintroduced last week by Senators Ernst (R-IA), Bennet (D-CO), Capito (R-WV), Warren (D-MA), and Rep. Sánchez (D-CA), which would create a family caregiver tax credit to provide some financial relief. Services that can lighten caregivers’ load, including respite care that gives them a needed break, should also be more available.
Better options for congregate living

People need more choices that optimize safety and quality of life — whether they live in nursing homes, assisted living, other residential care settings, multigenerational housing or innovative new models. Homelike, smaller settings, such as Green Houses, may be part of the answer.

Whatever the choice, adequate staffing must be in place to ensure quality care and personal safety. Access to social connections helps make life worth living. As the pandemic continues to remind us, people need ways to combat isolation, such as technologies to keep in touch with family and friends.

Society needs to stay ahead of this wave. Yet, a trifecta of denial, ignorance and procrastination has long stood in the way of solutions.

The topic is not easy to think about and misunderstandings abound. Almost half of adults age 40-plus (47 percent) incorrectly believe Medicare covers long-term care services, AARP research shows. People are actually more likely to prepare for their own death than for a life that requires long-term care. While a majority of adults over age 40 have prepared wills, set aside money for funerals and discussed end-of-life issues with family members, fewer than 3 in 10 have planned for their future care needs.

This reluctance to plan has withstood even COVID-19. Polling shows that just 20 percent of adults age 40-plus have been prompted by the pandemic to consider the long-term care needs of older relatives; even more disappointing, only 15 percent have thought about it for themselves.

People need more information on care options and payment sources, and this education should begin earlier in life. At AARP, we want to raise consumer awareness and put a spotlight on these concerns. The public is always welcome to use our AARP state-specific resources to find services and supports as they deal with the pandemic. More broadly, my hope is that a better-informed public will spark innovations in the marketplace and push long-term care reform higher on the political agenda.

Some positive developments – but not enough

More people are talking about the system. Discussion about the future of long-term care has sparked pieces in The New York Times, Washington Post, Kaiser Health News and other outlets in recent weeks. The Administration's $400 billion proposal is an important step in the right direction because services that promote independence, the paid workforce who provides them and unpaid family caregivers who are the backbone of our care system are a critical part of our society's infrastructure. But we urge greater engagement by both the private and public sectors in building an affordable system that meets people's real needs and preferences.

The pandemic has sped up the adoption of telehealth, which may one day help to improve health outcomes and access to care for many people, including underserved women and members of black and brown communities. Digital health records and innovations to promote safety and wellness continue to reach the marketplace.

Congress last year made the medical expense deduction permanent, an important gain for people with acute and chronic medical conditions. Lawmakers also extended the bipartisan Fischer Tax Credit for employers who offer at least two weeks of paid leave to workers who earn less than $72,000, a move that will help family caregivers. More than a dozen states have moved on their own to provide paid leave.

In addition, some employers are beginning to support workers who provide care at home with benefits like flex-time and health counseling. In one survey, 75 percent of corporate benefit managers agreed that “being a more caregiving-friendly workplace would attract and retain talent.”

Less tangibly, the pandemic has dramatized the value of frontline and essential-care workers, a generally low-paid group that soldiers on for all of our benefit.

5 steps toward a better system

Despite these positive ripples, the real job of reforming long-term care remains before us.

The national debate should aim for a holistic system where supports and services are integrated with affordable medical treatment. Services should be delivered in settings that enable adults of all backgrounds to live the best lives possible. Those able to remain in their own homes should have that option and the support needed to do so. Residents of nursing homes should be assured of safety, personal dignity and quality care.

In the coming weeks and months, I will continue to highlight the urgent need for a national effort to improve care, aimed at focusing public attention on the following priorities:

How to achieve lasting long-term care reform

Enhanced coverage of home and community-based services (HCBS)

Home is where the heart is, not a rehabilitation facility. An AARP national survey found that more than three-quarters of adults age 50-plus prefer to stay in their homes and communities for as long as possible. However, many people do not understand the challenges they may face in achieving this dream. Costs may include payment to hire aides, as well as significant expenses borne by family caregivers. On average, for the same cost as one person residing in a nursing home, Medicaid can pay for three people receiving HCBS. That gives HCBS the potential to play a much larger role in helping people remain independent, even those with serious health conditions.

The good news is that investment, innovation and adaptation are already at play. States are seeking Medicaid waivers and other options to finance more care in the home. States are also receiving additional temporary enhanced funding for Medicaid HCBS. And forward-thinking medical practices are offering house calls in some locations. This looks like a vast, untapped market, with just 28 percent of older adults having researched community-based services for themselves.
Accessible and affordable care options in urban and rural areas, to fight entrenched health disparities

Everyone should have access to quality care, regardless of income, and the options should be adequately financed. Yet, the pandemic has shown that inequities are pervasive, with the virus wreaking the greatest harm on communities of color. Initial data from nursing homes, for example, shows that COVID-19 death rates have been higher in institutions with larger proportions of African American and Hispanic residents.

Technology and telehealth can help solve part of this problem by conveniently and safely delivering care where the person lives or in their community. To fulfill technology's promise, though, we must ensure it is accessible to everyone and that we have the broadband infrastructure to connect everyone. There is still a long way to go.

After available family and friends have done all they can to provide care, individuals may turn to their savings, tax credits or deductions, where applicable. Costs can be overwhelming, and people need options — a private room in a nursing home can exceed $100,000 a year. Both the public and private sectors can do more. A reinvigorated long-term care insurance market, with strong consumer protections and affordable coverage, can be part of the solution.
A larger cadre of quality, professional workers for our homes and care facilities

A shortage of skilled long-term care workers makes life difficult for individuals and families searching for quality care. To overcome this shortage, we must provide adequate pay and benefits, safe working conditions and career structures that enable advancement.

According to a recent study from the Brookings Institution, health care support, direct care and service workers — mostly women — are paid an average of $13.48 an hour, just above minimum wage in some states. Their work can be extremely demanding. It directly affects individuals’ quality of life, for better or worse. We need more trained, quality workers that families can rely on. Looking beyond the pandemic, this need will only increase.
Support for family caregivers

Helpful family members, friends and neighbors are the backbones of long-term care in America, and they should have greater assistance. AARP and the National Alliance for Caregiving's Caregiving in the U.S. 2020 report reveals that 48 million Americans provide care for adults — and that figure was compiled before the pandemic. These diverse family caregivers cross multiple generations and every demographic. While their efforts may yield a sense of purpose and accomplishment, the dedication can come with a personal cost in the form of stress, financial sacrifice and even sickness.

One in 4 family caregivers reports physical decline from caregiving, and 1 in 3 reports extreme mental stress. Family caregivers who try to balance their duties with paying jobs run into schedule conflicts that over time can undermine their careers and financial security. Their medical and other care responsibilities are increasing, meanwhile, as more individuals get serious health care treatments at home, including dialysis and chemotherapy. In addition, family caregivers spend, on average, nearly $7,000 in out-of-pocket costs annually, or nearly 20 percent of their income.

For all these reasons, we support the bipartisan Credit for Caring Act, reintroduced last week by Senators Ernst (R-IA), Bennet (D-CO), Capito (R-WV), Warren (D-MA), and Rep. Sánchez (D-CA), which would create a family caregiver tax credit to provide some financial relief. Services that can lighten caregivers’ load, including respite care that gives them a needed break, should also be more available.
Better options for congregate living

People need more choices that optimize safety and quality of life — whether they live in nursing homes, assisted living, other residential care settings, multigenerational housing or innovative new models. Homelike, smaller settings, such as Green Houses, may be part of the answer.

Whatever the choice, adequate staffing must be in place to ensure quality care and personal safety. Access to social connections helps make life worth living. As the pandemic continues to remind us, people need ways to combat isolation, such as technologies to keep in touch with family and friends.

No one said this would be easy. Despite all the anguish and heartbreak, policymakers still turn their heads from the nursing home problem. Even modest remedies may come with a stiff price tag. Issues of quality, funding, regulation, accountability, workforce pay and training and transparency all belong on the table.

But we have to start somewhere. (Note to all you pundits and conference planners out there: This area cries out for fresh ideas.)

The first challenge is to improve the quality of care and quality of life in nursing homes. The restoration of public trust will follow when facilities do a good job consistently. They must apply lessons from the pandemic to ensure greater health, safety and resident well-being in the future. Providing folks with more options, including HCBS, helps minimize the number of people needing to enter nursing homes. More basically, we need a national commitment to re-envision how an advanced society should provide care in the 21st century. All stakeholders have a role to play: business, labor, consumers, advocates, government, nursing homes, hospitals, assisted living and home and community-based service providers, to name a few.

Yes, it's hard to get things done in Washington these days, even little things. Fixing long-term care won't be easy.

But let's not forget that as a nation, we've done big things before. Once upon a time, older adults without money lived out their final days in a miserable county poorhouse. People said there was nothing to be done. Then America created Social Security, providing an entirely new foundation of financial well-being. Before the 1960s, the idea that government should offer health insurance to low-income or older individuals was a bridge too far in Washington. Then we launched Medicaid and Medicare, helping millions and altering that view forever. Why not aim big on long-term care? After a lifetime of paying taxes and contributing to society, older adults deserve as much independence, security and dignity as possible. Quality care should be within reach of any person who needs it, whatever their age. The goal should be to use the momentum spurred by COVID-19 to create a humane, sustainable system of care that works for everyone. We can begin by recognizing this long-neglected problem and offering serious ideas to address it. It's long past time to engage in this national debate.

Let's get started.

Nancy LeaMond is AARP's chief advocacy and engagement officer.

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