Policy relief for family caregivers seems stalled out. But there are signs of change

In early December, Andy Kim walked onto the Senate floor to give his first solo speech. By tradition, this is a formal introduction, the chance for a new congressperson to announce what he stands for.

Kim, a Democrat from New Jersey, told the story of his father's diagnosis of Alzheimer's disease just a few weeks prior. After the appointment, Kim said he sat in his car in shock, replaying the words of the doctor who warned him that his next year was going to be hell.

Kim said the costs of care have already been "catastrophic" for his family. "Why is it so hard to provide care in this country?" he asked. "Why is providing care so insanely complicated?"

The takeaway: Family caregiving is so difficult that even a U.S. senator is overwhelmed.

And even a senator doesn't know how to fix it.

There's consensus that something needs to change. Kim chose to focus this high-profile speech on family caregiving because it resonates: An estimated 63 million Americans currently care for elderly or chronically ill adults, according to a survey from AARP and the National Alliance for Caregiving.

And 79% of Republicans and 89% of Democrats agree that the government needs to do more to help people caring for their family members. In 2024, both presidential candidates promised to do something about it.

Since then, though, nothing much has happened at the national level. But a shift is underway, say policy-watchers and advocates for caregivers. The COVID-19 pandemic made family caregiving more visible and changed its image. Since then, care is increasingly perceived as a labor and economic issue — a social concern rather than just a family problem.

A broad coalition called Care Can't Wait brings together labor, aging and disability interests. It is pushing to put family caregiving on the national agenda by lobbying policymakers, organizing events, and raising awareness.

In the last few years, state governments have begun implementing policies to help caregivers, such as tax breaks, an innovative public long-term care insurance program, and new job protections for working caregivers. State-level policy experiments like these often build momentum for national-level change, say policy experts.

"There's been huge momentum in the last five years that I have not seen in the last 20," says Alison Barkoff, professor of health law at George Washington University and former assistant secretary of aging at the Department of Health and Human Services. "I feel optimism that this is setting the stage for something big."

Growing needs and a patchwork of support

The number of family caregivers for adults has already doubled since 2014. And older people are now the nation's fastest-growing age group.

Half of them will eventually need daily help with even simple tasks like cooking, getting dressed and keeping house. Some will need much more extensive care.

That task will mostly fall to family and friends, because most people cannot afford to pay someone else to do it. Forty hours a week of paid caregiving help runs about $71,000 a year. The average annual nursing home bill is $110,000. Medicare covers almost none of it.

Family caregivers spend an average of $7,242 in out-of-pocket expenses every year, an AARP survey found in 2021. About a third dip into retirement savings or take on credit card debt to cover expenses like assisted living facility fees, home modifications, medical bills or adult day care.

"The cost of long-term care is exponentially higher than things like childcare that get far more attention in national media," says Nicole Jorwic, chief program officer at Caring Across Generations, an advocacy group focused on care.

Currently, there's no nationwide system for family caregivers to find out what help might be available. Eligibility rules vary widely, and caregiving programs or assistance are administered by a profusion of entities, from state and local governments to the Veterans Administration and nonprofits. The programs do not connect with one another, so caregivers must research each separately.

And national policymakers have not acted to address the cash crunch or knit up the isolated sources of support into an actual safety net.

The most consequential caregiving-related federal action in 2025 was to trim nearly $1 trillion from the Medicaid budget over the next 10 years, which experts predict will translate into cuts for some of the roughly 4.5 million family caregivers paid through the program. "Even the patchwork that did exist is getting shredded," says Jorwic.

The states step in

The picture is more promising at the state level. Across the nation, lawmakers are trying out policies to defray costs or provide new forms of help. These experiments are rapidly spreading.

In 2023, Oklahoma and Nebraska were the first states to adopt tax credits for family caregivers. Since then, Georgia, Missouri, New Jersey, North Dakota and South Carolina have followed suit. Another dozen or so states are discussing similar bills, says Megan O'Reilly, vice president of health and family at AARP, which advocates for these laws. The credits reimburse family caregivers for expenses like home modifications or paid help, usually capped at around $2,000 to $3,000 a year.

Some states also subsidize respite care in the form of short-term paid caregiving or institutional care, so that family caregivers can take a few days off or deal with other obligations.

About 60% of family caregivers also work; many states are modifying employment laws to help them manage both responsibilities. The federal Family and Medical Leave Act, which requires certain employers to provide up to 12 weeks of unpaid leave, covers less than half of all American employees.

In the last few years, 13 states and Washington, D.C., passed laws requiring employers to offer up to 12 weeks of paid family leave. Similar programs in Maine, Delaware and Minnesota are rolling out now. In these programs, payroll taxes cover the costs, much like unemployment insurance. In ten other states, including Texas and Virginia, paid leave is optional, and employers can add the benefit by buying commercial insurance.

In other states, laws that permit caregivers to take paid or unpaid leave now include in-laws, domestic partners, or even close friends. Other states, counties and cities like Delaware, Florida's Monroe County, and Battle Creek, Michigan created rules to explicitly protect against workplace discrimination, so workers can't be fired or demoted because of their caregiving responsibilities.

The most ambitious state caregiver support program to date rolls out in the next few days. In 2023, Washington workers started paying into a fund for universal long-term care insurance. In 2026, qualified workers will be able to tap into this pool to pay for in-home care, home modifications, and even meals and transportation, up to a lifetime limit of $36,000. Seven other states are considering similar programs, including big ones like California and New York.

Altogether, one or more of these policies apply to the majority of the nation's caregivers, covering 25 states and 31 cities.

The care movement to come

These new laws add more patches to the patchwork. At the federal level, administrative tweaks to Medicaid rules in the last few years have also made it easier for certain caregivers to get training and help. But a truly comprehensive caregiver support system will require vision, big-ticket policies and big budgets, say the policy experts and advocates who monitor long-term care.

For example, in 2021, Reps. Tom Suozzi, D-N.Y., and John Moolenaar, R-Mich., introduced a bill to create a national long-term care insurance program to cover catastrophic costs of care. Payments would kick in only after the family covers the bills for at least a year. The idea is not only to help families, but to reinvigorate the long-term care insurance market, which currently covers only about 5% of the cost of care nationwide. This bill is supported by the National Alliance for Caregiving, among others. It was reintroduced in 2025.

The Care Can't Wait coalition's goals include a comprehensive paid family and medical leave law that would cover all working caregivers.

The coalition's biggest ticket item: Expanding Medicare to pay for long-term care, an idea that's been repeatedly proposed ever since the law was written in 1965. Kamala Harris' presidential campaign floated a modest version of this plan, with an estimated pricetag of $40 billion a year.

Ambitious national efforts like these might not currently be realistic, advocates concede. But the sheer number of struggling family caregivers and the value of their work — estimated at $600 billion a year in 2021 — will force change, especially as older and disabled populations continue to grow.

"As a society, we are at a pivot point," says Jorwic. "Economic forces are going to push solutions." The ultimate aim is to foster a new care movement — what Kim called for in his speech.

There are already subtle changes, says O'Reilly. When she and other AARP representatives meet with legislators, they no longer need to explain what family caregiving is and why it matters. Most often, someone on the staff has personal experience with it themselves.

"People are connecting with the issue, and sharing their own stories," she says. "That's a transformation from where we started this work."

Kat McGowan is a freelance writer in California focused on caregiving.