Support for Family Caregiving Gains Momentum

Caregiving has become an essential public health issue as the U.S. population ages and chronic disease prevalence increases. Family caregivers provide indispensable support that allows individuals to remain in their homes and communities, but their contributions often go unrecognized — and unpaid.

With family caregiving on the rise, there is growing recognition among voters, policymakers, and employers about the significant challenges posed by caregiving and the need for solutions that address the needs of caregivers, who often juggle careers, children, and aging parents at great personal cost.

Two recently introduced bills would make it easier for family caregivers to save for retirement. President-elect Trump also said that he would back a tax credit for caregivers that is mentioned in the 2024 Republican Party platform. And this past September, the Department of Health and Human Services released a progress report on federal implementation of a national strategy to help family caregivers.

Caregiver Support Fills $600B Gap in U.S. Health Care System

Terms like “complex,” “inefficient,” “unfair,” and “broken” are often used to describe the United States health care system. The U.S. spends more per capita on health care than other developed nations; despite this, higher spending often does not achieve better outcomes.

The long-term care gap in this country’s health care system is one of its most glaring shortcomings. The U.S. doesn’t have a national program to cover long-term care costs, leaving many families to shoulder the burden — and expenses — associated with caring for parents, spouses, special needs children, and other loved ones who need assistance with activities of daily living such as preparing food, paying bills, and bathing, as well as with arranging medical care and medications.

These “free” caregiver services come at a high cost. According to an AARP report, family caregivers contributed 36 billion hours of unpaid care per year in 2021 valued at $600 billion.

The $600 billion figure totals more than all out-of-pocket spending on U.S. health care in 2021 and is a $130 billion increase in unpaid contributions from family members since AARP released a similar report in 2019.

AARP research also shows that one in five Americans — more than 53 million adult Americans — are now unpaid family caregivers. That number increased by 9.5 million adults from 2015 to 2020 and is now likely even higher due to an aging population. AARP projects that, by 2034, adults aged 65 and older, who have higher risks of chronic diseases like dementia, arthritis, heart disease, diabetes, and cancer, will outnumber children younger than 18 for the first time.

Caregivers, on average, spend more than $7,200 per year out-of-pocket and 26 hours per week to care for loved ones. Many also face the dual demands of employment and caregiving, which often includes simultaneously caring for growing children and aging parents, leading to the term “sandwich generation” to describe this double duty cohort of 35- to 64-year-old Americans.

Some family caregivers provide an amount of care that is the equivalent of a part-time or a full-time job. Others are forced to step away from work altogether to keep up with caregiving, limiting their career growth, job opportunities, and retirement savings. Those who balance work and family responsibilities typically report significantly lower physical and mental health and higher rates of absenteeism at their jobs.

Women are still disproportionately likely to provide unpaid care while working full time, although more working men are becoming caregivers. Millennials have surpassed Generation X to become the largest segment of the caregiving population that also works full time.

Caregivers of all genders, ages, and races typically fall within lower wage brackets. More than one-third of caregivers earn less than $50,000 per year. The recent uptick in inflation and reduced savings rates of Americans is further straining caregivers financially.

Voters, Politicians, and Organizations Back More Caregiver Resources

Demographic and economic trends are creating a situation for family caregivers that is unsustainable as working-age Americans are increasingly forced to choose between their own well-being and the well-being of loved ones.

However, more support could be on the way for those whose assistance is vital to tens of millions of older adults, special needs children, and other care recipients.

The National Strategy to Support Family Caregivers, a comprehensive plan launched in 2022, outlines hundreds of specific actions that federal agencies will take to address the physical, emotional, and financial needs of family caregivers. This past September, the Department of Health and Human Services (HHS) released a progress report stating that nearly all these actions have been completed or are in development.

The National Strategy stems from the RAISE Family Caregivers Act, legislation passed in 2018 that requires HHS to develop a national strategy to support family caregivers.

This top-down approach has bottom-up, bipartisan support among voters, polling shows. A poll released in June 2024 found that 86 percent of voters, including 92 percent of Democrats and 82 percent of Republicans, want policymakers to support caregiving and make it more affordable. More than 80 percent of respondents said that they supported paid family leave, caregiver tax credits, and employer incentives for caregivers.

Policymakers are paying attention. On the campaign trail, Donald Trump said that he supports a tax credit for family caregivers. His vice president, J.D. Vance, has said that federal child care assistance measures should also support family caregivers, and the 2024 Republican Party Platform mentions supporting “unpaid Family Caregivers through Tax Credits and reduced red tape” in addition to shifting “resources back to at-home Senior Care.”

Vice President Kamala Harris appealed directly to the sandwich generation during her presidential campaign when she unveiled a proposal that Medicare should cover home health care. The Biden-Harris Administration considers support for family caregivers to be part of a broader strategy to reduce costs to public health programs.

Trump has yet to provide details about his proposed tax credit, but legislation introduced earlier this year, the Credit for Caring Act, would give eligible working family caregivers up to a $5,000 credit to offset the costs of adult day services, home aides, assistive technology, transportation, and other needs.

Two additional bipartisan bills — the Improving Retirement Security for Family Caregivers Act and the Catching Up Family Caregivers Act — were introduced in September.

The former would eliminate the income cap on Roth IRA contributions and allow family caregivers to contribute up to $7,000 annually toward their retirement savings even if their income falls below that threshold, while the latter would allow family caregivers to make catch-up contributions to employer-sponsored retirement plans, an option typically reserved for those older than 50.

On the state level, a number of states have programs that pay family caregivers, offer paid leave, and provide additional types of support. Some states also work with nonstate organizations like AARP to support caregivers.

To learn more about federal and state programs that cover family caregivers, talk to a local elder law attorney.