Unpaid Caregiving Takes a Toll on Retirement Security

Published in RINewsToday on August 10, 2026

Unpaid family caregiving is often viewed as a labor of love. But a new national study shows that caring for a loved one can also come with a significant financial price — one that may well follow caregivers right into their retirement years.

On July 22, the Washington, D.C.-based Employee Benefit Research Institute (EBRI), a nonprofit, nonpartisan research organization that studies employee benefits, released its 42-page report, “Caregivers and Retirement: Findings From the 2026 Retirement Confidence Survey.” The report examines how unpaid caregiving affects financial security, employment, health and retirement planning.

Not surprisingly, the findings paint a very troubling picture. Caregivers are more likely than non-caregivers to report lower financial assets, debt problems, poorer health and less confidence about having enough money to live comfortably throughout retirement.

The report is part of a broader caregiving project being developed by EBRI and Greenwald Research. The goal is to provide employers with educational resources and strategies to help employee caregivers better prepare for retirement while managing the all-consuming demands of caring for a family member.

A Growing Retirement Security Issue

The 2026 Retirement Confidence Survey, now in its 36th year, found that nearly three in 10 Americans age 25 and older are unpaid caregivers.

For purposes of the study, caregivers were defined as people who provided unpaid care for an adult or child during the previous 12 months in a non-institutional setting and helped the care recipient with at least one activity of daily living or instrumental activity of daily living.

The findings were discussed during a July 22 EBRI and Greenwald Research webinar featuring Craig Copeland, EBRI’s director of wealth benefits research; Lisa Greenwald, CEO of Greenwald Research; Kerry Sette of Voya Financial; and Cynthia Hutchins of Bank of America Merrill Lynch.

Throughout the discussion, the message was quite clear: caregiving is not simply a family or health issue. It must also be viewed as a retirement security issue.

“Caregiving is often discussed as a family, health or workplace issue, but this research shows it is also an important retirement security issue,” Copeland and Greenwald said in announcing the report.

“Caregivers are doing many of the same planning activities as non-caregivers, but they are more likely to face debt, lower assets, mental health strain and lower confidence about their long-term financial future,” they noted.

The 2026 report builds on an earlier 2023 EBRI/Greenwald Research study that also examined caregivers. Comparing the two surveys, Copeland said caregivers continue to fall behind their non-caregiving counterparts.

Taking a Look at the Key Findings

Caregiving can take a toll on health. Only 36% of caregivers said their health was excellent or very good, compared with 45% of non-caregivers. Caregivers were also less likely to have household incomes of $75,000 or more — 53%, compared with 62% of non-caregivers. Women represented 61% of caregivers, compared with 47% of non-caregivers. 

Caregivers have fewer financial resources to build wealth. Thirty-four percent of caregivers reported having less than $10,000 in savings and investments, compared with 25% of non-caregivers. Debt was also more likely to be a problem: 69% of caregivers said debt was a problem, compared with 57% of non-caregivers.

Caregiving can hit the family wallet. Thirty-four percent of caregiving workers and 20% of caregiving retirees said they provide financial support to the person they care for. In addition, 20% of caregiving workers and 15% of caregiving retirees said they had taken on new or additional debt as a result of caregiving.

The emotional toll is substantial. Sixty-four percent of working caregivers and 52% of caregiving retirees said caregiving had negatively affected their mental health. Among working caregivers, the financial tasks most affected were saving for emergencies (56%) and working the hours they wanted or needed to work (54%).

The financial pressures of caregiving can make it harder for people to prepare for their own futures. Caregivers in both the lower- and upper-income groups were more likely than non-caregivers with similar incomes to lack confidence that they would have enough money to live comfortably throughout retirement.

Among households earning less than $35,000, 75% of caregivers said they were not confident they would have enough money for retirement, compared with 55% of non-caregivers. Among households earning $75,000 or more, 32% of caregivers lacked confidence, compared with 23% of non-caregivers.

Caregivers were also more likely to worry about the impact of an economic recession, rising housing costs, and having to provide care for a loved one with a health condition or disability.

When Caregiving Changes Retirement Plans

For some caregivers, the demands of providing care can even change when they leave the workforce.

The survey found that caregiving retirees were more likely than non-caregiving retirees to have retired earlier than planned. Among those who retired earlier than expected, caregivers were more likely to say they did so because they had to care for a spouse or another family member.

Caregiving retirees were also more likely to describe their current retirement lifestyle as fair rather than excellent. They were more likely to say their retirement lifestyle was not what they had envisioned and that several retirement expenses were higher than expected.

Higher-income caregivers also lagged behind non-caregivers with similar incomes in completing several important retirement-planning tasks, including calculating how much they needed to save, saving for retirement, planning for emergency expenses and estimating future health care costs.

The report points to a number of ways employers can help working caregivers, including flexible scheduling, remote-work opportunities, caregiver resources, education and benefits designed to reduce some of the financial pressures associated with caregiving.

Lisa Greenwald, CEO of Greenwald Research, says caregiving creates financial, health and social-emotional pressures at different stages of life — while people are working, preparing for retirement and after they retire.

For employers, she says, recognizing these challenges can help them provide the flexibility and support caregivers need to remain productive at work while continuing to save for retirement.

Having Their Say…

Washington insider Dan Adcock, director of government relations and policy for the National Committee to Preserve Social Security and Medicare, agrees with the report’s findings about the financial and personal pressures facing caregivers.

Unless unpaid family caregivers receive greater support through respite care or paid Home- and Community-Based Services, Adcock says, caregiving responsibilities can take a toll on their physical and emotional health.

He also points to another concern not fully captured by the EBRI survey: working-age caregivers who leave the workforce to care for a loved one can end up with lower Social Security benefits because the program’s benefit formula is based in part on a worker’s earnings history.

That is one reason Adcock supports a Social Security caregiver credit.

He urges Congress to pass the Social Security Caregiver Credit Act of 2026 (S. 4396/H.R. 8490). The legislation was introduced by Sen. Chris Murphy (D-Conn.) and Sen. Kirsten Gillibrand (D-N.Y.) in the Senate, with Rep. Brad Schneider (D-Ill.) introducing the House companion measure.

The legislation would allow qualifying unpaid caregivers to receive up to five years of deemed wages for purposes of calculating Social Security benefits. To qualify, a caregiver would generally have to provide at least 80 hours of care per month to a dependent child under age 12 or a chronically dependent relative.

The bills remain in committee. S. 4396 was referred to the Senate Finance Committee, while H.R. 8490 was referred to the House Ways and Means Committee.

The issue is particularly important here in Rhode Island, where thousands of family members provide unpaid care that helps loved ones remain in their homes.

Maureen Maigret, policy advisor with the Senior Agenda Coalition of Rhode Island (SACRI), says the EBRI findings confirm what advocates have been seeing for years.

“Caregiving takes a significant physical, emotional, and financial toll on our unpaid caregivers,” she says.

Maigret notes that Rhode Island caregivers provide thousands of hours of unpaid care that can allow people to remain at home longer, potentially delaying or avoiding more costly nursing facility care.

SACRI is pushing for policies to strengthen support for caregivers, including expanding the state’s Temporary Caregiver Insurance program, adequately funding respite services, and creating a state caregiver tax credit.

Rhode Island has already taken steps to support working family caregivers through its Temporary Caregiver Insurance program. Aging advocates, however, continue to push for expanded eligibility and additional weeks of paid leave.

Taking a Close Look at AARP’s Caregiver Study

After a media briefing last year, AARP and the National Alliance for Caregiving (NAC) published a reportCaregiving in the U.S. 2025, that warns of a looming crisis that will impact America’s 63 million caregivers, an increase of 45% over the past decade. The report, released June 24, 2025, noted that caregivers are at a “crisis point.” Nearly half reported major financial problems, one in five reported fair or poor health, and more troubling, nearly a quarter felt completely alone.

One in five caregivers report poor health; a quarter are taking on debt due to caregiving. Half report negative financial impact due to caregiving, and one in five cannot afford basic needs like food.

EBRI’s new survey adds an important retirement-focused perspective to an ongoing national conversation about unpaid caregiving.  The research shows how caregiving can affect not only today’s household decisions but a person’s long-term financial security.

And that may well be the most important takeaway from the new EBRI report.

Millions of Americans step up to the plate when a parent, spouse, child or other loved one needs help. They do it because it is what families do. But caregiving should not mean that the person providing that care has to sacrifice his or her own financial future.

Like AARP’s 2025 caregiver study, EBRI’s report examines how caregiving responsibilities are associated with retirement confidence, debt, savings, financial stress, workplace needs and long-term retirement preparation among workers and retirees.

The EBRI research, complementing AARP’s definitive caregiving research, makes it clear that unpaid caregiving carries consequences that can extend far beyond the time spent providing care. For many Americans, the price may be paid not only today, but again when they reach retirement.

A Final Note…

EBRI’s Copeland points out: “The survey results clearly show caregiving has significant impacts on both workers and retirees, not only now but in the future as well. While you may not be a caregiver currently, if you have parents or children, you are likely to be one in the future. Thus, preparing for this need, or better handling current caregiving needs, can make a huge difference in retirement preparations and current expenses. Caregiving can take a toll on all aspects of life, so anything individuals can do to plan for it or better educate themselves can foster a caregiver’s well-being, both financially and emotionally.”
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The 2026 Retirement Confidence Survey was conducted online from January 2 through January 28, 2026, among 2,544 Americans age 25 and older. It included a general population sample of 2,052 people — 1,007 workers and 1,045 retirees — plus an oversample of 492 caregivers. The final analysis included 701 caregiving workers and 305 caregiving retirees.

The 2026 survey was supported by the American College of Financial Services, American Funds/Capital Group, Bank of America, Bright Horizons, CareScout, Edward Jones, Empower, Fidelity Investments, FINRA Foundation, Jackson National, J.P. Morgan Chase & Co., Mercer, Nationwide, Principal Financial Group, Protective, Prudential/PGIM, T. Rowe Price and Voya Financial.

To watch the EBRI Webinar and for a copy of the slides, go to https://www.ebri.org/publications/webinars/past-webinars

To read AARP’s 2025 Caregiver Study, go to Caregiving in the U.S. 2025 – AARP Research Report

Senior Agenda Coalition of RI Unveils 2026 Legislative Agenda at Annual Briefing

Published in RINewsToday on March 16, 2026

At its 10th annual Legislative Leader’s Forum, the Senior Agenda Coalition of Rhode Island (SACRI) unveiled its 2026 legislative agenda. More than 160 participants, including older adults, advocates, and state and federal officials, gathered at Gaige Hall at Rhode Island College for the event.

The event, “Voices of Advocacy — Anchors of Hope,” addressed the challenges facing Rhode Island’s growing older population and the policy changes needed to improve affordability, health care access, housing, and community supports.

The briefing opened with remarks by Rhode Island College President Jack R. Warner, SACRI Board Chair, Kathleen McKeon, and Executive Director Carol Anne Costa, who served as host. 

Costa began with a thank you to Rep. Joseph Solomon and Senator Mark McKeeney (who were present) for introducing the bill creating the Office of the Elder Advocate.  SACRI Policy Advisor Maureen Maigret outlined an Affordable Policy Agenda. Other speakers included representatives from the Rhode Island Coalition for Elder Justice, Economic Progress Institute, and Rhode Island Organizing Project.

A number of top elected officials followed, including U.S. Sens. Jack Reed and Sheldon Whitehouse, Congressman Seth Magaziner, Gov. Dan McKee, State Treasurer James Diossa, House Speaker K. Joseph Shekarchi, and Senate Majority Leader Frank Ciccone, who discussed previous and current legislative efforts affecting older Rhode Islanders.

Rhode Island’s Aging Demographics

“One in five Rhode Islanders is 65 or older,” Maigret said, adding the state is also among the top five for residents 85 and older.

The share of residents 65 and older rose from 16% in 2016 to 19% today. Maigret reminded officials that older residents are a powerful voting bloc. In 2024, over one-third of ballots were cast by older voters.

Nearly 73% of households led by those 65 and older own their homes, while 28% rent. Housing costs burden 31% of older homeowners and 52% of renters, who spend over 30% of their income on housing.

Around 4% of older Rhode Islanders live in nursing facilities, and about 485 aged 55+ are unhoused including 164 persons aged 65+.

Older adults drive Rhode Island’s economy: 40% of the workforce is 55+, about 40,000 provide unpaid family care, and approximately 45,000 volunteer formally in their communities.

Residents aged 50 and older contribute $27 billion annually to Rhode Island’s GDP. Social Security brings $3.9 billion into the state each year, with every $1 in benefits generating about $2 in economic output.

Despite these contributions, financial insecurity persists. Older adult poverty has increased and now exceeds 11%, and nearly a quarter of older households live on less than $25,000 a year.

A healthy single older homeowner without a mortgage needs nearly $29,000 annually to cover basic expenses, exceeding what about a quarter of older households have.

SACRI’s Legislative Priorities

Maigret said affordability is the central challenge facing older residents especially those with modest incomes, and SACRI has organized its agenda around four “building blocks”: health care, economic security, housing, and community supports.

Eliminating the $9,950 asset limit for the Medicare Savings Program is a top priority. SACRI recommends removing this limit entirely to allow more low-income residents to qualify for help with Medicare costs.

 “In 2025 the legislature raised the income eligibility to about $27,000, this year we want to take the next step,” Maigret said. “And the next step is to eliminate the very restrictive asset test.”

Maigret also urged lawmakers to fully fund provider rate increases as recommended by the Office of the Health Insurance Commissioner, specifying that these funds are needed to close workforce shortages in home care.

These increases address shortages of home care workers. The coalition also urges nursing home cost-of-living adjustments to the federal 3.1% recommendation, ensuring increases reach frontline workers.

Additional SACRI recommendations include increasing funding for the Long-Term Care Ombudsman Program to expand oversight and supporting an all-payer Primary Care Investment Target to increase access to primary care.

To address Rhode Island’s housing shortage, SACRI recommends a housing bond of at least $120 million, with a requirement that at least 30% be allocated to populations including older adults, persons with disabilities and the homeless. SACRI further urges that new residential developments be required to include more accessible units than the current 8% rate.

Maigret called for stronger support for caregivers and community services. Proposed policies include a caregiver tax credit up to $1,000, increasing the Medicaid home care asset limit, funding homemaker services, awarding a state grant to the Village Common of Rhode Island to aid aging in place, and establishing an Office of the Elder Advocate.

Other Policy Concerns

Nina Harrison, policy director at the Economic Progress Institute, argued that Rhode Island’s tax system places a heavier burden on lower-income residents.

“The lowest-income earners in the state pay a higher portion of their wages in taxes than the top income earners,” Harrison said. She supports creating a new tax bracket for annual income above $640,000, which she said could generate about $203 million annually for public services.

Ray Gagné of the Rhode Island Organizing Project called for restoring recent service cuts at the Rhode Island Public Transit Authority and creating a stable, long-term funding source for the system.

Lawmakers Respond

House Speaker Shekarchi shared a personal story about caring, along with his siblings, for their 100-year-old father with Alzheimer’s disease, stressing the importance of allowing older adults to age in place.

“Everything is a compromise. Everything is a negotiation,” Shekarchi said of the legislative process. He highlighted recent state investments, including $18 million to keep Roger Williams and Fatima hospitals operating, $12 million added last year to nursing home funding to address workforce shortages, and more than $40 million to increase reimbursement rates for primary care physicians.

Shekarchi also pointed to legislation allowing Accessory Dwelling Units (ADUs) as a step toward addressing the state’s housing shortage.

“That’s a big benefit,” he said.

Senate Majority Leader Ciccone said lawmakers are considering 17 bills to make health care more affordable and accessible. “Throughout this session, we will evaluate the financial burdens facing Rhode Islanders and the programs they rely on,” Ciccone said.

Gov. McKee argued that his “affordability for all” plan would benefit all Rhode Islanders, with key provisions for seniors, including the complete elimination of the state tax on Social Security and policies to control rising utility costs.

The Governor outlined several proposals in his budget, including increasing funding for senior centers by $200,000 for a total of $1.8 million and phasing out the state tax on Social Security income over three years, beginning with lower-income residents.

His budget also includes $9.5 million to assist nearly 10,000 residents whose HealthSource RI insurance premiums have increased sharply.

State Treasurer Diossa gave an overview of agency programs spanning the age spectrum, from baby bonds to retirement planning. He noted that his Secure Choice retirement program addresses the needs of the 40% of private-sector workers who lack access to retirement benefits.

At the federal level, Sens. Reed and Whitehouse warned that changes to federal policies could threaten Social Security, Medicare, and Medicaid.

U.S. Rep. Seth Magaziner also called for federal action to lower costs, including expanding Medicare drug price negotiations and creating tax incentives to increase the housing supply. He also announced plans to pursue bipartisan legislation to establish a permanent House Select Committee on Aging. “Seniors deserve a dedicated forum in Congress focused on the challenges they face,” Magaziner said.

SACRI’s Costa ended the Forum with a call to collective action, urging attendees to leverage their influence for unified advocacy on behalf of older adults and people with disabilities in Rhode Island.

Let’s make our voices heard and ensure Rhode Island’s leaders are held accountable for advancing these critical priorities. Together, we can drive lasting change and truly roar for progress.

Two Attendees’ Perspectives

Mary Lou Moran, director of Pawtucket’s Division of Senior Services/Leon Mathieu Senior Center, said the briefing successfully brought together leaders from across government to focus on the needs of older residents.

“The continued work to eliminate the Medicare Savings Program asset limit, create an Office of the Elder Advocate, and expand funding for programs such as the Long-Term Care Ombudsman and Medicaid home care was all highlighted,” Moran said.

Moran emphasized legislative and federal efforts to support older adults and expressed optimism that the initiatives discussed will drive progress in the next session.

“The Governor’s FY 2027 State budget is fully committed, has little new revenue & substantial federal cuts in the Affordable Care Act, Medicaid, Housing Voucher & food subsidies will leave an unresolved budget hole,” says North Kingston Resident David R Kaloupek. Kaloupek, 87, asks: “How will the Rhode Island General Assembly narrow its spending targets for the state’s most vulnerable, frail older adults, nursing home residents, home care beneficiaries, and unhoused older Rhode Islanders?  When the dust settles after the upcoming legislative sessions conclude, we’ll see who will be helped and who will be abandoned.”

A final note…  The coming together of aging advocates and Gov. McKee, the House Speaker, and Senate Majority Leader might just create the political will to support key parts of SACRI’s legislative agenda, such as eliminating the Medicare Savings Plan asset limit, the state tax on Social Security, or creating an Office of Elder Advocate, which could significantly boost the chances of those proposals becoming law. The agreement between aging advocates and state lawmakers on several fronts suggested a strong potential for legislative progress on senior issues in the upcoming session.

SACRI’s 2026 Legislative Leaders’ Forum was sponsored by: Age-Friendly Rhode Island, Delta Dental, United Healthcare, Neighborhood Health Plan, SEIU Local 580 and Capitol TV.

https://capitoltvri.cablecast.tv/show/11856

Caregiving Still a Crisis in America, Pew Report Confirms

Published in RINewsToday on March 9, 2026

Last summer, AARP and the National Alliance for Caregiving (NAC) released their 133-page report, Caregiving in the U.S. 2025, widely regarded as one of the most comprehensive sources of data on family caregivers in America. Seven months later, the Pew Research Center (PRC) expanded the national caregiver debate, releasing its own report, Family Caregiving in an Aging AmericaThis report confirmedthe results of AARP and NAC’s sweeping report, while adding fresh insight to a rapidly growing body of research on caregivers.

These two caregiver reports highlight a powerful demographic trend: the continued graying of America’s population, creating a growing need for Congress and state governments to enact laws to assist the nation’s 63 million family caregivers. At the same time, mounting evidence reveals that increasingly family members are stepping into caregiving roles and responsibilities. The Pew survey released last week which examined the experiences of caregivers, found that the demands of caregiving intensify as family members reach the age of 75 and older.

“Aging in America is one of the most profound demographic trends shaping our society today,” observes Kim Parker, PRC’s director of social trends research, in a Feb. 26, 2026, statement announcing the results of its first-ever caregiver study. Parker emphasized that caregiving for an aging family member encompasses a wide range of responsibilities, including running errands, managing finances, navigating medical issues, and providing hands-on personal care.

“Helping in these ways has a direct impact on the lives of caregivers,” Parker said, stressing that caregiving often strengthens relationships between caregivers and those receiving care. But particularly when it comes to supporting an aging parent, many caregivers say it has taken a toll on their personal well-being, finances, careers, and even their social lives, Parker added.

Taking a Look at Key Findings

The study findings revealed that one in ten U.S. adults reported being a caregiver for a parent aged 65 or older. Another 3% cared for a spouse or partner in that age group.  Fewer than 1% reported caring for both an aging parent and an aging spouse or partner. However,  survey data show that caregiving rates rise significantly among those with older loved ones: 24% of adults with a parent aged 65 or older identify themselves as caregivers, as do 25% of those with an aging spouse or partner.

Consistent with previous research, gender plays a role in taking on caregiving roles and responsibilities. Among adults with an aging parent, spouse, or partner, 28% of women identify as caregivers, compared with 23% of men.

Men and women caring for an aging parent are about equally likely to say that helping with activities of daily living has strengthened their personal relationships.

However, women note that they are more likely than men to report negative effects on their emotional well-being (47% vs. 30%) and physical health (38% vs. 26%).

As to finances, the study found that income also plays a role in who becomes a caregiver.  Among adults with an aging parent, spouse, or partner, 39% of lower-income adults identify as caregivers, compared with 23% of middle-income adults and 16% of upper-income adults.

What Caregivers Do

Roughly two-thirds of adults caring for an aging parent (68%) and a similar share caring for an aging spouse or partner (66%) regularly provide help with at least one key activity of daily living. These tasks include running errands, managing household chores and home repairs, scheduling medical appointments, managing medications, handling finances and paying bills, and also assisting with activities of daily living such as bathing or dressing.

The survey findings also indicate that adults who provide care for an aging parent with at least one of the tasks tend to report that this has had a more positive than negative impact on their relationship with their parent. On balance, caregivers find that this experience has a more negative impact on their physical health, emotional well-being, job (among those employed), finances, and even their social life.

While caring for an aging spouse or partner regularly involves helping them with activities of daily living, they say that this experience has had a more positive impact on their relationship. But unlike their peers caring for an aging parent, their views on physical health, emotions, finances, and social life are more mixed, rather than mostly negative.

Advocates Say Caregiver Crisis Demands Swift Action

“The PRC’s survey findings further validate what other research and caregivers themselves have been telling us — that they’re sacrificing their health, their finances, and their careers to care for the people they love, often with very little support,” says Jason Resendez, NAC’s President & CEO.

According to Resendez, the PRC’s survey findings confirm the findings of AARP and the NAC’s Caregiving in the U.S. 2025 report.  He noted that caregiving falls hardest on those least equipped to handle it. Lower-income families and women carry a disproportionate share of the load. These patterns are consistent with what caregivers on the ground routinely describe.

Like other research findings, Resendez notes that PRC’s report highlights that social isolation, financial strain, and career disruption are widespread among caregivers — yet these tend to get overshadowed in public conversation by the more visible emotional toll. The sharp increase in caregiving demands once a parent crosses into older age brackets is also an underappreciated threshold that catches many families off guard, he says.

PRC’s survey findings, says Resendez, paint burnout not as a single breaking point but as a compounding experience — emotional exhaustion layered with their own declining physical health, shrinking social lives, strained finances, and career setbacks, all happening simultaneously.

“Women in particular experience this accumulation more acutely than men, suggesting burnout has a deeply gendered dimension,” he says.

“The PRC report shows broad, bipartisan public support for concrete interventions: tax relief, respite care, paid family leave, and direct financial assistance,” says Resendez.  Preparation means building infrastructure around these supports before the aging population surge overwhelms families who are already stretched thin, he adds.

When asked what success would look like in reducing caregiver burden by 2030, he responded: “Success would mean closing the income and gender gaps in who bears the caregiving burden, fewer caregivers reporting harm to their health and well-being, and widespread adoption of the financial and workplace supports that the public already overwhelmingly favors. The benchmark is simple: caregiving should not systematically impoverish or exhaust the people doing it,” he says.

Inside the Beltway, aging groups are pressing Congress to support financially struggling caregivers. AARP, representing 38 million older adults, reports that on average, family caregivers spend over $7,200 annually—26% of their income—on out-of-pocket expenses.

“America’s family caregivers put family first, helping their parents, spouses, and others stay at home,” said Nancy LeaMond, AARP Executive Vice President and Chief Advocacy & Engagement Officer. “They spend thousands of dollars every year on this care, while juggling work and family responsibilities. We urge Congress to put money back into the pockets of hardworking family caregivers by passing the bipartisan bill, The Credit for Caring Act,” she says.

The Senate bill (S 925), introduced in the Senators Shelley Moore Capito (R-WV) and Michael Bennet (D-CO) and in the House (H.R. 2036) by Representatives Mike Carey (R-OH) and Linda Sánchez (D-CA), offers up to a $5,000 nonrefundable federal tax credit to help offset caregiving expenses, addressing the significant personal and financial sacrifices caregivers make to support their loved ones.

AARP says respite care is essential to preventing caregiver burnout, yet access remains limited and uneven, leaving many caregivers without the breaks they need to continue caring for loved ones. The aging advocacy group is calling on Medicaid to strengthen home- and community-based services, reduce unnecessary red tape, and ensure that family caregivers can access supports such as respite care and training.

Family caregivers provide more than $600 billion worth of care each year, and that labor should earn them benefits through Medicare and Medicaid, says Maggie Ornstein, PhD, a public health geographer, guest faculty member at Sarah Lawrence College, and a family caregiver for more than 30 years who writes extensively on caregiver issues.

Ornstein agrees with AARP’s call to strengthen Medicaid and argues that home care should be a required benefit under the program, just as institutional care is. “Wages for home care workers need to be increased,” she says, noting that providing living wages would make these jobs more desirable and, in turn, better support family caregivers.

“There is also an urgent need for Medicare to cover home care and related services,” Ornstein adds. “Coverage should also be available to caregivers before the standard age of eligibility. Similar to how people with permanent disabilities qualify for Medicare, eligibility could be expanded to caregivers who provide more than 20 hours of care per week,” she says.

Ornstein notes that direct payment to caregivers is popular (63% in PRC’s study) and would have the biggest impact on caregivers. “We know that caregivers often have to reduce paid employment or leave work entirely, so direct payment in the form of wages or ‘caregiver allowances,’ as provided in countries like Canada, Australia, Germany, and the UK, would help with financial security,” she says.

Research suggests, says Ornstein, that caregivers lose more than $300,000 in wages and benefits over their lifetimes. “Tax credits, while often the most widely discussed policy response, would do little to help the lowest-income and most vulnerable caregivers. Proposed tax credits would need to be refundable to have the most impact, but even then, direct payments would better bolster financial well-being, which should be a main policy priority,” she says.

Other policies, such as the Social Security Caregiver Credit Act, need more public attention, too, says Ornstein, emphasizing that providing Social Security credits to caregivers who leave work to provide care would be transformative for their retirement.

Finding a Care Giver Policy Fix in Rhode Island

With the release of the PRC caregiver survey findings, it is more important than ever to spotlight the vital role of our state’s caregivers, says SACRI Policy Advisor Maureen Maigret, who calls caregivers the backbone of Rhode Island’s long-term services and supports system.

According to Maigret, the PRC report highlights that lower-income adults with an aging parent, spouse, or partner are more likely to serve as caregivers than those with higher incomes. “That is why SACRI views the passage of a caregiver tax credit bill as a priority,  one that will help offset the financial burden faced by so many caregivers,” she says.

H7241, sponsored by Rep. Susan R. Donovan (D-Dist. 69, Bristol, Portsmouth), and S. 2246, sponsored by Sen. Linda L. Ujifusa (D-Dist. 11, Portsmouth, Bristol), would provide a tax credit of up to $1,000 for a family caregiver caring for an older adult or a person receiving Social Security Disability who requires assistance with two activities of daily living. The proposal would cover up to 50 percent of eligible expenses, capped at $1,000.

Supporters say that establishing a caregiver tax credit would help older adults and people with disabilities remain in their homes while also reducing costly Medicaid expenditures on nursing home care, which can exceed $100,000 annually.

A Final Note…

One of the biggest unanswered questions about caregiving in America today is whether there is the political will in Congress to support family caregiving.

“The PRC’s report shows that relationships are strengthened through both providing and receiving care. When caregivers are not supported in that care, they experience significant stress,” Ornstein said.

“We have an opportunity to value the care provided by family and non-kin caregivers across the country and, in doing so, strengthen our communities. Instead, we have a system that abandons, neglects, and exploits family caregivers. We need more people to decide that this is unacceptable and to demand the support caregivers earn through the work they do every day,” Ornstein adds.

To read PRC’s caregiving report, go to https://www.pewresearch.org/social-trends/2026/02/26/family-caregiving-in-an-aging-america/

To get a copy of Caregiving in the US 2025: Key Trends, Strains, and Policy Needs, go to https://www.aarp.org/pri/topics/ltss/family-caregiving/caregiving-in-the-us-2025/

For state-specific caregiving data, go to https://www.aarp.org/pri/topics/ltss/family-caregiving/caregiving-in-the-us-2025-caring-across-states/