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

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/

National Family Caregivers Month: State-by-State Roadmap on Assisting Caregivers

Published in RINewsToday on November 3, 2025

Over three months ago, AARP and the National Alliance for Caregiving (NAC) released Caregiving in the US. 2025, warning of a major crisis facing America’s 63 million caregivers. The 133-page report, released on July 23, noted a 45% increase in the number of caregivers over the past decade and concluded that caregivers are at a “crisis point.”

The first Caregiving in the US report, released in 1997 by AARP and NAC, is widely regarded as one of the most authoritative data sources on family caregiving in America. Subsequent editions followed in 2004, 2009, 2015, 2020, and now 2025—each providing updated information on caregiver demographics and the evolving realities of caregiving in America.

A First-of-its-Kind State-by-State Data Analysis

Building on the national Caregiving in the US 2025 report, AARP and NAC recently unveiled a first-of-its-kind state-by-state caregiving data analysis. The 248-page report reveals how much local factors—down to your community or ZIP code—shape the caregiving experience, exposing deep financial and emotional challenges confronting millions of family caregivers.

Researchers found that state policy choices make a measurable difference: states offering stronger supports such as paid leave, respite care, and health system integration report far better outcomes for caregivers.

Rhode Island was among 19 states without sufficient sample sizes to support detailed analysis beyond prevalence and the estimated number of caregivers. For these states, only those metrics were included.

According to AARP and NAC, the report identifies a consistent pattern: states with the highest caregiving prevalence often have the fewest supports. Geography, policy, and community resources together determine whether families can manage care—or collapse under its weight.

The takeaway: where you live often determines whether you get relief or reach a breaking point.

With 63 million family caregivers nationwide—nearly one in four adults—the report underscores the urgent need for coordinated policy solutions at both the federal and state levels.

“Caregivers are the invisible backbone of our broken long-term care system and economy, and too many are paying the price out of their own pockets—risking financial security by taking on debt, using up savings, and leaving bills unpaid,” said Nancy LeaMond, AARP’s Executive Vice President and Chief Advocacy & Engagement Officer, in an Oct. 28 statement announcing the report. “This new data offers the clearest picture yet of America’s caregivers and a roadmap for the change they urgently need.”

AARP is urging Congress and state legislatures to adopt commonsense policies that help caregivers save time and money—and get the support they need.

“These state-by-state disparities expose how policy choices determine whether families thrive or collapse under caregiving responsibilities,” said Jason Resendez, President and CEO of NAC. “When financial strain hits 59% of family caregivers in Georgia compared to just 34% in Minnesota—meaning where you live can double your risk of economic hardship—it’s clear that patchwork state solutions aren’t enough.”

Rhode Island Specifics

Ahead of National Family Caregivers Month, AARP Rhode Island released its state-level caregiving data. The findings show that 23%—approximately 206,000 Rhode Island adults—provide largely unpaid care to parents, older spouses, and other loved ones. The data underscores the urgent need for legislative action to better support these caregivers.

“When a loved one needs help, family members, friends, and neighbors step up—that’s what we do,” said Catherine Taylor, AARP Rhode Island State Director. “But too often, caregivers carry this responsibility alone, putting their finances, health, and jobs at risk. As our state ages, the demand for care will only grow. With this new data and ahead of the 2026 legislative session, AARP Rhode Island is urging policymakers at every level to act now.”

AARP Rhode Island estimates that family caregivers provide $2.1 billion in unpaid care each year, enabling loved ones to remain at home and in their communities—where they want to be. Caregivers routinely handle a wide range of tasks, from bathing and meal preparation to managing medications and medical procedures, often without formal training.

Key Rhode Island caregiving statistics:

·         99% assist with instrumental activities of daily living (meal prep, administering medicine, managing finances)

·         65% assist with personal care (bathing, dressing, feeding)

·         55% perform medical or nursing tasks

·         40% provide high-intensity caregiving (many hours and complex care)

·         19% deliver at least 40 hours of care per week

The personal toll is significant:

·         80% of caregivers use their own money to meet their loved ones’ needs—averaging $7,200 annually, or 25% of their income

·         44% report financial setbacks, including debt, depleted savings, or difficulty affording food and medicine

·         70% juggle full or part-time jobs, with many reducing hours or leaving the workforce—jeopardizing their long-term financial security

A Call to Action

A dysfunctional Congress and state legislatures must directly confront the skyrocketing number of caregivers in America.

AARP and NAC along with the Alzheimer’s Association are calling on policymakers to strengthen financial supports—starting with federal legislation such as the Credit for Caring Act, which would provide a tax credit of up to $5,000 for working caregivers, and the Lowering Costs for Caregivers Act, which would expand flexible spending and health savings account uses.

States can also act by ensuring Medicaid home- and community-based care options are accessible, allowing caregivers to earn compensation, integrating caregiver recognition and training into the health care system, and adopting best practices from top-performing states.

In Rhode Island, advocacy groups including AARP, the Senior Agenda Coalition of RI (SACRI), and the Alzheimer’s Association Rhode Island Chapter have made significant progress. Rhode Island’s Temporary Caregiver Insurance (TCI) program—now offering eight weeks of paid leave at 75% wage replacement—helps family caregivers maintain income stability while providing care.

“In continuing our ongoing advocacy on behalf of caregivers, during the 2026 Rhode Island General Assembly session SACRI will prioritize legislation introduced last year — the creation of a state caregiver tax credit and advocate for the inclusion of respite services for adults under the Medicaid program,” notes Maureen MaigretSACRI Policy Advisor.

Maigret points out that a 2021 AARP study found the average caregiver spends $7,242 out of pocket each year caring for a loved one. “It’s a huge financial burden for many caregivers, especially as the cost of living continues to rise and 40% of caregivers report household incomes of $50,000 or less,” she says, referencing the 2021 Rhode Island Behavioral Risk Factor Survey. “A recent state survey also found that short-term respite is one of the most commonly requested services that caregivers say would help support their needs.”

“Supporting caregivers is not just compassionate—it’s smart policy. In 2024, Rhode Island spent $614 million in Medicaid costs related to dementia. By strengthening caregiver supports—like respite services, dementia-specific training, and care navigation—we can help families keep loved ones at home safely for longer and avoid more costly levels of care,” says Donna McGowan, Executive Director, Alzheimer’s Association Rhode Island Chapter.

“Thoughtful policy and targeted funding is not only the right thing to do—it’s a wise investment in the health and future of our state,” notes McGowan.

To get a copy of Caregiving in the US 2025 go to https://www.aarp.org/pri/topics/ltss/family-caregiving/caregiving-in-the-us-2025/

To get a copy of Caregiving in the US 2025: Caring Across the States, go to https://www.aarp.org/pri/topics/ltss/family-caregiving/caregiving-in-the-us-2025-caring-across-states/

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To access free caregiver tools and local resource guides, visit:

·         AARP Rhode Island “Guide for Caring for Older Adults in Rhode Island helps family caregivers access key programs, services, and agencies right in their community.

·         AARP’s online Caregiving Hub has tools and information available in English and Spanish.

·         AARP and United Way Worldwide’ s 211 program connects Rhode Island family caregivers to essential local services for themselves and their loved ones via the 211 helpline.

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