Tag Archives for Senator Shelley Moore Capito

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 America. This 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/

Senate bipartisan proposal boon to nation’s family caregivers

Published on October 30, 2023

Many family caregivers will tell you that coping with the stress of providing care to loved ones, is made more difficult when they are forced to navigate the confusing federal bureaucracy to identify key financial and health care programs for support. Last week, S 3109, the Alleviating Barriers for Caregivers (ABC) Act, was thrown into the legislative hopper to make it easier for more than 48 million family caregivers to obtain this information. The Senate caregiver proposal was referred to the Senate Finance Committee and no House companion measure has been introduced at press time. 

On Oct. 24, the bipartisan Senate proposal was introduced by Senators Edward Markey (D-MA) and Shelley Moore Capito (R-WV) and is co-sponsored by Senators Kyrsten Sinema, (I-AZ), Susan Collins (R-ME), Bob Casey (D-PA), and Thom Tillis (R-NC). The proposal would require the Administrator of the Centers for Medicare & Medicaid Services and the Commissioner of Social Security to review and simplify the processes, procedures, forms, and communications for family caregivers to assist individuals in establishing eligibility for, enrolling in, and maintaining and utilizing coverage and benefits under the Medicare, Medicaid, CHIP, and Social Security programs respectively, and for other purposes. The agencies must conduct a review and seek input from family caregivers prior to taking actions that would improve their experiences coordinating care for their loved ones.

Currently, more than 48 million family caregivers in the U.S. help take care of loved ones. According to AARP and the National Alliance for Caregiving in the U.S. report, caregivers provide support ranging from selecting the best providers; coordinating multiple health and long-term care providers; navigating the care system; advocating with providers, community services, and government agencies; and managing medications, complex medical tasks, meals, finances, and more.

According to AARP, most caregivers say additional information and support for managing these needs is essential. One in four family caregivers (25%) report they want help figuring out forms, paperwork, and eligibility for services and 26% say that it is difficult to coordinate care across various providers and services. While most (61%) work full- or part-time, and some also care for children, family caregivers spend almost 24 hours a week caring for a loved one on average, says the Washington, DC-based advocacy group.

Personal caregiving experiences leads to calls for caregiver assistance 

Being family caregivers, both Senators Markey and Capito, primary sponsors of S 3109, like many caregivers, encountered red tape when they attempted to find needed federal caregiving programs and services to care for their parents.

“When my mother suffered from Alzheimer’s, my father was her caregiver in our home in Malden,” remembers Senator Markey. “Caregivers serve on the frontlines of our nation’s health care system by giving our families and friends the care and support they need to remain in their homes and communities with their loved ones. However, our aging and disabled community members can’t get the care they need if their caregivers – the backbone of their treatment – are struggling to navigate complex, burdensome, and stressful processes each and every day while also still managing day-to-day family and professional responsibilities. 

“As a caregiver for my parents during their struggle with Alzheimer’s disease, I know personally the level of responsibility put on family caregivers and the burdens, which can be created by federal process and procedure,” said Senator Capito. “Caregivers in West Virginia and across our country put family first and balance multiple priorities at once, which is why we must do all we can to alleviate roadblocks that could delay and even prohibit them from receiving the support they need,” she said. 

Calls for upper Chamber to pass caregiver proposal

At press time, 32 national aging and health care strongly support passage of S 3109.

“Family caregivers are the backbone of our nation’s long-term care system, and they are overwhelmed with their responsibilities and time spent managing their loved one’s care,” said Executive Vice President and Chief Advocacy and Engagement Officer Nancy LeaMond. “The Alleviating Barriers for Caregivers Act could help save family caregivers valuable time and reduce their stress by making it easier to navigate resources, eligibility, benefits, and health systems when providing care, she says.  

“Our concern is that these federal caregiver programs are so complicated, they become virtually inaccessible, discouraging family and friends from providing caregiving services. The ABC Act is the first step to holding CMS and SSA accountable for eliminating these barriers to caregiving so people with intellectual and developmental disabilities can live their lives in the community,” said Robin Troutman, Deputy Director at National Association of Councils on Developmental Disabilities.

“The Rosalynn Carter Institute for Caregivers (RCI) supports the Alleviating Barriers for Caregivers Act. Far too often family caregivers are faced with burdensome administrative obstacles in accessing the resources and supports to which they’re due. As system fragmentation is a significant component of caregiver strain, we commend this important first step to better streamline, simplify, and coordinate access across federal programs, said Dr. Jennifer Olsen, CEO of the Rosalynn Carter Institute for Caregivers.

“Being a caregiver to someone living with Alzheimer’s is already an incredibly difficult and emotionally draining job. When you layer on top of it the daunting task of navigating our country’s complex healthcare coverage system, it can become downright overwhelming for even the smartest person. This bill is an important step toward making it easier for caregivers to fully advocate on behalf of their loved ones to ensure they have access to the diagnostic, pharmaceutical, and treatment services they need, said George Vradenburg, Chair and Co-founder of UsAgainstAlzheimer’s.

Congress must come together to support caregivers

Family caregivers across the national  provide 36 billion hours of unpaid care, valued at an estimated $600 billion annually. In the Ocean State, 121,000 family caregivers provide 113 million hours of unpaid care valued to be 2.1 billion. These caregivers need assistance from Congress to access resources to provide care to their loved ones. 

There is 372 days left until the 2024 president elections. AARP research tells us that a majority of voters, 78%, are either a current, past, or future family caregiver. Over 70% of voters across the political spectrum say they would be more likely to support a candidate who backed proposals to support family caregivers, such as a tax credit, paid family leave, and more support and respite services.

Hopefully, more Senators will see the value of S. 3109 and quickly become cosigners. It’s time the newly elected House Speaker Mike Johnson (R-LA) and his caucus put the need of their caregiver constituents first, over their political priorities, and support passage of a House companion measure. The House Problem Solvers Caucus can be instrumental in pushing for the introduction and passage. Time will tell.

For more information about caregiving, go to www.aarp.org/caregiving.

For a copy of the 2022 National Strategy to Support Family Caregivers, go to https://acl.gov/sites/default/files/RAISE_SGRG/NatlStrategyToSupportFamilyCaregivers.pdf

AARP launches campaign to support Family Caregivers

Published in RINewsToday on July 5, 2021

With caregiving costs skyrocketing, and with caregivers now estimated to be spending $7,242 annually out-of-pocket, AARP launches a national campaign to push for passage of the Credit for Caring Act.

The Washington, DC-based aging advocacy group has endorsed the bipartisan legislative proposal that would provide up to a $5,000 nonrefundable federal tax credit for eligible working family caregivers. The caregiver bill was introduced on May 18th  in the Senate by Senators Joni Ernst (R-IA), Michael Bennet (D-CO), Shelley Moore Capito (R-WV), and Elizabeth Warren (D-MA) and in the House by Representative Linda Sánchez (D-CA).

According to the National Alliance for Caregiving and AARP’s Caregiving in the U.S. 2020 study, there are an estimated 48 million Americans who provide care to either an adult or child with special needs at some time in the past 12 months. The study showed an increase of about 8 million caregivers from 2015 to 2020, indicating a significant growth in the nation’s caregivers’ population.

A 2019 AARP Public Policy Institute report noted that family caregivers in the United States provide $470 billion in uncompensated care.

Calling for Congressional Action to Assist Caregivers

AARP’s national campaign, urging passage of the Credit for Caring Act and more support for family caregivers, involves significant grassroots advocacy, including at least 60 tele-town halls, a major digital and video advertising initiative, and social media outreach through AARP’s national and state offices. Already, more than 100,000 contacts have been made with Members. In addition, more than 110 organizations, including 36 military and veterans service and support organizations, have joined AARP in asking Congress to pass the act. 

“This research reflects the incredible strain and sacrifices our 48 million family caregivers face every day. They are the backbone of our long-term care system, yet their backs are breaking from a lack of support,” said Nancy A. LeaMond, AARP Executive vice president and Chief Advocacy Officer in a June 29th statement announcing the kick-off of its new national grassroots campaign and also the release of its newest caregiver study, “AARP’s Caregiving Out- of-Pocket Costs Study.”

Adds AARP Rhode Island State Director Catherine Taylor: “This research reflects the incredible strain and sacrifices the 136,000 family caregivers in Rhode Island face every day. They are the backbone of our long-term care system, yet their backs are breaking,” 

“AARP research shows family caregivers contribute 114 million hours each year in their vital roles, “Taylor noted.

“We hear from so many caregivers from across the state who struggle financially,” Taylor added. “It is heartbreaking to know that cost, along with stress, fatigue and other factors take their toll over time. The need for support is more than evident.”

The Cost of Caregiving

Last month, AARP released its caregiver study, putting a spotlight on the out-of-pocket costs of caregiving, taking a close look at the financial strains on family caregivers and financial sacrifices (uncompensated care) they make in providing assistance to their loved ones. The study is a five year follow up to the landmark 2016 out-of- pocket caregiving study.

According to newly released study, nearly 8 in 10 of those caring for an adult family member (78%) are facing regular out-of-pocket costs, with the highest burden falling on younger caregivers and those who are Hispanic/Latino or African American. AARP researchers tracked what caregivers pay for using their own money and found average annual spending totaled $7,242 and, on average, 26% of the caregiver’s income. Housing expenses like rent or mortgage payments, home modifications, and assisted living made up more than half of caregivers’ spending, followed by medical expenses at 17%.

Out-of-pocket spending is much greater for some groups of caregivers, either in total dollars spent or as a percentage of average household income.

The researchers say that working caregivers who reported two work-related strains from caregiving, such as taking time off or working more hours, spend $10,525 each year on average – twice as much as caregivers who report one or no work-related strains.

AARP’s caregiver study also examined how caregiving financially impact between different generations of caregivers. Gen X caregivers spent the most money at $8,502. However, Gen Z and Millennial caregivers reported the greatest financial strain (spending on average $7,462 per year), spending a larger share of their household income. These caregivers have less time in the workforce to build financial security.

The AARP study found that Hispanic/Latino and African American caregivers also reported greater financial strain than White or Asian American caregivers. Hispanic/Latino caregivers spent on average, 47% of their household income on caregiving, and expenses for African American caregivers totaled, on average, 34% of income.

Researchers also found that caregivers caring for someone with Alzheimer’s disease/dementia or mental health issues tend to spend more ($8,978 per year and $8,384 per year, respectively) than those caring for someone without those conditions.

Work-related or personal strain as a result of caregiving can impact the caregiver’s long term financial security, too, say the researchers.  Nearly 47% of caregivers have experienced at least one setback as a result of being a caregiver. These setbacks include dipping into personal savings, cutting back on their own spending, and reducing how much they save for their retirement years.

More than 53% have experienced at least one work-related impact as the result of caregiving. Taking time off (both paid or unpaid) and working different hours are ways that caregiving impacts work. 

In addition to direct out-of-pocket spending, caregivers are also experiencing indirect financial setbacks. Nearly half of family caregivers (47%) experienced at least one financial setback such as having to cut back on their own health care spending, dip into their personal savings or reduce how much they save for their retirement.

Send your letters to Congress urging passage of the bipartisan Credit for Caring Act.  With an aging society and the number of caregivers increasing, a $5,000 nonrefundable federal tax credit for eligible working family caregivers might just help to pay the mounting costs of caregiving expenses. 

For more details about AARP’s caregiver study, go to:  https://www.aarp.org/content/dam/aarp/research/surveys_statistics/ltc/2021/family-caregivers-cost-survey-2021.doi.10.26419-2Fres.00473.001.pdf.

More resources for family caregivers, including a free financial workbook, are available at aarp.org/caregiving.