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Caregiver Crisis:  New Report Gives a “Wake Up” Call to Congress

Published in RINewsToday on July 28, 2025

After a media briefing last week, AARP and the National Alliance for Caregiving (NAC) released a report, Caregiving 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 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.

Congress and state policy makers must grapple with this demographic time bomb, the researchers say. With the graying of America, the number of the nation’s caregivers is skyrocketing. Today, nearly 1 in 4 adults provide ongoing caregiving to an adult or child with a complex medical condition or a disability in the past year. That’s up a whopping 20 million since 2015.

And the “sandwich generation” (caring for children and adults simultaneously) went from 11 million caregivers in 2015 to a whopping 17 million in 2025.

According to AARP, the first report, Caregiving in the U.S. (released in 1997 by the AARP and NAC), is widely regarded as one of the most authoritative data resources on family caregivers in America. The study has been repeated in 2004, 2009, 2015, and 2020, with each edition providing updated information on caregiver demographics and other factors affecting caregiving. This year’s 133-page report is the most comprehensive study of this critical area of American life to date.

Educating the Nation’s Media about Caregiving Issues

At the 52-minute zoom briefing, AARP CEO Myechia Minter-Jordan, stated, “We need systems that see caregivers, value them and support them because they are not just helping families.  They’re holding up the entire health care system.”

“Caregiving consistently ranks as one of the important issues to our members across age, geography, race and income,” says Minter-Jordan, calling it a bipartisan issue. “Today’s report is a wakeup call, but it’s also an opportunity to act and we hope it drives real lasting change,” she adds.

Adds Jason Resendez, NAC’s President and CEO, the nature of caregiving is growing more medically complex, with care that had once took place in clinics and hospitals. “We’re talking about managing catheters, administering injections and managing medical equipment. But here’s what’s truly troubling. We’re failing to prepare family caregivers for these responsibilities,” he said.

“We must center caregivers in our policy discussions, not as an afterthought, but as a priority because caregiving is infrastructure, it’s health care and it’s essential to our communities and economies,” says Resendez.

A family caregiver shared her personal story of taking care of her mother with dementia for over 10 years, illustrating the personal and financial tolls caregivers make. “I didn’t plan for this, I stepped into the role because someone I loved needed me.  That meant taking time off working and eventually leaving my career in the fashion industry to become my mom’s full-time caregiver, says Alma Valencia, from Pasadena, California.  “I hope that one day soon people like me won’t have to do this alone,” says Valencia.

The July 15 press briefing and the releasing of the report is intended to be a “wake up call” to influence public awareness and drive policy changes at the state and federal levels.  It was brought up that 8 million family caregivesr relied on Medicaid for their own health coverage, making them vulnerable to Congressional Medicaid cuts and stricter eligibility requirements.  By providing stark data on the growth and complexity of caregiving, AARP and NAC hope to influence legislative and administrative decisions affecting Medicaid program.

Painting a Picture of America’s Caregivers

Family caregivers—spanning all ages, races, incomes, and communities—include parents, friends, neighbors, and even children. They help with daily tasks such as mobility, personal care, financial management, and medical procedures. This report explores the essential role these caregivers play in the nation’s fragmented long-term care system, examining both the policies that support them and the gaps that remain.

Who are America’s caregivers?

According to this year’s caregiving report, 61% of the nation’s caregivers are women, while 39% are men.

Although the average caregiver is 51 years old, nearly half are under the age of 50.

Twenty-nine percent of caregivers belong to the “sandwich generation,” providing care for both children and adults. Additionally, 18% have a disability themselves, and 27% care for someone with dementia or cognitive impairment.

Links at the end of this commentary provide further detail on caregiver demographics, including ethnicity, race, income, gender, sexual orientation, and geography.

The findings from Caregiving in the U.S. 2025 underscore that caregiving is more than a role—it’s a full-time job.  Nearly 1 in 4 caregivers report providing over 40 hours of care per week. One-third say they have been caregiving for five years or more.

The latest caregiving report notes that America’s “Sandwich Generation” are stretched very thin.  Nearly 1 in 3 caregivers are also raising children under 18 while caring for an adult loved one. This figure rises to 47% among caregivers under 50 and is especially common among Latino (43%) and Black (36%) caregivers.

Caregiving hits you in your pocketbook, the report documenting that financial strain is widespread.  Nearly half of caregivers experienced at least one major financial impact—such as taking on debt, stopping savings. One in five can’t afford basic needs like food and housing.  Rural caregivers are impacted more because they have less access to affordable services. The challenge is greatest for younger, lower-income, Black, Latino, and LGBTQ+ caregivers, the researchers say.

And the report’s findings indicate that the vast majority are still unpaid. While 11.2 million family caregivers now receive some compensation, most are still unpaid. Paid family caregivers are more likely to be younger, lower-income, and racially diverse.

Workplace support is vital  for assisting caregiver workers and there is a growing need for companies to step the plate to help these individuals.  The report found that 7  in 10 family caregivers are employed on top of their family caregiving responsibilities forcing them to balance these dual responsibilities; half of them report experiencing work disruptions like going in late or leaving early to care for a loved one. More family caregivers than ever report having access to family caregiving related benefits like flex time and caregiving assistance. Salaried workers have dramatically better access to benefits.

Caregivers are facing significant health issues by the burden’s they cope with. One in 5 caregivers report being in fair or poor health, and nearly 23% say they struggle to care for their own health due to caregiving responsibilities. Reports of emotional stress have risen since 2020, with 4 in 10 say they are experiencing emotional stress.

A training gap exists for those caregivers performing more medically complex tasks.  Only 11% of caregivers say they have received medical training to assist with Activities of Daily Living (ADLs) or Instrumental Activities of Daily Living (IADLs), yet the report finds that 50% of the caregivers help with these tasks. The report finds that just over 20% of caregivers have received formal training on medical and nursing tasks despite over half managing complex medical and nursing tasks like injections, wound care, or medication management – yet 65% of caregivers are helping with any ADLs and almost all caregivers help with any IADLs.

Social isolation can significantly impact both mental and physical health, leading to increased risks of depression, anxiety, cognitive decline, and various physical ailments. The report’s findings suggest that caregivers feel more alone and isolated.  Nearly 1 in 4 caregivers report feeling socially isolated—a number that’s growing. Women, LGBTQ+ caregivers, and those who felt they had no choice in becoming caregivers are significantly more likely to report feeling alone.

Finally, the caregiving report called for more support systems to be in place and noted that the existing resources are not keeping pace with the rising demand for family care. Caregivers overwhelmingly support tax credits (69%), paid leave (55%), and programs that pay family caregivers (68%). Almost 40% say respite services would be helpful.

The report calls for immediate, sustained action in policy and practice — from expanding paid leave and respite services to ensuring financial, emotional, and training supports reach the caregivers who need them most.

What’s New in AARP/NAC’s 2025 Caregiver Report?

What is new in the 2025 report?  According to AARP, state-level data will now be available, with a separate state report to be released in Fall 2025.  Also, for the first time, information is now available to characterize the more than 11 million “paid family caregivers” who participate in caregiver payment programs, such as the Medicaid home and community-based (HCBS) self-direction waivers.  And more data on the caregiver experience is available on care coordination and use of other caregiving help, via an expanded Level of Caregiving Complexity Index, in the latest caregiver report.

A final note…

The caregiving crisis is not a partisan issue—it’s an American issue. With over 63 million caregivers anchoring the nation’s health and long-term care systems, Congress and state leaders from both sides of the aisle must rise to meet the changes of this moment. Whether through expanding paid leave, offering targeted tax credits, strengthening Medicaid, or investing in caregiver training, there is broad public support for common-sense solutions. With the release of the 2025 Caregiver Study, AARP and NAC have delivered strong evidence; now it’s time for policymakers—both Republican and Democrat alike to act swiftly—to come together to this Congressional session to craft durable, bipartisan reforms that recognize caregivers not as an afterthought, but as the backbone of our communities.

The Caregiving in the U.S. 2025 survey used a nationally representative, probability-based online panel from IPSOS. The study surveyed 6,858 caregivers aged 18 or older who had provided care for an adult relative or friend 18+, or a child with a complex medical condition or disability within the past 12 months.

The 2025 study was funded by AARP, Pivotal, The Ralph C. Wilson, Jr. Foundation, Novo Nordisk, Genworth, New York Life, Home Instead, Archstone Foundation, The John A. Hartford Foundation, and Mass Mutual.

LINKS to resources – click on the hyperlink to be taken directly to the report:

To get a copy of Caregiving in the U.S. 2025

To watch the AARP-NAC Press Briefing

For more information about the report and – Caregiving in the US

Breaking Downing Caregiver Profiles 

For African American/Black Family Caregivers

For Hispanic/Latino American Family Caregivers,

For Asian American, Native Hawaiian, and Pacific Islander Family Caregivers

For LGBTQ + Family Caregivers

For Rural Family Caregivers

For Lower-Income Family Caregivers

For Family Caregiving by Gender

For High-Intensity Family Caregivers

For Younger Family Caregivers

For Family Caregivers with Disabilities

Fogarty, Senior Advocates to Rally for Increased Funds for State’s Co-Pay Program

Published in Pawtucket Times on March 22, 2004

Research is just beginning to show what Rhode Island aging advocates already know – that more assistance is required for helping the disabled and seniors to reside independently in their homes in the community.

According to researchers at the Disability Statistics Center at the University of California at San Francisco, about 3.3 million community-residing adults who require assistance with two or more activities of daily living (ADLs) need help from another person.

Of these, almost one million people need increased care, more than they are receiving – particularly those who live alone.

ADLs include bathing, dressing, getting into or out of bed or a chair, toileting, eating and other activities that are required to maintain their homes, such as shopping and preparing meals.

This study, published in the March issue of The Journal of Gerontology: Social Sciences, is considered to be the first to estimate the level of care required to help people.

“Individuals who need personal assistance with two or more of the five basic ADLs [mentioned above] and whose needs are unmet, have a shortfall of 16.6 hours of help per week,” said lead author Dr. Mitchell P. LaPlante.  Joining him on the project were Drs. H. Stephen Kaye, Taewoon Kang, and Charlene Harrington, in a written statement.

Among adults whose assistance needs are not fully met, people living alone fare worse than those who live with others, the researchers said. The study found those living by themselves receive only 56 percent of the help they need, while those living with family members or friends receive 80 percent of the hours of help, they need.

The research findings indicate that having unmet needs is linked with numerous adverse consequences, including discomfort, weight loss, dehydration, falls, burns and dissatisfaction with the help they do receive.  This puts these people at risk of being forced to leave their homes and move into costly nursing facilities.

Additionally, the University of California at San Francisco study also reported that unmet needs among people living alone are more an issue for the elderly, since two-thirds of those living alone and needing more help are age 65 or older.

This research study, probably the first of may to come that estimates the assistance required by the nation’s disabled and elderly, should be delivered to the doorstep of Gov. Donald Carcieri and every state lawmaker.

Even with the graying of the Ocean State’s population, the governor and the Rhode Island General Assembly are moving too slow to adequately fund less costly community-based care programs.

Carcieri has given an additional $ 200,000 in funding to the Department of Elderly Affairs (DEA) co-pay program in his recently released proposed 2005 budget.

While appreciative for this increase in funding in the showdown of the state’s huge budget deficit, senior advocates say this is not enough to keep people off the waiting list for this worthy program.

DEA’s co-pay program keeps 1,500-plus low-income frail seniors who do not qualify for the state’s Medicaid program but who require ongoing services to remain in the community in their homes by providing a little bit of funding for certified nursing assistants (for assisting with bathing, meals, shopping, laundry, and light housekeeping). And DEA’s co-pay program also provides subsidies for adult day care.

Last October, a DEA freeze on new admissions to the co-pay program left 200 frail seniors on a waiting list for home and community-based care, said senior advocates.

According to the state’s Long-Term Care coordinating Council (LTCCC), the typical person in DEA’s co-pay program is between ages 65 and 104, with the average age being 84. Most are women and more than half live alone. Without the state’s co-pay, these seniors will have to pay the entire fee for their care –    which they cannot afford – or enter a nursing home, or go without the help they need to do simple things such as bathing, shampooing and dressing.

Susan Sweet, a consumer advocate  who sits on the LTCCC, expressed concern that a DEA freeze – putting the copayment program on hold – for those on the waiting lists still exists this fiscal year.

“These people have been waiting a long time to get the home care or adult day care services that they need. I am afraid that waiting longer will result in many of them entering nursing facilities prematurely,” said Sweet.

Sweet noted Carcieri’s proposed 2005 allocates an additional $ 200,000 in funding for next year’s DEA’s co-pay program.

“It will take more funding than that to take care of the frail seniors still left on a waiting list,” Sweet charged, noting that DEA Director Adelita S. Orefice, did say another $ 250,000 would be needed in FY 2005 to meet DEA’s co-pay program demand.

Lt. Gov. Charles J. Fogarty, who is chairman of the LTCCC, will join senior advocates today at 11:00 a.m. at the Statehouse, calling for the state to reopen admission to a state-funded co-pay program that helps limited-income seniors pay for home and community-based care.

The press conference is expected to draw several family caregivers and representatives of AARP-RI, Choices Coalition, Respite Services, R.I. Adult Day Care Services Association, Alzheimer’s Association of R.I., R.I meals on Wheels, R.I Partnership for Home Care, R.I. Senior Center Directors Association, Senior Agenda Consortium and the Silver-Haired Legislature.

“Freezing the DEA co-pay program is a fiscal folly,” Fogerty said in a written statement obtained by All About Seniors that will be released at today’s rally.

“It is shortsighted from both a financial and a human perspective. It is not as if this freeze will result in overall cost savings,” said the Lt. governor.

Fogarty said this freeze was ordered to avoid having the DEA spend more than what was budgeted for the program in the current fiscal year – an amount that was less than what was spent on the program in FY 2003.

At this rally Fogarty will call for the state to provide adequate funding in the FY 2005 budget for DEA’s co-payment program to address the unmet need.

“To the contrary,” Fogarty said, “it may wind up costing taxpayers much more, because these seniors are still going to need care and they’re going to get by being forced into nursing homes where the taxpayers will pay tens of thousands more than we would have paid for the co-pay program.”

According to Fogarty, in FY 2003, the state supported 1,457 seniors in the program, spending $ 3,650,117, or $ 2,505 per senior. That’s less than 1 percent of all long-term care spending. Contrast this, he said, in is written statement, with the annual cost per nursing home resident – between $ 32,000 and $ 53,700 (this figure excludes the average 20 percent patient contribution to care and includes state and federal dollars).

Fogarty said, “It boggles the mind that in tight budget times, we would opt for the more expensive solution – especially in light of the fact that the less costly option of keeping seniors in their homes is the most humane option.”

As mentioned in a previous column, there is also a freeze and waiting list for the state’s respite program, which provides assistance to family caregivers. This freeze continues and no additional funding has been allocated for this program in Carcieri’s proposed 2005 budget.

Carcieri and state  lawmakers must not continue to put patches on the state’s old dilapidated long-term care deliver system. As I previously mentioned, now is the time to tackle the thorny issues of long-term care and its rising costs.

Rhode Island must move to create a long-term care delivery system that will adequately provide funding for keeping seniors independent in the comfort of their homes while adequately providing reimbursement to nursing facilities that take care of sicker patients.

Seniors can support Fogarty’s call for adequate state funding for DEA’s co-pay program by attending the rally scheduled today at 11:00 p.m.at the Statehouse.

Meanwhile a DEA budget hearing will be held before the House Finance Committee later in the afternoon, at 1:00 p.m. in Room 35 of the Statehouse.

Seniors can attend this hearing to give their support for increased state funding for community-based care long-term programs. Testimony taken from the public will be televised on the state’s access cable channel.