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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

National Groups Call for Making Pneumonia Vaccines Available to Age 50 and Over Adults

Published in RINewsToday on October 21, 2024

Within days, a loose coalition of 21 advocacy groups are pushing for the Centers for Disease Control and Preventions (CDC)’s Advisory Committee on Immunization Practices (ACIP), which meets on Oct. 23 and Oct. 24, to lower the routine age-based recommendation for all pneumonia vaccines to age 50. 

These groups, working on behalf of millions of older Americans, immunocompromised, underserved patient populations and consumers, see the value of increasing the accessibility of effective vaccines for respiratory viruses. 

 ACIP’s October agenda may include a vote on lowering the routine, age-based recommendation for pneumonia vaccines to add those ages 50 to 64 to the existing two groups in the age-based recommendation, those under 5 and over 65.

 According to Bob Blancato, Executive Director of the National Association of Nutrition and Aging Services Programs (NANASP), CDC typically holds three ACIP meetings each year with one occurring in February, one in June and one in October. “The upcoming meeting is especially critical because we are right in the middle of respiratory season, so any change they make to their recommendation can greatly benefit older Americans while the threat of pneumonia is very much still circulating in our environments,” he says.

“Also, just given the fact that there are only three meetings a year, it is important that the committee take the opportunities to improve policies during each meeting so we aren’t further restricting access to protections that so many in our population will benefit from,” adds Blancato.

This coalition, composed of aging, consumer, health and multicultural advocacy groups, calls for federal policies that support the well-being of older adults that remove barriers to accessing innovative and effective vaccines, given the real benefits they offer in preventing serious health outcomes, says Blancato.

 Preventing Pneumococcal Disease in Adults

According to CDC, pneumococcal pneumonia, meningitis, and bloodstream infections (sepsis) kills tens of thousands older Americans each year, including thousands of older adults age 54 and over.

CDC estimates that 150,000 older Americans are hospitalized with pneumococcal pneumonia each year.  About 1 in 20 individuals who get pneumococcal pneumonia will die.  The death rate is higher for those individuals age 65 and older.

Persons surviving pneumococcal meningitis can suffer from hearing loss, seizures, blindness, and paralysis, says CDC.  For those afflicted with pneumococcal bloodstream infections, treatments require hospitalization, often requiring weeks or months of treatment before returning to normal activities.

Getting conjugate and polysaccharide pneumococcal vaccines can reduce a person’’s chance of contracting or dying from pneumococcal disease, notes CDC.

 Protecting the Older At-Risk Ethnic Population

 The Oct. 15 letter to ACIP, co-authored by the National Association of Nutrition and Aging Services Programs (NANASP), National Caucus and  Center on Black Aging (NCBA) and the National Hispanic Council on Aging (NHCOA), stated that lowering the age would increase vaccination rates for at-risk ethnic populations.  Over 53 percent of Black, 41 percent of Hispanic, 50.2 percent of Asian Americans have been vaccinated for pneumonia, compared to 69 percent of White adults, noted the correspondence. It also stressed that by offering a vaccine to persons ages 50 to 64, who experience a decline in their immune system, would receive protection while their immune systems are still able to produce a robust response.

 “It has been over three years since ACIP first presented data at the June 2021 meeting showing that lowering the age-based recommendation would improve vaccine equity,” said NANASP’s Blancato. “There is no reason to delay this further,” he says.

“Too many Black and Hispanic individuals face chronic illnesses like diabetes, heart disease and cancer, due to lack of preventable health care early in life. Far too many are already sick by the time they are currently eligible for pneumococcal vaccinations,” said Yanira Cruz, President and CEO of the National Hispanic Council on Aging (NHCOA), “Getting more adults in these populations vaccinated at a younger age is a great step forward in vaccine equity”.

“I’ve had pneumonia and it knocked me out for nearly three months,” said Karyne Jones, President and CEO of National Caucus and Center on Black Aging (NCBA). “I contracted the disease when I was 64 – I know first-hand the value of getting younger people vaccinated against this deadly disease.  I ask members of ACIP to fully support lowering the recommendation to age 50 for all adults for all available pneumococcal vaccines.”

In addition to the group letter, an online petition organized by NANASP has garnered more than five thousand signatures from Americans across the nation.

“As we begin the respiratory disease season, our policies should be about promoting protection versus limiting across to vaccines.  The support for lowering the age-based recommendation is clearly there so now is the time for ACIP to act,” continued Blancato.

If ACIP lowers the recommended age of providing vaccinations to persons age 50 and over, commercial plans and Medicaid would be mandated to cover its cost.  Medicaid plans would be required cover the costs for low-income recipients as soon as the recommendation is approved by the CDC Director – like for Medicare Part D plans.

By offering coverage of pneumococcal vaccinations, to persons ages 50 to 64, would offer critical protections to these individuals before their immune system wanes.  This cost-effective approach would reduce serious illness, ultimately reducing hospitalization and death. 

The CDC should streamline and lower the age recommendations for routine pneumococcal vaccinations, starting at age 50.  It’s a no-brainer decision. 

Here is a listing of groups signing correspondence to CDC’s Advisory Committee on Immunization Practices: National Association of Nutrition and Aging Services Programs; National Caucus and Center on Black Aging; National Hispanic Council on Aging; Alliance for Aging Research; ALS Association; American Public Health Association; American Society on Aging; COPD Foundation; Generations United; HealthHIV; HealthyWomen; National Alliance for Caregiving; National Consumers League; National Grange; National Hispanic Health Foundation; National Minority Quality Forum; Sepsis Alliance; The American Society of Consultant Pharmacists; USAging; US Black Chambers, Inc.; and Vasculitis Foundation.

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