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 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 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

Expanding Medicare on political agendas: In-home Health Care critically important

Published in RINewsToday on October 14, 2024

This week Vice President Kamala Harris unveiled a “Medicare at Home” proposal on ABC’s The View that would expands Medicare to assist older Americans to age in place at home by covering some of the cost of in-home care. The proposal targets adults who are part of the ‘sandwich generation,’ estimated to be 105 million Americans who are raising children along with taking care of their elderly parents.

The Medicare benefit to assist caregivers would propose to have cost-saving benefits for the federal government by allowing seniors to stay at home rather than being sent to costly nursing homes. It would also reduce hospitalizations, too.

Harris told about her personal experience as a caregiver, providing care to her mother, Shyamala Gopalan, a biomedical scientist, who died of cancer in 2009 at the age of 70. Caring for a parent can translate into “trying to cook what they want to eat, what they can eat,” she said. “It’s even trying to think of something funny to make them laugh or smile,” she added.

“We’re talking about declining skills” of older people, “but their dignity, their pride, has not declined,” Harris added.

“There are so many people in our country who are right in the middle. They’re taking care of their kids and they’re taking care of their aging parents, and it’s just almost impossible to do it all, especially if they work,” Harris said.  “…we’re finding that so many are having to leave their job, which means losing a source of income, not to mention the emotional stress,” she said, explaining why there is a need to expand Medicare to cover more in-home care services.

Harris’ Issues on her website – Protect and Strengthen Social Security and Medicare

“Vice President Harris will protect Social Security and Medicare against relentless attacks from Donald Trump and his extreme allies. She will strengthen Social Security and Medicare for the long haul by making millionaires and billionaires pay their fair share in taxes. She will always fight to ensure that Americans can count on getting the benefits they earned”.

The Costs

The Brookings Institution recently estimated that a “very conservatively designed” program would cost $40 billion a year. They noted that “controlling demand in such a program is nearly impossible – for reference, Medicaid, which covers far fewer adults than Medicare, actually spent $207 billion on long-term services and supports in 2021”.

In addition, “Home health is such a hotbed of fraud,” said Theo Merkel, a health policy expert at the Paragon Health Institute and the Manhattan Institute. “If the proposal is adopted, taxpayers could end up paying for everyone who stays at home with their Medicare-eligible family member as a government paid Service Employees International Union member.”

The Cato Institute, a libertarian think tank headquartered in Washington, D.C., charges that Harris’ new Medicare home care benefit is “uncompassionate, fiscally reckless, and a corrupt attempt to buy the votes of Medicare enrollees and their middle-aged children in an election year.”

Examining the Differences…

According to Matthew E. Shepard, Communications Director for the Center for Medicare Advocacy, the new Harris proposal is quite different from the existing home care benefits that Medicare’s 65.5 million enrollees receive. ”The new proposal focuses on Long Term Services and Supports, something of a term of art in the health care world. While details are scarce, it would provide, we believe, ongoing affordable home care aide service without a need for skilled care or that strict definition of homebound,” said Shepard.  The proposal’s funding would come from increased savings in Medicare Part D as the list of negotiable drugs grows  [a historic provision of the Inflation Reduction Act which is lowering the cost of senior’s medication]  savings currently estimated at $6 billion in 2026, and which will only grow as more drugs are added, he noted.

“We are going to save Medicare that money, because we’re not going to be paying these high prices [for drugs] and that those resources are then put to use in a way that helps a family,” Harris said.

The Trump proposal

The Trump/Vance campaign quickly issued a statement taking credit for already making a commitment to America’s seniors receiving at-home care, saying that Harris’ Medicare expansion policy was just following his lead. Former President Trump released his home care platform last summer, according to an Oct. 8th statement. “Specifically, President Trump will prioritize home care benefits by shifting resources back to at-home senior care, overturning disincentives that lead to care worker shortages, and supporting paid family caregivers through tax credits and reduced red tape,” noted the statement.

One of Trump’s 20 point platforms is “Fight for and protect social security and Medicare with no cuts, including no changes to the retirement age”. In the accompanying 16-page document, which, supports Medicare it says, “President Trump has made absolutely clear that he will not cut one penny from Medicare or Social Security. American citizens work hard their whole lives, contributing to Social Security and Medicare. These programs are promises to our Seniors, ensuring they can live their golden years with dignity. Republicans will protect these vital programs and ensure Economic Stability. We will work with our great Seniors, in order to allow them to be active and healthy. We commit to safeguarding the future for our Seniors and all American families. We will strengthen Medicare. Republicans will protect Medicare’s finances from being financially crushed by the Democrat plan to add tens of millions of new illegal immigrants to the rolls of Medicare. We vow to strengthen Medicare for future generations.”

 Dementia caregiving already set to quadruple in 2025

AARP notes on their website that one expansion of caregiver coverage, “a program for dementia patients and their caregivers that launched this year will quadruple in 2025, serving more of the country. The program, called Guiding an Improved Dementia Experience (GUIDE), provides a 24/7 support line, a care navigator to find medical services and community-based assistance, caregiver training and up to $2,500 a year for at-home, overnight or adult day care respite services. Patients and their caregivers typically won’t have copayments”.

Praise for expanding Medicare benefits

“We have long championed the expansion of federal support for long-term care,“ says Max Richtman, President and CEO, National Committee to Preserve Social Security and Medicare (NCPSSM), noting that Harris’ proposal gives that cause an enormous boost.

“Expanded Medicare coverage for home health care also would provide relief to millions of ‘sandwich generation’ Americans, who are struggling to provide care for their elderly relatives while also raising children.  Those ‘sandwich generation’ members are not Medicare beneficiaries, but would most definitely benefit from Harris’ long-term care plan,” says Richtman in an Oct. 8 statement.

According to Richtman, the plan also would add hearing and vision coverage to traditional Medicare. “Proper hearing and vision care are essential to healthy aging — but too many beneficiaries forgo it due to cost and lack of coverage. It is long past time that those coverages be added,” he added.  

Co-Director David Lipschutz says that the Center for Medicare Advocacy (CMA) strongly supports the proposed enhancement of Medicare coverage for on-going home care. “Access to services and supports in the home for those who are unable to independently perform activities of daily living would provide immeasurable help to millions of beneficiaries and their families and is an important step forward for the Medicare program,” says CMA’s Lipschutz. To maximize access to care for people who need it, expansion of home care coverage in Medicare should be combined with enforcing the benefit that exists now, he suggests. 

“Recognizing that most older persons and those with disabilities prefer to remain at home when they need help with daily living tasks, the Senior Agenda Coalition has worked for years to increase access to home and community-based care at the state level as these services are one of the biggest gaps in Medicare,” says Maureen Maigret, Policy Advisor for Senior Agenda Coalition of RI.  To include them in Medicare will lift a financial burden on both recipients and family caregivers as home care costing at least $35/hour that  can be out of reach for far too many who need these services to stay at home,” she says.

“We have not seen many details about the plan, but it would be important to make sure that Medicare provider reimbursement levels are sufficient to allow direct care staff to earn livable wages in order to have workforce sufficient to meet the demand,” note Maigret. “This new Medicare home care benefit should also be a boon for states as it can prevent persons from spending down their resources to a level where they become eligible for state Medicaid and need costly nursing home care,” she says.  

In a new paper for O’Neill Institute for Georgetown LawMcCourt Professor Judith Feder and Nicole Jorwic explore how adding a home care benefit can help beneficiaries and family caregivers. “While this new benefit would not reach the full population in need of long-term care, paired with investments in Medicaid, it’s a good strong start-and given our nation’s resources, clearly within our means,” say the authors. 

“A support system that relies on unpaid family members and underpaid workers is simply not sustainable for the future,” warn the authors.

“Our failure to make Medicare “whole” by addressing Long Term Services and Support needs is not about a shortage of resources, it’s about a shortage of political will. It’s time the nation stepped up,” they say.

Pay attention to Caregiver voters

AARP is nonpartisan and does not take a position on campaign proposals, though AARP has previously said financial relief is needed to help individuals age in place at home and support family caregivers, says Sarah Lovenheim, AARP’s vice president, external relations.

According to AARP’s “She’s the Difference” survey released last month, 96% of woman aged 50 and over say they are highly motivated to vote in the upcoming elections, making them one of the most driven and key voting groups.

“Any political candidate would be wise to pay attention to the concerns and needs of caregivers today. Voters over age 50, who disproportionately make up America’s 48 million plus caregivers, could make or break elections up and down the ballots,” says Nancy LeaMond, AARP’s executive vice president and chief advocacy and engagement officer. “From recent battleground polls, we know that roughly one-third of swing voters over age 50 identify as family caregivers,” she notes.

“Supporting family caregivers is an urgent need – not only for families struggling to get by but for our country’s future,” warns LeaMond.

Regardless of who wins the election, a Medicare at home proposal cannot happen without Congressional support. As the presidential campaign winds down, older voters must make it extremely clear to lawmakers seeking their vote how they feel about expanding Medicare benefits.  

Tale of Two Caregivers

Published October 5, 2012, Pawtucket Times

           Being a caregiver to an older parent while raising children has now become the new rite of passage for aging baby boomers who, by the millions, are moving into their middle age years and beyond. Often called the sandwich generation for having care responsibilities at both ends of the age spectrum, these individuals become emotionally challenged, physically drained in their attempts to cope and juggle a multitude of tasks.

             According to National Alliance for Caregiving and AARP, more than 65 million persons, 29% of the nation’s population, provide care for a chronically ill, disabled, older family member or relative during any given year. The caregiver spends an average of 20 hours per week providing care for their loved ones.

 Taking on New Care giving Responsibilities

           Over seven years ago, Catherine Taylor, 51, the State’s Director of the Department of Elderly Affairs, and her husband, Rob, a practicing attorney, found themselves thrust into this new very demanding role with huge responsibilities. Like many others, the couple took on the demanding role of being caregivers of an elderly parent while juggling the intense domestic demands of taking care of four children, whose ages ranged from 3 years old to age 15.

           The Providence couple was now sharing the care of a very independent 83-year-old widow, who at that time resided in her home in Connecticut, one that she had designed. The older woman still continued to practice as an architect until her health began to rapidly steep decline.    

          In 1995, “We moved her back to Rhode Island six months before she died when she became too infirm to live independently in her home,” remembered Catherine.  

        Catherine wanted her mother-in-law to move in with her family, “but she was just too independent for that,” she said.  Her husband’s mother would ultimately choose to live out her final days in an apartment at a senior living facility on Providence’s Eastside, near the Taylor’s home. 

         As is the case with many caregivers who relocated their loved ones to live close by, packing, scheduling the move, and getting the Connecticut house ready for sale became the first chore of being a caregiver, notes Catherine.   

         According to Catherine, becoming a caregiver while working and raising a large family was incredibly hectic. “Many times we had to be in two or three places at one time,” each day.  Catherine adjusted her work schedule to help her mother-in-law with activities of daily living such as dressing, assisting in going to the bathroom, and feeding, take her to the emergency room or stay with her in the hospital, while wanting to be at home cooking her family dinner, and helping her children do their homework.

 Tips on Coping for Caregivers

            The couple juggled their roles as parents, caregivers and employees as best they could.  For instance, “our oldest child would be charged with watching his younger siblings”, Catherine says.  When visiting her mother-in-law to cook and assist her with eating, Catherine brought the youngest along to the senior living facility, and placed him in a portable playpen next to the kitchen table. Catherine, her husband and his sister, would divvy up cooking chores, each one take responsibility for making either breakfast, lunch or dinner.

           Supplemental care, provided by a home health aide, was especially needed when the aging baby boomer couple had to be at work.   

          While taxing for the entire family, care giving did have a positive impact on Catherine’s children.  “It really impressed on them how our family pulled together,” she said, noting “that it made them feel useful because they had specific jobs to perform to keep the family running.”    

           When asked if she got enough respite care for herself, Catherine quipped, “I never get enough!”  She added, “For us being part of a large nuclear family, also having a large extended family, we were able to trade off with each other.  But a lot of people don’t have that option,” she notes.  One of the hardest things about being a primary caregiver is how alone you can feel, Catherine said. “You’re living a different life from most other people.  You watch other families make snap decisions to go to the movies, and just hop in their car and go.  For you to do the same thing, the logistics tend to be like the invasion of Normandy.  You just have to go through so much organizing to have simple pleasures that other people don’t think twice about”.

          “Most family caregivers look like they are doing fine and think they are doing fine, but family, friends and neighbors, and sometimes community agencies, need to check in and give them a break so they care recharge their batteries.”

          Catherine suggests that caregivers maintain their relationships with friends and colleagues as hard as that is to do so they will look in on you, stop by for coffee, bring you dinner and help recharge you.  “This will allow you to keep doing your care giving job with love.”

 Double Duty as a Caregiver

          Sixty-four-year-old, Kathy Heren, Rhode Island’s Long-Term Care Ombudsman, a licensed practical nurse and caregiver, and her husband, John, 63, a chef, slipped into the care giving in the mid-1990s, watching out for two elder family members at the same time, a 72-year- old mother and her 78-year-old uncle.

          Both frail relatives (one had dementia and the other a heart condition) lived independently in their homes located in East Providence and on the Eastside. “Being Irish, they were both very stubborn in accepting assistance,” the aging advocate remembered. While professionally helping others cope with care giving and long-term care issues, Rhode Island’s Ombudsman had to carve out time to personally perform chores for her two frail family members. Chores included shopping, paying bills, and cleaning their houses.   Scheduling and transportation to doctor appointments and med management took additional time away from her very demanding job and family duties.

            When dealing with her Mother’s finances became just too difficult, Kathy, along with her sister, filed for guardianship.  “If you realize that there are some things you just can’t control, then seek outside services or assistance,” she recommended.  

           “Depending on personality of the person you are taking care of you may have to just step away from being a caregiver, if it impacts on your health,” she says.  “It may become the right time to turn to a nursing home or home care services, to take care of your frail family member.”

           “Make sure you turn to respite care if needed because it is always available”, Kathy suggests.  “You need to know when to seek out this assistance and go on a trip to recharge your batteries. When taking care of your loved one, do not forget your own health, family, or nutrition,” she says. .

 Seeking Respite Care Programs

             Rhode Island will receive $250,000 under the federal Lifespan Respite Care Act to support families caring for aging or disabled individuals with special needs, increasing access to short-term, or respite care. This relief offers family members temporary breaks from the daily routine and stress of providing care to loved ones with special needs.

             You can get information about respite care programs and resources available to care givers by calling by calling the Rhode Island Department of Human Services, Division of Elderly Affairs at (401) 462-3000, or you can go to www.dea.ri.gov. TTY users can call (401) 462-0740.

             The Rhode Island State Ombudsman, at the Alliance for Better Long-Term Care, monitors the quality of the Rhode Island’s nursing homes, assisted living facilities, home health agencies and hospice services, and address issues of elder abuse, guardianship, neglect and financial exploitation.  For more information, call  (401)785-3340.

             Herb Weiss is a Pawtucket-based freelance writer covering aging, health care and medical issues.