Category Archives for Caregivers

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

Surviving, even thriving, when caring for a person with Alzheimer’s

Published in RINewsToday on March 3, 2025

Last Wednesday, Colleen Kelly Mellor, author and former feature writer for the Providence Journal, captivated a crowd at the Coventry Library with a talk about her caregiving journey. In her inspiring presentation, Mellor shared how she not only survived but thrived while caring for her husband, who suffers from Alzheimer’s disease.

Mellor, 79, has had a multifaceted career—raising two daughters, teaching school for over 30 years, and working as a realtor for nine years. The prolific writer is no stranger to seeing the devastating impacts of Alzheimer’s. Her father, two brothers and two cousins died of the cognitive disease.  And for the past 15 years, she has been her husband’s primary caregiver. For 13 of those years, she single-handedly managed his care, from ensuring he attended doctor’s appointments to overseeing his medications.  

This journey led her to write her latest book, Az and Me: A Partner’s Journey with Alzheimer’s.

The 284-page book, published last May, is a must-read for America’s caregivers. “The caregiving journey was so demanding, I felt compelled to write a book about what I learned—something that could help others,” Mellor explained. “I want to make sure they don’t repeat the mistakes I made, especially when I was uninformed, like not knowing about veteran benefits.”

What is the core message of Az and Me? Mellor stresses the importance of caregivers taking care of themselves. “Caregivers need to prioritize their own well-being, just like the airlines say: put the mask on yourself first, then on your child,” she says, adding that her book provides caregivers with the tools they need to do just that.

The Caregiver Journey Begins

“You can step out of the wreckage of your life’s journey,” Mellor encourages. “Keep stepping forward—even when you don’t want to and can’t see any change for the better. It will come if you persist.”

Mellor knows firsthand what that perseverance looks like. She admits that when her partner, Paul Wesley Gates, was first diagnosed with Alzheimer’s, she was unsure of what it truly meant to be a caregiver. But her message to caregivers, shared during last week’s library talk, was clear: find your footing and keep moving forward.

Mellor acknowledges that she paid the price for being uninformed. “I was one of those caregivers,” she says. Seven years ago, Mellor suffered a herniated disc and became disabled. At that time, she had no support system in place to help care for her husband, a 20-year career military veteran with Alzheimer’s. As she received medical treatment, she had to bring Paul to her appointments and medical tests because she had no support. “I prayed he’d still be sitting in the waiting room when I came out,” she recalled. During this period, Mellor had to place her husband in a care facility for a brief time. The cost? $8,000. Despite initially planning to keep him there for a month, Mellor pulled him out after just four days. The services promised to her were never delivered.

Through this experience, Mellor learned a valuable lesson: the importance of understanding available benefits. “I was paying full price for day care when I could have used my husband’s veteran benefits, which would’ve covered three of the four days,” she said. “No one—no doctor, social worker, or even facility—told me about the benefits he was entitled to,” Mellor added. “He could have stayed at a Vet-approved facility for free because of his military service, and I could have received respite care.”

For the past two years, Mellor has been visiting Paul, now 83, at the Veterans Home in Bristol. She and Paul married at her daughter’s home in East Greenwich last December so that, according to federal rules, she could be buried with her husband in Rhode Island’s Veterans Memorial Cemetery.  

A Guide for America’s Caregivers

Mellor is an advocate at heart, which is reflected in all of her self-published books. “I’m an advocate for people,” she says. In her children’s books, Grandpa and the Truck (Books 1 & 2), Mellor highlights the important role of truckers in our daily lives. In Boomerrrang, her real estate background shines through as she cautions people about buying and selling property. And in Az and Me, she champions the cause of caregivers and veterans.

Her Alzheimer’s book is easy to read, with super short chapters (just 1-2 pages). It’s meant to reach out to caregivers and share her journey, as well as provide practical tips to avoid the mistakes she made. Through her book and group presentations in Rhode Island, Connecticut, and Massachusetts, Mellor helps caregivers avoid pitfalls while navigating the demanding role of care provider.

Mellor shares snapshots of her and her husband’s life, highlighting the challenges they faced and offering practical strategies she used to cope with the stresses of caregiving. In her book, she explains how to determine eligibility for Veterans’ benefits and what those benefits cover. She also advises hiring a certified elder law attorney if needed, someone who understands the complexities of Medicaid eligibility, nursing home admissions, Medicare, Social Security, guardianship, and estate planning.

In her book, Mellor offers several practical tips for managing the challenges of caregiving. For example, when caring for someone with short-term memory loss, she suggests dressing your loved one in bright, easily visible colors. This makes it easier to spot them if they wander. She also recommends giving them a fake handbag or billfold, rather than the real deal, so you can easily access important medical documents. Mellor also shares tips on how to handle tough decisions, like when it’s time to take away the keys to the car. It’s one of the hardest decisions, she admits, but it’s necessary when it’s no longer safe for them to drive.

She advises caregivers to join an Alzheimer’s support group, choose a doctor they feel comfortable with, and divide caregiving responsibilities among family members. “A son can take Dad to his regular haircut appointment, then they can go out for lunch,” Mellor suggests.

Finally, she encourages caregivers to find moments of humor throughout the experience. “Laughter can be a lifesaver,” she says.Mellor likens her book to a box of chocolates: some pieces are sweet, others not so much—but all are essential. “There’s humor in it because my mission is to help caregivers cope and even thrive, not just survive,” she says.

In the end, Mellor sees Az and Me as a love story—one that shows how she and her husband found joy, even in the face of his debilitating disease.

To purchase Az and Me: A Partner’s Journey with Alzheimer’s ($20) or for more details about scheduling a speaking engagement, go to colleenkellymellor.com or call 401-480-3403.  

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It’s now time for Congress to give tax credits to America’s caregivers

Published in RINewsToday on February 24, 2025

Just a few days after the 119th Congress was sworn in on Friday, January 3rd, AARP, along with 94 organizations, sent a letter to Congress urging lawmakers to enact legislation to provide financial relief for America’s caregivers. This could be accomplished by including the bipartisan bicameral Credit for Caring Act of 2024 (S. 3702/H.R. 7165 introduced in the 118th Congress) in any tax legislation that is advanced during the new Congress, says the joint letter.    

S. 3702/H.R. 7165, introduced during the last session of Congress by Sen. Michael Bennett (D-Colorado) and House lawmakers Mike Carey (D-Ohio), would allow an eligible caregiver a tax credit of up to $5,000 for 30% of the cost of long-term care expenses that exceed $2,000 in a taxable year. The bills defined eligible caregiver as an individual who has earned income for the taxable year in excess of $7,500 and pays or incurs expenses for providing care to a spouse or other dependent relative with long-term care needs. 

The joint letter, dated Jan. 7, 2025, stressed that family caregivers make it possible for older adults, people with disabilities, and veterans, to live independently in their community and age in place at home.  It also cited an AARP study that found caregivers provided $600 billion annually in unpaid labor in 2021 to care for their loved ones. (This figure is based on about 38 million caregivers providing an average of 18 hours of care per week for a total of 36 billion hours of care, at an average value of $16.59 per hour). 

Caregivers take a hefty financial hit, too, having to cover out-of-pocket expenses associated with caregiving and losing income by cutting back on work hours or leaving the workforce entirely. When this occurs these individuals would see reduced Social Security and retirement savings by receiving reduced Social Security and other retirement benefits, noted the organizations in the correspondence. 

The joint letter also mentioned an AARP study that reported family caregivers spend on average, 26 percent of their income on caregiving expenses or over $7,200 annually. The uncompensated care saves taxes payers billions of dollars by delaying or even preventing admission to costly nursing home care and unnecessary hospital stays.  

The joint letter suggested that any tax legislation consider include a new, non-refundable tax credit of up to $ 5,000 for eligible working family caregivers would reduce the significant financial impact of caregiving.  Eligible caregivers caring for loved ones of all ages could receive the credit if the care recipient meets certain functional or cognitive limitations or other requires.  This tax credit would help working family caregivers regardless of whether they live with their loved one or if their loved one is a dependent. 

Overwhelmingly support for tax relief for caregivers 

A newly released AARP poll findings indicate that voters in competitive congressional districts want Congress to give financial relief to America’s family caregivers. The poll, conducted in late Jan. 2025, highlights a “clear, bipartisan mandate” say prominent pollsters from Fabrizio Ward and Impact Research. 

The bipartisan polling team conducted this survey of 3,000 registered voters nationally and 1,000 voters in the 28 most competitive House districts between January 27 and February 1, 2025. According to AARP, the districts chosen were the 15 Republican-held districts won by <5% of the vote in 2024, and the 13 Democratic-held districts that were also won by President Trump in 2024. The margin of sampling error for the national survey is ±1.8% and ±3.1% for the congressional districts survey.

The AARP poll findings reveal overwhelming voter support (84%) for Congress and the Trump Administration to act this Congress on a caregiver tax credit. Among various tax proposals currently being considered by Congress — including eliminating income taxes on Social Security, tips, and overtime pay—voters ranked passing a caregiver tax credit as their top priority. 

“America’s family caregivers put family first, helping their parents, spouses and others stay at home. They spend thousands of dollars every year on this care, while juggling work and family responsibilities,” said Nancy LeaMond, AARP Executive Vice President and Chief Advocacy & Engagement Officer in a statement released on Feb. 11, 2025 announcing the results of AARP’s poll. “Without them, millions of older Americans would be forced into costly nursing homes—many at taxpayer expense. As Congress debates tax policy, the message from voters is clear: lawmakers must prioritize financial relief for hardworking Americans who are caring for their aging family members. AARP urges Congress to put money back into the pockets of hardworking family caregivers by passing a tax credit,” she says.  

Bipartisan

The poll findings indicate that support for the caregiving tax credit spans party lines, with strong majorities of Republicans (84%), Independents (82%), and Democrats (87%) in favor.  And support for a caregiver tax credit (84%) outpaces support for continuing the 2017 tax cuts (51%).  

Seventy-six-percent of voters agree that “Before Congress extends any tax breaks for the wealthy and corporations, it should support working Americans with a tax credit to help cover the expenses of taking care of a loved one.”  

Family caregiving crosses party lines, with nearly two-thirds of voters (63%) serving as family caregivers at some point in their lives—many of whom struggle financially. 

Most voters (63%) say they are worried about their personal financial situation.  Family caregivers nationwide, many of whom face financial struggles, spend an average of $7,200 in out-of-pocket expenses each year—making it harder to afford essentials like groceries and bills.

“Voters over the age of 50 are a critical voting bloc that all candidates should compete for every election cycle,” adds Tony Fabrizio, partner at Fabrizio Ward. “Our poll found that Americans of all political stripes want leaders to support family caregivers. Candidates looking ahead to the 2026 midterms should pay attention to this issue if they want to win,” he said.

Could tax credits for caregivers become a reality?

Maybe.  During the 118th Congress, Republican and Democratic lawmakers came together to cosponsor legislation that called for federal tax credits for caregivers. S. 3702, with 11 Democrats, 3 Republicans and 3 Independents, was referred to the Senate Finance Committee.  Its companion measure in the lower chamber, H. R. 7165, with 81 cosponsors (72 Democrats and 9 Republicans), was referred to House Ways and Means Committee.  Both bipartisan bills never made it to mark up or even to the House floor for vote. 

Tax Notes reporter Alexander Rifaat, who covers the White House and Treasury, reported in a web article posted on Oct. 29, 2024 that Presidential Republican candidate Donald Trump supported tax relief for caregivers. Rifaat noted that during his 2024 presidential election, at a campaign event held at New York’s Madison Square Garden on Oct. 27, Trump called for a national tax credit for caregivers who are “never spoken of” and stay at home. 

At the campaign event,  Rifaat noted that Trump told the crowd:  “I will support a tax credit for family caregivers who take care of a parent or a loved one. And it’s about time they were recognized, right?” 

Now, as President Trump has an opportunity to keep this campaign promise by calling on the Republican-controlled Congress to work with Democratic lawmakers to give America’s caregivers financial relief, through the passage of a national tax credit legislation that will benefit them.  It’s time to work together and put caregivers before partisan politics.

For a copy of the National Legislative Priorities Survey, Feb. 2025, go to www.aarp.org/content/dam/aarp/research/topics/voter-opinion-research/politics/federal-tax-package-legislative-priorities.doi.10.26419-2fres.00921.001.pdf.

For a listing of organizations urging Congress in Jan. 7, 2025 correspondence to provide financial tax relief to caregivers, go to www.nase.org/sf-docs/default-source/advocacy-documents/financial-relief-for-family-caregivers-credit-for-caring-act-sign-on-letter-january-2025-(1).pdf?sfvrsn=e6b0e0f0_1

www.bls.gov/blog/2023/celebrating-national-family-caregivers-month-with-bls-data.html

To read AARP’s Research Insights into Caregiving, go to www.aarp.org/pri/topics/ltss/family-caregiving/aarp-research-insights-caregiving/.