Category Archives for Caregivers

Two New Studies on the Growing Financial Cost of Family Caregiving

Published in RINewsToday on November 2, 2025

As National Family Caregivers Month approaches in November, two new caregiving studies highlight the financial pressures facing millions of Americans who care for older relatives and loved ones.

On Oct. 14, Edward Jones, Age Wave, and The Harris Poll released findings detailing the financial, emotional, and personal toll of caregiving. Two weeks later, on Oct. 28, AARP released its own report documenting rising out-of-pocket costs.

Although the studies examine different caregiver populations, both find that providing care can jeopardize a family’s financial security.

The 42-page Edward Jones report, The Financial Impact of Caregiving, is based on an online survey conducted in May and June 2026. It included more than 3,000 adult caregivers, with findings focusing on those financially assisting adults age 65 and older.

According to the report, 91% of financial caregivers spend their own money on the person they care for each year, and 84% are not fully reimbursed. On average, they spend $8,737 out of pocket annually. That money may come from retirement savings, emergency funds, or money set aside for their children’s education.

The study also found that only 33% of financial caregivers discussed and planned for their role beforehand, while just 22% felt “extremely prepared” when they began providing financial assistance.

The demands go beyond money. Caregivers provide an average of 109 hours of care monthly, with women averaging 118 hours compared with 98 hours for men. Nearly 73% are employed and balance caregiving responsibilities with their jobs.

Among employed financial caregivers offered caregiving benefits, 92% use them. Flexible schedules, remote work, and leave are among the most commonly offered benefits, although many caregivers most want financial assistance. Nearly half are also “sandwich caregivers,” supporting children while caring for an older adult.

The report found that 38% have stopped or reduced saving, 18% have reduced or paused retirement contributions, and 25% have borrowed money, increased debt, or delayed repayment. Women are more likely than men to reduce saving, 42% compared with 35%.

The report’s findings also reveal a contradiction. Eighty-seven percent say they do not want to become a caregiving burden on their own families, yet 81% are willing to reduce their financial security to care for someone else.

“Caregiving is filled with contradictions. It can be stressful, expensive, and overwhelming, while also being one of the most meaningful roles a person takes on,” said Ken Dychtwald, Ph.D., Founder and CEO of Age Wave.

The researchers stress the importance of discussing caregiving responsibilities before care is needed.

“Caregiving deserves the same level of planning many families already devote to retirement, education and other major life events,” said Ken Cella, Principal and Head of External Affairs at Edward Jones.

Cella recommends that families discuss finances, long-term care wishes and caregiving responsibilities before a crisis occurs. Financial advisors can also help families understand how caregiving expenses may affect retirement and other financial goals.

AARP Finds Rising Costs

The 2026 AARP Caregiving Out-of-Pocket Costs Study puts average annual out-of-pocket caregiving expenses at $11,508, up almost 60% from 2021. Caregivers spend an average of 31% of their annual household income on care. For those with household incomes below $40,000, the figure rises to 76%.

AARP released its first caregiving out-of-pocket study in 2016, followed by another in 2021. This latest study is the third in the series.

The new study examined a national sample of 2,538 adult caregivers who recorded care-related expenses over one week during June and July 2026. Conducted in English and Spanish through Ipsos KnowledgePanel, the research weighted its findings against U.S. Census Bureau benchmarks.

“Family caregivers are spending more than $11,500 a year of their own money to care for loved ones — almost half a year of the average Social Security retirement benefit,” said Debra Whitman, AARP Executive Vice President and Chief Public Policy Officer, in an Oct. 28 statement.

“Whether they’re paying for groceries, housing or medical care, family caregivers are making a significant financial commitment that can affect their own economic security,” she said.

Caring for someone with Alzheimer’s disease or another form of dementia is especially expensive. AARP found those caregivers spend an average of $15,846 annually, compared with $10,221 for caregivers assisting someone without dementia.

Housing and household expenses account for 42% of out-of-pocket spending, averaging $4,797, while medical expenses account for another 29%, or $3,313. Together, they represent 71% of annual caregiving expenses.

The report also found that 65% of employed caregivers experienced at least one work-related disruption, such as changing hours, taking time off, or taking on additional work. Caregivers who retired earlier than planned because of their responsibilities spent an average of $18,940 annually out of pocket.

Where caregivers live matters, too; annual expenses approach $16,000 in the Mid-Atlantic states, compared with about $8,000 in the West North Central region.

While AARP reports that caregiving expenses have increased almost 60% since 2021, the figure is not inflation-adjusted. Changes in survey questions and the unusual circumstances of the COVID-19 pandemic also should be considered when comparing the findings.

The Edward Jones and AARP reports measure different caregiver populations and use different research methods. Their dollar figures cannot be directly compared. Still, both studies show that families are paying substantial costs that may affect their financial security for years.

The Costs Families and Policymakers Experience

Justin Weinberg, a licensed nursing home administrator and Director of Strategic Growth & Analytics at Clifton, New Jersey-based Eastern Healthcare Group, says the nation’s health care system depends heavily on unpaid family care, even as costs to families keep rising.

AARP estimates that family caregivers provide about $1 trillion in mostly unpaid labor annually, helping Americans stay home and reducing the need for costly nursing home care.

“Nearly every hospital discharge plan for a frail older adult assumes a family member will be at home handling the bathing, meals, medications, and overnight supervision. If families stopped, the system would back up within weeks,” Weinberg warns.

He estimates that family caregiving represents about 24 million full-time jobs. Without that support, he says, hospitals would struggle to discharge patients safely, and many people would go without needed care.

Weinberg, who has been featured on caregiver issues in U.S. News & World Report and ProPublica, worries that caregivers who reduce their work hours, pause retirement contributions or retire early may find themselves financially vulnerable when they need care later in life.

“The long-term effect shows up in nursing home financing. Medicaid is the primary payer for more than six in ten nursing home residents, and it only pays after people spend down nearly everything. A caregiver who drains her savings for a parent will reach that point faster when she needs care herself. The cost moves onto Medicaid a generation later,” he said.

He also urges families to discuss caregiving responsibilities before a crisis.“Each side is trying to protect the other. Parents don’t want to be a burden, and adult children feel it’s presumptuous to bring up a parent’s decline,” he said.

Families may mistakenly believe Medicare covers ongoing long-term care. Weinberg recommends making arrangements before a fall, stroke, or hospitalization forces decisions under pressure.

“Put a power of attorney and health care proxy in place while the parent can still sign them. Take stock of the parent’s income, savings, and insurance. Decide which sibling handles money, which handles medical decisions, and who provides hands-on care. And agree in advance on what would mean home is no longer safe, such as repeated falls or wandering at night,” he recommends.

Is America’s Caregiving System Sustainable?

“No, the oldest baby boomers turn 80 this year, and AARP projects the number of potential family caregivers for each person over 80 will drop from about seven in 2010 to four by 2030. Families are already at their limit, and the paid workforce can’t make up the difference, since every part of our sector is competing for the same aides and nurses,” Weinberg said.

He believes policy changes could provide some relief.

“A caregiver tax credit would give the most direct relief, but only if it’s refundable. The bipartisan Credit for Caring Act would offer up to $5,000, but as written it simply reduces taxes owed, so lower-income caregivers who owe little would get little,” he said.

Weinberg also supports expanding Medicaid-funded home care and paid family leave. He points to Washington state’s WA Cares Fund, a public long-term care insurance program financed through payroll contributions, as another approach worth watching.

“If policymakers don’t act, I expect more families to reach us in a crisis instead of through a planned transition, longer waiting lists for home care, and more caregivers entering old age with depleted savings and needing Medicaid themselves. Either way, the cost will land on public budgets. Planning for it now is less expensive than paying for it in emergencies,” Weinberg said.

As National Family Caregivers Month begins, the findings of both studies raise a troubling question for the 120th Congress and state policymakers: How much longer can families be expected to shoulder these costs largely on their own?

AARP report: 2026 AARP Caregiving Out-of-Pocket Costs Study

Edward Jones report: The Financial Impact of Caregiving

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“My Mama Joe: Hope & Help” puts Spotlight on Alzheimer’s, Caregiving and Health Disparities

Published in RINewsZToday on August 24, 2026

In the 57-minute documentary My Mama Joe: Hope & Help, producer and director Herb Caldwell, Ph.D., takes a close, intimate look at family caregiving through the eyes of his large, extended Black family.

The documentary looks at the life of JoeAnna “Mama Joe” Caldwell, a community leader whose achievements involved setting up the Faith Social Services Center, guiding vulnerable young people, and campaigning for health equity before she was diagnosed with early-onset Alzheimer’s disease at the age of 60.

“This sweet songbird is my mother, Joanna. You can call her Mama Joe. She is one of nearly seven million people living with Alzheimer’s in America,” says Caldwell, introducing his mother in the documentary.

Caldwell describes his film project as “a divine assignment, referring to it as a “heart project.”  A friend contributed the seed funding to help get the project started.  Without funding, he was able to start his docu-project because he owned video and musical production equipment.

“The filming took seven months to complete with the help of volunteers. Funding ultimately came in after the film was finished,” he said. He estimated that a standard production company would have easily spent an extra half a million dollars to make a film of this type.

The documentary is mainly told from the point of view of Caldwell, who is an administrator at Logan University in Chesterfield, Missouri, and includes interviews with 24 of Mama Joe’s family members and friends about the care they provided. Through their accounts, it becomes clear what daily life was like for Mama Joe due to her memory loss and the strong effect this had on those who looked after her.

Thirty-seven medical and health care professionals, advocates, and policy experts offered informed commentary on Alzheimer’s disease, caregiving, and health disparities, says Caldwell.

According to Caldwell, researchers from “colleges and universities throughout the country also contributed expert voices grounded in scholarly research and evidence. Practitioners were interviewed, he says, “ensuring that this film not only reflects theoretical knowledge but real-world hands-on experience from people actively working in the aging field.”

Finally, Caldwell interviewed  specialists to address practical, often confusing aspects of caregiving that the audience needed to understand – such as navigating insurance systems. Caldwell’s background as a Sociologist came in handy, balancing personal stories with expert commentary. “We wanted to tell our personal story, but we also wanted to help educate others,” he said, explaining that the importance of the documentary’s narrative structure was to be educational, backed by research and data.

According to Caldwell, the documentary first aired on WSIU PBS on February 5, 2025, after which the individual local PBS stations arranged for the film to be shown to their local audiences. At the time of writing, it had already been shown at about 100 locations throughout the country as part of an educational screening tour.

The documentary debuted on WSIU PBS on Feb. 5, 2025, although local PBS stations independently scheduled the film for their regional audiences, Caldwell says. At press time, this documentary has already been shown at some 100 locations across the country as part of an educational screening tour.

In August, screenings took place in Oak Bluffs on Martha’s Vineyard, Massachusetts, Newport, and Providence, Rhode Island. “We’re talking about doing a standalone screening in Boston, possibly before the end of the year,” says Caldwell.

Rather than simply watching the film, audience members could “ask questions about topics” that were covered.  A panel of experts allowed people to get clarification on complex issues discussed in the documentary, noted Caldwell.

“People left feeling really inspired actually,” observed Caldwell, noting that they felt better connected to information and local social networks.

Mama Joe’s Legacy of Community Service

Who was Mama Joe?

“She loved people. She loved her community. Not your typical pastor. She was radical with prayer and praise,” remembers Caldwell. Those words capture a woman whose death represented a profound loss not only to her large family and friends but also to the community she served.

The story of Mama Joe, as told in the documentary through interviews with her family and friends, highlights her work in community health advocacy, her role as a caregiver, and finally the difficulties she experienced due to her illness from Alzheimer’s disease.

Mama Joe was the fifth of ten children and was brought up in a poor area of Jacksonville, Illinois; her father died of tuberculosis when she was still a child, and she suffered from hunger, family instability, and sexual abuse.

She married Paul Caldwell in 1965 and had four children — Paula, Joy, Kristi, and Herb. Her family would grow through adoption and the informal embracing of others as her own: Barbara, Andre, Bryan, Antonio, Maurice, Latisha, and Ronald.

She was described as a beacon, fearless, a savior, a healer of sexual abuse survivors, and a mother to “a million and one people.”

Her community service began with providing weekend and evening meals to volunteers. She later worked at Big Brothers Big Sisters as a volunteer and caseworker, served multiple terms on the local school board, and ran job-skills training, food assistance programs, and a clothing closet.

Driven by the hardships and tragedies of her childhood, Mama Joe developed a deep empathy for children, people living in poverty, and others who were vulnerable. That commitment led her to found the Faith Social Services Center, a nonprofit organization often referred to as “the soup kitchen,” which also offered recreational leagues, after-school programs, and music production.

As a pastor, Mama Joe took her ministry beyond the walls of a church, showing up in fatigues, jumpsuits, or clerical attire at sick bays, rehabilitation centers, and even townships near Johannesburg, South Africa.

In the documentary, Caldwell recounts his mother’s decision to serve as a minister in a South African church rather than meet Nelson Mandela.

“You can’t talk about my mother and not mention her faith because it was her faith that compelled her to love and serve others without regard to their race, sex, religious belief, income level, or any other factor,” he says.

According to Caldwell, his mother was honored by mayors, governors, and even the White House as the 944th “Point of Light.” Smiling, he recalls that she famously hugged President George H.W. Bush and First Lady Barbara Bush rather than offering a formal handshake.

During her 80 years, Mama Joe fought for the voiceless, gave support to young people who were in legal difficulties, and helped survivors of abuse. Unfortunately, Alzheimer’s disease appearing early in life eventually obliged her to stop the community work which had been such a major part of her life.

Coming to Terms with Alzheimer’s

Before being diagnosed with Alzheimer’s disease, Mama Joe’s family began noticing memory lapses and episodes of disorientation. Following her diagnosis, her large extended family would spend the next two decades helping to care for her.

Over the years, they learned firsthand that caregiving requires strong support systems — not only to maintain the quality of life of the person receiving care but also to prevent caregiver exhaustion and burnout.

Daughter Joy Oliver remembers a visit to a neurologist. “He ran all the tests, did the official test…we got the results, and he did confirm that it was, excuse me, early-onset Alzheimer’s,” she said.

As happens in many families, much of the primary caregiving responsibility fell to Oliver. “I knew it was no question. We would serve her. We would do whatever we had to do to make sure she stayed healthy and that she enjoyed her life, however long that was,” she says, describing her caregiving journey.

“For me, the hardest part was not just the fact that the burden was primarily just on my family and me, but to me the hardest weight was the responsibility,” remembers Oliver.

Oliver also recognizes the stresses of caregiving and the importance of respite and self-care. “Because it’s easy to slip into depression. It’s easy to totally ignore yourself because you have to take care of yourself first,” she said.

During her interview, Angelita Howard, Ed.D., MBA, of the Meharry School of Global Health, reinforces the importance of Black caregivers taking care of their own physical and emotional health. “There is a stigma in Black communities of color about mental health and about going to counseling and therapy,” she noted, stressing the importance of reaching out for help.

Taking care of Mama Joe involved multiple generations, including her grandchildren. Her grandson Jonah Oliver describes how he coped with the stress of caregiving. “With the stress and just dealing with my feelings, swimming has just been really therapeutic,” he says.

Grandson Noah Oliver also describes how caregiving affected his schooling.  “I went through a small depression at this time. I wasn’t submitting assignments, lying about stuff…And in my head I was justifying it. I was like I got to take care of my people. I’ll be OK. I can do that stuff later. And it didn’t get done later,” he admitted.

These family accounts make one of the documentary’s most important points: Alzheimer’s disease does not just affect the person diagnosed. Its impact can ripple through an entire family and across generations.

Alzheimer’s and Health Disparities

Mama Joe’s situation also leads to several questions about Alzheimer’s disease, racial disparities in health care, and whether families have sufficient support when they become caregivers. These questions are examined throughout the documentary.

“Black people are approximately two to three times more likely to develop Alzheimer’s disease than their white counterparts,” says Erin R. Hascup, Ph.D., executive director of the Dale and Deborah Smith Center for Alzheimer’s Research and Treatment.

Scholar and activist Okey Enyia, Dr.P.H., points to systemic factors contributing to those disparities.  “A fundamental reason why there are stark disparities and stark inequities is because of structural racism and the various ways in which it manifests across the healthcare system,” he says.

The documentary also points to a lack of resources and education in communities of color, along with geographic and transportation barriers that can make obtaining diagnosis, treatment, and support services more difficult.

Community-based interventions and culturally relevant approaches — including caregiver support groups, churches serving as trusted hubs for information and memory-care programs — may offer promising ways to address these disparities. Increasing participation by diverse communities in Alzheimer’s research is also essential to developing treatments that work effectively across populations.

Caldwell and his siblings also came face to face with the complexities of insurance, Medicare, and a medical system that was not always well-equipped to support families dealing with dementia.

As Mama Joe’s dementia progressed, complications from medication, multiple strokes, and her increasing disabilities forced her family to become increasingly assertive advocates for her care.

Mama Joe died as a result of the operation, and her family and friends held a cheerful “homegoing” service to honor her legacy and the span of her service. One of her relatives spoke about the grief caused, the loss of motivation, and the great effect of her departure.

Documentary Deeply Moves RI Aging Advocates

As Annie Murphy, Senior Program Manager with the Alzheimer’s Association Rhode Island Chapter, points out, this documentary presents a genuine account of the experiences of family members, friends, and the wider community as they support a person with Alzheimer’s disease or another type of dementia.

“As Murphy pointed out, caregiving often imposes an emotional, financial, and at times a spiritual strain on the people who look after their loved ones. With the viewpoint of a son coming from a large Black American family, she stated that the PBS film gave us the hope that community, faith, love, and endurance can indeed make a real difference in the life of a person who has dementia.”

She said, “Documentaries which aim to raise awareness—such as the Mama Joe Project—are important in increasing the impact that this disease has on our communities. They show the need for greater cooperation between state and federal services, community members, friends, family, and faith communities when supporting those affected.”

Markeisha J. Miner, JD, Vice President and Chief Diversity Officer at the University of Rhode Island, stated that “The Mama Joe Project is a must-watch documentary for anyone who is going through ‘the long goodbye’ with a loved one who has been diagnosed with Alzheimer’s or dementia” and added that “it is a beautiful reflection of her life and legacy because it keeps her dignity and humanity at the center throughout”.

She also stated that the film effectively combines Mama Joe’s own journey with appropriate and culturally sensitive input from scholars and care professionals. In the end, the project enables communities to rely on one another, to ask the right questions, and to find the proper support.

“Watching My Mama Joe was a moving experience,” Carol Anne Costa, executive director of the Senior Agenda Coalition of Rhode Island (SACRI), said, the organization having teamed up with filmmaker Caldwell to show the documentary in the Ocean State.

As Costa put it, he has created a powerful and moving portrayal that pays respect to both his mother and to the millions of families experiencing the Alzheimer’s and caregiving journey.

She observed that the documentary includes the voices of relatives, doctors, and researchers, offering a variety of viewpoints on aging, dementia, and caregiving.

As Costa pointed out, the real worth of the film lies in providing a platform for the people who live within this reality and those who study it. She also said that combining art with real-life experience is an effective way to help audiences learn about and empathize with this struggle.

In conclusion, George Andoscia, Program Manager of the Alzheimer’s Disease and Related Disorders Program, provides his assessment: “The My Mama Joe Hope & Help documentary admirably portrays the experiences of a person who has dementia and of the family members who become carers. Not only does the account of Mama Joe and her family, the interviews with subject matter experts, and the resources offered in this documentary make it a deeply personal presentation, but they also give it a highly educational character.”

A Final Note…

The interviews woven throughout Caldwell’s documentary provide a powerful case study of community health advocacy, the challenges of family caregiving, and the continuing need to address racial disparities in health care.

At its core, My Mama Joe: Hope & Help shows what Alzheimer’s disease and caregiving are really like. The book demonstrates the real effect that a dementia diagnosis has on a family, emphasizing the change in responsibilities, the increasing number of younger people taking on caregiving roles, and the difficulty involved in dealing with complicated healthcare and insurance systems.

The documentary also has the potential to increase awareness of Alzheimer’s and other dementias and reduce the stigma surrounding mental health counseling and seeking assistance in communities of color.

It brings the topic of care directly to the attention of policymakers: There is a need for support on the part of families who are looking after relatives with Alzheimer’s disease.  The nation’s aging policy agenda must include efforts to improve access to culturally appropriate dementia services, strengthen support for caregivers, increase the involvement of underrepresented communities in Alzheimer’s research, and address existing health disparities.

Mama Joe spent much of her life advocating for people whose voices were often overlooked.  Through this documentary, her family has made certain that her story — and the lessons it offers about Alzheimer’s disease, caregiving, and service to others — will never be forgotten.

To watch Caldwell’s documentary, go to My Mama Joe: Hope & Help | PBS.

Unpaid Caregiving Takes a Toll on Retirement Security

Published in RINewsToday on August 10, 2026

Unpaid family caregiving is often viewed as a labor of love. But a new national study shows that caring for a loved one can also come with a significant financial price — one that may well follow caregivers right into their retirement years.

On July 22, the Washington, D.C.-based Employee Benefit Research Institute (EBRI), a nonprofit, nonpartisan research organization that studies employee benefits, released its 42-page report, “Caregivers and Retirement: Findings From the 2026 Retirement Confidence Survey.” The report examines how unpaid caregiving affects financial security, employment, health and retirement planning.

Not surprisingly, the findings paint a very troubling picture. Caregivers are more likely than non-caregivers to report lower financial assets, debt problems, poorer health and less confidence about having enough money to live comfortably throughout retirement.

The report is part of a broader caregiving project being developed by EBRI and Greenwald Research. The goal is to provide employers with educational resources and strategies to help employee caregivers better prepare for retirement while managing the all-consuming demands of caring for a family member.

A Growing Retirement Security Issue

The 2026 Retirement Confidence Survey, now in its 36th year, found that nearly three in 10 Americans age 25 and older are unpaid caregivers.

For purposes of the study, caregivers were defined as people who provided unpaid care for an adult or child during the previous 12 months in a non-institutional setting and helped the care recipient with at least one activity of daily living or instrumental activity of daily living.

The findings were discussed during a July 22 EBRI and Greenwald Research webinar featuring Craig Copeland, EBRI’s director of wealth benefits research; Lisa Greenwald, CEO of Greenwald Research; Kerry Sette of Voya Financial; and Cynthia Hutchins of Bank of America Merrill Lynch.

Throughout the discussion, the message was quite clear: caregiving is not simply a family or health issue. It must also be viewed as a retirement security issue.

“Caregiving is often discussed as a family, health or workplace issue, but this research shows it is also an important retirement security issue,” Copeland and Greenwald said in announcing the report.

“Caregivers are doing many of the same planning activities as non-caregivers, but they are more likely to face debt, lower assets, mental health strain and lower confidence about their long-term financial future,” they noted.

The 2026 report builds on an earlier 2023 EBRI/Greenwald Research study that also examined caregivers. Comparing the two surveys, Copeland said caregivers continue to fall behind their non-caregiving counterparts.

Taking a Look at the Key Findings

Caregiving can take a toll on health. Only 36% of caregivers said their health was excellent or very good, compared with 45% of non-caregivers. Caregivers were also less likely to have household incomes of $75,000 or more — 53%, compared with 62% of non-caregivers. Women represented 61% of caregivers, compared with 47% of non-caregivers. 

Caregivers have fewer financial resources to build wealth. Thirty-four percent of caregivers reported having less than $10,000 in savings and investments, compared with 25% of non-caregivers. Debt was also more likely to be a problem: 69% of caregivers said debt was a problem, compared with 57% of non-caregivers.

Caregiving can hit the family wallet. Thirty-four percent of caregiving workers and 20% of caregiving retirees said they provide financial support to the person they care for. In addition, 20% of caregiving workers and 15% of caregiving retirees said they had taken on new or additional debt as a result of caregiving.

The emotional toll is substantial. Sixty-four percent of working caregivers and 52% of caregiving retirees said caregiving had negatively affected their mental health. Among working caregivers, the financial tasks most affected were saving for emergencies (56%) and working the hours they wanted or needed to work (54%).

The financial pressures of caregiving can make it harder for people to prepare for their own futures. Caregivers in both the lower- and upper-income groups were more likely than non-caregivers with similar incomes to lack confidence that they would have enough money to live comfortably throughout retirement.

Among households earning less than $35,000, 75% of caregivers said they were not confident they would have enough money for retirement, compared with 55% of non-caregivers. Among households earning $75,000 or more, 32% of caregivers lacked confidence, compared with 23% of non-caregivers.

Caregivers were also more likely to worry about the impact of an economic recession, rising housing costs, and having to provide care for a loved one with a health condition or disability.

When Caregiving Changes Retirement Plans

For some caregivers, the demands of providing care can even change when they leave the workforce.

The survey found that caregiving retirees were more likely than non-caregiving retirees to have retired earlier than planned. Among those who retired earlier than expected, caregivers were more likely to say they did so because they had to care for a spouse or another family member.

Caregiving retirees were also more likely to describe their current retirement lifestyle as fair rather than excellent. They were more likely to say their retirement lifestyle was not what they had envisioned and that several retirement expenses were higher than expected.

Higher-income caregivers also lagged behind non-caregivers with similar incomes in completing several important retirement-planning tasks, including calculating how much they needed to save, saving for retirement, planning for emergency expenses and estimating future health care costs.

The report points to a number of ways employers can help working caregivers, including flexible scheduling, remote-work opportunities, caregiver resources, education and benefits designed to reduce some of the financial pressures associated with caregiving.

Lisa Greenwald, CEO of Greenwald Research, says caregiving creates financial, health and social-emotional pressures at different stages of life — while people are working, preparing for retirement and after they retire.

For employers, she says, recognizing these challenges can help them provide the flexibility and support caregivers need to remain productive at work while continuing to save for retirement.

Having Their Say…

Washington insider Dan Adcock, director of government relations and policy for the National Committee to Preserve Social Security and Medicare, agrees with the report’s findings about the financial and personal pressures facing caregivers.

Unless unpaid family caregivers receive greater support through respite care or paid Home- and Community-Based Services, Adcock says, caregiving responsibilities can take a toll on their physical and emotional health.

He also points to another concern not fully captured by the EBRI survey: working-age caregivers who leave the workforce to care for a loved one can end up with lower Social Security benefits because the program’s benefit formula is based in part on a worker’s earnings history.

That is one reason Adcock supports a Social Security caregiver credit.

He urges Congress to pass the Social Security Caregiver Credit Act of 2026 (S. 4396/H.R. 8490). The legislation was introduced by Sen. Chris Murphy (D-Conn.) and Sen. Kirsten Gillibrand (D-N.Y.) in the Senate, with Rep. Brad Schneider (D-Ill.) introducing the House companion measure.

The legislation would allow qualifying unpaid caregivers to receive up to five years of deemed wages for purposes of calculating Social Security benefits. To qualify, a caregiver would generally have to provide at least 80 hours of care per month to a dependent child under age 12 or a chronically dependent relative.

The bills remain in committee. S. 4396 was referred to the Senate Finance Committee, while H.R. 8490 was referred to the House Ways and Means Committee.

The issue is particularly important here in Rhode Island, where thousands of family members provide unpaid care that helps loved ones remain in their homes.

Maureen Maigret, policy advisor with the Senior Agenda Coalition of Rhode Island (SACRI), says the EBRI findings confirm what advocates have been seeing for years.

“Caregiving takes a significant physical, emotional, and financial toll on our unpaid caregivers,” she says.

Maigret notes that Rhode Island caregivers provide thousands of hours of unpaid care that can allow people to remain at home longer, potentially delaying or avoiding more costly nursing facility care.

SACRI is pushing for policies to strengthen support for caregivers, including expanding the state’s Temporary Caregiver Insurance program, adequately funding respite services, and creating a state caregiver tax credit.

Rhode Island has already taken steps to support working family caregivers through its Temporary Caregiver Insurance program. Aging advocates, however, continue to push for expanded eligibility and additional weeks of paid leave.

Taking a Close Look at AARP’s Caregiver Study

After a media briefing last year, AARP and the National Alliance for Caregiving (NAC) published 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, released June 24, 2025, 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.

One in five caregivers report poor health; a quarter are taking on debt due to caregiving. Half report negative financial impact due to caregiving, and one in five cannot afford basic needs like food.

EBRI’s new survey adds an important retirement-focused perspective to an ongoing national conversation about unpaid caregiving.  The research shows how caregiving can affect not only today’s household decisions but a person’s long-term financial security.

And that may well be the most important takeaway from the new EBRI report.

Millions of Americans step up to the plate when a parent, spouse, child or other loved one needs help. They do it because it is what families do. But caregiving should not mean that the person providing that care has to sacrifice his or her own financial future.

Like AARP’s 2025 caregiver study, EBRI’s report examines how caregiving responsibilities are associated with retirement confidence, debt, savings, financial stress, workplace needs and long-term retirement preparation among workers and retirees.

The EBRI research, complementing AARP’s definitive caregiving research, makes it clear that unpaid caregiving carries consequences that can extend far beyond the time spent providing care. For many Americans, the price may be paid not only today, but again when they reach retirement.

A Final Note…

EBRI’s Copeland points out: “The survey results clearly show caregiving has significant impacts on both workers and retirees, not only now but in the future as well. While you may not be a caregiver currently, if you have parents or children, you are likely to be one in the future. Thus, preparing for this need, or better handling current caregiving needs, can make a huge difference in retirement preparations and current expenses. Caregiving can take a toll on all aspects of life, so anything individuals can do to plan for it or better educate themselves can foster a caregiver’s well-being, both financially and emotionally.”
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The 2026 Retirement Confidence Survey was conducted online from January 2 through January 28, 2026, among 2,544 Americans age 25 and older. It included a general population sample of 2,052 people — 1,007 workers and 1,045 retirees — plus an oversample of 492 caregivers. The final analysis included 701 caregiving workers and 305 caregiving retirees.

The 2026 survey was supported by the American College of Financial Services, American Funds/Capital Group, Bank of America, Bright Horizons, CareScout, Edward Jones, Empower, Fidelity Investments, FINRA Foundation, Jackson National, J.P. Morgan Chase & Co., Mercer, Nationwide, Principal Financial Group, Protective, Prudential/PGIM, T. Rowe Price and Voya Financial.

To watch the EBRI Webinar and for a copy of the slides, go to https://www.ebri.org/publications/webinars/past-webinars

To read AARP’s 2025 Caregiver Study, go to Caregiving in the U.S. 2025 – AARP Research Report