“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.

Senate Finance Panel Begins Discussion on Fixing Social Security

Published in RINewsToday on August 17, 2026

Social Security’s Old-Age and Survivors Insurance Trust Fund (OASI) is projected to reach insolvency by late 2032, triggering an automatic 22% across-the-board benefit cut if Congress fails to act, according to the 2026 Social Security Trustees Report released June 9. The clock is ticking — fewer than 2,300 days remain.

What would that mean for older Americans? Marc Goldwein, senior vice president and senior policy director of the Committee for a Responsible Federal Budget (CRFB), put a dollar figure on the potential impact in his August 5 testimony before the Senate Finance Committee. Acomparable benefit reduction imposed today, he said, would mean an average loss of about $500 a month for beneficiaries.

For a typical newly retired couple, that could translate into an annual loss of roughly $12,000 in Social Security income — a substantial hit for households that depend on the program to pay for housing, food, utilities, health care and other basic expenses. Goldwein’s testimony underscores what the Trustees’ numbers mean beyond the percentages: a future across-the-board cut could have a very real impact on retirees’ daily lives.

Senate Finance Panel Takes Up Social Security’s Future

Just nine days before Social Security’s 91st birthday on Aug. 15, the Senate Committee on Finance held an Aug. 5 hearing, “Exploring Process Approaches for Addressing Social Security Solvency,” to spotlight the program’s looming financial challenges and explore possible legislative approaches. The hearing brought together policy experts and advocacy organizations to discuss how Congress might move toward a solution.

The more than two-hour hearing examined the merits of using a commission versus the regular legislative process. Senators and witnesses also discussed increasing revenue from higher earners, raising or eliminating the payroll tax cap, adjusting benefits, and changing the retirement age.

Chairman Mike Crapo (R-Idaho) opened the hearing by warning that Social Security’s OASI Trust Fund is projected to be exhausted in late 2032. If Congress fails to act, incoming program revenues would be sufficient to pay only about 78% of scheduled benefits, he said.

The last comprehensive congressional effort to address Social Security’s solvency took place more than 40 years ago, culminating in the Social Security Amendments of 1983. Signed by President Ronald Reagan, the bipartisan legislation gradually raised the full retirement age, subjected some higher-income Social Security benefits to federal income taxation and increased payroll taxes to strengthen the program’s finances.

Crapo pointed to the 1983 reforms as an example of how an outside commission might help break legislative gridlock. He also cited his participation in a later bipartisan fiscal commission, commonly known as the Greenspan Commission, whose recommendations ultimately failed to win the support needed to move forward.

Ranking Member Ron Wyden (D-Ore.) challenged the idea of creating another commission, arguing that Congress should take responsibility for solving the problem rather than sending it to an outside panel.

“Instead of ‘talking about talking,’ this body should get to work on finding a resolution to the Social Security solvency challenge and having that debate in public view,” Wyden said.

Crapo responded that the hearing was not intended to promote a specific proposal but to examine a broad range of ideas.

Sen. Bill Cassidy (R-La.) pushed back against Democratic criticism that Republicans were seeking to cut benefits, saying Congress needs to be willing to consider different approaches to the problem.

Sen. Ron Johnson (R-Wis.) took a much harsher view of the program, calling Social Security a “Ponzi scheme” and arguing that money collected from taxpayers has already been spent.

Rhode Island’s Whitehouse Calls for Answers

Rhode Island Democratic Sen. Sheldon Whitehouse pressed Republicans for a specific plan to address Social Security’s finances.

“Where’s the Republican proposal? Where is it? It doesn’t exist,”

Whitehouse charged, arguing that Republicans were unwilling to publicly embrace proposals that could result in benefit reductions.

Whitehouse said Democrats have legislation that would make Social Security solvent “for as far as the actuarial eye can see” without cutting benefits.

Sens. Elizabeth Warren (D-Mass.) and Bernie Sanders (I-Vt.) focused on raising more revenue from higher-income Americans by increasing the amount of earnings subject to the Social Security payroll tax.

Warren noted that the payroll tax currently applies only up to a certain level of earnings, meaning high-income workers pay Social Security taxes on a smaller percentage of their total income than most middle-income workers.

Sanders framed the issue in simpler terms, asking whether wealthy Americans should pay the same percentage of their income into Social Security as firefighters and nurses.

But not every senator framed the debate in partisan terms.

Sen. James Lankford (R-Okla.) observed that conversations about Social Security often “immediately” become fear-mongering, with the discussion centered on taking benefits away.

“We’re actually trying to be able to get to a point where no one loses benefits,” Lankford said, noting that the goal should be long-term stabilization.

Lankford acknowledged that having a “grown-up conversation” about stabilizing Social Security’s finances and resolving the problem remains a real challenge.

Sen. Catherine Cortez Masto (D-Nev.) also called for bipartisan action.  “We’ve got to fix this and that means working together. There’s a lot of great ideas out there. If we would just make this a focus and a priority, we can get something done,” she said.

Their comments underscored a central question facing Congress: Can lawmakers move beyond the political rhetoric surrounding Social Security and find enough common ground to actually fix the program?

AARP: Keep Social Security at the Table

Nancy A. LeaMond, AARP’s executive vice president and chief advocacy and engagement officer, questioned whether another special commission is the best way forward.

“The history of special commissions is littered with very good intentions and failed results,” LeaMond told the committee. She argued that Social Security’s future should be addressed directly by Congress, which has jurisdiction over the program and a long history of tackling difficult Social Security issues.

LeaMond reminded senators that Social Security remains the foundation of retirement security for millions of Americans. She noted that it provides more than half of household income for 43% of older American households and provides at least 90% of income for nearly 12 million Americans age 65 and older.

Social Security’s impact also extends beyond individual beneficiaries, LeaMond said. “Every dollar paid in Social Security benefits generates two dollars of economic activity, supporting 12.2 million jobs and $2 trillion in economic output each year,” she said.

Sen. Chuck Grassley (R-Iowa) acknowledged AARP’s efforts to protect Social Security, including its television advertising campaign warning against benefit cuts. But Grassley urged AARP and other organizations to do more to educate the public about the looming automatic reductions.

“We’ve got to wake this entire nation up to the fact that there’s going to be 22% cuts if we don’t do something right now,” Grassley said.

Goldwein told the committee that Social Security’s financial problems can be addressed if Congress begins the process rather than continuing to delay action.

In his testimony, Goldwein described CRFB’s Trust Fund Solutions initiative, which offers potential approaches for restoring Social Security’s solvency. Among the ideas discussed are changes to the taxation of benefits, expanding the payroll tax base, limiting benefits for some high earners, and encouraging longer workforce participation.

The dollar figure Goldwein cited — an average reduction of about $500 a month under a comparable benefit cut — puts the Trustees’ warning into perspective. For retirees already struggling to keep pace with rising housing, food and health care costs, losing another $500 a month would not be an abstract budget number. It could mean difficult choices between paying bills, buying groceries or filling a prescription.

Charles Blahous of the Mercatus Center also called for Congress to move quickly, arguing that the most important part of Social Security reform may simply be getting the process started before continued delays make the problem harder and more expensive to solve.

Rebecca D. Vallas, CEO of the National Academy of Social Insurance, told the committee that the decisions Congress makes about Social Security will rank among the most important work lawmakers undertake in generations.

Vallas cited a survey of more than 2,200 Americans conducted by NASI in partnership with AARP, the National Institute on Retirement Security and the U.S. Chamber of Commerce. The survey found that 85% of respondents favored preventing benefit reductions or increasing benefits, even if that would require raising taxes on some or all Americans. Only 15% preferred benefit reductions to tax increases.

Support for raising revenue rather than cutting benefits crossed party, income, education, and generational lines, Vallas said.

A Final Note…

“Social Security is too important to millions of Americans for Congress to take shortcuts or empower fast-track commissions to do their job. This is an opportunity to show that Washington can work, that it can deliver the results that the American people are demanding, and that it can achieve this goal without waiting until the very last minute to act,” says submitted testimony by Max Richtman, President & CEO of the National Committee to Preserve Social Security and Medicare.

The message from the hearing was clear: Social Security’s financial problems are real, the clock is ticking, and Congress has no shortage of policy ideas.

What remains uncertain is whether Democrats and Republicans can put aside their philosophical differences long enough to agree on a bipartisan solution.

After 43 years and 4 months since the enactment of Social Security reforms in 1983, the stakes are simply too high for millions of older Americans to wait much longer.  Lawmakers must roll up their sleeves and get the work done.

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.”
.

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