Tag Archives for home and community based services

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

LCAO Calls for Fourth Stimulus Bill to Protect the Health and Well-Being of Seniors

Published in the Wooonsocket Call on April 19, 2020

As part of the Economic Impact Payment provision in the recently enacted $ 2.2 trillion stimulus bill, at press time about 80 million Americans have already received their $ 1,200 stimulus check ($2,400 for joint filers) through direct deposit. But for those 70 million Americans waiting for this payment by paper check, this Congressional handout may not be delivered to their mail box by early May, predict a Democratic Senator.

While the U.S. Treasury Department denies that embossing President Donald Trump’s signature on the “memo” section of the check will delay the delivery of paper checks, Senate Finance Committee Ranking Member Ron Wyden, (D-Ore.) disagrees.

A Break in Protocol

In an April 15 statement, Wyden stated: “Donald Trump is further delaying cash payments to millions of Americans struggling to pay the rent and put food on the table to feed his ego. Only this president would try to make a pandemic and economic catastrophe all about him.”

According to an article published in the Washington Post on April 14, “It will be the first time a president’s name appears on an IRS disbursement, whether a routine refund or one of the handful of checks the government has issued to taxpayers in recent decades either to stimulate a down economy or share the dividends of a strong one.”

The Washington Post article, penned by Reporter Lisa Rein, reported that Trump had initially approached Treasury Secretary Steven Mnuchin, who oversees the Internal Revenue Service, to be allowed to sign the checks. “But the president is not an authorized signer for legal disbursements by the U.S. Treasury. It is standard practice for a civil servant to sign checks issued by the Treasury Department to ensure that government payments are nonpartisan,” says the article.

Political insiders say that we can expect to see a fourth stimulus package hammered out between the Democratic-controlled House, the GOP-led Senate and Trump, to pump billions to jumpstart the nation’s sputtering economy. A second round of cash payments may well be part of this economic stimulus package, they say.

“We could very well do a second round,” said President Donald Trump at a White House news conference held over a week ago. “It is absolutely under serious consideration,” he said.

Last week’s commentary publicized Max Richtman, president and CEO of the Washington, D.C.-based National Committee to Preserve Social Security and Medicare, call to Congress to protect seniors in a fourth stimulus package (go to https://herbweiss.blog/2020/04/12/congress-must-protect-seniors-in-phase-four-stimulus-package/).

The continuing political battle over crafting the fourth stimulus bill has been put on hold for now with Democratic and WRepublican congressional leaders extending recess. After conferring with public health experts, the House and Senate will not come back into session until, Monday, May 4th.

Calling on Congress to Protect Seniors During the COVID-19 Pandemic

In an April 8 letter, the Washington, DC-based Leadership Council on Aging Organizations (LCAO), representing 69 national nonprofit organizations, urged Congressional lawmakers to ensure that a fourth stimulus package will protect the health and wellbeing of seniors and their families. LCAO’s 19-page communication provides over 50 recommendations (in the areas of housing services, income security and health and community resources) that are key to helping and providing the needed support to assist seniors cope with the raging COVID-19 pandemic.

Specially, LCAO calls on Congress to put funding for affordable housing in a fourth stimulus bill, by funding $ 1.4 billion for federally assisted housing supports to make up for vacancies along with decreased rents from HUD-and USDA-assisted older adult residents, and for emergency housing assistance. Investing $1 billion for new Section 202 Homes would result in short-and long-term jobs as well as 3,800 affordable homes becoming available with service coordinators, says LCAO. Congress was also requested to allocate $450 million in emergency assistance for HUD-assisted senior housing communities, too.

LCAO opposes any attempts to weaken the nation’s Social Security and Medicare programs. The aging group strongly resists any efforts to include a provision in the stimulus bill that would eliminate the payroll contributions to these programs and pushes for the expansion of Social Security and Supplemental (SSI) benefits to enhance the income security of America’s retirees.

Over 10 million workers and retirees have earned benefits under multiemployer pension plans, says LCAO, urging Congress in their letter to allocate sufficient funds to protect the “hard-earned benefits” of these retirees.

With a growing number of the nation’s seniors relying on the support of caregivers, LCAO calls for support of older adult caregivers and children through the expansion of the refundable tax credit for “other dependents.”

Within the next five years, 25 percent of the workforce will be age 55 and over, says LCAO, noting that it becomes crucial to provide adequate funding to the Senior Community Service Employee Program for workforce training.

It’s important to protect seniors from confusing and unfair billing hospitals and payment scams. This can be accomplished by establishing standards for billing that will help seniors manage the aftermath of health care costs due to the pandemic.

Each year, Medicare loses $60 billion to fraud and abuse. LCAO also requests $20 million for the Senior Medicare Patrol to educate Medicare beneficiaries on combating fraud and abuse scams.

LCAO’s letter also asked Congress for adequate funding of mass testing for COVID-19, data collection and accelerate Medicare enrollment to provide seniors and people with disabilities with access to needed medical treatment, two populations with the highest risk for being afflicted by the devastating virus. Congress must also ensure access and affordability to prescription drugs, says the Washington, DC-based aging advocacy group.

LCAO urged Congress to give states sufficient Medicaid funding to keep hundreds of thousands of Medicaid recipients from losing health coverage, which would increase the risk of these individuals spreading the COVID-19 virus.

The need to social distancing may force day care centers to close. LCAO says that a fourth stimulus bill package might add language within the Medicare and Medicaid Home and Community Based Service funding to authorize states to apply retainer payments to adult day care centers for the purpose of providing services to seniors outside the physical center.

LCAO also made a recommendation to prevent the unnecessary transfers of seniors to hospitals and nursing homes and support those recovering from COVID-19 by increasing beneficiary access to home health care by eliminating Medicare’s requirement that they be home bound to quality for this benefit.

LCAO’s letter supported the expanded access to hospice care by allowing physician assistants to certify need and to create a federal fund to identify and set up alternative care sites to nursing homes that meet the same minimum federal standards of care.

LCAO pushed for an additional $50 million to fund the Medicare State Health Insurance Program, a program providing unbiased, free and personalized information to assist seniors to chooses Medicare products, to help seniors understand their specific health care coverage needs under this COVID emergency.

The fourth stimulus bill, says LCAO, must also include funding to ensure providers in health care facilities and at community-based programs, be given personal protective equipment. These providers should be provided free child care and sick leaved during this crisis, too.

Considered “a frontline resource in the battling the pandemic,” LCAO calls for the adequate funding to Geriatric Workforce Enhancement Program, administered by the Health Resources Administration.

LCAO, noting the importance of federal programs that assist seniors to stay at home (including the Older Americans Act that directly serve seniors and caregivers, and the Supplemental Nutrition Assistance Program, the largest federal nutrition program), asks Congress to increase funding, benefits and streamline the application process to these programs to address healthcare and food needs during this pandemic.

With the COVID-19 virus spreading throughout the nation’s nursing homes and assisted living facilities, LCAO calls for more funding to the nation’s long-term care ombudsman program for remote online training and education of nursing facility staff and volunteers, and to the National Ombudsman Resource Center for training materials.

With elder abuse and neglect cases in the community reaching 63,000 in 2018 and an expected surge in incidences due to the pandemic, LCAO calls for funding of $ 120 million for the nation’s state and local Adult Protective Services programs in the next stimulus bill. Also, allocating $4.1 billion for the Social Service Block Grant Program can provide critical services to vulnerable seniors through adult protective services, adult day care and in-home support services, congregate and home delivered meals, case management programs.

Finally, in a fourth economic response package, LCAO calls on lawmakers to include $15 million for the Retired Senior Volunteer Program and $10 million for the Senior Companion program to provide volunteer opportunities for seniors in their communities during the pandemic crisis. Congress might also consider “easing or suspending the current age requirements for participation,” to allow younger seniors to participate.

Remember Your Older Constituents

With the Trump Administration and GOP lawmakers pushing to put billions of dollars into the fourth stimulus bill to support the nation’s large corporations and small businesses, during the COVID-19 pandemic, it is important for Congress to not forget the needs of the nation’s seniors. If you run into your Congressman or Senator, make sure you urge them to seriously consider the needs of their older constituents.

To get a copy of LCAO’s letter to Congress, go to https://www.lcao.org/files/2020/04/LCAO-April-2020-Letter-for-COVID-19-Package-4-FINAL.docx.pdf .

Courtesy of AARP: Long-Term Care Data at Your Finger Tips

Published in the Woonsocket Call on September 2, 2018

Across the States 2018: Profiles of Long-Term Services and Supports, by Ari Houser, Wendy Fox-Grage, Kathleen Ujvari, of AARP’s Public Policy Institute, was released days ago. The jampacked 84-page AARP reference report gives state and federal policy makers comparable state-level and national data culled from a large number of research studies and data sources, some of the data gleaned from original sources.

AARP considers the 10th edition of Across the States, published for the past 24 years, “the flagship publication” to assist policy makers make informed decisions as they create programs, and policies for long-term services and supports (LTSS). State-specific data “is easily found, “at your fingertips,” claims AARP.

Across the States, released August 27, 2018, includes a myriad of aging topics include: age demographics and projections; living arrangements, income, and poverty; disability rates; costs of care; private long-term care insurance; Medicaid long-term services and supports; family caregivers; home- and community-based services (HCBS); and nursing facilities. Each state profile is a four-page, user-friendly, print-ready document that provides each state’s data and rankings.

Looking at Trends

AARP Public Policy Institute researchers have identified four trends in reviewing state data. Of most importance to Congress and state legislatures, Across the States gives a warning that America’s population is aging. The nation’s age 85 and over population, those most in need of aging programs and services, is projected to triple between 2015 and 2050, a whopping 208 percent increase.

But, by comparison, the population younger than age 65 is expected to increase by only 12 percent. The under age 65 population, currently, 85 percent of the total population, is projected to be 78 percent in 2050. Bad news for propping up the Social Security system with the worker-to – beneficiary ratio declining.

Across the States researchers say that the demographic shift of an increasing older population will have an impact on family caregiving. “The caregiver support ratio compares the number of people ages 45–64 (peak caregiver age) to the number ages 80+ (peak care need),” notes the report. Today, there are about 7 people ages 45–64 for every person age 80. By 2050, that ratio will drop to 3 to 1.

America’s older population is also becoming more diverse, reflecting overall trends in the general population. Across the States researchers note that the Hispanic population age 65 and over is projected to quadruple between 2015 and 2050.

Finally, Across the States report notes that State Medicaid LTSS systems are becoming more balanced due to the increase of state dollars going to fund home and community-based services (specifically to care for older people and adults with disabilities). But, this trend varies in level of balance, say the researchers, noting that: “The percentage of LTSS spending for older people and adults with disabilities going to HCBS ranged from 13 percent to 73 percent in 2016. While 40 states became more balanced, 11 states became less balanced for older adults and people with physical disabilities in 2016 compared with 2011.”

Taking a Closer Look

Across the States notes that the age 85 and over population is projected to significantly outpace all other age groups when the aging baby boomers begin turning age 85 in 2031. In 2015, people ages 85 and older made up 2 percent of the US population. By 2050, they are projected to represent 5 percent. By contrast, in the Ocean State the age 85 and over population was 2.7 percent of the state’s population. By 2050, look for the oldest-old population to inch up to 5.4 percent.

Throughout the nation the cost for private pay nursing facility care is well out of reach of most middle-income families. Across the States notes that in 2017 the annual median cost for nursing facilities is $97,455 for a private room and $87,600 for a shared room. But, in Rhode Island the annual cost is higher, with a private room costing $ 104,025 and $ 101,835 for a shared room. The researchers say that for the cost of residing in a nursing facility for one year, a person could pay for three years of home care or five years of adult day services.

Because of the high costs, most people go through their life savings paying for costly care and ultimately have to rely on the state’s Medicaid program. Nationally, the percent of Medicaid as primary payer in 2016 was 62 percent (61 percent in Rhode Island).

According to Across the States, family caregivers provided $470 billion worth of unpaid care in 2013, more than six times the Medicaid spending on home and community-based services. In Rhode Island, 134,000 provided 124 million hours of care annually with an economic value $ 1.78 billion. But, AARP’s report warns federal and state policy makers about the stark demographics in America’s future that will for the nation’s “Oldest Old” to scramble to find a caregiver, due to a shortage. Will state’s have the financial resources to fund programs and services to make up for this demographic reality.

For a copy of Across the States report and Rhode Island specifics, go to: http://www.aarp.org/content/dam/aarp/ppi/2018/08/across-the-states-profiles-of-long-term-services-and-supports-full-report.pdf.