National Family Caregivers Month: State-by-State Roadmap on Assisting Caregivers

Published in RINewsToday on November 3, 2025

Over three months ago, AARP and the National Alliance for Caregiving (NAC) released Caregiving in the US. 2025, warning of a major crisis facing America’s 63 million caregivers. The 133-page report, released on July 23, noted a 45% increase in the number of caregivers over the past decade and concluded that caregivers are at a “crisis point.”

The first Caregiving in the US report, released in 1997 by AARP and NAC, is widely regarded as one of the most authoritative data sources on family caregiving in America. Subsequent editions followed in 2004, 2009, 2015, 2020, and now 2025—each providing updated information on caregiver demographics and the evolving realities of caregiving in America.

A First-of-its-Kind State-by-State Data Analysis

Building on the national Caregiving in the US 2025 report, AARP and NAC recently unveiled a first-of-its-kind state-by-state caregiving data analysis. The 248-page report reveals how much local factors—down to your community or ZIP code—shape the caregiving experience, exposing deep financial and emotional challenges confronting millions of family caregivers.

Researchers found that state policy choices make a measurable difference: states offering stronger supports such as paid leave, respite care, and health system integration report far better outcomes for caregivers.

Rhode Island was among 19 states without sufficient sample sizes to support detailed analysis beyond prevalence and the estimated number of caregivers. For these states, only those metrics were included.

According to AARP and NAC, the report identifies a consistent pattern: states with the highest caregiving prevalence often have the fewest supports. Geography, policy, and community resources together determine whether families can manage care—or collapse under its weight.

The takeaway: where you live often determines whether you get relief or reach a breaking point.

With 63 million family caregivers nationwide—nearly one in four adults—the report underscores the urgent need for coordinated policy solutions at both the federal and state levels.

“Caregivers are the invisible backbone of our broken long-term care system and economy, and too many are paying the price out of their own pockets—risking financial security by taking on debt, using up savings, and leaving bills unpaid,” said Nancy LeaMond, AARP’s Executive Vice President and Chief Advocacy & Engagement Officer, in an Oct. 28 statement announcing the report. “This new data offers the clearest picture yet of America’s caregivers and a roadmap for the change they urgently need.”

AARP is urging Congress and state legislatures to adopt commonsense policies that help caregivers save time and money—and get the support they need.

“These state-by-state disparities expose how policy choices determine whether families thrive or collapse under caregiving responsibilities,” said Jason Resendez, President and CEO of NAC. “When financial strain hits 59% of family caregivers in Georgia compared to just 34% in Minnesota—meaning where you live can double your risk of economic hardship—it’s clear that patchwork state solutions aren’t enough.”

Rhode Island Specifics

Ahead of National Family Caregivers Month, AARP Rhode Island released its state-level caregiving data. The findings show that 23%—approximately 206,000 Rhode Island adults—provide largely unpaid care to parents, older spouses, and other loved ones. The data underscores the urgent need for legislative action to better support these caregivers.

“When a loved one needs help, family members, friends, and neighbors step up—that’s what we do,” said Catherine Taylor, AARP Rhode Island State Director. “But too often, caregivers carry this responsibility alone, putting their finances, health, and jobs at risk. As our state ages, the demand for care will only grow. With this new data and ahead of the 2026 legislative session, AARP Rhode Island is urging policymakers at every level to act now.”

AARP Rhode Island estimates that family caregivers provide $2.1 billion in unpaid care each year, enabling loved ones to remain at home and in their communities—where they want to be. Caregivers routinely handle a wide range of tasks, from bathing and meal preparation to managing medications and medical procedures, often without formal training.

Key Rhode Island caregiving statistics:

·         99% assist with instrumental activities of daily living (meal prep, administering medicine, managing finances)

·         65% assist with personal care (bathing, dressing, feeding)

·         55% perform medical or nursing tasks

·         40% provide high-intensity caregiving (many hours and complex care)

·         19% deliver at least 40 hours of care per week

The personal toll is significant:

·         80% of caregivers use their own money to meet their loved ones’ needs—averaging $7,200 annually, or 25% of their income

·         44% report financial setbacks, including debt, depleted savings, or difficulty affording food and medicine

·         70% juggle full or part-time jobs, with many reducing hours or leaving the workforce—jeopardizing their long-term financial security

A Call to Action

A dysfunctional Congress and state legislatures must directly confront the skyrocketing number of caregivers in America.

AARP and NAC along with the Alzheimer’s Association are calling on policymakers to strengthen financial supports—starting with federal legislation such as the Credit for Caring Act, which would provide a tax credit of up to $5,000 for working caregivers, and the Lowering Costs for Caregivers Act, which would expand flexible spending and health savings account uses.

States can also act by ensuring Medicaid home- and community-based care options are accessible, allowing caregivers to earn compensation, integrating caregiver recognition and training into the health care system, and adopting best practices from top-performing states.

In Rhode Island, advocacy groups including AARP, the Senior Agenda Coalition of RI (SACRI), and the Alzheimer’s Association Rhode Island Chapter have made significant progress. Rhode Island’s Temporary Caregiver Insurance (TCI) program—now offering eight weeks of paid leave at 75% wage replacement—helps family caregivers maintain income stability while providing care.

“In continuing our ongoing advocacy on behalf of caregivers, during the 2026 Rhode Island General Assembly session SACRI will prioritize legislation introduced last year — the creation of a state caregiver tax credit and advocate for the inclusion of respite services for adults under the Medicaid program,” notes Maureen MaigretSACRI Policy Advisor.

Maigret points out that a 2021 AARP study found the average caregiver spends $7,242 out of pocket each year caring for a loved one. “It’s a huge financial burden for many caregivers, especially as the cost of living continues to rise and 40% of caregivers report household incomes of $50,000 or less,” she says, referencing the 2021 Rhode Island Behavioral Risk Factor Survey. “A recent state survey also found that short-term respite is one of the most commonly requested services that caregivers say would help support their needs.”

“Supporting caregivers is not just compassionate—it’s smart policy. In 2024, Rhode Island spent $614 million in Medicaid costs related to dementia. By strengthening caregiver supports—like respite services, dementia-specific training, and care navigation—we can help families keep loved ones at home safely for longer and avoid more costly levels of care,” says Donna McGowan, Executive Director, Alzheimer’s Association Rhode Island Chapter.

“Thoughtful policy and targeted funding is not only the right thing to do—it’s a wise investment in the health and future of our state,” notes McGowan.

To get a copy of Caregiving in the US 2025 go to https://www.aarp.org/pri/topics/ltss/family-caregiving/caregiving-in-the-us-2025/

To get a copy of Caregiving in the US 2025: Caring Across the States, go to https://www.aarp.org/pri/topics/ltss/family-caregiving/caregiving-in-the-us-2025-caring-across-states/

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To access free caregiver tools and local resource guides, visit:

·         AARP Rhode Island “Guide for Caring for Older Adults in Rhode Island helps family caregivers access key programs, services, and agencies right in their community.

·         AARP’s online Caregiving Hub has tools and information available in English and Spanish.

·         AARP and United Way Worldwide’ s 211 program connects Rhode Island family caregivers to essential local services for themselves and their loved ones via the 211 helpline.

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

Published in RINewsToday on October 14, 2024

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

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

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

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

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

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

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

The Costs

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

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

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

Examining the Differences…

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

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

The Trump proposal

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

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

 Dementia caregiving already set to quadruple in 2025

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

Praise for expanding Medicare benefits

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

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

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

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

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

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

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

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

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

Pay attention to Caregiver voters

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

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

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

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

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