Tag Archives for caregiving

Caregiving Still a Crisis in America, Pew Report Confirms

Published in RINewsToday on March 9, 2026

Last summer, AARP and the National Alliance for Caregiving (NAC) released their 133-page report, Caregiving in the U.S. 2025, widely regarded as one of the most comprehensive sources of data on family caregivers in America. Seven months later, the Pew Research Center (PRC) expanded the national caregiver debate, releasing its own report, Family Caregiving in an Aging America. This report confirmedthe results of AARP and NAC’s sweeping report, while adding fresh insight to a rapidly growing body of research on caregivers.

These two caregiver reports highlight a powerful demographic trend: the continued graying of America’s population, creating a growing need for Congress and state governments to enact laws to assist the nation’s 63 million family caregivers. At the same time, mounting evidence reveals that increasingly family members are stepping into caregiving roles and responsibilities. The Pew survey released last week which examined the experiences of caregivers, found that the demands of caregiving intensify as family members reach the age of 75 and older.

“Aging in America is one of the most profound demographic trends shaping our society today,” observes Kim Parker, PRC’s director of social trends research, in a Feb. 26, 2026, statement announcing the results of its first-ever caregiver study. Parker emphasized that caregiving for an aging family member encompasses a wide range of responsibilities, including running errands, managing finances, navigating medical issues, and providing hands-on personal care.

“Helping in these ways has a direct impact on the lives of caregivers,” Parker said, stressing that caregiving often strengthens relationships between caregivers and those receiving care. But particularly when it comes to supporting an aging parent, many caregivers say it has taken a toll on their personal well-being, finances, careers, and even their social lives, Parker added.

Taking a Look at Key Findings

The study findings revealed that one in ten U.S. adults reported being a caregiver for a parent aged 65 or older. Another 3% cared for a spouse or partner in that age group.  Fewer than 1% reported caring for both an aging parent and an aging spouse or partner. However,  survey data show that caregiving rates rise significantly among those with older loved ones: 24% of adults with a parent aged 65 or older identify themselves as caregivers, as do 25% of those with an aging spouse or partner.

Consistent with previous research, gender plays a role in taking on caregiving roles and responsibilities. Among adults with an aging parent, spouse, or partner, 28% of women identify as caregivers, compared with 23% of men.

Men and women caring for an aging parent are about equally likely to say that helping with activities of daily living has strengthened their personal relationships.

However, women note that they are more likely than men to report negative effects on their emotional well-being (47% vs. 30%) and physical health (38% vs. 26%).

As to finances, the study found that income also plays a role in who becomes a caregiver.  Among adults with an aging parent, spouse, or partner, 39% of lower-income adults identify as caregivers, compared with 23% of middle-income adults and 16% of upper-income adults.

What Caregivers Do

Roughly two-thirds of adults caring for an aging parent (68%) and a similar share caring for an aging spouse or partner (66%) regularly provide help with at least one key activity of daily living. These tasks include running errands, managing household chores and home repairs, scheduling medical appointments, managing medications, handling finances and paying bills, and also assisting with activities of daily living such as bathing or dressing.

The survey findings also indicate that adults who provide care for an aging parent with at least one of the tasks tend to report that this has had a more positive than negative impact on their relationship with their parent. On balance, caregivers find that this experience has a more negative impact on their physical health, emotional well-being, job (among those employed), finances, and even their social life.

While caring for an aging spouse or partner regularly involves helping them with activities of daily living, they say that this experience has had a more positive impact on their relationship. But unlike their peers caring for an aging parent, their views on physical health, emotions, finances, and social life are more mixed, rather than mostly negative.

Advocates Say Caregiver Crisis Demands Swift Action

“The PRC’s survey findings further validate what other research and caregivers themselves have been telling us — that they’re sacrificing their health, their finances, and their careers to care for the people they love, often with very little support,” says Jason Resendez, NAC’s President & CEO.

According to Resendez, the PRC’s survey findings confirm the findings of AARP and the NAC’s Caregiving in the U.S. 2025 report.  He noted that caregiving falls hardest on those least equipped to handle it. Lower-income families and women carry a disproportionate share of the load. These patterns are consistent with what caregivers on the ground routinely describe.

Like other research findings, Resendez notes that PRC’s report highlights that social isolation, financial strain, and career disruption are widespread among caregivers — yet these tend to get overshadowed in public conversation by the more visible emotional toll. The sharp increase in caregiving demands once a parent crosses into older age brackets is also an underappreciated threshold that catches many families off guard, he says.

PRC’s survey findings, says Resendez, paint burnout not as a single breaking point but as a compounding experience — emotional exhaustion layered with their own declining physical health, shrinking social lives, strained finances, and career setbacks, all happening simultaneously.

“Women in particular experience this accumulation more acutely than men, suggesting burnout has a deeply gendered dimension,” he says.

“The PRC report shows broad, bipartisan public support for concrete interventions: tax relief, respite care, paid family leave, and direct financial assistance,” says Resendez.  Preparation means building infrastructure around these supports before the aging population surge overwhelms families who are already stretched thin, he adds.

When asked what success would look like in reducing caregiver burden by 2030, he responded: “Success would mean closing the income and gender gaps in who bears the caregiving burden, fewer caregivers reporting harm to their health and well-being, and widespread adoption of the financial and workplace supports that the public already overwhelmingly favors. The benchmark is simple: caregiving should not systematically impoverish or exhaust the people doing it,” he says.

Inside the Beltway, aging groups are pressing Congress to support financially struggling caregivers. AARP, representing 38 million older adults, reports that on average, family caregivers spend over $7,200 annually—26% of their income—on out-of-pocket expenses.

“America’s family caregivers put family first, helping their parents, spouses, and others stay at home,” said Nancy LeaMond, AARP Executive Vice President and Chief Advocacy & Engagement Officer. “They spend thousands of dollars every year on this care, while juggling work and family responsibilities. We urge Congress to put money back into the pockets of hardworking family caregivers by passing the bipartisan bill, The Credit for Caring Act,” she says.

The Senate bill (S 925), introduced in the Senators Shelley Moore Capito (R-WV) and Michael Bennet (D-CO) and in the House (H.R. 2036) by Representatives Mike Carey (R-OH) and Linda Sánchez (D-CA), offers up to a $5,000 nonrefundable federal tax credit to help offset caregiving expenses, addressing the significant personal and financial sacrifices caregivers make to support their loved ones.

AARP says respite care is essential to preventing caregiver burnout, yet access remains limited and uneven, leaving many caregivers without the breaks they need to continue caring for loved ones. The aging advocacy group is calling on Medicaid to strengthen home- and community-based services, reduce unnecessary red tape, and ensure that family caregivers can access supports such as respite care and training.

Family caregivers provide more than $600 billion worth of care each year, and that labor should earn them benefits through Medicare and Medicaid, says Maggie Ornstein, PhD, a public health geographer, guest faculty member at Sarah Lawrence College, and a family caregiver for more than 30 years who writes extensively on caregiver issues.

Ornstein agrees with AARP’s call to strengthen Medicaid and argues that home care should be a required benefit under the program, just as institutional care is. “Wages for home care workers need to be increased,” she says, noting that providing living wages would make these jobs more desirable and, in turn, better support family caregivers.

“There is also an urgent need for Medicare to cover home care and related services,” Ornstein adds. “Coverage should also be available to caregivers before the standard age of eligibility. Similar to how people with permanent disabilities qualify for Medicare, eligibility could be expanded to caregivers who provide more than 20 hours of care per week,” she says.

Ornstein notes that direct payment to caregivers is popular (63% in PRC’s study) and would have the biggest impact on caregivers. “We know that caregivers often have to reduce paid employment or leave work entirely, so direct payment in the form of wages or ‘caregiver allowances,’ as provided in countries like Canada, Australia, Germany, and the UK, would help with financial security,” she says.

Research suggests, says Ornstein, that caregivers lose more than $300,000 in wages and benefits over their lifetimes. “Tax credits, while often the most widely discussed policy response, would do little to help the lowest-income and most vulnerable caregivers. Proposed tax credits would need to be refundable to have the most impact, but even then, direct payments would better bolster financial well-being, which should be a main policy priority,” she says.

Other policies, such as the Social Security Caregiver Credit Act, need more public attention, too, says Ornstein, emphasizing that providing Social Security credits to caregivers who leave work to provide care would be transformative for their retirement.

Finding a Care Giver Policy Fix in Rhode Island

With the release of the PRC caregiver survey findings, it is more important than ever to spotlight the vital role of our state’s caregivers, says SACRI Policy Advisor Maureen Maigret, who calls caregivers the backbone of Rhode Island’s long-term services and supports system.

According to Maigret, the PRC report highlights that lower-income adults with an aging parent, spouse, or partner are more likely to serve as caregivers than those with higher incomes. “That is why SACRI views the passage of a caregiver tax credit bill as a priority,  one that will help offset the financial burden faced by so many caregivers,” she says.

H7241, sponsored by Rep. Susan R. Donovan (D-Dist. 69, Bristol, Portsmouth), and S. 2246, sponsored by Sen. Linda L. Ujifusa (D-Dist. 11, Portsmouth, Bristol), would provide a tax credit of up to $1,000 for a family caregiver caring for an older adult or a person receiving Social Security Disability who requires assistance with two activities of daily living. The proposal would cover up to 50 percent of eligible expenses, capped at $1,000.

Supporters say that establishing a caregiver tax credit would help older adults and people with disabilities remain in their homes while also reducing costly Medicaid expenditures on nursing home care, which can exceed $100,000 annually.

A Final Note…

One of the biggest unanswered questions about caregiving in America today is whether there is the political will in Congress to support family caregiving.

“The PRC’s report shows that relationships are strengthened through both providing and receiving care. When caregivers are not supported in that care, they experience significant stress,” Ornstein said.

“We have an opportunity to value the care provided by family and non-kin caregivers across the country and, in doing so, strengthen our communities. Instead, we have a system that abandons, neglects, and exploits family caregivers. We need more people to decide that this is unacceptable and to demand the support caregivers earn through the work they do every day,” Ornstein adds.

To read PRC’s caregiving report, go to https://www.pewresearch.org/social-trends/2026/02/26/family-caregiving-in-an-aging-america/

To get a copy of Caregiving in the US 2025: Key Trends, Strains, and Policy Needs, go to https://www.aarp.org/pri/topics/ltss/family-caregiving/caregiving-in-the-us-2025/

For state-specific caregiving data, go to https://www.aarp.org/pri/topics/ltss/family-caregiving/caregiving-in-the-us-2025-caring-across-states/

2025: A Year on the “Age Beat” in Rhode Island

Published in RINewsToday on December 29, 2025

Throughout 2025, this “Age Beat” columnist published a weekly commentary covering an extensive list of aging, healthcare, and medical issues. During this year, this columnist followed Congressional debates inside the Beltway involving Medicare, Medicaid, reauthorization of the Older Americans Act, and Social Security, reporting on how these federal policy proposals would affect older Rhode Islanders.  During the latest legislative session of the Rhode Island General Assembly, policy debates on Smith Hill were also covered in my weekly commentaries, examining how the proposed bills or enacted laws would impact state programs and services serving Rhode Island’s growing older population.

After reviewing the latest U.S. Census Data, it becomes very clear that the state’s aging population continues to grow.  For more than twenty-five years, I have tracked and continue to follow the graying of Rhode Island’s population.  Through more than 50 articles published in 2025 in Blackstone Valley Call & times and its sister publications, RINewstoday, Senior Digest and other statewide outlets, these stories have decoded complicated public policy debates, and demographic trends to shed light as to how they affect the daily lives of older adults, their caregivers, and nonprofit organizations that serve them.   

Some might interpret my weekly reporting as a way that specifically looks at older adults as one group of people.  However, others might see them on how aging impacts our own family members and our neighbors, and how we all deal with real-life challenges as we get older.

 Themes from Past Year’s Coverage

 Over the past year, several themes have become clear:  the economics of growing older and financially surviving retirement; staying safe from increasing sophisticated scams, public health issues surrounding loneliness and food insecurity; limited public transportation, finding a primary care physician, and managing multiple chronic illnesses.  Many of these commentaries also looked closely at state and federal policies that led to cuts in Medicare and Medicaid; the pressure points placed on Rhode Island’s safety net; and the ongoing policy questions the Rhode Island General Assembly is asking about how to help older adults stay independent at home—not just to live  longer, but live better.

You learn very quickly that national policy debates don’t go the same way here,, if you’ve lived in the Ocean State for a while.  A change in federal requirements of the Supplemental Nutrition Assistance Program (SNAP) or changing eligibility requirements and cuts to Medicaid funding are not distant Washington stories reported by the Washington Post or New York Times especially if they affect food, meal deliveries and health care provided in Providence, Pawtucket, Woonsocket, or Westerly. A change in Medicare drug pricing is not an abstract concept if it determines whether your older neighbor can fill a lifesaving prescription—or whether your spouse’s non-drug compliance stretches pills just to make them last.

 Many of these articles were tied to timely triggers—AARP reports detailing findings of national surveys and polls, a Senate Aging Committee or Congressional hearing putting a spotlight on an aging issue, a proposed legislative proposal being considered by Congress or the Rhode Island General Assembly. But the reporting doesn’t just give a concise summary of a policy issue. The point of these commentaries is to shed light on the issues by asking: “So what does this mean for older Rhode Islanders?” Where are the funding gaps?”  “Who is being left out?  “What can be done now while larger reforms slowly grind their way forward, only to be enacted years later?”

 Many of the commentaries published this year focused on out-of- pocket costs that increase with one’s aging —especially skyrocketing medical expenses. Even when Medicare covers a significant portion of one’s care, many older adults still face overwhelming costs, from premiums and co-pays to dental and vision needs, to uncovered services and especially costly prescription drugs and nursing home care.  The reporting also examined pending questions about Medicare’s financial future, including whether the program will be able to pay beneficiaries full benefits beyond 2033, or face potential benefit cuts.  Even the Washington, DC-based National Committee to Preserve Social Security and Medicare’s call for expanding the retirement program, along with raising the cap to enable Social Security to pay its bills made it into these commentaries.

 Another common theme in this year’s published commentaries is the recognition that aging affects not only our bodies and wallets, but also our emotions and relationships as well. The past year’s reporting on the role of loneliness and isolation serves as a reminder of how harmful they can be, especially when they lead to worse health outcomes.  In these writings, the goal is not to romanticize “community” but to show how social connection and networks in a “community” can be a good way to improve one’s health.

 The commentaries on loneliness do not regard the negative emotional response as a personal deficiency but rather as a significant policy concern influenced by the persistent scarcity of affordable housing, inadequate public transportation, mobility limitations, the loss of spouses and friends, and communities designed around the use of cars rather than their pedestrian walkability or accessibility.  How we view this matters because it is the framing that shifts the discussion away from “Why don’t older adults get out more?” to “What community barriers make connections harder to make—and what public supports are needed to make community connections possible?”

 Taking a New Look at Being Age-Friendly

The commentary on “age-friendly” thinking shows how Rhode Island’s 39 cities and towns can change their programs, services, and public spaces to keep older adults engaged in their community instead of primarily isolated. The announcement that the City of Pawtucket had joined Newport, Cranston, Providence, Westerly, and Bristol to become one of Rhode Island’s Age-Friendly Network Communities is an example.  We hope to report on more communities doing the same.

Over the past year, coverage of food insecurity, and a profile on the Meals on Wheels of Rhode Island, have helped to answer bigger policy questions:  What happens when demand goes up but and payments don’t? How do people get on waiting lists?  “What does “service disruption” mean for someone living at home? And how much does it cost—both in money and in people, when these programs have to be cut back?

One of the most important things we’ve reported on this year is consumer protection, especially when it comes to scams that target older people, because they are often the ones that more easily fall for scams because they have savings and are concerned about them, aren’t as familiar with digital manipulation, or have cognitive impairment.  There are many reasons why this topic is important right now, especially with new technology being used to spread scams.  And the Rhode Island General Assembly has been quick to act.  One commentary informed readers that Rhode Island has passed a new law to crack down on Crypto ATM fraud, making it the 12th state to do so.

 The best reporting on scams doesn’t just explain the tricks and why people fall for them – it also keeps the reader updated as to how scams keep changing.  Plus, it gives you practical tips as to how to avoid them, like pausing before you respond, double-checking what you’re told, and turning to someone you trust if something feels off, verifying, and seeking trusted help before acting. I wrote about these tips in great detail.

These consumer protection commentaries didn’t blame the victims, rather by framing scams as a systemic program caused by new technology and weak verification standards. And it makes this point clear.  Scams are not just seen as financial crimes; they can also cause shame, isolation, and stress that can harm your health.

 Caregiving is also another common topic in this year’s published commentaries. Aging advocates will tell you that caregivers are the hidden backbone of providing care to those in need.  They will tell you that family members, friends, and neighbors help out in ways that would otherwise need paid services or institutional care.  An AARP report says that about 121,000 in Rhode Islanders provided unpaid care to others in 2021 – estimated to be valued monetarily at over $2.1 billion.

 These commentaries on caregiving don’t talk about it in terms of sentiment, but in terms of policy, taking a look at time costs, impact on jobs, burnout, and the lack of enough respite support. The reporting also helps to shed light on common caregiver stress, and that needing help is not a personal failure but a normal result of  demographics and underfunded state programs and services.

When National Policy Hits Close to Home

In Rhode Island, where community-based services are important  to “aging in place,” the weekly coverage has helped readers to understand the whole long-term care continuum—from home care to day care to senior centers to assisted living to nursing home care, if needed.

 At best, access to health care is uneven; transportation is a barrier to many; affordable, accessible housing is limited; and the Medicaid-funded workforce that helps people stay at home is overworked and underpaid.  Older adults are dealing with rising costs for food, utilities, and rent or home upkeep, as well as the effects of inflation.

 Although many of this year’s commentaries put the spotlight on policy issues that need to be fixed, they also provide state policy makers ideas to solve these issues.  These are advocacy groups age-friendly planning; stronger protections for consumers; smarter use of technology; and increased state funding that treats community-based supports as cost-effective interventions rather than optional add-ons.

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

Published in RINewsToday on March 3, 2025

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

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

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

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

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

The Caregiver Journey Begins

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

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

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

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

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

A Guide for America’s Caregivers

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

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

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

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

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

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

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

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

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