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National survey says care for older adults needs urgent rethinking 

Published in RINewsToday on January 27, 2025

With President Trump’s administration beginning and a new Congress poised to rethink, among other issues, Social Security, Medicare and federal aging programs and services, it might be prudent for the president and lawmakers to take a quick glance at the findings of a recently released national survey, “Meeting the Growing Demand for Age-Friendly Care: Health Care at the Crossroads.”

This 52-page national report, was released on Sept. 17, 2024 by Emeryville, California-based Age Wave, a think tank that studies the social, financial, healthcare, and business impacts of aging and The John A. Hartford Foundation (JAHF), a New York based-foundation dedicated to improving care of older adults. The survey was conducted by The Harris Poll, a marking and analytic company tracking public opinion in existence for over sixty years ago.  

According to the U.S. Census Bureau, America’s population of adults over 65 is expected to skyrocket, from 56.1 million in 2020 to 82.1 million by 2050. The enormous  increase in the number of older adults is forcing states, Congress, and the private sector to rethink their approaches to health care, social services, housing and more, to help older adults live well as they age.

As millions of Baby Boomers (born 1946 to 1964) age, living longer than previous generations and seeking ways to maintain wellness and independence to age in place, this nationwide survey shows deep dissatisfaction among older Americans aged 65 and over with health care and services they receive that do not meet their specific needs and preferences. 

Finding Policy Solutions to Maximize “Golden Years”

The national survey reported that four in five older adults (82%) say the U.S. health care system is not prepared for the growing and changing needs of America’s aging population. Just one in 10 (11%) give the health care system an ‘A’ grade. Instead of the status quo, older adults say they want solutions that will maximize their golden years, like interventions that make care more affordable, innovations to reduce or prevent cognitive decline and health care providers who understand what matters most to them when assessing care options.

“Older adults are stuck in a health care system that is not responsive to their goals and preferences. Boomers want health care that maximizes their health and ability to function, and they want their providers to listen to them,” said Terry Fulmer, JAHF’s president, in a Sept. 17 statement announcing the release of the report. “It is not too late to pivot to age-friendly care, which prioritizes the needs and desires of older adults in their care plan. There are many innovative approaches to help older adults live every year to its fullest, not just increase the number of years they live,” she says.

International longevity and aging expert, Ken Dychtwald, founder and CEO of Age Wave, added: “The United States is on the brink of an age wave of unprecedented proportions, and American health care requires a radical and immediate rethink to match our health spans, or being able to live every year to its fullest, to our lifespans.”

Dychtward urged policy and business leaders to prepare for older adults making up a large and growing percentage of the U.S. population. “Everyone knows this day has been coming, but our survey shows that older adults do not like the choices or care currently offered to them. And the fact that although we spend more per capita on health care than any country in the world yet have worse lifespans and health spans is cause for alarm,” he said.

The age 65 and over survey respondents called for America’s health care system to offer “age-friendly care.” Most older adults (94%) say it is more important to maintain quality of life than it is to live as long as possible.

Only three in five older adults with a health care provider (58%) report that their providers currently ask about what matters to them. Though older adults fear Alzheimer’s and dementia more than any other health condition, for example, less than half (40%) say their health care providers routinely evaluate their cognitive health and brain functioning. Similarly, less than half of older adults (45%) say their health care providers evaluate their mental health, and although the ability to walk freely without pain is top of mind for older adults, just 55% say their medical care providers evaluate their mobility and physical fitness. 

The national survey findings indicated that the older respondents say that there are not enough qualified care providers. Nearly all older adults (94%) say that health care providers should be trained on the unique health issues of people 65 or older, but only 10% of medical schools require a rotation in geriatric care, compared to 96% that require a rotation in pediatric care. 

Between 2000 and 2022, the U.S. population of adults aged 65 and older rose 60%, but the number of geriatricians dropped by a whopping 28%. says the report. 

Not surprisingly, the survey findings indicate that health care costs are viewed as “unaffordable” and of a bigger concern to older adults than living expenses, inflation, tax increases and an economic downturn or recession. For instance, just 16% give an ‘A’ grade to satisfaction with their out-of-pocket costs. Older adults are especially concerned with the cost of long-term care, stressing that one of their greatest concerns is not being able to afford future health and long-term care needs (68%), and that the government should prioritize having Medicare cover long-term care (80%).

Differing Views of the Quality of Nursing Home Care

An estimated 36 million Americans have a family member or friend living in a nursing home or memory care facility today, according to the survey. Just 37% of those adults ages 18+ say their family member or friend living in a nursing home or memory care facility receives high-quality care. Only half (50%) say these facilities are the safest place for them.

There must be more coordination between primary care providers and other health care providers. While 52% of Medicare beneficiaries see more than three physicians per year, half of older adults from the survey say their primary care provider does not coordinate their treatment with their other health care providers. The report notes that this may be attributed to the increasing shortage of primary care providers, which makes it less likely for people to have a usual source of primary care or long-term relationship with a primary care provider.

As noted in Primary Care in Rhode Island, in 2024, from 200,000 to 400,000 Rhode Islanders lack access to a primary care provider, resulting in a shortage of 133 to 266 primary care physicians to treat them.

Finally, more than half of older adults (56%) say it is challenging and very stressful to navigate the current health care system, while nearly two in three (62%) say health insurance plans provide too many confusing choices. Research has shown that more than half (55%) mistakenly believe Medicare will cover a long-term stay in a nursing home, the report added.

As the new Congress begins its debate on aging policy, regardless of political party, the national survey reports that their older constituents want public policies enacted that support quality care.  The survey findings indicate that adding long-term care to what Medicare covers is supported by most Republicans (76%), Democrats (84%) and independents or people with other political affiliations (79%). Additionally, there is bipartisan support for improving quality at U.S. nursing homes also earns bipartisan support (Republicans 62% support, Democrats 68% support, independents or people with other political affiliations 65% support). 

“Better federal and state policies can encourage the development of age-friendly health systems, that focus on improving patients’ well-being and quality of life,” predicts JAHF’s Fulmer. “Policies could include new options for affording long-term care insurance and developing a federal strategy to ensure disadvantaged populations are prioritized in a national strategy for age-friendly care,” she says.

Report Offers 5 Key Suggestions to Improve Care to older Americans 

After reviewing all survey findings, JAHF identified five key recommendations to improve health care provided to older adults and to promote healthier, happier aging.

JAHF calls for promoting age-friendly care that can assist the nation’s older adults maintain their health, ability to function, thus maintaining their independence in the community. Pursuing scientific breakthroughs could bring the end to diseases like Alzheimer’s adds JAHF, calling for social isolation must be addressed. 

Assist family caregivers with skill-building tools, policies that allow flexibility in taking paid leave and ensuring care providers coordinate among multiple providers the health care system easier to navigate. 

Finally, JAHF calls for the creation of a ‘national master plan for aging’ that will be focused on meeting the needs of older adults. This plan would identify and address barriers that contribute to inequities, also creating a strategic plan that would provide a roadmap to reform the financing of long-term care, enhance the quality of nursing home care and to create systems to assist people to age in place at home rather than being admitted to acute and congregate settings. 

“We are at a unique crossroads. However, changing America’s health care system to meet older adults’ expectations is possible, practical and could lead to greater health at a far lower cost—and can benefit the government, private enterprise and consumers,” said Dychtwald. “Older adults deserve health care partners who understand what they are going through, have the skills to most effectively support their patients and act on what their customers want,” he says.

The Nuts and Bolts Behind the Study 

The study was conducted by Age Wave on behalf of The John A. Hartford Foundation and in partnership with The Harris Poll. After thorough review of secondary research and through qualitative research with older adults through online focus groups, a  nationally representative online survey was conducted from April 17 to May 9, 2024. Of 5,023 adult (age 18+) respondents, 2,516 were age 65 and older. Data were weighted where necessary to align them with their actual proportions in the population, including by age, gender, race/ethnicity, region, education, household income, size of household, marital status, and political party affiliation. 

Note:  The full report, Meeting the Growing . for Age-Friendly Care: Health Care at the Crossroads, can be found at https://www.johnahartford.org/images/uploads/resources/The_Growing_Demand_for_Age-Friendly_Care_Report_FINAL.pdf.

To watch the “Webinar: What Older Adults Want: Emerging Breakthroughs & Opportunities for Age-Friendly Care, go to https://www.youtube.com/watch?v=ZK6D4-G3KPw.

Chair Casey leaves mark on national aging policy. Leadership changes in DC and RI 

Published in RINewsToday on December 16, 2024

Last week, U.S. Sen. Bob Casey (D-PA), Chairman of the U.S. Senate Special Committee on Aging, held his last hearing, entitled “Empowering People with Disabilities to Live, Work, Learn, and Thrive, in SD 106.  This hearing was his swan song as Chairman of the Senate Aging Committee. 

The 3-term Democratic Senator, first elected in 2006, lost his reelection bid for a fourth term to Republican Dave McCormick, a West Point graduate, combat veteran and Bronze star recipient, and a national security expert, and former hedge fund manager.  A recount of votes confirmed that Casey lost by 16,000 votes (3,398,628 to 3,382,423) and he conceded the race on Nov. 21st.

With the dust settling after the Nov. 5th presidential election, Republicans will take control of the legislative agenda of the upper chamber, with a 53-47 majority, and control the house.

According to a Senate Aging Committee, during the upcoming 119th Congress Sen. Tim Scott (R-SC), a former Ranking Member, is expected to replace Casey as chairman on Jan. 3rd, 2025. Former Ranking Member Mike Braun (R-Ind) will leave the Senate after becoming Governor-elect of Indiana. 

An advocate for America’s seniors

During the 118th, the Senate Aging Committee under the helm of Casey held 18 full hearings, five field hearings, and one joint full hearing.  His final hearing, lasting one hour and 46 minutes, highlighted his long record as a champion for people with disabilities, and laid out his vision for how Congress must continue to work to empower them. 

“From the beginning of my time in the Senate, I heard a constant refrain from disability advocates that their needs were not being met—they faced barriers to save for their future, they were being paid well below a living wage, and they could not afford or access the care they needed,” says Casey in his opening statement. “Those refrains, including from some of the people we heard from at today’s hearing, are what inspired me to make people with disabilities a focus of my Senate career and time as Aging Committee Chairman,” he said.

During his 18 years in the Senate, Casey has been one of the foremost champions in Washington for people with disabilities. He created the Stephen Beck Jr. Achieving a Better Life Experience Act (ABLE) program, which has helped hundreds of thousands of families save for long-term care for their disabled loved ones with a tax-advantage savings account. The Associated Press hailed this legislation as “the most important new law for [those with disabilities] in 25 years.  He also made federal websites more accessible for people with disabilities, and propelled the fight for access to home care to the forefront of the national conversation. 

In addition, the Pennsylvania Senator led efforts to improve care in nursing homes by expanding and strengthening oversight over poor-performing facilities while ensuring that nursing homes and long-term care facilities have the resources they need to provide high-quality care to residents. His work has led the Centers for Medicare and Medicaid Services (CMS) to publicly release information about nursing facilities with a documented pattern of poor care, ensuring older adults and their families have the information they 

At the Dec. 12th hearing, Chairman Casey also released a series of issue briefs documenting his record chairing the Aging Committee on making government technology accessible, expanding access to home care, improving nursing homes, lowering prescription drug costs, and ensuring economic security for older adults:

“We have made a lot of progress, from creating the ABLE program to making government technology more accessible,” Casey continued. “But as we heard today, there is still a lot more to do—from expanding access to home care to finally phasing out the subminimum wage,” he added.

Kudos to Casey’s advocacy for America’s disabled Seniors

At the hearing, witnesses from Pennsylvania and national organizations testified about the impact of Casey’s work impacting the disability community in the Commonwealth and around the country.

I want to thank Senator Casey for your leadership. None of the successes I outlined would have been possible without your steadfast championship, advocacy and partnership. It is daunting to think about facing the challenges ahead, particularly the threats to Medicaid, without you at the helm, but we have been emboldened to reimagine what is possible because of your leadership,” says Witness Ai-Jen Poo, President of the National Domestic Workers Alliance and Executive Director of Caring Across Generations.

Witness Neil McDevitt, Mayor of North Wales, Pennsylvania, noted: “Senator Casey, you have been a steadfast ally of North Wales Borough, the Commonwealth of Pennsylvania, and millions of disabled and Deaf Americans. We owe you a debt that can never be repaid.”

“Things are actually changing. We are not yet where we need to be when it comes to disability access and acceptance, but we are getting there. It brings me great joy when I hear of disabled people in my community getting good paying jobs and not being relegated to sheltered workshops for less than minimum wage,” adds Erin Willman, CEO of White Cane Coffee in Warren, Pennsylvania. 

Witness Lydia Brown, Director of Policy, National Disability Institute, told the attending Senators:“Ten years ago, Sen. Casey’s leadership in introducing and passing The ABLE Act changed the game. People whose disabilities began before age 26 can now access a savings vehicle that can conserve up to $100,000 total without their savings counting against them in determining eligibility for SSI and Medicaid. Money in an ABLE account can be used for a wide range of qualified disability expenses, including otherwise unaffordable assistive technology and health care, as well as educational and employment related costs. For many disabled people on Medicaid, an ABLE account is also their only available means to save for retirement.”

A fond farewell 

“Bob Casey served honorably as the chair of the Senate Special Committee on Aging.  He held a wide range of hearings intended to develop a record that could be used to help shape future legislation,” says Max Richtman, President & CEO, National Committee to Preserve Social Security and Medicare who also is a  former staff director of the Senate Special Committee on Aging. Casey had held numerous hearings on issues facing older adults that helped build support for components of the Older Americans Act reauthorization – which just passed the Senate and may be included in the end-of-year package, noted Richtman. 

“Senator Casey also held hearings on disabled older adults, including one with former Social Security Commissioner Martin O’Malley to discuss what the Social Security Administration (SSA) is doing to make the application process easier,” added Richtman, noting that other hearings were held on scammers preying on the elderly – designed to help older adults and their families know what to look for — and protect against.  

“We can only hope that when Republicans assume control of the Senate in January, this committee will continue the serious work of looking after the interests of seniors, who have contributed so much to our society and yet are among our most vulnerable citizens,” says Richtman.

“Leadership Council of Aging Organizations (LCAO) thanks Senator Bob Casey for his leadership and dedication to improving the lives of older Americans through his work on the Senate Aging Committee,” said Debra Whitman, LCAO Chair. “We look forward to collaborating with incoming Chairman Rick Scott to continue addressing the needs and enhancing the well-being of our nation’s growing aging population,” she says.

“As Chairman of the Senate Special Committee on Aging, Senator Bob Casey was a critical champion for seniors. He fought to strengthen Social Security and Medicare, stop elder abuse, and improve conditions in nursing homes. Casey will be greatly missed in the Senate by everyone who cares about senior issues. We urge the next chairman of this invaluable committee to continue his legacy.” Says Nancy Altman, President of Social Security Works.

“It is wonderful to have a Senate Aging Committee and Senator Casey’s terrific advocacy but inexcusable for the House not to restore its counterpart, which Chairman Claude Pepper proved is indispensable,” said Robert Weiner, former Chief of Staff of the House Select Committee on Aging and later a senior White House spokesman.

Announcing job transitions and retirement – in Rhode Island

Two well-known aging advocates have announced their departures.

The Alliance for Better Long-Term Care announces the retirement of Kathleen “Kathy” Heren. She dedicated 26 years to serving Rhode Island’s seniors.  For the past 15 years, Heren has served as the Rhode Island State Long Term Care Ombudsman, tirelessly advocating for the rights and well-being of residents in long-term care facilities across the state. She is known for her “fierce dedication, wisdom, and compassion have made her an unwavering champion for those in need.”

After serving as Executive Director of LeadingAgeRI for over 16 years, James P. Nyberg is leaving the nonprofit to become Senior Advisor at the Boston-based Public Consulting Group.   He will provide his expertise to the company on home and community-based services.

During his tenure, he significantly advanced aging services by advocating for quality, affordable care and fostering partnerships with state and national stakeholders. His leadership has driven innovative initiatives addressing the needs of older Rhode Islanders while supporting workforce development and professional growth among member organizations.

Nyberg ably served as Chair of the state’s Advisory Commission on Aging for over six years.

Bipartisan efforts strengthens the Dementia public health infrastructure

Published in RINewsToday on December 2, 2024

In the waning days of the Biden administration, Congress has moved one step closer to assisting states to continue to effectively implement dementia interventions.  Following passage of H. R. 7218 on Sept. 17th, by voice vote on Nov. 21st, the U.S. Senate passed S. 3775, also without objection. At press time, the bipartisan legislation now heads to President Biden’s desk to be signed into law.

Once signed, the new law re-authorizes the Building Our Largest Dementia (BOLD) Infrastructure for Alzheimer’s Act (P.L.115-406) enacted in 2018, empowering public health departments across the country to implement effective dementia interventions in their communities.

In a March 2024 fact sheet, the Alzheimer’s Impact Movement (AIM) calls for Alzheimer’s and other dementias to be considered an urgent public health issue, noting that nearly 7 million seniors across the nation are currently living with Alzheimer’s.

While partisan bickering has reduced the number of bills passed during the 118th Congress, Democratic and Republican lawmakers seek solutions for containing the skyrocketing costs of care, finding a cure for debilitating brain disorders, and supporting caregivers. 

The nation spends more than $360 billion per year, including $231 billion in costs to Medicare and Medicaid. Barring any major breakthroughs to prevent, slow down, or cure Alzheimer’s, the number of Americans with Alzheimer’s is expected to double by 2060, costing the nation more than $1.1 trillion per year, says AIM’s Fact Sheet.

Congress continues funding of Dementia effective interventions

In the Senate, S. 3775 was spearheaded by Sens. Susan Collins (R-ME) Catherine Cortez Masto (D-NV), Tim Kaine (D-VA), and Shelley Moore Capito (R-WV), and cosponsored by Sens. Jack Reed and Sheldon Whitehouse.  It’s companion measure, H.R. 7218, was introduced in the House by Reps. Brett Guthrie (R-KY), Chairman of the Health Subcommittee of the House Energy & Commerce Committee, along with Chris Smith (R-NJ), Paul Tonko (D-NY), and Maxine Waters (D-CA).

With its enactment in 2018, P.L. 115-406 accelerated a multi-pronged public health approach to reduce risk, detect early symptoms, advance care, improve data, and ultimately change the trajectory of this devastating disease.

Headed by the Centers for Disease and Prevention (CDC), the reauthorization would authorize $33 million per year, in line with current appropriations, over the next five years to support:

1.  Alzheimer’s Disease and Related Dementias Public Health Centers of Excellence dedicated to promoting effective Alzheimer’s disease and caregiving interventions, as well as educating the public on Alzheimer’s disease, cognitive decline, and brain health. 

2.  Public Health Cooperative Agreements with the CDC that are awarded to State Health Departments to help them meet local needs in promoting brain health, reducing risk of cognitive decline, improving care for those with Alzheimer’s, and other key public health activities. 

3.  Data Grants to improve the analysis and timely reporting of data on Alzheimer’s, cognitive decline, caregiving, and health disparities at the state and national levels.

Since the original Bold Infrastructure for Alzheimer’s Act passed, the CDC has made 66 awards to 45 state, local and tribal public health departments to help them implement effective dementia interventions such as reducing risk, increasing early detection and diagnosis, and supporting the needs of caregivers.

“Alzheimer’s disease is one of the greatest and most under-recognized public health threats of our time. Nearly seven million Americans—including 29,600 Mainers—are living with the disease, and that number is soaring as our overall population grows older and lives longer,” said Maine Sen. Collins, a founder and Senate co-chair of the Congressional Task Force on Alzheimer’s Disease in a statement announcing the passage of the legislation.  

“The passage of this bipartisan legislation is a tremendous victory for families and communities nationwide. By reauthorizing the BOLD Infrastructure for Alzheimer’s Act, we are reaffirming our commitments to providing the tools needed to fight this devastating disease, and to not let Alzheimer’s be one of the defining diseases of our children’s generation as it has ours,” says Collins.

“Since the original BOLD Infrastructure for Alzheimer’s Act passed, public health departments have been able to improve brain health across the life course in their communities,” said Robert Egge, Alzheimer’s Association chief public policy officer and AIM president. “The BOLD Reauthorization Act will help public health departments implement effective strategies that promote brain health, address dementia, and support individuals living with dementia and their caregivers,” said Egge. “We urge the President to support the Alzheimer’s community and swiftly sign this bipartisan bill into law,” he says.

Rhode Island response

“Getting this bill across the finish line is a win for the 25,000 Rhode Islanders living with Alzheimer’s, their adult children who work tirelessly as unpaid family caregivers, and for the health and economic needs of the next generation too.  We must continue the progress we’ve made against Alzheimer’s.  We’ve got to find better treatments for Alzheimer’s and related dementias. The federal government must do its part to reduce risk, detect early symptoms, and advance care while lifting the burden on unpaid caregivers,” said RI Sen. Reed.

Since the original BOLD Infrastructure for Alzheimer’s Act passed in 2018, Reed noted that the Rhode Island Department of Health (RIDOH) has been awarded $3.8 million in BOLD Infrastructure for Alzheimer’s Act grants from the CDC. RIDOH has used the federal BOLD grant funds to help to implement effective Alzheimer’s interventions, including boosting early detection and diagnosis, reducing risk, and preventing avoidable hospitalizations, he says.

Victoria O’Connor, program manager at the RIDOH’s Alzheimer’s Disease and Related Disorders (ADRD), who chairs the state’s Advisory Council on ADRD, agrees with Sen. Reed’s assessment about the positive impact of this federal grant on state-wide public health interventions for those caring for persons with dementia.

“The RIDOH Alzheimer’s Disease and Related Disorders Program leads a statewide Advisory Council, convening critical partners, subject matter experts, and people with lived experience to advise implementation of the BOLD funded workplan as well as oversee the Rhode Island State Plan on Alzheimer’s Disease and Related Disorders 2024-2029. This collaborative approach has led to successful implementation of public health interventions statewide that aim to empower all individuals impacted by dementia to achieve their best quality of life.” says O’Connor.

Other congressional actions to combat Alzheimer’s  

Earlier this year, Sen. Reed helped pass the National Alzheimer’s Project Act (NAPA) Reauthorization Act and the Alzheimer’s Accountability and Investment Act (AAIA).  Sen. Whitehouse was also a cosponsor of the National Alzheimer’s Project Act (NAPA) Reauthorization Act.  Both bills were signed into law by President Biden. 

The NAPA Reauthorization Act (P.L.,118-93) reauthorizes NAPA through 2035, considered a roadmap to coordinate federal efforts in responding to Alzheimer’s and other forms of dementia.  Since NAPA was first passed in 2011, Alzheimer’s research funding has increased seven-fold.  Today, funding for research into Alzheimer’s and other dementias totals over $3.8 billion.

The Alzheimer’s Accountability and Investment Act (P.L. 118-93) would require the Director of the National Institutes of Health (NIH) to submit an annual budget to Congress estimating the funding necessary to fully implement NAPA’s research goals.  This will help ensure Congress can make a well-informed decision to determine necessary Alzheimer’s research funding levels.

We have made tremendous progress in recent years to boost funding for Alzheimer’s research, which holds great promise to end this disease that has had a devastating effect on millions of Americans and their families,” said Sen. Collins, who authored NAPA and AAIA.

“These two bills will maintain our momentum and make sure that we do not take our foot off the pedal just as our investments in basic research are beginning to translate into potential new treatments. We must not let Alzheimer’s to be one of the defining diseases of our children’s generation as it has ours,” she says.

And as a member of the Appropriations subcommittee that oversees funding for the National Institutes of Health (NIH), Sen. Reed helped provide a $275 million increase for Alzheimer’s disease research in the fiscal year 2025 Senate Labor, Health and Human Services, Education, and related Agencies Appropriations bill.  In 2019, NIH awarded Brown University researchers, along with Boston-based Hebrew SeniorLife (HSL), over $53 million in federal research funds  to lead a nationwide effort to improve health care and quality of life for people living with Alzheimer’s disease and related dementias, as well as their caregivers.