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.

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.  

Strengthening the Safety Net for Seniors Living in Poverty

Published in RINewsToday on July 15, 2023

A recently released U.S. Census Bureau report should send a message to Congress and spur the efforts of aging advocates to protect older Americans from financial hardship and poverty.  Some consider the “golden years” to be age 60, or 65, and over.  But it’s not so golden for millions of retirees.

According to a recently released U.S. Census Bureau’s report, “Profile of Older Adults by Poverty Status: 2021,” 8.3% of the nation’s population age 65 and over are living in poverty.    

The Census Report, released on June 25, 2024, uses data from the Survey of Income and Program Participation (SIPP), to draw a profile of the 4.7 million older adults who lived in poverty in 2021. This longitudinal survey provides comprehensive information on the dynamics of income, employment, household composition and government program participation.

Poverty in your later years

Here are a few data nuggets from the latest Census Report’s findings…

According to the report, two-thirds of older adults living in poverty in 2021 were women. Limited time in the workforce, raising children or serving as a caregiver, have decreased Social Security benefits, leading to income insecurity in their later years. Older adults living below the poverty line were more likely than those “non-poor” to have never married, says the report, noting that this limits the chance of these individuals to accumulate financial resources with a spouse or to obtain financial incentives (such as tax benefits) associated with being married.

And yes, living alone can be hazardous to your pocketbook, notes the Census report. In 2021, most older adults in poverty (62.9%) lived alone, compared to only 26.3% of those not in poverty.

In addition, among older adults in poverty who lived with at least one other person, 65.5% lived with a spouse, 29.9% lived with a child and 11.2 percent lived with a grandchild, noted the report’s findings.

A snapshot of poverty in Rhode Island

According to Maureen Maigret, Policy Advisor for the Senior Agenda Coalition of Rhode Island,” the Census Bureau released a “significant and must-read report.”  

“The data shows that almost five million older adults across the nation are living in poverty, and details how gender and social characteristics contribute to poverty status and wealth,” says Maigret. “Two-thirds of the nation’s older adults living in poverty are women, which is like the poverty profile of older adults in Rhode Island, as are the higher rates of poverty for older persons of color.

Maigret noted that a comprehensive 2014 report on RI Older Women she researched for The Women’s Fund of RI documented the high poverty rate of older women in the state – 9.7% for men and 11.3% for women. The Women’s Fund report also found about 20% of older RI adults living in poverty were more likely to be Hispanic or non-Hispanic Black. 

“Unfortunately, things have not improved,” she says, noting that the poverty rate for older Rhode Islanders has increased to 12.3% (US Census ACS 2022 estimates) which is higher than the 10.9% national poverty rate for older adults.

“Providing data on the poverty status of older adults is important for our state policymakers. It is also critical for them to understand the notable gender differences as women outnumber men in the state’s older population (56% vs 44%), have greater healthcare expenses, are more likely to live alone and need long term supports,” states the former Director of the state’s Department of Elderly Affairs (DEA), now referred to as the Office of Healthy Aging.  Older RI women also have lower Social Security benefits than men (about $5,000 less) and 37% less pension benefits, she says.

Maigret notes that most older Rhode Islanders are not wealthy with  many falling into what is termed the “forgotten middle.” A specifically, term used to describe those individuals with income not low-income enough to be on Medicaid but not enough to meet basic needs–estimated at $30,000/year for a single renter in good health (Elder Index). 

Twenty-seven percent of our older households have income below $25,000 (US Census) which is not sufficient to meet basic needs. This is why we must both improve some of the programs that can help them financially and better inform them of available benefits, she says. 

Tackling poverty in the Ocean State

According to Susan Sweet, founder of the Rhode Island Minority Elder Task Force (RIMETF) (riminorityeldertaskforce@gmail.com), a 501 © (3) nonprofit, established in 1992 after a survey found that elders from minority groups were not being serviced by aging network providers, “The survey revealed that Senior Centers, Adult Day Centers, and other state and local programs had almost no staff who were able to communicate with clients who had limited or no English language skills, and paid no attention to cultural differences in different populations,” she noted.

“While there has definitely been some improvement, most older Rhode Islanders of different cultures and/or languages must seek assistance from the few programs that are specifically directed to them,” says Sweet, a former state associate director of DEA, and advocate for seniors facing hardships and low-income difficulties.

“But they are not the majority of those who barely survive because of a lack of funds and support. Coming from all backgrounds, many poor elders are struggling to meet basic needs such as shelter, food, medicine, medical care, utilities and other necessities”, says Sweet.

“Older adult needs appear to be much worse than they were in the early 2000s. Inflation, Covid, lack of adequate housing options, as well as difficulty in accessing existing assistance programs are pushing these individuals to an existence that threatens their health and their life,” warns Sweet.

State programs that exist for the purpose of helping poor, older adults often have long application periods and stringent rules that create very little ability to respond to emergency situations,” according to Sweet.

Sweet says that RIMETF’s most extensive work is in direct assistance to poor elders for basic needs. “We provide mini-grants , generally in the range of $200 – $400, to low-income elders in dire circumstances by paying directly to providers of goods and services such as rental entities, utilities, fuel companies and gift cards for items such as food, clothing, medicine, and household goods. “Our members also assist to get people on payment plans, programs, services, and better situations that may prevent future emergencies and enable longer-term solutions,” she says.

RIMETF has no paid staff and its Board membership consists of a diverse group of health and social work representatives, program administrators, community members, Senior Center and Community Action staff members, housing specialists, and advocates from other aging programs. The older adults who need help are identified by the group’s membership and demographic information and records are kept by the organization.

The nonprofit group is funded by private foundations such as Nursing Placement Foundation, Rhode Island Foundation, Tufts, Harriet Boucher Foundation, Dexter Fund as well as municipalities including the Cities of Providence, East Providence and Pawtucket.

Both Maigret and Sweet call for more to be done by the Rhode Island lawmakers next session to strengthen the safety net for struggling older Rhode Islander’s to protect them from poverty.

“Yes, absolutely more work needs to be done,” says Maigret. ”Data from the national profile and corresponding state data provide strong evidence of the need to continue advocacy to fight for policies to ensure Rhode Islanders enjoy economic security in their older years.” 

“Policies are a necessary part of the work, but oversight and quality control of state and private programs and services is vital to ensure that actual help is available in a timely manner; currently, oversight is lacking,” says Sweet, calling for state programs and policies to be better monitored and evaluated by those who deal with poor older adults and know the hardships suffered by them.  

“The reality of increasing poverty among elders requires a grass roots understanding of the lack of support actually available to meet their needs,” says Sweet.

To get a copy of the Census Bureau’s report,  “Profile of Older Adults by Poverty Status: 2021,” go to https://www2.census.gov/library/publications/2024/demo/p70-193.pdf

To read “Older Women in Rhode Island: A Portrait, Woman’s Fund Rhode Island 2014,” go to https://wfri.org/assets/older-woman-rhode-island.pdf