Tag Archives for Alzheimer’s Association

National report says Alzheimer’s Disease expected to skyrocket

Published in RINewsToday on May 5, 2025

The 2025 Alzheimer’s Disease Facts and Figures report, released last week by the Chicago-based Alzheimer’s Association, highlights a dramatic rise in the number of Americans affected by the disease—signaling an urgent call to action for policymakers.

According to the report, the total annual costs of caring for people living with Alzheimer’s and other dementias (excluding unpaid care) is projected to be $384 billion in 2025.  The projected costs are expected to increase to $1 trillion (in today’s dollars) by mid-century.  Additionally, nearly 12 million family members and friends provide 19.2 billion hours of unpaid care, valued at an additional $413 billion. And deaths due to Alzheimer’s disease more than doubled between 2000 and 2022.

Taking a Comprehensive Look at Alzheimer’s

Published annually in Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association, the report has, since 2007, served as the leading source of comprehensive national data on Alzheimer’s disease and related dementias. It offers critical insights into the impact, prevalence, and challenges of Alzheimer’s, shaping national conversations and guiding policy and research efforts.

The new survey findings are included in an accompanying special report, American Perspectives on Early Detection of Alzheimer’s Disease in the Era of Treatment. The nationwide survey of more than 1,700 Americans aged 45 and older examined awareness and attitudes about Alzheimer’s disease, early detection and diagnosis, tests used to help diagnose Alzheimer’s, and treatments that can slow progression of the disease.

Their survey finds that people want to know if they have Alzheimer’s, and they want to know before it impacts their daily life. They want a simple test so they can access care earlier, including treatments that can slow the progression of the disease,” said Elizabeth Edgerly, Ph.D., senior director, Community Programs and Services, Alzheimer’s Association in a statement announcing the release of the report. “Their interest in early diagnosis and treatment highlights how important it is that we keep advancing toward diagnostic testing that is simple to administer and widely available. We also heard loud and clear that Americans want disease-modifying treatments that can make a real difference after an Alzheimer’s diagnosis,” she says.

If diagnosed with Alzheimer’s disease, 83% would be willing to participate in a clinical trial for treatment to help slow or cure the disease, note the findings. And 48% cited the ability to participate in clinical trials as a reason for wanting Alzheimer’s testing.

The study findings suggest that Americans are optimistic about new treatments to slow or prevent Alzheimer’s disease.  Eighty-one percent believe that new treatments to stop the progression of Alzheimer’s will emerge in the next decade. And 66% believe that new treatments to prevent the disease will be available soon.

Meanwhile, this year’s findings suggest that Americans are concerned about Alzheimer’s testing and how it could affect future care. Forty-four percent 44% worry that insurance will not cover future care and treatment following testing and 41% stay they are concerned about test accuracy.  Other concerns expressed by the respondents include the cost of testing, and losing confidence in abilities or not being allowed to do certain activities (such as driving).

There Are Not Enough Dementia Care Specialists

In the coming years, the 2025 Facts and Figures report warns policy makers of a shortage of dementia care specialists (including neurologists, geriatricians and geriatric psychiatrists) and direct care workers.  Fifty-five percent of primary care physicians caring for people living with Alzheimer’s report that there are not enough dementia care specialists in their communities.

Researchers estimate that 34% to 59% of those aged 65 years and older reside in areas with potential dementia specialist shortfalls. The report estimates that more than 18,000 geriatricians will be needed to care for the approximately 12.7 million individuals aged 65 and older projected to have Alzheimer’s dementia in 2050 — more than double the number of geriatricians who were practicing in 2021.

While it is reported that between 2014 and 2023, the number of direct care workers increased from 3.5 million to 5 million due to growing demand for long-term care, researchers estimate that over 861,000 additional direct care workers will be needed by 2032 — more new workers than in any other single occupation in the United States.

Between 2022 and 2032, the report warns that double-digit percentage increases in the number of needed home health and personal care aides will be needed in every state except Maine to meet the increasing demand. Despite recent increases, projections fall short of true workforce demand.

But they remain optimistic that the next decade will bring new Alzheimer’s treatments to slow, prevent and even cure the devastating disorder.  Four in five Americans (81%) believe new treatments to stop the progression of Alzheimer’s will emerge in the next decade, and 66% believe new treatments to prevent Alzheimer’s will be available soon.

Taking a Close Look at Rhode Island Statistics

According to the 2025 Rhode Island Alzheimer’s Statistics, 22,000 people are living with Alzheimer’s, representing 11.2% of the population aged 65 or older.  There are 37,000 unpaid caregivers providing $52 million in care (valued at $1.4 billion), notes the report’s findings. The statewide deaths from Alzheimer’s disease is 475.  Alzheimer’s Disease as a cause of death ranks 5th.

The Rhode Island Fact Sheet notes that the number of Rhode Islanders in Hospice (2017) with a primary diagnosis is 1,657 or 25 percent.  In 2018, the number of emergency visits per 1,000 people with dementia was 1,606.

And the state’s Medicaid costs of caring for people with Alzheimer’s in 2025 was $ 613 million.  The per capita Medicare spending on people with dementia in 2024 dollars is estimated to be $ 31,741.

Jerry Larkin, MD, Director of the Rhode Island Department of Health commented, “This report shows the need for continued public health efforts to support the growing number of people with Alzheimer’s disease and other dementias in Rhode Island and their caregivers.  The Rhode Island Department of Health is committed to supporting social service agencies to address cognitive decline among their patients and community members; improving diagnosis and treatment of Alzheimer’s within primary care; and providing resources and educational tools, such as the RI Brain Health Guide for families to navigate systems to manage this disease.”

On WJAR’s Health Check 10 website, on April 29, 2025, Barbara Morse got the scoop in announcing the release of the latest Alzheimer’s Facts and Figures Report. For the first time, more than 7.2 million people in the U.S. are living with Alzheimer’s, notes Alzheimer’s expert Dr. Ted Huey, the director of the Memory and Aging Program at Butler Hospital in Providence. “That number is expected to double to nearly 14 million by 2040, with an estimated one million new cases each year by 2060,” he says.

Dr. Huey told Morse, “We have the first new disease modified medications in forever.  Really, the first ones that remove one of the key proteins that causes Alzheimer’s disease.”

Despite advances in treating Alzheimer’s, federal funding for research is being cut, which could hinder progress. “It would be a shame to cut it now because I think we’re really at a good place and we’re making some real advances,” says Huey.

“The survey showing that more Americans want to know if they have Alzheimer’s and that they are interested in taking a medication to slow the disease emphasizes the need for our important work. We need to educate more people about the 10 Signs of Alzheimer’s, when to take their memory concerns to a doctor and our support programs. This is an exciting time for treatment and we want people to know we are here for them,” says Donna McGowan, Executive Director of the Rhode Island chapter of the Alzheimer’s Association. 

“Our survey makes it clear — most Americans want to take action if they experience cognitive problems,” said Alzheimer’s Association Edgerly. “With the rising prevalence of Alzheimer’s, it’s more important than ever that researchers, clinicians, health systems, public health officials and other stakeholders work together to ensure all Americans have access to timely and appropriate Alzheimer’s diagnosis, care and treatment,” she says.

The Alzheimer’s Association is a worldwide voluntary health organization dedicated to Alzheimer’s care, support and research. Its mission is to lead the way to end Alzheimer’s and all other dementia — by accelerating global research, driving risk reduction and early detection, and maximizing quality care and support. For more info, visit alz.org or call 800.272.3900.
29, 2025

To download the 2025 Alzheimer’s Disease Facts and Figures report, go to https://www.alz.org/getmedia/ef8f48f9-ad36-48ea-87f9-b74034635c1e/alzheimers-facts-and-figures.pdf.

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.

Controversial move by CMS limits coverage for new Alzheimer’s drug, Aduhelm 

Published in RINewsToday on April 25, 2022

Earlier this month, amid the pleas of the Alzheimer’s Association, the National Committee to Protect Social Security and Medicare, and other aging advocacy groups, the Centers for Medicare & Medicaid Services (CMS) made its final decision to limit their Medicare coverage of the controversial Alzheimer’s drug, ADUHELM® , for only those Medicare recipients participating in clinical studies overseen by the National Institutes of Health (NIH) or in other approved clinical trials.

When releasing its decision on April 7, CMS noted from the onset, the federal agency “ran a transparent, evidence-based process that incorporated more than 10,000 stakeholder comments and more than 250 peer-reviewed documents into the determination” to make its decision.

Calls for More Rigorous Studies

According to CMS, over 6 million older Americans are believed to have Alzheimer’s, and this prevalence is expected to rise to 14 million by 2060, barring effective interventions. CMS stated that effective treatments are needed, and because of the early, but promising, evidence and the immense burden of this devastating disease on the Medicare population, the agency is finalizing Medicare coverage, calling for rigorous studies approved by the U.S. Federal Drug Administration (FDA) and NIH to help answer whether this class of drugs improves health outcomes for patients.

“Science, evidence, and stakeholder input led our team of career civil servants and clinicians through this national coverage determination process. There is potential for promise with this treatment; however, there is not currently enough evidence of demonstrating improving health outcomes to say that it is reasonable and necessary for people with Medicare, which is key consideration for CMS when making national coverage determination, said Dr. Lee Fleisher, CMS Chief Medical Officer and Director of the Center for Clinical Standards and Quality, in a statement announcing CMS’s regulatory payment decision.

“In arriving at this final decision, we looked at the unique circumstances around this class of treatments and made a decision that weighed the potential for patient benefit against the significance of serious unknown factors that could lead to harm,” added Fleisher. “If a drug in this class shows evidence of clinical benefit through the traditional FDA approval process, then CMS will provide broad access and ensure the results from the rigorous trials are generalizable for people with Medicare participating in a CMS-approved study, such as a registry,” she said, noting that this decision was made to provide CMS flexibility to respond quickly to providing coverage for any new drugs in this class showing a clinical benefit. 

Biogen, a biotechnology company that manufacturers ADUHELM®m , was quick to give its opinion about CMS’s final decision about coverage of this drug. The Cambridge, Massachusetts based company charged that “this unprecedented decision effectively denies all Medicare beneficiaries access to ADUHELM®m , the first and only FDA approved therapy in a new class of Alzheimer’s drugs. It may also limit coverage for any future approved treatment in the class. These coverage restrictions, including the distinction between accelerated approval and traditional approval, have never been applied to FDA-approved medicines for other disease areas.”

When additional data from this new class of treatments become available, Biogen urged CMS to reconsider its final decision for all FDA-approved amyloid-beta targeting therapies. The company says that it is carefully considering its options and will provide updates as the company further evaluates the business impact of this decision.

Creating Unnecessary Barriers to Care 

Calling the CMS decision wrong, the Chicago-based Alzheimer’s Association expressed deep disappointment, charging that it has essentially ignored the needs of people living with Alzheimer’s disease. “CMS has created unnecessary barriers for individuals with Alzheimer’s disease. Patients with Alzheimer’s, a fatal disease, should have FDA approved treatments covered by Medicare just as those facing other diseases do,” said Harry Johns, Alzheimer’s Association chief executive officer. 

Notably, CMS has said in its decision the only way for patients to access the first approved FDA treatment targeting amyloid in those living with Alzheimer’s is to enroll in a clinical trial. While we note CMS has expanded where those clinical trials may take place, in reality this remains an unnecessary and never before imposed barrier to access an FDA-approved treatment, says Johns.

“People living with MCI, Alzheimer’s disease and other dementia deserve the same access to therapies given to those living with other conditions like cancer, heart disease and HIV/AIDS. They deserve the opportunity to assess if an FDA-approved treatment is right for them,” said Joanne Pike, Dr.P.H., Alzheimer’s Association president. “Drugs that treat people in the early stages of Alzheimer’s could mean more time for individuals to actively participate in daily life, have sustained independence and hold on to memories longer,” she said.

According to the Alzheimer’s Association, CMS has incorporated one of its recommendations into the final rule. “Importantly, CMS has decided to utilize a registry for future treatments granted full FDA approval. The Alzheimer’s Association registry will play an important role in collecting and analyzing real-world data. This registry will monitor and report clinical and safety endpoints for patients treated with FDA-approved AD therapies, including accompanying diagnostics, to track the long-term outcomes associated with these therapies in real-world settings. Similar successful registries in heart disease and cancer have enabled researchers, clinicians, health systems and payers to track the long-term performance of therapies using a large, real-world evidence dataset,” the advocacy group says. 

The Alzheimer’s Association also expressed strong concern about the immediate impact CMS’s decision will have on Alzheimer’s and dementia research and innovation. “The agency’s decision to essentially reject the Accelerated Approval Pathway for monoclonal antibodies targeting amyloid for the treatment of Alzheimer’s disease is broad overreach. Accelerated approval is a pathway created by Congress and utilized by FDA to allow for earlier approval of drugs that treat serious conditions, and that fill an unmet medical need. Alzheimer’s is a deadly disease with no survivors,” stated the advocacy group.

“The decision by CMS is a step backward for families facing Alzheimer’s disease,” said Maria C. Carrillo, Ph.D., Alzheimer’s Association chief science officer. “Years of increased research funding has led to more progress and innovation than ever before, but today’s decision may halt this progress as developers question if there is a pathway forward to coverage,” she said.

Calls for Reducing Cost of Medicare Part B Premiums

Max Richtman, President and CEO of the National Committee to Preserve Social Security and Medicare, calls on CMS to “swiftly reduce the hefty 2022 Medicare Part B premium increase ($21.60 per month), now that the agency has made its final decision to limit coverage of the controversial Alzheimer’s drug, ADUHELM®m, to patients in clinical trials.” 

“The spike in Medicare Part B premiums was partly based on the drug’s exorbitant cost (originally priced at $56,000 per year) and the potential expense of wider coverage,” says Richtman, noting that the agency is still “reviewing” Part B premiums, under previous direction from HHS Secretary Xavier Becerra. “Medicare beneficiaries struggling to pay their bills need relief from this year’s premium increase as soon as possible, warns Richtman. .

“The Aduhelm controversy highlights the urgent need for Medicare to be able to negotiate drug prices with Big Pharma. If the price of Aduhelm had been negotiated, it is unlikely that it would have impacted Medicare premiums so dramatically in the first place,”  adds Richtman, 

For a fact sheet on Medicare coverage policy for monoclonal antibodies directed against amyloid for the treatment of Alzheimer’s disease, visit https://www.cms.gov/newsroom/fact-sheets/medicare-coverage-policy-monoclonal-antibodies-directed-against-amyloid-treatment-alzheimers-disease.

To read the final NCD CED decision memorandum, visit https://www.cms.gov/medicare-coverage-database/view/ncacal-decision-memo.aspx?proposed=N&ncaid=305.