September 2026 News

LEAD Coalition submits letter to CMS on AD/ADRD intensive lifestyle interventions

On September 14, the LEAD Coalition—along with 374 signatories—submitted a letter to the Centers for Medicare & Medicaid Services (CMS) in response to its proposed rule on policy changes for Medicare payments under the Physician Fee Schedule (PFS) and other Medicare Part B issues (CMS-1848-P). The letter specifically responds to a request for information, embedded within the PFS, on intensive lifestyle interventions (ILI) to slow progression of AD/ADRD.

The LEAD Coalition letter outlines evidence and recommendations to assist in the development of a new CMS-supported ILI program to reduce AD/ADRD risk and protect brain health. The letter also encourages CMS to develop a program that can adapt to the emerging evidence, including what new research may reveal regarding differences across various forms of AD/ADRD and which interventions are most effective for different populations. The LEAD Coalition believes this letter represents an important first step toward initiating serious dialogue between CMS and the broader community about this potential Medicare benefit.

President signs CR in law, extending government funding and delaying OMB rule implementation through December 11

On September 2, President Trump signed into law the short-term funding measure, or continuing resolution (CR), previously passed by the House and Senate. This CR keeps the federal government open from October 1 through December 11, 2026 at FY 2026 funding levels and delays implementation of the Office of Management and Budget (OMB)’s proposed revisions to the Uniform Guidance (OMB-2026-0034) through the CR’s duration. The OMB’s proposed rule would significantly undermine federal investments and expand the federal government’s authority to impose new award conditions, terminate funding, and enforce compliance with broad administration policy priorities. For more details about the impact of the OMB rule, particularly on the Alzheimer’s disease and related disorders community, please see the LEAD Coalition’s letter to OMB.

House Ways and Means Committee favorably reports the ASAP Act, incorporating CHANGE Act provisions, to full House 

On September 16, the House Ways and Means Committee unanimously advanced the Alzheimer’s Screening and Prevention Act (ASAP Act; H.R. 6130) to the full House for further consideration.

During the markup, the committee adopted an amendment in the nature of a substitute (ANS) which significantly expands the legislation beyond its original focus by:  

• Incorporating the substance of the CHANGE Act (H.R. 3501), adding requirements for physicians to use validated instruments to detect cognitive impairment during Medicare Annual Wellness Visits and Welcome to Medicare Visits. 
• Introducing new age restrictions for Medicare coverage of blood-based screening tests. Under the revised language, coverage would be limited to individuals at “elevated risk” for Alzheimer’s disease or a related dementia (whereby “elevated risk” is not defined), and exclude individuals under age 50 as well as individuals who received a screening test in the previous 59 months. It also establishes a phased age threshold beginning at age 65 in 2028, with the threshold increasing by one year in each subsequent year. The bill includes an exception to these limitations if a screening test receives an A or B recommendation from the U.S. Preventive Services Task Force.

H.R. 6130 moves to the next stage in the legislative process in its revised form, though the timeline for consideration by the full House remains uncertain. Ultimately, the Senate will have an opportunity to weigh in on this legislation; the Senate process could provide an opportunity to negotiate the new restrictions, making continued advocacy especially important.

NIH releases annual AD/ADRD Professional Judgment Budget and Scientific Progress Report

On September 25, the National Institutes of Health (NIH) released the FY2028 AD/ADRD Professional Judgment Budget (webpage and PDF) and its companion document, the 2026 AD/ADRD Scientific Progress Report (webpage and PDF). These two documents, released on an annual basis, provide the broader research community with a prospective look into, and retrospective review of, NIH AD/ADRD research. (Read the blog, co-authored by NIH director Dr. Jay Bhattacharya, NIA director Dr. Richard Hodes, and NINDS Acting Director Dr. Amy Bany Adams.)

The Professional Judgment Budget, mandated by Congress through the Alzheimer’s Accountability and Investment Act, serves as a professional estimate of the additional funds needed to continue to advance AD/ADRD research. This estimate is developed solely by scientific experts at NIH, and sent directly to Congress without change by the U.S. Department of Health and Human Services (HHS) nor the White House Office of Management and Budget (OMB). For FY2028, NIH estimates $209.4 million in additional funds are needed to advance scientific research, bringing the total required resources to ~$4.192 billion. Along with the budget estimate, NIH details research opportunities that could be pursued with the additional funding. Examples include opportunities to leverage robust and expansive population datasets to identify key AD/ADRD risk and protective factors, deepen understanding of  disease mechanisms, develop and validate biomarkers including digital health technologies, develop tools to accelerate drug discovery and precision medicine interventions, develop a core set of common data elements for care and caregiving trials, and more. The report identifies several research opportunities to explore how sex influences mechanisms of risk, resilience, disease heterogeneity, and treatment response (denoted with a specific icon) and also describes cross-cutting research opportunities centered on integrated approaches to dementia research and to in-home evaluation.

The complementary AD/ADRD Scientific Progress Report features a summary of promising science advances from the past year. These include progress in drug development and repurposing, behavioral and lifestyle interventions, diagnosis, dementia risk and protective factors, underlying biological pathways, care and caregiving research, and career training.

Together, these reports demonstrate the importance of predictable and growing federal investment in AD/ADRD research – they document the tremendous progress made possible by years of congressionally appropriated  funding increases and offer examples of vital additional research advancements that necessitate continued investments. All previous reports can be found on the NIA website.

USP approves new “Disease Modifying Therapies” class for Medicare Model Guidelines following advocacy from LEAD Coalition and other organizations

United States Pharmacopeia (USP) has approved changes to the Medicare Model Guidelines (MMG) to establish a new “Disease Modifying Therapies” class within the “Antidementia Agents” category. The change follows a June 2026 comment letter submitted by the LEAD Coalition, the Alliance for Aging Research, the Partnership to Fight Chronic Disease, and Voices of Alzheimer’s urging USP to distinguish FDA-approved disease-modifying therapies (DMTs) for Alzheimer’s disease from medications approved to treat disease symptoms. In the letter, the group highlighted that, without a distinct DMT classification, insurers may treat DMTs like symptomatic treatments; classifying DMTs together with symptomatic treatments could lead to coverage restrictions or delays that could cause patients with Alzheimer’s disease to miss the window for DMT eligibility. 

The MMG are a USP-developed classification system used by the Centers for Medicare & Medicaid Services (CMS) to group Medicare Part D-covered prescription drugs into categories and classes that help guide Part D formulary design. The new class will be incorporated into MMG V.10.0, which is expected to become effective in 2028. Inclusion in the MMG V.10.0 does not itself determine Medicare Part D coverage or guarantee placement of a particular therapy on an individual plan’s formulary.

White House backs away from plan to give political appointees greater control over NIH grants

The Trump administration reportedly has halted plans to release a proposed executive order that would have increased White House control over National Institutes of Health (NIH) research grants. The proposal would have created a panel of political appointees, including NIH Director Jay Bhattacharya and White House Office of Management and Budget (OMB) Director Russ Vought, to oversee final NIH grant-making decisions; a number of the proposed panel members have no scientific training or experience. Typically, final funding decisions are led by the agency, informed by the rigorous NIH peer-review process as well as input from internal NIH staff and external scientific experts who serve on respective NIH Federal Advisory Councils. 

The proposal quickly drew objections from lawmakers responsible for overseeing federal appropriations. Senator Susan Collins, Chair of the Senate Appropriations Committee, wrote a letter to the White House arguing that OMB should not participate in NIH decisions about individual grant awards. She also remarked that Congress recently had blocked implementation of a similar effort by OMB to exercise control over NIH grants (i.e., the OMB Uniform Guidance for Federal Financial Assistance) and this proposed executive order would undermine clear Congressional intent expressed in the FY 2027 continuing resolution. 

While the administration has argued that changes to federal research funding are needed to align spending with its priorities, advocates and congressional appropriators alike have emphasized that the existing merit-based grant processes are designed to make those determinations without inappropriate political interference. Congress—not OMB—holds the constitutional power of the purse, including the authority to determine how federal research dollars are appropriated and the conditions under which agencies may spend them.

The reported decision to abandon the executive order does not necessarily resolve OMB’s push for more power; the White House could still pursue a different approach to NIH grant oversight or revive the proposed executive order after the midterm elections. Advocates and congress members alike should remain vigilant and continue to push back on any efforts that signal White House overreach.

The Pentagon is attempting to unlawfully tap billions in NIH research funds

The Pentagon is seeking access to billions of dollars Congress appropriated for National Institutes of Health (NIH) research, an effort that would redirect money intended for lifesaving medical research to the Department of Defense (DoD). As described in a press release from House Appropriations Committee Ranking Member Rosa DeLauro (D-CT-03), the Trump Administration developed an agreement to grant the DoD access to NIH funds designated by Congress for infectious disease research, including research on influenza, malaria, tuberculosis, HIV, and Ebola. The arrangement was neither disclosed to Congress nor the public, and NIH officials revealed the effort only after lawmakers pressed for answers.

The proposed transfer raises serious concerns about whether the administration is circumventing congressional authority and the Constitutional “power of the purse” by secretly reallocating dollars toward Presidential priorities.The Pentagon already has congressionally-funded programs for developing medical countermeasures against chemical, biological and nuclear threats, making the effort to tap NIH’s infectious-disease research accounts particularly difficult to justify. The administration has neither publicly explained why the Pentagon needs access to these funds nor why they failed to notify Congress of the agreement. 

If the executive branch can move money appropriated for medical research to fund unrelated defense priorities without congressional approval, it would establish a troubling precedent for executive overreach and effectively diminish Congress’s Constitutional role in the appropriations process. This effort underscores an urgent need for stronger guardrails around the transfer of appropriated funds between agencies, particularly as the Pentagon faces mounting costs from President Trump’s war with Iran, to ensure that interagency agreements do not become a backdoor mechanism for repurposing funds. Ultimately, the administration should not be permitted to treat congressional appropriations as a pool of money it can rearrange at will to meet shifting policy priorities or backfill administration-driven cost overruns elsewhere in government. At stake is not simply NIH funding but rather whether Congress can retain meaningful Constitutional control over the federal budget, or whether the executive branch will be allowed to decide for itself how billions in taxpayer dollars are spent in direct defiance of Congress.

White House moves to rescind $810 million approved as part of FY 2026 appropriations law

The White House Office of Management and Budget (OMB) has announced a proposal to withhold and effectively rescind nearly $810 million in funding for federal programs that Congress had appropriated and President Trump signed into law early this year, including $28 million designated for the Agency for Healthcare Research and Quality (AHRQ) and $5 million for the Department of Health and Human Services (HHS) Office of Minority Health, among other HHS programs. The move, announced to Congress late on Friday, September 25, comes at the end of the fiscal year and has raised serious concerns about whether the administration is unlawfully circumventing Congress’s constitutional power of the purse.

Under the Impoundment Control Act of 1974, an administration may withhold appropriated funds temporarily for 45 days while asking Congress to rescind them, but Congress must ultimately authorize the cancellation. Because OMB acted at the very end of the fiscal year, however, the funds will expire before Congress has the opportunity to consider the request. Known as a “pocket rescission,” this tactic effectively allows an administration permanently to prevent funds from being spent without securing congressional approval. The Government Accountability Office has determined that pocket rescissions are illegal because they allow the President to circumvent Congress’s authority over appropriated funds.

The move has drawn bipartisan outrage from congressional appropriators. Senate Appropriations Committee Chairwoman Susan Collins (R-ME) said OMB had intentionally failed to expend these funds for months in order to execute what she has called an unlawful cancellation of appropriations. The issue extends well beyond these programs to a broader issue of executive authority: the administration unilaterally preventing appropriated funds from being spent without Congress’s approval. As congressional appropriators consider how to respond to the rescissions, the dispute over impoundment continues to test the Constitutional limits of the executive branch’s control over federal spending. If unchecked by the courts and Congress, there is deep concern that an emboldened administration will use pocket rescissions on a far wider scale across government and at dramatically higher levels of funding.

FDA approves first gene therapy for pediatric patients with Sanfilippo syndrome type A

The U.S. Food and Drug Administration (FDA) has granted approval to Ultragenyx Pharmaceutical, Inc. for Fayuvi (rebisufligene etisparvovec-hopf), the first treatment for pediatric patients with mucopolysaccharidosis type IIIA (MPS IIIA), also known as Sanfilippo syndrome type A., MPS IIIA is a rare inherited disease that progressively damages the brain and nervous system, causing children to lose cognitive, language and other developmental abilities over time. Previously, treatment was limited to managing symptoms; there was no FDA-approved therapy designed to change the underlying course of the disease. Fayuvi was granted Orphan Drug and Fast Track, and Breakthrough Therapy designations.

Fayuvi is a one-time, intravenous gene therapy that uses a modified, non-infectious virus called an adeno-associated virus serotype 9 (AAV9) to deliver a working copy of the SGSH gene into the patient’s cells. This enables the body’s cells to produce sulfamidase — the enzyme that is missing or deficient in MPS IIIA — allowing heparan sulfate to be properly broken down in lysosomes and reducing its harmful buildup throughout the body and brain. The safety of Fayuvi was evaluated in pediatric patients who received a single intravenous infusion across clinical studies. The most commonly adverse reactions reported in more than 5% of patients were increases in liver enzymes (AST), nausea and vomiting, fever, decreased appetite, decreased white blood cell and platelet counts and increased amylase. Important safety warnings include the risk of thrombotic microangiopathy (TMA). As with other AAV-based gene therapies, there is a potential long-term risk that the inserted genetic material could integrate into the genome and potentially lead to tumor development. Fayuvi is administered in a healthcare setting equipped to manage infusion reactions. All patients receive corticosteroid treatment beginning one day before the infusion and continuing for a minimum of eight weeks afterward. 

FDA launches Expedited IND Pilot, begins accepting applications

The U.S. Food and Drug Administration (FDA) has announced the final design of the Expedited Investigational New Drug (IND) Pilot. The pilot seeks to accelerate the time it takes from identifying a drug to initiating a first-in-human clinical trial by partnering drug companies with qualified research institutions (QRI) that have scientific expertise to support efficient development of IND applications. Currently, first-in-human clinical trials may take up to two years to complete in the United States. The same types of trials are completed much faster in China and Australia. As part of the U.S. Department of Health and Human Services’ Operation TrialBlazer, the FDA has committed to proactively addressing these clinical development challenges through dedicated initiatives such as the Expedited IND Pilot. The FDA’s Expedited IND Pilot webpage provides detailed information on program eligibility criteria, conflict of interest requirements, and the selection criteria the agency will use to determine participation. Drug sponsors and prospective QRIs will apply as a pair with drug sponsors submitting applications to the FDA. The application period will be open until October 30, 2026. Applications will undergo review by FDA scientific experts. FDA expects that 8–10 Sponsor-QRI pairs will be selected to participate in the initial pilot cohort. 

The QRIs selected for the pilot will bring specialized and substantial scientific expertise to the IND application preparation process allowing the FDA to review and accept individual components on a rolling review during the pre-IND phase, rather than waiting for all components to begin review. The pilot will help test whether this allows issues with an IND application to be identified and resolved in real time sooner — thereby reducing the risk of the FDA placing the first-in-human clinical trial protocol on hold (i.e., may not proceed) during the 30-day IND, and making the path from scientific discovery to first-in-human trial faster, more predictable, and more collaborative. Ultimately, the pilot will generate evidence to inform potential future approaches to modernizing FDA’s support for early-stage clinical development. For example, this pilot may inform future policy initiatives which may result in a formal accreditation model that would recognize QRIs demonstrating strong scientific and regulatory judgment, aimed at creating a sustainable, high-quality network of institutions to support drug development and accelerate the time to first-in-human trials for drug sponsors. The pilot also encourages coordination of activities that may occur alongside IND development and review, such as Institutional Review Board review and clinical trial site activation, where appropriate. By supporting earlier planning and more coordinated development activities, the pilot aims to reduce unnecessary delays between the point at which a drug sponsor begins preparing for an IND submission and the start of first-in-human studies.

HHS expands efforts to reduce reliance on animal research

The U.S. Department of Health and Human Services (HHS) has announced a series of agency-wide actions to accelerate use of human-based research methods and reduce reliance on animal testing in biomedical research. The initiative includes investments in technologies such as human organoids, tissue models, artificial intelligence, and computational modeling, as well as regulatory updates and new research infrastructure. Among the actions, the National Institutes of Health (NIH) will invest more than $88 million in research infrastructure projects and launch new programs to support human-based science.

The U.S. Food and Drug Administration has issued a direct final rule that updates its regulations to clarify that non-animal methods can be used where appropriate for testing the safety of drugs and biological products intended for human use before they are tried in humans. The rule replaces terms like “animal tests” and “animal studies” with the terms “nonclinical tests” and “nonclinical studies.” Related terms, including “preclinical” and “in vitro,” are also replaced. The rule defines “nonclinical test” and “nonclinical study” in line with the Food and Drug Omnibus Reform Act of 2022 (FDORA). The law recognizes newer methods that do not use animals and traditional animal studies as possible ways to provide the evidence needed to begin studies in people. The rule removes language that could suggest that animal testing is the only acceptable way to generate safety information for regulatory decisions in products intended for human use. It does not eliminate or prohibit animal studies, change evidentiary standards or impose new costs or requirements on drug developers. To demonstrate their practical application, the FDA also launched a database featuring specific uses of New Approach Methodologies (NAMs). The initial release includes 25 examples drawn from publicly available FDA review materials.

For additional details, see the HHS and NIH press releases detailing this initiative.

U.S. Census Bureau releases new report on global aging

The U.S. Census Bureau has released a report, An Aging World: 2025, that examines the rapid aging of populations worldwide and projects demographic trends through 2060. The report indicates that the global population surpassed 8 billion in 2023, and 77 countries now have populations in which at least 14% of people are older adults. It explains that population aging is being driven by declining mortality rates, allowing more people to reach older ages, and declining fertility, reducing the number of younger people. The report cites Alzheimer’s disease and related disorders among the five leading causes of death for adults age 60 and older globally. 

Beyond demographic statistics, the report explores the broader social and economic implications of aging societies. It examines socioeconomic conditions across countries and highlights emerging areas of research, including age-friendly communities and the use of artificial intelligence in health systems and employment. Overall, the report emphasizes that population aging is a global trend with significant implications for health, economies, communities, and public policy in the coming decades.

ADI published 2026 World Alzheimer Report

Alzheimer’s Disease International (ADI) has published the 2026 World Alzheimer, “A New Era of Dementia Clinical Trials.” Every advance in Alzheimer’s disease and related disorders (AD/ADRD) diagnosis and treatment begins with research. Currently, there are 158 drugs in 192 trials in the pipeline. Those trials require about 55,000 participants, while stringent eligibility and screening requirements mean an estimated 350,000 people may need to volunteer to meet current recruitment needs. The growing number of clinical trials are bringing new opportunities alongside important questions about how to make research more inclusive, accessible, and effective to enable emerging and future innovation for AD/ADRD treatments. The 2026 World Alzheimer Report explores key issues including recruitment participation and retention, the importance of global representation and diversification and their impact on inclusive AD/ADRD research, and the need to increase awareness and understanding of clinical trials among medical practitioners. The report also explores what clinical trials are and how they work, while sharing personal perspectives and experiences from people involved in clinical research.

Additional Reads

• Explainable AI framework for Alzheimer’s disease prediction using multimodal data (read here)
• Prion-like transmission of human tau strains in the mouse brain (read here)
• Your voice may reveal how fast and how well you’re aging (read here)
• Federal watchdog says Trump’s $810M funding cancellation is unconstitutional (read here)
• Genetic analysis reveals potential benefit of aspirin for reducing dementia risk (read here)
• Bristol researchers take major step towards Alzheimer’s gene therapy (read here)
• Blocking immune cells’ path into brain limits neurodegeneration (read here)
• Lonely? Socially isolated? Study finds it may cost you six healthy years of life (read here)
• Could a Gene in Alzheimer’s Research Also Unlock Answers for FTD? (read here)
• ‘Zombified’ C.D.C., Hobbled by Cuts, Struggles to Fulfill Scientific Mission (read here)
• How outdoor music is helping people living with dementia reconnect with the world around them (read here)
• Trump cancels $1B in federal spending in latest challenge to Congress (read here)
• Driving With Dementia: How to Know When It’s Time to Stop (read here)
• How quickly people age during midlife predicted memory lapses 10 years later (read here)
• The brain still responds to favourite music in dementia (read here)
• These 6 charts show how NIH research funding has been reshaped under Trump (read here)
• Verification makes discovery matter (read here)
• Fw: Acadia Pharmaceuticals Announces Phase 3 Enabling Topline Results from Phase 2 RADIANT Study of Remlifanserin for the Treatment of Alzheimer’s Disease Psychosis (ADP) (read here)
• Blood proteins reveal effects of Alzheimer’s drug (read here)
• Chronic stress linked to differences in cognitive decline across certain demographic groups, study finds (read here)
• Positive Phase 2 Topline Results: Remlifanserin for the Treatment of Alzheimer Disease Psychosis (read here)
• Can HRT prevent dementia? What the latest research tells us
  (read here)
• Mount Sinai Researchers Identify How APOE4 Gene Damages Brain Blood Vessels in Alzheimer’s Disease (read here)
• White House plan to increase control of NIH grants appears ‘dead’ (read here)
• People with dementia want to participate in research, according to study (read here)
• Employment Instability and Early Retirement Linked to Cognitive Deficits and Risk of Dementia (read here)
• How Targeting the Brain’s ‘Zombie’ Cells May Treat Alzheimer’s (read here)
• Scientists develop high-resolution molecular maps of Alzheimer’s and related brain disorders (read here)
• Hormone Replacement Therapy: When Is It Good for the Brain? (read here)
• Blood proteomics of menopause map to brain aging and dementia risk (read here)
• Targeted Treatment of Agitation in Alzheimer’s Dementia: Prioritizing Function and Safety Over Sedation and Other Serious Harms (read here)
• Who Should Get a Blood Test for Alzheimer’s Disease? (read here)
• Deep Learning–derived Bone Mineral Density and Longitudinal White Matter Microstructure and Cognitive Decline: Multi-Ethnic Study of Atherosclerosis (read here)
• Older Adults Have Strong Interest in Dementia Vaccine, Survey Finds (read here)
• High rates of cognitive impairment in people experiencing homelessness demand radical policy change (read here)
• PLCγ2 and phospholipase A1 pathways may converge to reduce the risk of Alzheimer’s disease (read here)
• Could green tea extract fight Alzheimer’s disease? (read here)
• Living with Dementia Carer Survey: perspectives from Australian carers supporting someone living with dementia (read here)
• Dementia care can cost a fortune. Families pay in more ways than one. (read here)
• Smart beds and motion sensors – is this the future of dementia care? (read here)
• Clinical pathways for cognitively unimpaired individuals with Alzheimer’s disease neuropathological change (read here)
• Concussions may raise dementia risk. Here’s how to protect yourself. (read here)
• White House Moves to Take Control of N.I.H. Grants (read here)
• Trump asked budget chief to draft order bringing health research funding under his control (read here)
• Challenging Dementia Behaviors: What They Mean and How to Respond (read here)
• GWAS Nets Genes That Alter APOE4 Risk (read here)
• Learning another language may be one of the best ways to keep your brain healthy as you age (read here)
• AI Use in Dementia Care Requires Engagement with Patient and Caregiver Perspectives (read here)
• ‘Clear retribution’: dismay as key Alzheimer’s study cancelled amid Trump attacks on science (read here)
• Hundreds of ageing Americans may not get results of Alzheimer’s study due to Trump cuts (read here)
• Many dementia patients don’t report their diagnosis, study finds (read here)
• Organizations Unite to Defend Texas Dementia Research Initiative (read here)
• Study: One-Third of Older Adults With Cognitive Disorders Taking Prescription Drugs That Could Harm Them (read here)
• New lawsuit argues NIH violated First Amendment rights of grant applicants (read here)
• Terminal lucidity: when dying dementia patients regain awareness (read here)
• New dementia warning sign hiding in our muscles, Curtin study finds (read here)
• Nobody Told Us We Could Still Have a Life After the Diagnosis (read here)
• Nagging Pain? Aβ42 Accumulation Could Be to Blame, Claim Scientists (read here)
• Reading and associations with brain health, cognition, well-being, and mental health (read here)
• Why Your Social Life Matters When You’re Living With MCI or Early Alzheimer’s (read here)
• Dementia Advances in Two Phases, Suggests New Drexel-Led Study  (read here)
• Social Media Claims About Blood Tests for Alzheimer’s Disease and Dementia: A Cross‐Sectional Content Analysis (read here)
• The GOP’s $50 billion rural health fund is coming up short, hospital leaders say (read here)
• Microproteins provide new playbook for Alzheimer’s research (read here)
• Simulating the earliest ripples of Alzheimer’s disease (read here)
• Symptomatic Therapy Meets Disease Modification: Mapping the Alzheimer’s Treatment Continuum (read here)
• APOE-stratified genome-wide association analyses provide insights into the genetic etiology of Alzheimers’s disease (read here)
• What are statins? And can healthy people use them to prevent heart disease and dementia? (read here)
• Alzheimer’s disease testing needs evidence, ethics, and equity (read here)
• Alzheimer’s and dementia doctor touched by disease in own family, recommends early testing (read here)
• An early sign of dementia may be hiding in your voice, new research suggests (read here)
• New UC Berkeley study links deep-sleep loss to Alzheimer’s-related protein buildup (read here)
• The Brain’s Blood Vessels May Hold a Key to Alzheimer’s—and Protection From It (read here)
• Can Alzheimer’s Compromise Bone Marrow Monocytes? (read here)
• New research offers avenue to explore relationship between Alzheimer’s, HIV (read here)
• From autism to Alzheimer’s: Membrane transporters open new avenues for treating brain disorders  (read here)
• Nanoparticles show potential as new treatment for Alzheimer’s (read here)
• UK research, new caregiver resource focus on quality of life in later stages of dementia (read here)
• The Dementia Orchestra (read here)
• Beyond individual-level approaches to dementia prevention: a socioecological reappraisal (read here)
• Blood and Gene Test Combo Forecasts Alzheimer’s Symptoms Years Before Onset (read here)
• Human amniotic mesenchymal stromal cell-derived extracellular vesicles reprogram microglia and prevent neurodegeneration in experimental models of Alzheimer’s disease (read here)
• Why Dementia Caregivers Need Care, Too: A Physician’s Take (read here)
• USC develops algorithmic tool to improve screening of patients for Alzheimer’s clinical trial (read here)
• Brain vascular cells resisted disease-related effects (read here)
• Alterations of gut microbiota in Down syndrome and their association with Alzheimer’s disease (read here)
• Researchers Identify Risk Factors for Dementia Among American Indians (read here)
• Association of vascular health with motor and cognitive function in people with prodromal Alzheimer’s disease (read here)
• New clues suggest how destructive immune cells wreak havoc in the brain (read here)
• How to Know When It’s Time for More Dementia Care (read here)
• Older Americans Have Dementia Without Knowing—Experts Reveal Signs to Watch (read here)
• Empowering Primary Care: Early Alzheimer’s Detection and the Referral Pathway Challenge (read here)
• Scientists Discover Four New Alzheimer’s Risk Genes (read here)
• Inside the brain: Rethinking the mechanisms of Alzheimer’s disease (read here)
• Dementia stole my grandmother from us. I am fighting to give families more time (read here)
• Sharpening Minds in the Community: Attention Emerges as a Key Responsive Outcome in Municipal Dementia Prevention (read here)
• From feasibility to neuroanatomic validity of remote cognitive smartphone assessments in early Alzheimer’s disease (read here)
• Alzheimer’s trial to test drug on people without symptoms to see if it can be prevented (read here)
• The Montreal Cognitive Assessment in Spanish-speaking countries in Latin America and the Caribbean: a systematic review (read here)
• Outcomes reported in interventional studies for mild cognitive impairment: a scoping umbrella review to inform core outcome set development (read here)
• Nearly Half of Dementia Cases May Be Preventable—Here’s What the Research Says So Far (read here)
• Systems-level approaches crucial to translating research into aged care practice (read here)
• The dementia that often strikes in midlife — and the signs people miss (read here)
• A Voice Disorder May be an Early Sign of Dementia, Drexel Study Suggests (read here)
• Key path to Alzheimer’s-like brain damage starts outside the brain (read here)
• European study highlights fragmented dementia care across health and social care systems (read here)
• Decades after 9/11, toxic dust and PTSD may be accelerating brain aging among first responders (read here)
• Exercise Alters Brain Activity During Cognitive Tasks (read here)
• The Brain Disorder That Can Mimic Alzheimer’s and Parkinson’s (read here)
• UT Health San Antonio neuropsychologist finds gaps between treatment and science of ALS, dementia in her own family (read here)
• Blood-based biomarkers of Alzheimer’s disease and neurodegeneration in an indigenous African cohort using both Simoa and NULISA platforms (read here)
• Does a Rogue Receptor Drive Synapse Loss in Early Alzheimer’s Disease? (read here)
• The Trump administration is burying science and health care in paperwork (read here)
• Barrow Study Identifies How Wildfire Smoke May Contribute to Neurodegenerative Diseases (read here)
• Tau’s Surprise Birthplace Offers a Clue to How Alzheimer’s Tangles Begin (read here)
• Neurodegenerative Disease Death Certification Among National Football League Players With Dementia (read here)

August 2026 News

LEAD Coalition submits comments to HHS to help inform the National Plan to Address Alzheimer’s Disease update 

The LEAD Coalition submitted a letter to the U.S. Department of Health and Human Services (HHS) to assist in informing a comprehensive update to the National Plan to Address Alzheimer’s Disease (HHS-ASPE-2026-0298). The National Plan is a broad and ambitious framework to accelerate scientific progress and improve support for individuals living with Alzheimer’s disease and Alzheimer’s disease-related dementias (AD/ADRD) and their families.

In the letter, the LEAD Coalition calls for the updated National Plan to be ambitious, measurable, and adequately resourced, with a focus on ensuring equitable, timely, accurate, compassionate, and actionable prevention, diagnosis, treatment, and care. The letter outlines ways that HHS could work together with the ecosystem to advance research and translate innovations effectively into clinical practice, elevate evidence-based risk reduction strategies, and strengthen infrastructure to deliver effective diagnostics, care, treatments, services, and supports to individuals and care partners in need. The letter also elevates the need for the National Plan update to explicitly recognize and serve the full community affected by AD/ADRD, including people living with Alzheimer’s disease, Lewy body dementia (LBD), frontotemporal degeneration (FTD), and vascular contributions to cognitive impairment and dementia (VCID), as well as individuals with Down syndrome.

FDA approves Lantheus’ TAUKLARIFY to identify tau pathology in individuals being evaluated for Alzheimer’s disease

The U.S. Food and Drug Administration (FDA) has approved Lantheus’ TAUKLARIFY™ (florquinitau F 18 injection, also known as MK-6240), a radiodiagnostic agent used with positron emission tomography (PET) imaging to identify tau neurofibrillary tangle (NFT) pathology in adults with cognitive impairment being evaluated for Alzheimer’s disease (AD). The approval indicates TAUKLARIFY as a tool for visualizing tau pathology, complementing amyloid PET and other diagnostic approaches for AD.

The FDA approval of TAUKLARIFY is supported by two blinded-read studies that analyzed PET images from more than 500 participants across three clinical trials. The studies included cognitively unimpaired individuals, individuals with mild cognitive impairment (MCI), and those with mild dementia due to AD, allowing the imaging agent to be evaluated across different stages of cognitive function. Independent readers, blinded to clinical information and amyloid beta PET results, classified scans as positive or negative for tau NFT pathology.In Study 1, the Positive Percent Agreement (PPA) across readers ranged from 80% to 88%, while the Negative Percent Agreement (NPA) ranged from 98% to 99%. In Study 2, PPA ranged from 68% to 82% and NPA ranged from 93% to 99%. Interreader agreement was high in both studies.

Safety was evaluated in 1,734 participants. The most commonly reported adverse reactions were headache (0.7%), nausea (0.2%), injection-site reactions (0.1%), dizziness (0.1%) and abdominal discomfort (0.1%). TAUKLARIFY is not established for evaluating non-Alzheimer’s disease tauopathies, and Lantheus notes that a negative scan does not necessarily exclude tau pathology, while a positive scan does not necessarily confirm it. For additional information, read the Lantheus press release.

FDA clears C2N Diagnostics’ PrecivityAD2® Alzheimer’s blood test for adults with cognitive symptoms as young as 40

The U.S. Food & Drug Administration (FDA) has cleared C2N Diagnostics’ PrecivityAD2® test, providing patients and health care professionals (HCPs) with an accurate, accessible, and scalable blood test to help diagnose Alzheimer’s disease in conjunction with standard clinical workup. The PrecivityAD2® FDA-cleared test version is expected to be available later this year; the current CLIA-validated, PrecivityAD2® test offering remains available through C2N’s clinical laboratory. 

The FDA-cleared PrecivityAD2® test is indicated for use in adults aged 40 years and older who present with signs or symptoms of cognitive impairment undergoing evaluation for Alzheimer’s disease or other forms of cognitive decline. The test is intended to be used in conjunction with clinical assessment to aid HCPs experienced in the evaluation of cognitive impairment to identify patients with amyloid pathology associated with Alzheimer’s disease. The test is not intended as a screening or stand-alone diagnostic test. 

In a clinical validation study of 1,142 subjects presenting with signs or symptoms of cognitive decline, PrecivityAD2® using dual cutoffs to detect brain amyloid plaques demonstrated a 97.6% positive predictive value (rule-in) for a Positive result and a 93.1% negative predictive value (rule-out) for a Negative result, based on established reference methods of amyloid PET visual read or cerebrospinal fluid (CSF) biomarker testing. A Likely Positive test result occurred in 17.3% of the subjects and had a 77.3% positive predictive value. Every PrecivityAD2® test result category provides medically important information to help HCPs determine appropriate next steps in the clinical care journey. The test was effective at detecting amyloid plaques across the spectrum of cognitive impairment evaluated in the clinical study, including subjects with mild symptoms and those with more advanced cognitive concerns. For additional information, read the C2N Diagnostics press release. 

FDA clears Roche’s Elecsys® pTau217 blood test to aid Alzheimer’s disease assessment in adults 55 and older with symptoms

The U.S. Food and Drug Administration (FDA) has cleared Roche’s Elecsys® Phospho-Tau (217P) Plasma (pTau217) blood test, providing clinicians with a new minimally-invasive blood test to aid in identifying amyloid pathology associated with Alzheimer’s disease (AD). The test is indicated for adults aged 55 years and older who have signs, symptoms, or complaints of cognitive decline and is designed for use across both primary and specialty care settings. Developed in collaboration with Eli Lilly and Company, Elecsys® pTau217 is the first FDA-cleared single-biomarker blood test that supports both rule-in and rule-out assessment of amyloid pathology using the same validated clinical cutoffs across care settings.

Elecsys® pTau217 provides positive, intermediate, and negative result categories to help clinicians assess the likelihood of amyloid pathology and determine appropriate next steps, including whether additional evaluation with PET imaging or cerebrospinal fluid (CSF) testing may be warranted. In clinical evaluation, the assay demonstrated high agreement with amyloid PET imaging. The test is not intended to be used as a stand-alone diagnostic or to predict the development of dementia or other neurological conditions, and results should be interpreted alongside clinical information and other relevant findings. For additional information, read the Roche press release.

NIA releases 2026 Dementia Care and Caregiving Research Summit Report 

The National Institute on Aging (NIA) has released its 2026 Dementia Care and Caregiving Research Summit Report, highlighting key research priorities and opportunities for improving care and support for people living with dementia and their care partners. Convened in March 2026, the Summit brought together researchers, policymakers, providers, community organizations, people living with Alzheimer’s disease and related disorders (AD/ADRD), care partners, and other stakeholders to assess progress and identify remaining gaps in dementia care and caregiving research.

The report underscores the growing complexity and substantial economic and social impacts of AD/ADRD, while emphasizing the need to translate research advances into practical, sustainable, and equitable approaches to care. Key priorities highlighted in the report include:

• Addressing the economic impacts of AD/ADRD, including the financial and workforce effects on family care partners;
• Strengthening community-engaged research and developing culturally-responsive interventions in partnership with people living with AD/ADRD, care partners, and community organizations;
• Developing and testing rigorous AD/ADRD care and caregiving interventions that can be effectively implemented and scaled in real-world settings;
• Expanding and connecting data infrastructure to support more comprehensive research on AD/ADRD, caregiving, outcomes, and disparities; and
• Improving care coordination, early detection, and access to comprehensive, person-centered services that can help people living with AD/ADRD remain at home and maintain quality of life.

The report also emphasizes that advances in diagnosis, treatments, technology, and care models are reshaping the AD/ADRD care landscape. The research community has an opportunity to build strong partnerships across sectors and communities to ensure that new knowledge translates into accessible, sustainable, and person-centered supports for all people living with AD/ADRD and their care partners.

LEAD Coalition expands support for passage of the ASAP Act

On August 24, the LEAD Coalition (Leaders Engaged on Alzheimer’s Disease), the Alzheimer’s Association, and the Alzheimer’s Impact Movement (AIM) – along with 526 signatories – shared an updated letter with Congress in support of the bipartisan Alzheimer’s Screening and Prevention (ASAP) Act (H.R. 6130 / S.3267). This bipartisan legislation aims to ensure timely access to innovative Food and Drug Administration (FDA)-approved or cleared screening tests to detect Alzheimer’s disease and related forms of dementia in their earliest stages. The updated letter includes more than 75 additional signatories, demonstrating building momentum for passage of the ASAP Act before the end of this congressional session.

Under current law, Medicare can cover only preventive services that Congress has specifically authorized or that are recommended by the U.S. Preventive Services Task Force (USPSTF). This process can delay coverage for years after screening tests receive FDA approval. The ASAP Act modernizes that process by authorizing the Secretary of Health and Human Services to provide Medicare coverage for FDA-approved or cleared blood-based biomarker tests for the early detection of Alzheimer’s and other related disorders. For more information about the ASAP Act, read the Alzheimer’s Association press release and the ASAP Act Fact Sheet.

Public health leader Dr. Erica Schwartz confirmed as CDC director

The U.S. Senate has confirmed Dr. Erica Schwartz as the director of the Centers for Disease Control and Prevention (CDC). With a vote of 51-44, Dr. Schwartz becomes the first permanent director of the agency in nearly a year. Dr. Schwartz is a board-certified doctor of preventative medicine, served as deputy surgeon general during the first Trump administration, and spent much of her career in health roles in the U.S. military. She received her medical degree from Brown University in 1998, and completed a Masters of Public Health degree from the Uniformed Services University of the Health Sciences in 2000. She also has a law degree and was admitted to the bar in the District of Columbia.

During her July 15 confirmation hearing, Schwartz faced questions about her ability to lead the CDC while working with HHS Secretary Robert F. Kennedy Jr. She pledged to restore public trust in the CDC but stopped short of committing to informing Congress if directed by the administration to implement policies she viewed as unscientific.

Dr. Heidi Overton announced as nominee for FDA Commissioner 

President Donald Trump has nominated Dr. Heidi Overton, a physician and White House Domestic Policy Council official, to serve as commissioner of the U.S. Food and Drug Administration (FDA). Overton brings medical and policy experience to the position, including a medical degree from the University of New Mexico, surgical training at Johns Hopkins, and previous work at the America First Policy Institute. 

A timeline for Senate confirmation hearings has not yet been announced, but is unlikely to occur before the November elections. The nomination is expected to receive close scrutiny during the confirmation process. Supporters point to Overton’s medical background, policy experience, and alignment with the administration’s goals. Strong critics, including Sen. Bill Cassidy (R-LA), chairman of the Senate HELP Committee, have raised concerns about her limited experience managing large organizations and her role in the administration’s recent changes to childhood vaccine policy. Dr. Overton is viewed as a close ally of Dr. Marty Makary, Trump’s previous FDA commissioner who resigned in May after 13 months in the role following disagreements with White House officials over flavored vapes, abortion-pill safety, and public disputes with drugmakers.

CMS to launch new Risk-Based Survey process for nursing homes

The Centers for Medicare & Medicaid Services (CMS) has announced that it will begin implementing a new Risk-Based Survey (RBS) process nationwide on September 8. The program is based on a pilot program conducted in 22 states and is a modified form of the Long-Term Care Survey Process (LTCSP). The RBS process will be used for recertifications of “higher-performing” nursing homes and will include a streamlined review of all required areas and fewer activities. These surveys are conducted in roughly half the time with fewer total surveyors than the standard LTCSP. State agencies and CMS still may conduct the survey using the traditional long-term care (LTC) survey process in any RBS-qualifying facility, based on concerns related to residents’ health and safety, such as complaint reports. According to CMS, a higher quality facility is indicated by factors such as a history of fewer citations, higher staffing levels, fewer hospitalizations, and other similar indicators of quality. About 12% of all nursing facilities initially will qualify for the new RSB process. For additional details, read the CMS Quality, Safety, and Oversight Memo (Ref: QSO-26-14-NH).

FDA report assesses use of the use of patient experience data in its decision-making

The U.S. Food and Drug Administration (FDA) has posted the 2026 report, “Assessment of the Use of Patient Experience Data in Regulatory Decision-Making.” The report describes findings from focus group interviews with FDA review staff about how patient experience data are considered throughout drug development and regulatory review, including perspectives on the use and evaluation of patient experience data. It also examines reviewer-generated documents and approved product labeling for a cohort of 800 New Drug Application (NDA), Biologics License Application (BLA), and efficacy supplement submissions approved between February 5, 2021, and December 31, 2025, to assess how patient experience data were documented.

The report provides details regarding the methods used to identify, collect, and analyze data for this assessment, results, and areas for continued focus for sponsors and the FDA. The report noted reviewer feedback for sponsors seeking Investigational New Drug (IND) or pre-IND meetings to provide detailed meeting requests so that FDA can properly engage the appropriate review disciplines and subject matter experts and, when submitting a market application, for sponsors to adhere to the eCTD Technical Conformance Guide Technical Specifications document. During the interviews, staff reported a need to clarify roles, responsibilities, and best practices of when to engage specialized expertise across disciplines as areas for potential improvement. The document review noted that efficacy supplements that mentioned patient experience data were less likely to include a brief statement about the patient experience data submitted and reviewed as part of the application.

This is the second in a series of three independent assessments required under Section 3004 of the 21st Century Cures Act, with reports in 2021, 2026, and 2031.

Issue brief explains how ex parte verification can be used to automate Medicaid eligibility processes

The National Association of Medicaid Directors has released a new issue brief explaining how ex parte verification can be used to automate Medicaid eligibility processes. Ex parte verification, or attempting to determine a member’s eligibility for Medicaid without requiring action from the individual, is required under federal law. H.R. 1, also referred to as The One Big Beautiful Bill Act, expands the use of ex parte verification. Under H.R.1 requirements, Congress mandates states to use available data sources to attempt to verify if an individual meets the work and community engagement requirements – or falls under an exemption or exclusion – before requesting information from the individual. This issue brief provides insight into both how ex parte automates eligibility and how federal law envisions ex parte processes will support community engagement implementation.

ADvancing States issues 2026 Aging Summit Report

ADvancing States has released the 2026 Aging Summit Report, a roadmap for preparing our nation to meet the opportunities and challenges of a rapidly aging population. As more people live longer, healthier lives, the aging and disability networks have an opportunity to rethink how they promote health, independence, purpose, and quality of life across the lifespan. At the same time, growing demand for services, workforce shortages, increasing caregiver needs, and systems designed for a different era require bold, collaborative action.

To help chart the path forward, ADvancing States convened more than 220 leaders representing 42 states and territories, federal agencies, national organizations, health plans, academia, philanthropy, and the private sector for the 2026 Aging Summit. Together, participants explored how they can prepare for a longer-lived society and ensure that our systems are equipped to meet the evolving needs of older adults. The report highlights key recommendations across several priority areas, including:

• Advancing prevention, wellness, and healthy aging throughout life;
• Strengthening the direct care workforce and supporting family caregivers;
• Building more integrated, person-centered systems that are easier to navigate;
• Leveraging data, technology, and cross-sector partnerships to improve outcomes and promote independence; and
• Fostering a holistic approach that engages healthcare, housing, transportation, public health, business, and community partners.

The recommendations outlined in this report provide both immediate opportunities for action and a long-term vision for modernizing the systems that support older adults. They reflect a shared commitment to creating systems that are proactive rather than reactive, integrated rather than fragmented, and person-centered rather than program-centered.

Additional Reads

• Priorities of people living with Alzheimer’s and care partners: What Matters Most? (read here)
• A multiancestry polygenic risk score for Alzheimer’s disease is associated with cognitive decline and neuropathological hallmarks in diverse populations (read here)
• Hospitals are plotting a long-shot push to roll back $1 trillion in Medicaid cuts (read here)
• Dementia care navigators help Coloradans get the support they need (read here)
• A Rogue Neuronal Signal Lies at the Root of Alzheimer’s Disease (read here)
• Reduced brain volume may act as a clock for progression to early-onset dementia (read here)
• New Tau PET Imaging Provides Sharper ‘Lens’ To Put Alzheimer’s Tangles in Focus (read here)
• HRT linked to lower dementia risk in large UK study (read here)
• MRI may help predict progression in early-onset Alzheimer’s disease (read here)
• How Trump’s cuts are reshaping America’s health system (read here)
• DNA organization changes in Alzheimer’s disease, aging (read here)
• Sex stratified differences in comorbidity patterns among early- and late-onset dementia patients: original research article (read here)
• ‘Supportive’ brain cells may drive cognitive decline (read here)
• Deep sleep brain waves offer protection against Alzheimer’s disease, new research shows (read here)
• Dementia with Lewy bodies: why are some brain regions more affected than others? (read here)
• At Least 1 in 4 Former NFL Players Who Died in 2016-2021 Had CTE at Death, Study Finds (read here)
• Protect Scientific Peer Review: The Research Community Must Respond to NIH’s Proposal (read here)
• TAND: A New Framework for ALS, FTD and Related Brain Diseases (read here)
• How AI Could Help Doctors Diagnose the Right Dementia (read here)
• Faster path to treatment for deadly childhood dementia (read here)
• Planning for the Heat: Indoor Dementia-Friendly Activities (read here)
• Language skills stay strong in older adults, even while other cognitive abilities decline (read here)
• Complex atypical caregiving: navigating the margins of unique caregiver roles and burdens (read here)
• Integrated digit-in-noise testing for hearing and cognitive screening (read here)
• New tool for early signs of dementia (read here)
• Therapeutic Twofer Supplies Progranulin That Evades Sortilin (read here)
• How to Recognize and Manage Pain in Dementia (read here)
• Interpreting p-tau217 on the ward: frailty and plasma biomarkers in acutely admitted older adults (read here)
• Researchers: Time to shift focus in the fight against Alzheimer’s and related diseases (read here)
• Can you slow the aging process? Study reveals which interventions might help (read here)
• Advancing a systems-level understanding of neurodegeneration: the BrightFocus Alzheimer’s disease research portfolio (read here)
• New CDC Director Acknowledges Agency Problems in First Large Staff Meeting (read here)
• FDA Weighs in on the Development and Use of Digitally Derived Measures for Clinical Investigations (read here)
• Can blood tests detect Alzheimer’s disease in its early stages? (read here)
• The Wild Theory That Alzheimer’s Is a Plumbing Issue (read here)
• When a failed trial isn’t a failed drug (read here)
• Microglial cells from patients with genetic and sporadic frontotemporal dementia differ from each other (read here)
• App-Based Support Improves Dementia Caregivers’ Well-Being (read here)
• First person-centered measure of dementia caregiving styles improves partner, patient outcomes (read here)
• Signs of Alzheimer’s disease are detectable far earlier than previously thought (read here)
• New Trials Signal ‘Historic Moment’ for Progressive Supranuclear Palsy (read here)
• Accrediting body considers changes to racism curriculum standards for public health schools (read here)
• High-dose vitamin D may improve cognition among those at risk of dementia, Emory study finds (read here)
• The CDC has zombie programs. Congress funds them, but few people are left to do the work (read here)
• Trump administration sued over visa time limit that would affect grad students, postdocs (read here)
• What Geriatric Emergency Departments Do Differently (read here)
• Is Early Menopause a Warning Sign for Alzheimer’s? (read here)
• Why you move — not just how often — could affect dementia risk (read here)
• Severe mental illness linked to higher dementia risk at young age (read here)
• Air pollution linked to distinct brain changes in regions vulnerable to Alzheimer’s disease (read here)
• ‘Graveyard for Grants’: NIH Is Holding Up Medical Research Funding (read here)
• Alzheimer’s research is latest casualty in Trump administration war against ‘DEI’ (read here)
• US government is pushing to gain unprecedented access to your medical records – as data protections are weakening
  (read here)
• PLCG2 gene variants may multiply the risk of Alzheimer’s disease (read here)
• APOE and Polygenic Risk Shape Alzheimer Disease Onset in Extra-APP-Copy Carriers (read here)
• Why Parkinson’s and Alzheimer’s Are More Connected Than We Once Thought (read here)
• How Alzheimer’s Is Diagnosed — and Why It’s So Often Gotten Wrong (read here)
• Miller School of Medicine Researchers Identify Molecular Marker Linked to Faster Cognitive Decline in Alzheimer’s Disease (read here)
• Trump Team’s Use of Arcane Budget Rule Threatens Medicaid Coverage (read here)
• Senators Sound Alarm on Voter Intimidation in Nursing Homes (read here)
• Might AI Help Sharpen Dementia Diagnosis? (read here)
• How Urinary Tract Infections Trigger Delirium in People With Dementia (read here)
• Alzheimer’s protein patterns vary across populations (read here)
• Astrocytes directly regulate brain circuits involved in memory consolidation (read here)
• NIH-Funded Study Explores How the X Chromosome Influences Alzheimer’s Disease Risk (read here)
• Study ties estrogen-based menopausal hormone therapy to lower Alzheimer’s risk (read here)
• Social engagement and brain structure‐informed cognitive domain trajectories in older adults: The National Health and Aging Trends Study (read here)
• A controversial Alzheimer’s surgery is said to reverse symptoms — here’s what scientists know (read here)
• 5 Supportive Therapies That Can Help Ease Alzheimer’s Symptoms (read here)
• Protein secreted by immune cells may help drive brain aging (read here)
• Blood-thinning medication linked to slower cognitive decline (read here)
• Survey shows Americans want to start brain health habits earlier (read here)
• Legal Protections to Mitigate Discrimination due to Neurodegenerative Biomarker Status (read here)
• When the Fog Lifts: Pioneering a New Frontier in Alzheimer’s and Dementia Research (read here)
• Scientists Uncover Cellular Mechanism Driving Both Rare Childhood Dementia and Alzheimer’s Disease (read here)
• A collaborative framework for uncovering molecular and cellular drivers of VCID: Foundations for future interventions in dementia (read here)
• The past, the present, and the future of preclinical mouse models for Alzheimer’s disease and related dementias (read here)
• Human Brain Immune Cell Therapy For Frontotemporal Dementia (read here)
• How should states reach out to Medicaid enrollees affected by changes? Our research gives a hint (read here)
• Vascular Burden in Midlife Linked to Increased Risk for Dementia, Death (read here)
• TBI History Lowers Alzheimer Disease Blood Test Accuracy (read here)
• I’m an Alzheimer’s Expert—These Are the 6 Things I Never Do (read here)
• New Hall of Famer Roger Craig reveals dementia diagnosis (read here)
• miR155, triplicated in Down syndrome, regulates the development of neural stem cells and GABAergic interneurons in Alzheimer’s disease mouse and human iPSC models (read here)
• Plasma p-tau217 as a two-cutoff approach to improve tau-PET screening and trial recruitment in Alzheimer’s disease (read here)
• Real-World Study Provides New Insights into Safety of New Alzheimer’s Drug (read here)
• Study Finds Most Patients with Early Alzheimer’s Disease Pursuing Anti-Amyloid Antibody Therapy Are Not Following Guidelines for Promoting Brain Health (read here)
• Fixing the Funnel: Stakeholder Insights on Alzheimer’s Disease Trial Recruitment (read here)
• To Reduce ARIA, Focus on Vascular Health, Titrate Dosing (read here)
• Alzheimer’s-implicated protein tau scrambles nerve cells’ powerpacks (read here)
• Taxi drivers rarely die of Alzheimer’s – how complex mental maps and spatial reasoning protect your brain
  (read here)
• First complete marmoset genome will enable research on Alzheimer’s, neurodegenerative diseases (read here)
• NIH Director Bhattacharya kills more health disparities grants (read here)
• Erica Schwartz confirmed as CDC director, filling nearly yearlong vacancy (read here)
• Eligibility for Anti-Amyloid Therapies in Patients With Biomarker-Confirmed Atypical Alzheimer Disease Phenotypes (read here)
• An MRI Metric Identifies Early, Multifactorial White Matter Damage in Alzheimer’s Disease (read here)
• Avoiding Three Things During Middle Age Is Linked to 13 More Years Without Dementia (read here)
• America Must Address Early Clinical Development (read here)
• AI Is Being Used to Boost Medicaid Enrollment, but Not Without Concerns (read here)
• Lower cardiac output predicts faster brain loss in carriers of Alzheimer’s disease risk gene (read here)
• Despite Higher Alzheimer’s Risk, Black and Latinx Americans Less Likely To Test Positive on Amyloid PET (read here)
• One in six hospital beds filled by dementia patients (read here)
• Munich researchers develop novel 3D tissue model for Alzheimer’s disease (read here)
• Cognitively Sharp Centenarians Sidestep Tau Pathology (read here)
• In memory care deserts, senior centers can help close the gap in brain-related healthcare (read here)
• AI-enabled measures of brain age offer insights on dementia, more (read here)
• High prevalence of tau pathologies in late-onset psychosis: A PET study (read here)
• Action, progression and collaboration towards national dementia plans in the Americas (read here)

July 2026 News

Breaking News: FDA approves subcutaneous lecanemab as an initiation dose, the first at-home starting dose for the treatment of early AD

The U.S. Food and Drug Administration (FDA) has announced the approval of a new starting dosage regimen for Leqembi IQLIK, the subcutaneous (SC) formulation of Leqembi (lecanemab), an amyloid-targeting therapy for individuals living with mild cognitive impairment (MCI) or early dementia due to Alzheimer’s disease (AD). Previously approved only as an intravenous starting dosage, with the option for transitioning to intravenous (IV) or SC maintenance dosage after 18 months of treatment, this approval marks the first time individuals can begin treatment with home administration by themselves or their care partner.

This approval decision was based on a range of clinical data, including results from the Phase 3 Clarity AD long-term extension which showed that once-weekly SC dosing provided drug exposure comparable to IV administration, supporting similar effectiveness in reducing amyloid plaques and slowing cognitive decline. Safety findings were also comparable between SC and IV dosing, with similar rates of ARIA-E, no increase in isolated ARIA-H versus placebo, and a generally similar overall safety profile. Injection-related reactions with SC treatment were mostly mild and localized, while systemic reactions were less common.

Breaking News: LEAD Coalition submits letter urging the withdrawal of OMB’s proposed revisions to the Uniform Guidance 

The LEAD Coalition submitted a letter to the Office of Management and Budget (OMB) urging the agency to withdraw its proposed revisions to the Uniform Guidance (see OMB-2026-0034), arguing the changes would significantly undermine federal investments in Alzheimer’s disease and related dementias (AD/ADRD). The letter strongly urges OMB to reconsider how the proposal would increase administrative burden, inject political considerations into grantmaking, create uncertainty through undefined standards and vague terminology, and weaken the long-term stability needed to support research, public health programs, workforce development, and community-based services.

In the letter, the LEAD Coalition warns that the proposed rule would disproportionately harm smaller community organizations, researchers, and providers in underserved communities, while limiting efforts to address health disparities and adapt programs to evolving patient and caregiver needs. The letter argues the revisions would jeopardize progress toward the goals of the National Alzheimer’s Project Act and reduce the effectiveness of federal funding administered by agencies including the Administration for Community Living (ACL), Health Resources and Services Administration (HRSA), Centers for Disease Control and Prevention (CDC), National Institutes of Health (NIH), Department of Defense (DoD), and Department of Justice (DOJ). 

The LEAD Coalition also joined 56 other organizations in a letter urging Congressional leadership to block OMB’s proposed rule, specifically to protect federal investments in biomedical research. The letter emphasizes that stable and unbiased grant processes at NIH is essential for advancing lifesaving treatments and cures, maintaining U.S. leadership in medical innovation, and supporting individuals, care partners, and families who depend on continued scientific progress.

The OMB received more than 340,000 comments by the July 13 deadline, reflecting strong community reaction to the proposed rule. Please watch this space for additional details and updates on OMB action related to this proposal.

LEAD Coalition submits letter in response to CMS’s proposed Medicaid community engagement requirements 

The LEAD Coalition submitted a letter encouraging the Centers for Medicare & Medicaid Services (CMS) to reconsider proposed changes to Medicaid community engagement requirements (as outlined in CMS-2454-IFC). The letter cites the Shifting Ground report, recently released by the LEAD Coalition in partnership with UsAgainstAlzheimer’s, and outlines how the new rule would create significant unnecessary, counter-productive, and potentially dangerous administrative barriers to healthcare coverage and access for individuals living with Alzheimer’s disease and related disorders (AD/ADRD), their care partners, and families. Specifically, the letter emphasizes:

• New eligibility requirements threaten continuity of care for individuals living with AD/ADRD
• New administrative burdens significantly elevate risk of care partners losing their own Medicaid coverage
• Elimination of self-attestation in 2028 will increase unwarranted disenrollment for eligible individuals 

The LEAD Coalition calls on CMS to review the Shifting Ground report before finalizing the rule and to adopt policies that protect the AD/ADRD community from avoidable coverage disruptions or denials.

House passes stopgap spending bill; Senate to bring separate bill to the floor before August recess

In an effort to avoid a government shutdown, the House has passed a government funding bill that would extend funding for all federal operations through the midterm elections. This bill, H.R.9770, is a clean, continuing resolution or “stopgap” bill that would fund the government through December 4, 2026. The 220-205 vote was largely along party lines, with Democrats strongly opposed to the measure as it lacks language to ensure new dollars are not spent on Border Patrol or Immigration and Customs Enforcement (ICE) activities. The bill does not include any special exceptions requested by the White House. 

Senate Majority Leader Thune has stated that he plans to bring a short-term stopgap bill to the Senate floor before the August recess. This bill is expected to differ from the House-passed bill; it is likely to be structured to attract bipartisan support though may also include some special spending requests from the White House. Check back here for more updates in the coming weeks.

Elevance updates coverage policy for Alzheimer’s disease biomarker testing 

Elevance Health (formerly Anthem, Inc.) has updated its medical policy on biomarker testing for Alzheimer’s disease (AD) to expand coverage for blood-based biomarker testing in certain clinical circumstances. Effective July 1, the revised policy considers blood biomarker tests medically necessary for adults age 50 and older with mild cognitive impairment or dementia when the results are expected to inform diagnosis or guide further evaluation. Applicable circumstances include determining whether amyloid PET imaging or cerebrospinal fluid (CSF) testing is needed. CSF biomarker testing continues to be covered for eligible patients as part of the diagnostic evaluation for AD.

The policy limits coverage to symptomatic individuals whose diagnosis remains uncertain after a standard clinical evaluation and when test results are expected to affect clinical management. It does not cover testing for asymptomatic individuals, repeat testing without a new clinical indication, or testing that would not influence treatment decisions. The update reflects the growing role of blood-based biomarkers in Alzheimer’s diagnosis while recognizing PET imaging and CSF testing as important tools for confirming amyloid pathology, particularly when evaluating patients for anti-amyloid therapies.

FDA grants Fast Track Designation for remlifanserin in Alzheimer’s disease psychosis

The U.S. Food and Drug Administration (FDA) has granted Fast Track designation to Acadia Pharmaceuticals Inc. for remlifanserin, an investigational, highly selective, 5-HT2A receptor inverse agonist, for the treatment of hallucinations and delusions associated with Alzheimer’s disease psychosis (ADP). Fast Track designation is designed to facilitate the development and expedite the review of drugs intended to treat serious conditions and fill an unmet medical need, with the goal of getting important new drugs to patients earlier. Remlifanserin (ACP-204) is a potent and highly selective serotonin 5-HT2A receptor inverse agonist for the treatment of Alzheimer’s disease and Lewy body–associated psychosis and is believed to reduce hallucinations and delusions through selective 5-HT2A receptor inverse agonism, potentially restoring excitatory/inhibitory (E/I) balance without direct dopamine (D2) blockade and avoiding the common safety and tolerability issues associated with atypical antipsychotics. 

RADIANT (NCT06159673) — Acadia’s development program evaluating remlifanserin for the treatment of hallucinations and delusions associated with ADP — has completed enrollment in the Phase 2 portion of the program. Acadia expects to report top-line results in September or October, 2026. Consistent with RADIANT’s operationally seamless design, screening and enrollment are underway in the Phase 3 studies.

LEAD Coalition welcomes the Eden Alternative as new member

The LEAD Coalition recently welcomed the Eden Alternative as its newest member organization. The Eden Alternative is a global, non-profit 501(c)3 organization and care philosophy dedicated to transforming traditional, institutional senior living environments into vibrant, human-centered “habitats.” Founded in the early 1990s,  its philosophy and approach to aging and care seeks to improve the lives of older adults by transforming care environments into places where people can continue to grow, contribute, and experience purpose. The Eden Alternative challenges traditional institutional models of long-term care by emphasizing person-directed living rather than task-focused care. At the heart of the Eden Alternative is the belief that many of the hardships associated with aging stem not only from disease or disability, but also from loneliness, helplessness, and boredom. The approach encourages organizations to create meaningful relationships, empower individuals to make choices about their daily lives, and foster environments rich with companionship, community, and opportunities to give as well as receive care.

LEAD Coalition welcomes Absolute Value Group as new member organization

The LEAD Coalition recently welcomed Absolute Value Group (|AV|) as its newest member organization. AV is an independent clearinghouse for Alzheimer’s disease (AD) clinical expertise, with a mission of accelerating innovation for individuals and families living with AD. In the fall of 2025, AV launched a first-ever community for clinical AD experts across the US – yielding ongoing, iterative, deepening peer dialogue around emerging clinical topics. Through our patent-pending methodology, AV generates continual, deepening insight into real-world clinical decision making, with breadth and speed that benefits industry clients and other constituents. The result is living, longitudinal intelligence, accumulating institutional knowledge and timely insights mined more cost-effectively than through traditional means of thought leader engagement. As AV addresses these previously-unmet needs in a synergistic way, it serves as a trusted broker to turns negatives into positives and deliver “absolute value” to stakeholders across the AD ecosystem.

Report explores best-practice respite strategies

In 2019, ARCH National Respite Network and Resource Center launched an Innovative and Exemplary Respite Services Initiative to identify, describe, honor, and promote best practices. Over the last seven years, ARCH has recognized 47 respite organizations for their innovative services. Based on lessons learned from the Initiative, ARCH has release a new report exploring best-practice respite strategies. The report examines what best-practice respite means to program providers and caregivers, and outlines ways respite programs can embed best practices in their day-to-day work to meet best-practice goals. The report outlines recommendations for best practice implementation for individual respite programs and for respite systems, including:

For Individual Programs

• Start with caregiver-defined outcomes. 
• Write down your broad vision and mission to reflect caregiver-defined outcomes, and specify observable and measurable outcomes and goals to reach those outcomes.
• Build your service model around person- and family-centered practices.
• Clearly define and document your model in a precise, comprehensive, written service manual that will provide a road map toward achieving outcomes and goals.
• Develop a written evaluation plan that precisely matches stated outcomes and goals, monitors service activities, and measures whether outcomes and goals were achieved.
• Listen, observe, and formally measure on an ongoing basis to gauge whether the services you offer match caregivers’ and families’ needs and priorities. Innovate, adapt, and enhance services to meet changing needs, preferences, and circumstances.

For Respite Systems

• Organize and fund demonstration projects to encourage identification and dissemination of best respite practices.
• Replicate Innovative and Exemplary respite services and programs that demonstrate best practices.
• Organize and fund ongoing initiatives to support volunteer and workforce development.
• Provide training and technical assistance as well as financial resources to respite services to help them implement core practices, including program planning, implementation, and evaluation.

NAC and CNC launch HCBS advocacy toolkit

The National Alliance for Caregiving (NAC) and the Caregiver Nation Coalition (CNC) have developed an advocacy toolkit to help partners, caregivers, and advocates make the case for Medicaid home- and community-based services (HCBS), and turn that case into action. The toolkit includes: 

• Key messages on the value of HCBS for caregivers, communities, and the broader economy 
• Fact sheets, infographics, and informational articles 
• Template social media graphics and sample copy 
• Template newsletter and letter to the editor with a call to action 

HCBS are a cornerstone of how older adults and people with disabilities manage chronic conditions, avoid preventable hospitalizations, and maintain quality of life at home. For the eight million family caregivers covered by Medicaid, these services are also what makes sustained caregiving possible. Right now, they are at serious risk of cuts and elimination. A new study confirms what caregivers already know: the more states invest in HCBS, the more likely older adults are to age in place in their own homes. Researchers found that a 20 percent increase in a state’s HCBS spending share was associated with a lower likelihood of institutional or group quarters residence and reduced reliance on co-residence with an adult child, without a marked increase in Medicaid enrollment. Targeted HCBS investment helps older adults stay home and eases the challenges facing family caregivers.

KFF issue brief examines nursing home health deficiencies 

KFF has released an issue brief, A Closer Look at Deficiencies in Nursing Homes, which provides an overview of the nursing home inspection process and the types of deficiencies (e.g., failures to meet federal safety and quality requirements) identified during these inspections. The nursing home survey and certification process is a federal-state partnership designed to ensure that nursing homes comply with health and safety standards. While nursing homes can receive deficiencies for fire safety and emergency preparedness, this analysis, as well as previous KFF analysis and published state-level data, only include health deficiencies. Health deficiencies are those related to clinical care, medical treatment, and daily living conditions of nursing home residents.

The study found that the vast majority of nursing home health deficiencies did not cause actual harm to residents but had the potential to cause harm. However, five percent of all nursing home deficiencies cited in the last survey cycle rose to the level of actual harm or immediate jeopardy to residents. These are deficiencies that have caused, or are likely to cause, serious injury, harm, impairment, or death to a resident. Nursing homes with lower staffing levels are more likely to receive deficiencies that cause serious harm or immediate jeopardy to residents than nursing homes with higher staffing levels.

$100M in cuts to AHRQ healthcare delivery research grants jeopardize patient care

In mid-July, the Trump administration unexpectedly began canceling over $100M in research grants funded by the Agency for Healthcare Research and Quality (AHRQ), a small federal agency that supports research on how to improve healthcare delivery and reduce healthcare costs. The canceled grants were supporting ongoing studies on topics such as patient safety, healthcare quality, chronic disease management, and access to care. 

Though the administration has said it is redirecting resources toward different health priorities, these grant cancellations follow an already unprecedented series of actions to significantly reduce AHRQ’s capacity. In 2025, the agency lost approximately 80 percent of its staff, including most of the employees responsible for reviewing grants and supporting grantees, leaving it without sufficient personnel to effectively administer programs required by statute. Since October 1, 2025, AHRQ has awarded less than 5 percent of the funding available for extramural grants. Furthermore, the President’s FY2027 budget proposal calls for a funding reduction of approximately $129 million, the elimination of new extramural grants, and integration of operations into a new HHS office; the House’s FY2027 bill proposes eliminating all funding for the Agency for Healthcare Research and Quality (AHRQ), effectively shuttering the agency and its functions. (The LEAD Coalition’s FY2027 appropriations letter to Congress urged Congress to provide at least $500 million to AHRQ). 

AcademyHealth, which leads the Friends of AHRQ, has been at the forefront of monitoring these cuts and communicating their impact. AcademyHealth launched Research Interrupted, a website housing a dashboard and tracker that shows what grants have been canceled, including breakdowns by specific states and topics. In addition to funding amounts, it also provides descriptions of every research project in language geared to policymakers and journalists. This is an excellent tool to ensure transparency of the consequential impacts of these funding cuts on patients and families. More details can be found in reporting from the New York Times, STAT News, Health Affairs Podcast, and Becker’s Hospital Review. 

Additional Reads

• Trump Is About to Send Seniors’ Drug Costs Surging (read here)
• Can P-tau217 Predict Alzheimer’s Symptoms in Healthy People? (read here)
• Serial amyloid PET demonstrates marked reduction in amyloid burden following donanemab treatment: a real-world cohort study (read here)
• A multi-modal agent attention model for Alzheimer’s disease diagnosis with structural MRI and clinical data (read here)
• Predicting disease through voice recordings and AI: experts establish standards for vocal biomarkers (read here)
• Dementia affecting younger persons strikes Hispanics more than previously thought, UT Health San Antonio-led study shows (read here)
• Can the Brain’s Immune System Be Harnessed to Treat Alzheimer’s? (read here)
• Standardizing care for agitation in Alzheimer’s disease, results from a randomized controlled trial of an integrated care pathway versus usual care – the StaN trial (read here)
• Defining Alzheimer’s Disease Agitation: Diagnostic Criteria, Symptoms, and Disease Course (read here)
• Rutgers Researchers Lead Study Tracking Risk Factors for Alzheimer’s Disease and Dementias in South Asian Americans (read here)
• Alzheimer’s Biomarker P-tau 217 is Weak in Preclinical Studies (read here)
• RFK Jr urges Alzheimer’s screening but blunts key panel that could drive research (read here)
• Life’s Essential 8: Essential for Brain and Cognitive Health (read here)
• What Geriatric Emergency Departments Do Differently (read here)
• Associations of general and specific psychopathology factors by age 35 with dementia after age 50: a Swedish population-based sibling comparison study (read here)
• C-BRAIN Releases Its First Four AI Tools to Alzheimer’s Scientists (read here)
• Could this enzyme help remove “zombie” cells from our tissues? (read here)
• How Alzheimer’s begins and spreads in the brain (read here)
• Persistent money struggles linked to faster brain ageing (read here)
• Millions of family caregivers manage complex diets for older relatives – often with little nutritional guidance
  (read here)
• Brain immunity may undergo a major midlife overhaul (read here)
• Time-Restricted Eating Combined with Exercise Effective in Managing Weight and Improving Metabolic Health (read here)
• SuperAging isn’t simply the opposite of Alzheimer’s disease (read here)
• 3D Genome Mapping Reveals New Layer of Alzheimer’s Disease Biology in Brain Cells (read here)
• Could the Gut Hold Early Clues to Alzheimer’s Disease? (read here)
• Three new genetic modifiers connected to risk in Alzheimer’s disease (read here)
• Scientists Discover Hidden Gateways That Allow the Brain to Clear Waste (read here)
• Longitudinal PET Scans Reveal Amyloid Immunotherapy Use (read here)
• Effects of accelerated DLPFC-rTMS on cognition, EEG activity, and blood biomarkers in Alzheimer’s disease (read here)
• How a controversial rule could hurt the NIH’s ability to manage risk (read here)
• Estimating the prevalence of amyloid positivity among older adults without dementia in the general population (read here)
• AAIC26: Alzheimer’s disease heterogeneity calls for a rethink (read here)
• US dominates Alzheimer’s disease studies (read here)
• 6 dementia symptoms that can show up years before a diagnosis (read here)
• A Glimpse of the Future from the Alzheimer’s Association International Conference (read here)
• U.S. judge rejects Trump’s justification for terminating thousands of grants (read here)
• House Passes Balderson’s AADAPT Act to Improve Early Alzheimer’s Detection and Care (read here)
• Your dementia risk is higher if your spouse has it – but it’s more than shared lifestyle (read here)
• Live music series offers boost to dementia patients, caregivers (read here)
• Plasma proteome profiling identified biomarkers for the differential diagnosis and molecular staging of neurodegenerative dementias (read here)
• An Agency That Supports Health-Care Improvement Cuts Off Grant Funding (read here)
• Violence repeatedly erupts in dementia care despite warnings, inspections show (read here)
• Two New Ways to Attack TDP-43 (read here)
• Cerebrospinal fluid α‐synuclein and Aβ42 link with default mode and salience networks connectivity in dementia with Lewy bodies (read here)
• Alzheimer’s drug Leqembi may help over 75% people remain stable or improve (read here)
• Breaking News Dispatch: Diversifying the Alzheimer’s Disease Treatment Portfolio (read here)
• Protective protein reduces tau tangle toxicity linked to dementia (read here)
• Can the shingles vaccine prevent Alzheimer’s? GSK has a big study to find out (read here)
• Cultural Barriers to Dementia Diagnosis and Care (read here)
• Immigration crackdown cripples America’s caregiving industry (read here)
• Massive Meta-Analysis Pegs Centiloid Positivity Thresholds (read here)
• Alzheimer’s trial results lend momentum to strategies targeting tau (read here)
• ‘Toxic waste’ build-up in the brain may be driving dementia and ALS (read here)
• UT Health San Antonio study links sleeping long hours with higher levels of an Alzheimer’s-related protein (read here)
• Deep Learning Models Use MRI Scan to Predict Alzheimer’s Disease Progression (read here)
• AHRQ Has Begun Canceling Research Grants. Here’s What We Know. (read here)
• CDC director nominee Erica Schwartz faced questions in Senate hearing (read here)
• New WHO guidelines: up to 45% of dementia risk could be prevented or delayed (read here)
• Dementia Costs High-Income European Countries Over €221 Billion a Year, With Families Carrying Much of the Burden (read here)
• Brain’s immune cells put the brakes on out-of-control circuits in mouse model of Alzheimer’s disease (read here)
• Cell-type signatures of Alzheimer’s disease shared across population groups (read here)
• Blood Tests for Alzheimer’s Disease Are Showing Promise (read here)
• Legal Protections to Mitigate Discrimination due to Neurodegenerative Biomarker Status (read here)
• Chairman Rick Scott Celebrates Senate Passage of the Older Americans Act Reauthorization (read here)
• Predicting Risk of Cognitive Impairment With Alzheimer Disease Blood Biomarkers (read here)
• An experimental Alzheimer’s drug shows promise targeting a different brain protein, new study shows (read here)
• THC/CBD Shows Promise for Treating Agitation in Late-Stage Alzheimer’s (read here)
• A new AI model could aid earlier Alzheimer’s diagnosis (read here)
• Prognostic Value of Blood-Based P-Tau217 Levels for Progression to Cognitive Impairment (read here)
• Dementia Prevalence Trends in Latin America and the Caribbean (read here)
• Early prediction of Alzheimer’s disease using longitudinal electronic health records of US military veterans (read here)
• Major trial launched to explore GLP-1 benefit in dementia (read here)
• Performance of Alzheimer Disease Plasma Biomarkers in Patients With Prion Diseases (read here)
• Dementia risk factors look different around the world, large USC study finds (read here)
• Global consortium launches AI tools to accelerate Alzheimer’s research, treatments (read here)
• Alzheimer’s Association Launches “PROTECT-Cog” Study to Test U.S. POINTER Lifestyle and GLP-1 or Similar Drug to Cut Risk of Cognitive Decline (read here)
• As states absorb Medicaid funding cuts, family caregivers face financial ruin (read here)
• Prioritizing Women’s Brain Health Can Save Lives and Global Economies (read here)
• Heterogeneous responses to memantine in Alzheimer’s disease: A precision medicine approach using iPSC models (read here)
• Does APOE4 Act Through Oligodendrocytes? (read here)
• The digital therapy helping dementia carers (read here)
• Nominee for key federal health role has a history of questioning vaccines (read here)
• Remote network for cognitive symptoms derived from tau accumulation in progressive supranuclear palsy (read here)
• Brain-body connection: Expert shares tips to reduce risk of cognitive decline, Alzheimer’s disease (read here)
• Artificial Intelligence for the Diagnosis and Management of Neurodegenerative Diseases: A Comprehensive Review With an Emphasis on Parkinson’s and Alzheimer’s Diseases (read here)
• FTD and Young Age of Onset Can Lengthen Time to Dementia Diagnosis, Study Finds (read here)
• Long-Term Income and Productivity Losses in Individuals With Early-Onset Dementia (read here)
• When a Dementia Diagnosis Is Delivered Without Care (read here)
• The Indiana University Brain Health Program to deliver amyloid‐targeted therapy to Alzheimer’s disease patients (read here)
• Alzheimer’s Related Brain Changes Can Happen Years Before Symptoms Start (read here)
• How to avoid dementia — what the science really says (read here)
• Blood Biomarkers and Cognitive Testing Improve Prediction of Early Alzheimer’s Decline (read here)
• Decline of Ph.D. Admissions Could Imperil a ‘Generation of New Talent (read here)
• Tuberculosis Vaccine Changes Brain’s Immune Environment and Alzheimer’s Biomarkers in Older Adults (read here)
• GOP lawmakers push Trump’s FDA to make sure clinical trials are diverse (read here)
• Study explores how anxiety turns into deeper stress for dementia caregivers (read here)
• New Insights Into the Biological Mechanisms of Huntington’s Disease (read here)
• Speaking another language could slow ageing in the brain (read here)
• Proteome-wide Association Study Points to New Alzheimer’s Genes (read here)
• Inflammation Profiles and Cognitive Decline in Alzheimer’s Disease (read here)
• Differential associations of longitudinal hearing and vision trajectories with dementia and mild cognitive impairment in older adults (read here)
• Estimated labor market outcomes of people progressing from preclinical to early-stage Alzheimer’s disease in the United States (read here)
• KAIST: Dementia-Causing Substance Turns On a Therapeutic “Switch”​ (read here)
• How To Help Prevent Dementia if It Runs in Your Family—Experts Say Your Genes Aren’t Your Destiny (read here)
• Breakthrough in search for Motor Neurone Disease treatment (read here)
• I said yes to an Alzheimer’s blood test. Then I panicked. (read here)
• Unveiling the procoagulant state in Alzheimer’s disease: A novel PET imaging strategy (read here)
• CDC leadership continues to try manufacture a scientific debate on vaccines where none exists (read here)
• 6 Ways to Overcome Alzheimer’s Disease–Related Stigma (read here)
• Almost half of dementia cases could be prevented – but change is needed (read here)
• What is mild cognitive impairment? And does it always lead to dementia? (read here)
• New study reveals how protein behaviour drives blood–brain barrier specialization (read here)
• New Alzheimer’s blood test may tell when symptoms are around the corner (read here)
• Alzheimer’s Disease Biomarkers Can Predict Cognitive Decline in People Over 80 as Well (read here)
• 1 gene, 2 diseases: Sanders-Brown study reveals opposing dementia and cancer risks (read here)
• Before the memory fades: Scientists discover a potential early warning sign of Alzheimer’s (read here)
• FAMU-FSU Researchers Use High-Field NMR to Improve Alzheimer’s Protein Analysis (read here)

June 2026 News

Breaking News: The LEAD Coalition and UsAgainstAlzheimer’s Issue urgent joint report on Medicaid changes

The LEAD Coalition, in partnership with UsAgainstAlzheimer’s, has released an urgent joint report alerting people living with Alzheimer’s disease and related disorders, care partners, and their affected families that recent changes to Medicaid and other federal health programs could jeopardize access to the care and support services on which they rely. The report – Shifting Ground: What Recent Changes to Health Programs Mean for Those Living with Alzheimer’s Disease – explains in clear, accessible terms how recent changes to Medicaid may ripple through the system and affect patients and families. Specifically, there may be changes implemented in states that substantially reduce access to home- and community-based services, nursing home care, healthcare coverage, and support for family care partners.

The Shifting Ground report highlights the real-world implications of federal cuts to Medicaid funding that were enacted in 2025 (Public Law 119-21). For example, the reduction in funding could lead policymakers at the state level to make choices that create longer waiting lists for home- and community-based services, increase strain on family care partners, and reduce access to nursing home care. Shifting Ground also warns that new reporting, verification, and eligibility requirements could create significant administrative barriers for vulnerable individuals and families, increasing the risk that people who remain eligible for assistance lose access to coverage or services because of paperwork burdens or difficulties navigating the system.

The LEAD Coalition and UsAgainstAlzheimer’s are encouraging individuals and families to:

• Learn how federal Medicaid changes may affect services and supports in their state.
• Stay informed about state implementation decisions and timelines.
• Ensure their state Medicaid program has current contact information on file.
• Contact state policymakers to encourage protection of home- and community-based services.
• Share their experiences with cognitive impairment, caregiving, and Medicaid to help inform policymaking.

For additional information and what further action your organization can take, see “Provide comment to CMS on sweeping new Medicaid community engagement requirements” on the LEAD Coalition’s Take Action web page.

House Appropriations Committee advances FY2027 Labor-HHS bill with $4.5B in cuts to HHS, slight increase to NIH budget

On June 9, by a bipartisan vote of 34 – 28, the House Appropriations Committee approved the proposed Labor, Health, and Human Services appropriations bill for FY2027 (see: bill text and accompanying bill report before adoption of amendments). 

The bill proposes an overall $4.5 billion cut to the Department of Health and Human Services (HHS), or a reduction of 4% from the FY2026 enacted level. The bill includes:

• $48.8 billion for the National Institutes of Health (NIH), a $100 million increase from the FY2026 enacted level. 
  • The bill includes $4.518 billion for the National Institute on Aging (NIA), which is equivalent to the FY2026 level, and $2.87 billion for the National Institute of Neurological Disorders and Stroke (NINDS), an increase of $62 million above the FY2026 enacted level. The Committee provides $25 million for Alzheimer’s disease and related dementias (AD/ADRD) research to NINDS (part of their $62 million plus up). 
    • Report language encourages NIA to continue its AD/ADRD investment at no less than current funding levels and highlights emerging research about the role for the lymphatic drainage system. In addition, the Committee expresses concern about regions of the country where AD/ADRD rates are significantly higher than the national average and encourages research into the genetic, environmental, and lifestyle factors that may contribute to these geographic disparities.
    • Report language encourages NINDS to consider approaches to address gaps in access experienced by rural populations and to incorporate the study of sex-based differences in AD/ADRD to improve women’s brain health. 
  • The bill also includes a $20 million increase for the INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndrome (INCLUDE) Initiative.
  • Report language recognizes recent efforts by interested stakeholders to develop recommendations for a new Facilities & Administrative (F&A) costs model, aimed at addressing concerns with the current “indirect costs” model and notes these efforts are a valuable contribution to the ongoing dialogue about the future of the F&A rates framework.
  • The Manager’s Amendment included a provision capping NIH’s use of multi-year grant funding at FY2025 levels, preventing the agency from expanding this funding approach in future years.
• $2.5 billion for the Administration on Community Living (ACL), equal to the FY2026 enacted level. 
  • The Committee provides $31.5 million for the Alzheimer’s Disease Program, maintaining funding at the FY2026 level. Within this funding, at least $2 million is reserved for the National Alzheimer’s Call Center.
  • Report language expresses concern about individuals with younger-onset dementias, particularly those experiencing behavioral symptoms associated with conditions such as frontotemporal degeneration (FTD). These individuals often face challenges finding appropriate long-term care and may be at risk of involuntary discharge from care facilities. To address these issues, Congress encourages ACL to develop and share best-practice guidance on dementia-capable care systems, workforce training, caregiver support, crisis response, and non-drug approaches to managing behavioral symptoms. 
• $4.1 billion for the Centers for Medicare and Medicaid (CMS) Program Management, equivalent to the FY2026 enacted level. 
  • Report language acknowledges that cognitive screening remains underutilized during Medicare annual wellness visits and encourages CMS to explore Medicare coverage policies that would improve access to cognitive screening tools and newer blood-based biomarker tests for Alzheimer’s disease. 
  • The Committee also acknowledges CMS’s current review of how antipsychotic medication use is measured within its nursing home quality rating system and expresses support for efforts that ensure quality measures distinguish between appropriate and inappropriate use of these medications. 
• $8.1 billion for the Centers for Disease Control and Prevention (CDC), a decrease of $1 billion from the FY2026 enacted level.
  • The Committee maintains funding for CDC’s AD/ADRD activities at $41.5 million and acknowledges support for the Healthy Brain Initiative.
  • Report language encourages CDC to broaden public awareness and prevention efforts to include other brain diseases that may share similar characteristics, such as Creutzfeldt-Jakob Disease (CJD) and other prion diseases. 
• $7.6 billion for Health Resources and Services Administration (HRSA), a decrease of $440 million below the FY 2026 enacted level.
  • The Committee maintains funding for the Geriatrics Workforce Enhancement Program (GWEPs) and the Geriatrics Academic Career Awards (GACAs) Program at $48.245 million.
  • The Committee provides $8.5 million to continue the use of technology-enabled collaborative learning and capacity building models (such as Project ECHO).
• The bill proposes eliminating all funding for the Agency for Healthcare Research and Quality (AHRQ), effectively shuttering the agency and its functions.

While the proposed reductions are concerning, the House bill rejects many of the deeper cuts included in the President’s Budget (which proposed a ~12.5% reduction or $15.8 billion cut to HHS). Notably, the bill also excludes provisions to reorganize HHS to align with the structure outlined in the President’s Budget, (i.e., establishment of the Administration for a Healthy America). 

While this is a significant step forward in the appropriations process, it is far from complete. The Senate Appropriations Committee has not released its draft bill, and the House and Senate will need to reconcile differences through negotiations. Final funding levels and policy provisions will not be determined until after negotiations are complete and a final bill is enacted. The LEAD Coalition continues to advocate for all proposals in its FY 2027 appropriations letter, which has the support of 475 organizations and leading researchers.

GAO releases report on the implementation of the National Alzheimer’s Project Act

The U.S. Government Accountability Office (GAO) announced the release of the report GAO-26-108498: National Alzheimer’s Project: HHS Needs to Better Assess and Communicate Progress. This report was developed by reviewing the activities associated with the National Alzheimer’s Project Act (NAPA), a federal initiative established in 2011 through P.L.111-375 and reauthorized in 2024 to coordinate Alzheimer’s disease research, care, and services across the country. NAPA is overseen by the Department of Health and Human Services (HHS). 

Although GAO commends HHS for significant scientific and care advances, the report concludes that HHS has not adequately measured or communicated NAPA’s overall progress. GAO makes four recommendations to HHS: 

1. Provide the implementation status of individual recommendations, including what actions federal agencies have taken in response to each one.
2. Establish project-level near-term goals for each of the National Plan’s long-term goals, including performance measures, quantitative targets, and time frames for achieving results. 
3. Collect and use performance information to assess progress toward both the near-term and long-term goals and use that information to guide management decisions and adjust project activities as needed.
4. Communicate progress in a clear, digestible format for stakeholders.

The GAO acknowledges that the HHS Office of the Assistant Secretary for Planning and Evaluation (ASPE) has no direct funding to support its responsibilities for leading the NAPA project and that this may present a barrier to ASPE implementing the GAO recommendations. The LEAD Coalition has urged Congress to provide ASPE with a direct appropriation to support NAPA (see: FY 2027 letter). A summary of the GAO report is available here.

HHS announces Federal Elder Justice Action Plan and the EJCC’s “Never EVER” campaign to protect older Americans

The U.S. Department of Health and Human Services (HHS), through the Elder Justice Coordinating Council (EJCC), has announced the Federal Elder Justice Action Plan, a government-wide strategy to protect older Americans’ rights, strengthen accountability, and make help easier to find. HHS also launched “Never EVER,” a national campaign that advances the Action Plan’s prevention goals by helping people recognize and avoid government and business imposter scams. Chaired by the HHS Secretary, the EJCC brings together seventeen federal departments and agencies to strengthen collaboration, advance elder justice nationwide, and protect older adults’ dignity, independence, and financial security. The Action Plan builds on the EJCC’s 2014 Eight Recommendations with measurable steps to prevent harm, disrupt exploitation, hold bad actors accountable, and connect older Americans to help. Financial exploitation, including imposter scams, is one of the urgent threats the Action Plan seeks to address. Research estimates that roughly one in ten older adults’ experiences abuse, neglect, or exploitation each year. Scammers often impersonate government agencies or well-known businesses to pressure people into giving up money, account access, or personal information. Some schemes also create safety risks by pushing victims to withdraw cash, transfer funds, or meet someone in person. Adult Protective Services programs receive approximately 1.3 million reports each year, while family caregivers often carry the financial, physical, and emotional burden when an older loved one is left without the resources they need. Despite the scale of the problem, many cases of abuse, neglect, and exploitation are never reported.

HHS announces Operation TrialBlazer to accelerate drug development and enhance clinical trials; FDA immediately launches several activities tied to initiative 

The Department of Health and Human Services (HHS) has announced a significant and broad initiative entitled “Operation TrialBlazer,” aimed at reducing the time required to deliver new, promising therapies to patients. The initiative emphasizes faster regulatory interactions, improved coordination among government, industry, academia, and patient groups, and broader use of advanced data-driven approaches throughout the clinical development process. The initiative involves close coordination across several HHS agencies, including the U.S. Food and Drug Administration (FDA), the National Institutes of Health (NIH) – particularly the National Center for Advancing Translational Sciences (NCATS) and the National Cancer Institute (NCI) – and the Advanced Research Projects Agency for Health (ARPA-H). 

As part of this initiative, the FDA has announced several activities aimed at accelerating drug development. For early-stage clinical research, the FDA is proposing a pilot program that would create a network of qualified research institutions to help sponsors design and launch first-in-human trials more efficiently. The FDA is also promoting model-informed drug development, artificial intelligence, real-time data analysis, and other modern approaches to reduce delays, improve dose selection, enhance safety monitoring, and shorten the time between drug discovery and clinical testing. For later-stage drug development, the FDA is updating key regulatory guidances to provide greater flexibility in demonstrating drug effectiveness and conducting clinical trials. Notably, the agency revised its draft guidance on substantial evidence of effectiveness, clarifying that in some cases a single well-controlled pivotal trial combined with strong confirmatory evidence may be sufficient for approval. 

Although many experts and advocates support taking steps to reduce inefficiencies and advance delivering cures to patients, the research community cautions that faster development could weaken standards for safety and efficacy. Industry participants have also emphasized the need for consistent FDA review practices and clear expectations regarding evidence requirements. HHS has indicated that it intends to maintain standards for safety and scientific rigor. 

For more information on these changes, please read publications from Reuters and STAT. Please review the LEAD Coalition’s Take Action page for several opportunities to provide comment on FDA’s proposed changes.  Additional opportunities – including a forthcoming Request for Information from the HHS Office of Inspector General tied to this initiative – will be posted on the Take Action page as they become available.

NIH launches new office to promote NAMs and reduce reliance on animal studies

The National Institutes of Health (NIH) has announced the creation of the Office of Research Innovation, Validation, and Application (ORIVA) to speed the development and use of human-based research technologies across NIH. ORIVA will coordinate NIH-wide efforts to develop, validate and scale New Approach Methodologies (NAMs) including 3D human tissue models, computational tools, and other animal-free methods that can better reflect human biology. The office will also serve as a hub for interagency coordination and regulatory translation (note that the U.S. Food and Drug Administration also is promoting NAMs). Housed in the Division of Program Coordination, Planning, and Strategic Initiatives (DPCPSI) in the NIH Office of the Director (OD), ORIVA will take a two-pronged approach. One division will support innovations in the research community by developing new funding opportunities, research infrastructure, and training resources. The other will coordinate a multi-agency effort to facilitate the evaluation and acceptance of new research methods. 

CHCS releases issue briefs on implementation of Medicaid work requirements

The 2025 budget reconciliation bill (Public Law 119-21) introduced new federal Medicaid work requirements for certain members. Implementing this policy poses challenges for state Medicaid agencies, including an increased risk of coverage disruptions for non-exempt members. However, states can take proactive steps to help mitigate these risks. The Center for Health Care Strategies (CHCS) has released a new series of issue briefs examining key details about the new requirements and offers practical approaches to support implementation that minimizes administrative burden and is informed by the experiences of Medicaid members. Issue briefs in this series include:

• Improving Applicant and State Staff Experiences During Federal Medicaid Work Requirements Implementation: This brief offers practical strategies, informed by state staff and civic technologists, to help states implement federal Medicaid work requirements, with a focus on usability, iteration, and application design. 
• Building Nimble Procurement Approaches for State Medicaid Tech Systems: This brief draws on Alaska Medicaid’s experience as leader in procurement agility, having invested in this transformation for almost a decade. It outlines best practices states can use to improve their processes within existing procurement authorities. 
• Data and Analytic Approaches for Medical Frailty Exemptions to Federal Medicaid Work Requirements: This brief draws on lessons from experts at the Harvard T.H. Chan School of Public Health, the Aspen Institute, and Katch Strategies on data and analytic approaches for the medical frailty exemption. It shares considerations to help streamline state adoption of the medical frailty exemption and minimize Medicaid application and renewal barriers for medically frail members. 
• Aligning Work Requirements Across SNAP and Medicaid to Support Public Benefit Continuity: This brief compares key features of the work requirements in SNAP and Medicaid, and outlines strategies for state Medicaid agencies, SNAP-administering organizations, and other stakeholders to coordinate implementation across both programs. 
• Strengthening Cross-Agency Collaboration Across Medicaid and Other State Partners to Support Work Requirements Implementation: This brief outlines opportunities for Medicaid agencies to collaborate with partners in labor, education, corrections, SNAP, TANF, and other agencies to successfully address implementation challenges and maintain member coverage. 
• Connecting Medicaid Members to Work: Expanding Access to Evidence-Based Employment Models: This brief outlines the evidence behind general workforce and supported employment programs and includes resources state agencies can use to prepare for work requirements implementation. 
• Engaging Medicaid Members and Community-Based Organizations in Medicaid Work Requirements Implementation: This brief outlines approaches states can use to partner directly with Medicaid members and community-based organizations in implementing work requirements that reflect community input and minimize coverage disruptions. 
• A Summary of Federal Medicaid Work Requirements: This brief synthesizes key details of the new federal Medicaid work requirements, including timeline, populations impacted, exemption categories, and more. 

Consortium launches HCBS Impacts Tracker Project

State Medicaid programs are facing increased budget pressure from federal policy changes, including over $900 billion in reduced federal Medicaid funding due to the 2025 budget reconciliation bill (Public Law 119-21). Based on evidence from past major reductions of federal Medicaid funds, many states are likely to respond by cutting optional services like Home and Community-Based Services (HCBS), which are crucial in supporting older adults and people with disabilities to live in their homes and communities. Some states already are proposing and implementing HCBS cuts. 

A consortium (led by the George Washington University Milken Institute School of Public Health Hirsh Health Law and Policy Program, the Human Services Research Institute, the LeadingAge LTSS Center @UMass Boston, and ATI Advisory) has launched the HCBS Impacts Tracker Project to track policy changes states propose or implement in their HCBS programs and to measure the impacts of those changes on older adults and people with disabilities. During its initial phase, the project will develop the methodology for tracking and pilot a tracking tool. This planning grant will inform the next phase of this project: establishing a sustainable, national resource with real-time information for use by policymakers, advocates, researchers, and people with lived experience to track Medicaid HCBS policy shifts and their impacts at a state and national level. The HCBS Impacts Tracker will be updated biweekly. National, state, or local organizations may use the HCBS Information Collection Form to inform the consortium about proposed or implemented HCBS changes that are missing from the HCBS Impacts Tracker. Questions or comments may be submitted to HCBSTracker@gwu.edu.

LEAD Coalition welcomes Cognivue as new member organization

The LEAD Coalition recently welcomed Cognivue as its newest member organization. Cognivue is a pioneer in digital cognitive assessment and brain health innovation. As the developer of the first FDA-cleared Digital Cognitive Assessment (DCA), Cognivue helped establish and advance a category that is increasingly important as healthcare systems seek scalable approaches to earlier cognitive evaluation and Alzheimer’s disease risk identification. Unlike traditional paper-and-pencil assessments that simply have been digitized, Cognivue utilizes proprietary adaptive psychophysics, machine learning-driven test personalization, reaction time analysis, visual salience measurements, and motor control calibration to tailor each assessment to the individual patient while minimizing confounding factors, reducing administrator bias, and improving consistency across testing environments. The platform provides age-adjusted scoring, evaluates four cognitive domains through ten subtests, and incorporates processing speed and reaction time measurements to objectively characterize cognitive performance. In addition to providing objective cognitive performance data, Cognivue includes the Cognivue Amyloid Risk Measure (CARM), the first published DCA capability shown to predict the likelihood of amyloid pathology using cognitive performance data alone. Through multiple peer-reviewed publications and real-world implementation studies, Cognivue has demonstrated the value of a two-stage screening approach that combines cognitive assessment and biomarker testing to help identify individuals who may benefit from additional evaluation, blood-based biomarker testing, or specialist referral, while also providing reassurance to those whose performance is consistent with expected cognitive function at the time of testing. Cognivue also has helped pioneer brain health assessment in allied healthcare environments, particularly audiology and hearing healthcare, bringing cognitive screening closer to where patients already receive care. By meeting patients where they are and helping guide appropriate next steps, Cognivue is working to transform cognitive assessment from a point-in-time test into a practical pathway for earlier answers, earlier intervention, and more informed decision-making for patients, families, and healthcare providers.

American Brain Coalition shares MCI webinar series recordings

Recordings are available for the American Brain Coalition (ABC) three-part webinar series on Mild Cognitive Impairment (MCI). The series brought together individuals living with MCI, care partners, clinicians, researchers, advocates, and community leaders to explore critical issues surrounding brain health, cognitive impairment, patient care, and innovation. LEAD Coalition member and allied organizations along with other interested organizations are encouraged to share the recordings as educational resources for individuals and organizations seeking to better understand MCI and support those at risk for or affected by cognitive impairment.

Session 1: Understanding MCI: The Clinical and Lived Experience, featured panelists:

• Alireza Atri, MD, PhD, Chief Medical Officer at Banner Health
• Ron Petersen, MD, PhD, Cora Kanow Professor of Alzheimer’s Disease Research at Mayo Clinic
• Rev. Cynthia Huling Hummel, DMin, Advocate living with MCI 

Session 2: Managing MCI: Clinical and Community Perspectives, featured panelists:

• Kyra O’Brien, MD, MS, Assistant Professor of Neurology at the University of Pennsylvania Pearlman School of Medicine
• Annalise Rahman-Filipiak, PhD, Assistant Professor of Psychiatry at the University Michigan Medical School
• Jay Reinstein, Advocate living with MCI

Session 3: Promoting Brain Health and Innovation, featured panelists:

• Heather Snyder, PhD, Senior Vice President of Medical & Scientific Operations at the Alzheimer’s Association
• Catherine Patterson, MPP, Acting Chief Operating Officer at UsAgainstAlzheimer’s
• Pamela Price, BS, RN, Deputy Director, The Balm In Gilead

The LEAD Coalition’s Executive Director, Ian Kremer, JD, served as moderator for each session. 

The webinar series was made possible through the generous support of Eli Lilly and Eisai and was guided by a distinguished Steering Committee representing the Alzheimer’s Association, The Association for Frontotemporal Degeneration (AFTD), Cure Alzheimer’s Fund, Dementia Society of America, LEAD Coalition, Lewy Body Dementia Association, and UsAgainstAlzheimer’s. Through initiatives such as this webinar series, the American Brain Coalition remains committed to advancing brain health education, raising awareness, and fostering collaboration across the neuroscience and patient advocacy communities.

Dementia will cost the U.S. $818 billion in 2026

A new study from the U.S. Cost of Dementia Project, finds Alzheimer’s disease and related disorders will cost the United States an estimated $818 billion in 2026, driven largely by often-overlooked costs to persons living with dementia and to the family and friends providing their care. In addition to medical and long-term care costs, the cost model (see the methods paper) accounts for factors often not captured in other estimates of dementia’s economic toll, such as diminished quality of life, lost earnings for people with dementia and care partners, and extensive unpaid care provided by family and friends. The 2026 estimate comes from a multi-year research project, funded through a cooperative agreement with the National Institute on Aging, quantifying annual U.S. dementia costs, and reflects advances made since the 2025 inaugural report. Key findings include:

• Dementia population: 5.7 million Americans are living with dementia in 2026, including 5.1 million who are ages 65 and older.
• Quality of life impact: Reduced quality of life among people with dementia—marked by declines in cognition, function and independence—represents the largest cost at $320 billion. Informal care partners experience an additional $15 billion in quality-of-life losses related to emotional and physical strain.
• Unpaid caregiving: About 5.2 million people, often in their prime working years, provide 6.8 billion hours of unpaid care to a family member or friend with dementia, valued at $237 billion.
• Medical care costs: Long-term and medical care costs for people with dementia total $222 billion. Medicare and Medicaid cover about 70% ($154 billion), while patients and families pay 20% ($46 billion) out of pocket.
• Lost wages: People with dementia and their care partners forgo $23 billion in annual earnings.

The project aims to provide the most comprehensive accounting yet of dementia’s economic impact while strengthening the ability of researchers and decision makers to address it. Tracking changes in dementia costs over time, including shifts in who bears those costs and when, can help inform resource allocation and treatment decisions. The cost model incorporates large, nationally representative datasets, including the Health and Retirement Study and administrative health data from the Centers for Medicare and Medicaid Services (CMS). Researchers use dynamic microsimulation to project how new treatments, care models and policies will affect future dementia costs, including often-hidden impacts on well-being and finances. The cost model is informed by public health leaders, healthcare providers, and the experiences of people with mild cognitive impairment and care partners of people living with dementia, which are shared through panel discussions organized by the Alzheimer’s Association.

New report shines light on rural family caregivers

The National Alliance for Caregiving and Lutheran Services in America have released Rooted in Care: Transforming the Future for Rural Family Caregivers, a new report highlighting the realities facing more than 12.6 million rural caregivers across the country. The data tell a clear story. More than half of rural caregivers provide 21 or more hours of care each week, nearly 88% report moderate to high emotional stress, and more than half report high financial stress. For rural caregivers, geographic isolation, limited access to services, and under-resourced communities mean they are carrying an even heavier load, often invisibly. Their resilience is extraordinary. But resilience alone is not a policy solution. Federal and state leaders must invest in caregiver supports, strengthen the direct care workforce, expand access to home and community-based services, and ensure caregivers are recognized as essential partners in care. 

NCOA issues research series on AI use in HCBS

The National Council on Aging (NCOA) has issued a new research series examining the promises and risks of using Artificial Intelligence (AI) in home- and community-based care that helps older Americans and individuals with disabilities live independently. The three-report series, A New Era of Care, explains what AI is, where it is already being used in home care, and what safeguards are needed to ensure that the technology strengthens—but does not replace—the human touch of home care. The home- and community-based services (HCBS) sector is already innovating with AI, the research shows. Some providers are adopting AI-powered tools to improve safety and monitoring—such as sensors, fall-detection systems, and predictive analytics. Others are using AI to streamline operations, including hiring, training, communication across care teams, reporting, and claims processing. Yet, providers universally report that there are key risks that must be addressed. These include:  

• Privacy and consent: Weak safeguards can expose or misuse sensitive client and worker data.
• Accuracy and reliability: False positives/negatives and generic outputs can waste time or cause harm. 
• Bias and uneven outcomes: Tools may perform worse for disabled people, older adults, or rural communities and can treat groups differently. 
• Human connection: Over-automation can erode judgment, autonomy, and relationship-based care. 
• Usability and workflow: Poor design or poor integration can add tasks and increase stress.
• Compliance and liability: Errors can trigger HIPAA, Medicaid/Medicare, labor, and contractual risks if outputs are not vetted. 

Together, these reports are intended to start a broader conversation about the role of AI in direct care, offering early insights and considerations to help states, providers, and partners thoughtfully explore how these technologies can support the workforce and the people they serve.

Additional Reads

• Women with Parkinson’s More Prone to Alzheimer’s Pathology (read here)
• The 1 Thing I Did To Help Ease the Pain of My Mother’s Alzheimer’s for Both of Us (read here)
• Inflammation profiles in Alzheimer’s disease relate to cognition and neurodegeneration (read here)
• 5 million have dropped ACA insurance after Trump and the GOP let prices skyrocket (read here)
• Proposed Rule Would Curtail Medicaid State Directed Payments (read here)
• Atrophy in preclinical Alzheimer’s disease maps to a network that predicts longitudinal decline (read here)
• New Alzheimer’s drugs offer hope for some, but good dementia care protects the humanity of those they cannot help (read here)
• Detecting Alzheimer’s disease in its early stages could be possible (read here)
• Plasma GDF15 affects long-term dementia risk and alters neuroimmune signaling (read here)
• Plasma Proteome Offers Clues to Risk and Resilience in APOE4 Carriers (read here)
• Diet and Brain Health: What the Science Says About Food, the Gut, and Dementia Risk (read here)
• Whole-System Trust in Science, Medicine, and Public Health (read here)
• America’s Infrastructure To Support Older Adults Is In Limbo (read here)
• Diet Quality and Dementia Risk in Older Adults With Alzheimer Pathology (read here)
• Why does the brain become more vulnerable to Alzheimer’s disease with age? (read here)
• New mechanism found for neuronal death in Alzheimer’s and frontotemporal dementia (read here)
• Study flags medication risk during aged care transition (read here)
• The simple life changes that can prevent your cognitive decline (read here)
• Protect Your Hearing. Protect Your Brain. (read here)
• How Caregivers Can Keep People With Dementia Engaged (read here)
• What to Do When Dementia Patients Lose Inhibitions (read here)
• Dementia care: how praise can help – and when it can miss the mark
  (read here)
• The Alzheimer’s crisis hits rural America hardest (read here)
• Study finds estrogen-based hormone therapies could protect brain health in older women (read here)
• What the New No Surprises Act Final Rule Means for Providers and Insurers (read here)
• Worried About Your Aging Parents? Welcome to the Caregiving Club (read here)
• Health equity researchers fear unseen level of scrutiny under White House proposal (read here)
• Could nighttime light affect brain health? UK researchers investigate Alzheimer’s links (read here)
• How your sleep habits team with your genes to determine Alzheimer’s risk (read here)
• Pet visits bring “a small moment of home” to long-term care, study finds (read here)
• Personality may shape how caregiving affects health (read here)
• New Imaging Technique Reveals the Brain’s Waste-Removal System in Action (read here)
• Stopping Alzheimer Disease (read here)
• Clinical pathways matter for multimodal deep learning in early Alzheimer’s disease detection (read here)
• Associations of stable psychological traits with multi-omic subtypes of Alzheimer’s dementia (read here)
• ‘It’s pure joy’ – How silent discos can transform dementia care (read here)
• Digital speech‐based markers to advance prognosis in Alzheimer’s disease (read here)
• External validation of dementia risk prediction models in the EPIC-Norfolk cohort: a UK-based cohort study (read here)
• Can Better Sleep Lower Dementia Risk? What the Science Says (read here)
• Sickly Sweet? Sugary Proteins Abound in AD Brain, May Worsen Dementia (read here)
• Fish oil supplements may not prevent Alzheimer’s-related decline (read here)
• IRA’s $2,000 out-of-pocket cap helped Medicare patients access expensive drugs, study finds (read here)
• NIH diversity programs doubled undergraduates’ odds of getting a Ph.D., 20-year study finds (read here)
• Can a Blood Test in Midlife Predict Your Alzheimer’s Risk? (read here)
• Follow the tau: This brain protein presents a possible path to earlier Alzheimer’s diagnosis (read here)
• Are Older People with Brain Diseases More Likely to Have TBI? (read here)
• USC study finds key Alzheimer’s risk factor may behave differently in Hispanic older adults (read here)
• Omics signature of new-onset mild cognitive impairment and dementia in a population-based study (read here)
• I’m an Alzheimer’s specialist. I still missed it in my own father (read here)
• Your Guide to Alzheimer’s Blood Tests: Pricing, Accuracy, and Where to Get One (read here)
• Retinal photographs can help predict Alzheimer’s disease risk factors (read here)
• The OMB and the Politicization of Science (read here)
• Trump proposes putting political goals above objective criteria in deciding who gets government grants, from childcare to research to public safety (read here)
• As states follow Trump’s Medicaid fraud playbook, people with disabilities struggle to find care (read here)
• Copper drug restores memory and clears toxic Alzheimer’s proteins (read here)
• IU collaboration to use AI in identifying possible drug targets for Alzheimer’s patients (read here)
• Hospital-treated infection associated with Alzheimer’s disease pathology: underlying mechanisms (read here)
• Loneliness Drives Cognitive Impairment, Can Lead to Shorter Life, Study Suggests (read here)
• Dementia care: Re-envisioning the role of music (read here)
• I’ve spent 40 years in research. I have never seen a threat to science like the new grantmaking rule (read here)
• Final Rules for Medicaid Work Requirements Are Out. Here’s What You Need To Know. (read here)
• How Exercise Protects the Brain (read here)
• Evidence builds for the role malfunctioning protein removal systems play in neurodegenerative diseases (read here)
• The word Dementia should be retired (read here)
• International Researchers React to NIH Scrutiny of Foreign Coauthorship (read here)
• Brain workouts both inside and outside school walls may shape dementia risk
  (read here)
• The midlife habits that could make or break your brain health long-term (read here)
• Microglia Open a Metabolic Pipeline for Active Neurons (read here)
• Alzheimer’s risk: What you can change (read here)
• How to talk to someone who has dementia (read here)
• High ultra-processed food consumption linked to increased dementia risk (read here)
• Several CVD conditions, risk factors linked to Alzheimer’s risk, notably low blood pressure (read here)
• Smartphone Tests Spot Cognitive Decline Faster than Standard Method (read here)
• Study links joint pain supplement to accelerating dementia (read here)
• Donanemab Shows Durable Amyloid Clearance and Consistent Safety in Early-Start Patients (read here)
• Driving Hope and Discovery in Alzheimer’s Research for Those Most at Risk (read here)
• Effective use of hearing aids may help reduce dementia risk in older adults (read here)
• ‘You’re treated like this is the end’: Meet the dementia rebels – diagnosed and determined to change people’s minds (read here)
• Postoperative Delirium Stands Out as Major Predictor of Cognitive Decline (read here)
• Loneliness Linked to Worse Memory, but Not Faster Cognitive Decline (read here)
• Hay fever, antihistamines and the evidence on dementia risk (read here)
• Network based statistics associates increased connectivity to REM sleep disorder and hallucinations in early DLB (read here)
• How hospital admission affects persons with dementia (read here)
• Kennedy Shows Minimal Engagement With Vast Health Portfolio
  (read here)
• Midlife hypertension and late-life cognition: weighting the LifeAfter90 study (read here)
• Social Factors Shape Diabetes, Dementia Risk Across Populations (read here)
• New drug could slow the development of Alzheimer’s (read here)
• Intraindividual cognitive variability predicts amyloid beta, tau PET, and dementia conversion in Down syndrome: a potential marker of cognitive resilience (read here)
• Tiny HHS office tasked with protecting research participants’ safety is running on fumes (read here)
• Favorable lifestyle and health linked to lower dementia risk even in people with a genetic risk factor (read here)
• Flu drugs show promise against cognitive decline, aging-related diseases (read here)
• Antibody fragment prevents haemorrhages associated with new Alzheimer’s treatments (read here)
• Closing The Gap In Alzheimer’s Care (read here)
• Researchers identify a key biological tipping point in Alzheimer’s disease (read here)
• Could a Common Eye Bacteria Be Linked to Alzheimer’s? (read here)
• Struggle sleeping? These three common sleep habits tied to signs of brain aging, U of A study finds (read here)
• Advancing the Use of Dynamic Tools in Drug Development: The US FDA’s Fit-For-Purpose Initiative (read here)
• Drug companies, patient groups urge FDA to pause commissioner’s voucher program (read here)
• As dementia cases rise, UF researchers develop a breakthrough AI tool to improve diagnosis accuracy (read here)
• Genetics for high pulse pressure associated with higher risk of dementia-related death (read here)
• Air pollution may be harming your brain’s ‘encyclopedia’ (read here)
• Researchers identify over 90 genetic loci linked to Alzheimer’s disease risk (read here)
• Trump administration to strip job protections of top NIH officials, grants staff (read here)
• Psychological course could be game changer for carers of people with dementia (read here)
• Exploring automated plasma phospho-tau217 assays for the diagnosis of Down syndrome-related Alzheimer’s disease (read here)
• Short RNAs may prevent neuron death linked to ALS, dementia (read here)
• CMS Requires More Restrictive Definition of Medical Frailty in New Medicaid Work Requirements Rule (read here)
• White House Seeks to Impose Political Test on Billions in Federal Grants (read here)
• High-Dose Flu Vaccine Linked to Lower Alzheimer’s Risk (read here)
• New tools for early detection of Alzheimer’s disease (read here)