NEWS

June, 2025 News

LEAD Coalition welcomes new federal policy director

The LEAD Coalition is pleased to announce the appointment of Dr. Courtney Wallin as its new Federal Policy Director, beginning on June 10.  In this role, Dr. Wallin will work alongside the Executive Director to build and leverage consensus on federal public policies relevant to Alzheimer’s disease and related causes of dementia. Dr. Wallin will contribute technical expertise to strategic conversations, forge relationships with LEAD Coalition member and allied organizations along with the scientific community, and develop messaging to effectively articulate policy positions to a broader audience. 

Dr. Wallin brings a wealth of leadership and experience to the LEAD Coalition. She joins the LEAD Coalition from the National Institutes of Health (NIH), where she most recently was the Director of the Office of Legislation, Policy, & International Activities at the National Institute on Aging (NIA). In this role, Dr. Wallin served as a liaison to Congress and other stakeholders and led a team responsible for developing high-impact products, such as the annual Alzheimer’s Disease Professional Judgment Budget and Scientific Progress Report. Dr. Wallin joined the NIH in 2016 as a Presidential Management Fellow, serving as a health science policy analyst within NIA. As a fellow, Dr. Wallin contributed to a range of projects and events, including organizing the inaugural National Dementia Care and Caregiving Research Summit in 2017, a groundbreaking event (first proposed by the LEAD Coalition) that has set the stage for national dialogue on dementia care and led to numerous NIH funding opportunities. Dr. Wallin also served as the Outreach Lead at NIH’s All of Us Research Program in 2020 and 2021, where she led efforts to raise awareness about the value of the All of Us dataset, engage researchers from a broad range of communities, and cultivate program partnerships.

Dr. Wallin earned her Ph.D. in Cognitive Neuroscience from The George Washington University. While pursuing her doctorate, Dr. Wallin was awarded the National Science Foundation Graduate Research Fellowship; she also received the Australian Endeavour Research Fellowship to support research training at the University of Wollongong in Australia. Dr. Wallin also holds undergraduate degrees in Biology and Psychology from Providence College. 

Administration releases updated details on radical FY 26 budget proposal

The Trump Administration has released the Fiscal Year 2026 (FY 26) Discretionary Budget Request technical supplement, a 1,215 page document containing various tables and schedules, explanations of the work to be performed and the money needed, language proposed for enactment by the Congress on each item that requires congressional action in an appropriations bill, and language proposed for the general provisions of appropriations Acts that apply to entire agencies or groups of agencies. The Administration also released its proposed HHS Budget in Brief.

The Administration seeks to slash the HHS discretionary budget by 25%, from $127 billion in FY 2025 to $95 billion in FY 2026. NIH would be cut by nearly 40% (over $18 billion), funding for the National Institute on Aging (NIA) would plummet from $4.512 billion to $2.687 billion. Simultaneously, the National Institute of Neurological Disorders and Stroke (NINDS) and two largely unrelated institutes would be merged into a single institute with their combined funding dropping from $4.114 billion to $2.445 billion. Taken together, the ability of NIA and NINDS to lead Alzheimer’s disease and related disorders research likely would be crippled. The Administration budget also seeks to codify a 15% cap on facilities and administrative (F&A) costs — an essential component of scientific research grants, critical to research infrastructure. On June 10 at 10:00 a.m. ET,  the Senate Labor, Health and Human Services, Education, and Related Agencies Appropriations Subcommittee, which has jurisdiction over NIH funding, will hold a hearing titled “A Review of the President’s Fiscal Year 2026 Budget Request for the National Institutes of Health” (view webcast). NIH Director Jay Bhattacharya, M.D., Ph.D, will be the sole witness and the hearing will be held in Dirksen Senate Office Building, room 124.

As a direct result of powerful advocacy led by USAging and its allies, the Administration has retreated from its previously announced plan to impose deep funding cuts on Older Americans Act (OAA) programs and services, the State Health Insurance Assistance Programs (SHIPs), Aging and Disability Resource Centers, and Adult Protective Services. The Administration also now proposes that all OAA programs and many other aging and disability programs previously administered by the Administration for Community Living (ACL) be moved to a newly renamed Administration for Children, Families and Communities. None of these programs will move to the Centers for Medicare and Medicaid Services (CMS), and the programs that made up ACL will continue to be housed in one HHS agency, which will allow for continued collaboration between the aging and disability networks to maintain coordination in the delivery of critical services to millions of older adults and caregivers. 

The following Congressional Justifications have been published:

• CDC
• CMS
• FDA
• NIA
• NINBR (which would include NINDS)

This entry will be updated periodically as additional details and analysis become available.

House Appropriations Committee releases mark-up schedule

House Appropriations Committee Chair Tom Cole (R-OK) has issued the fiscal year (FY) 2026 markup schedule. The Labor, Health and Human Services, and Related Agencies (Labor-HHS) Appropriations Subcommittee is scheduled to mark up its FY 2026 spending bill on July 21, and the full House Appropriations Committee would mark up the bill on Thursday, July 24.

Improving Seniors’ Timely Access to Care Act reintroduced

The Improving Seniors’ Timely Access to Care Act – bipartisan, zero-cost legislation to improve access to care for seniors enrolled in Medicare Advantage (MA) plans – has been reintroduced by Senators Mark Warner (D-VA) and Roger Marshall (R-KS), along with Representative Ami Bera (D-CA), Mike Kelly (R-PA), Suzan DelBene (D-WA), and John Joyce (R-PA). Last Congress, the bill was supported by a super majority of members in the Senate (60) and a majority in the House (232), and was unanimously passed by the House in 2022. The bill focuses on streamlining the often cumbersome and time-consuming prior authorization process, ultimately allowing healthcare providers to spend more time on patient care rather than administrative burdens. This legislation aims to help clinicians better serve and improve care for the 32.8 million Americans enrolled in MA plans. Audits by the Department of Health and Human Services Inspector General have found that MA plans subjected enrollees to unnecessary delays, incorrectly denied medically necessary care, and ultimately approved 75% of requests that were initially denied.

The legislation would:

• Establish an electronic prior authorization process for Medicare Advantage plans, including a standardization for transactions and clinical attachments.
• Increase transparency around Medicare Advantage prior authorization requirements and their use.
• Clarify HHS’ authority to establish timeframes for e-prior authorization requests, including expedited determinations, real-time decisions for routinely approved items and services, and other prior authorization requests.
• Expand beneficiary protections to improve enrollee experiences and outcomes.
• Require HHS and other agencies to report to Congress on program integrity efforts and other ways to further improve the e-prior authorization process.
• Result in a zero cost to American taxpayers.

Updated resource on impact of NIH grant terminations 

The Association of American Medical Colleges (AAMC) has issued an updated analysis on the impact of NIH grant terminations on U.S. institutions. A previous AAMC analysis detailed the termination of more than 770 NIH grants, after which there was a lengthy pause in updates to publicly reported data from HHS. The agency released updated information on May 19, revealing nearly double the number of grant terminations since its last report. The new analysis shows that 1,424 NIH grants now have been terminated (39% were NIH R01 grants), accounting for $2.4 billion in lost funding across U.S. institutions. 160 active clinical trials have been affected by the cuts.

Alzheimer’s Association launches free mobile app to support newly diagnosed individuals and care partners

The Alzheimer’s Association announced has launched a new mobile app to support newly diagnosed, early-stage individuals and their care partners navigate their journey with Alzheimer’s and other dementias. The free My ALZ Journey app provides personalized guidance, education, planning tools, interactive activities and local community resources. People living with dementia, including current and former members of the Alzheimer’s Association National Early Stage Advisory Group (ESAG), were instrumental in the app’s development — identifying the need for it, helping shape and test its content, and eventually naming it. My ALZ Journey features a simple, intuitive design that guides users through a personalized experience. The Home screen offers a curated path with step-by-step guidance and resources that evolve over time to reflect the user’s journey. The app’s Library provides easy access to topic-based educational content from alz.org, answering common questions about Alzheimer’s, caregiving and planning for the future. Users can connect directly to their local Alzheimer’s Association chapter through the Community section, which highlights nearby support groups, events and programs. The Activity Center offers interactive tools, planning resources and activities to help users stay engaged and supported. The My ALZ Journey app is available now for free in the Apple App Store and Google Play Store. 

FDA approves post-market surveillance study of Alzheimer’s disease prognostic tool

The U.S. Food and Drug Administration (FDA) has approved Darmiyan, Inc.’s post-market surveillance study for BrainSee, its clinical prognostic tool for Alzheimer’s disease. This 7-year study aims to further validate the safety and effectiveness of BrainSee in a socio-demographically diverse patient population across the United States. The insights gained will support pharmaceutical companies and contract research organizations (CROs) in identifying optimal candidates for next-generation Alzheimer’s clinical trials—advancing both precision and equity in patient selection. BrainSee is an AI-powered technology that combines standard brain MRI, basic cognitive assessments, age, and biological sex to generate a prognostic score. It is the first and only FDA-approved, non-invasive technology that offers clinicians actionable insight into whether patients over the age of 55 with amnestic mild cognitive impairment (aMCI) will progress to clinical Alzheimer’s disease within five years. The FDA granted BrainSee marketing authorization in January 2024 via the De Novo pathway. The post-market study will collect, curate, and analyze large-scale data from patients of diverse ethnic and socioeconomic backgrounds via community clinics and hospitals. It will also highlight BrainSee’s clinical utility in underrepresented populations. Darmiyan is collaborating with leading Alzheimer’s Disease Research Centers and nationally recognized datasets, including the National Alzheimer’s Coordinating Center (NACC), the Health & Aging Brain Study – Health Disparities (HABS-HD), the Alzheimer’s Disease Neuroimaging Initiative (ADNI), the University of Alabama at Birmingham (UAB) ADRC, UC Davis ADRC, and the Open Access Series of Imaging Studies (OASIS) of Washington University.

KKF issue brief examines Older Americans Act and proposed changes by Trump Administration

The Kaiser Family Foundation (KFF) has released an issue brief reviewing key aspects of the Older Americans Act (OAA). The brief explains the types of services and programs made available by the OAA, how these programs are administered through federal, state, and local agencies, recent funding levels, and data about the older adults receiving services provided under Title III programs. The number of older adults served and services provided in 2023 include:

• 181 million home-delivered meals and 57 million congregate meals provided
• 1.2 million one-way assisted transportation trips provided
• Nearly 2 million individuals received some type of nutrition counseling and education
• 216,000 individuals received legal assistance

The issue brief also examines the proposed reorganization of the U.S. Department of Health and Human Services (HHS) that would close the Administration for Community Living (ACL) and shift its responsibilities to the Administration for Children, Families, and Communities (ACFC), while reducing staffing for OAA programs and services.

Additional Reads

• Study: Iron Plays a Major Role in Down Syndrome-Associated Alzheimer’s Disease (read here)
• The simple life changes that can prevent your cognitive decline (read here)
• Former NIH chief calls research cuts “careless” and “heartless” (read here)
• Global study uncovers genetic risk factors for Alzheimer’s Disease across populations (read here)
• How an Alzheimer’s peptide and a blood protein may combine to drive early disease pathology (read here)
• Do Strong Immune Responses Protect People from Dementia? (read here)
• Family and friends shoulder the real cost of dementia − $224B in unpaid care (read here)
• How creative activities can help people with dementia (read here)
• A new bedtime recall exercise may enhance memory in older adults with and without Alzheimer’s Disease (read here)
• The journey to Alzheimer’s diagnosis matters, here’s why (read here)
• NHS patients denied new Alzheimer’s drugs (read here)
• AI Is Detecting Unlikely but Potential Drug Candidates for Neurological Diseases (read here)
• Texas A&M Research Offers Hope For Patients Facing Alzheimer’s (read here)
• Valley of Forgetting: A Journalist’s Journey Into a Land of Inherited Early-Onset Alzheimer’s (read here)
• Transferability of European-derived Alzheimer’s disease polygenic risk scores across multiancestry populations (read here)
• PhD student explores spirituality’s role in dementia care (read here)
• Alzheimer’s Risk Linked to Increased Social Activity, Not Isolation (read here)
• The Cold Shoulder: Grant Freezes, Indefinite Delays Take Their Toll (read here)
• Projected Effects of Proposed Cuts in Federal Medicaid Expenditures on Medicaid Enrollment, Uninsurance, Health Care, and Health (read here)
• Good cognitive health lowers risk of Alzheimer’s disease later in life – but genetics can weaken that protection (read here)
• Bill Gates: I lost my father to Alzheimer’s. But I’m more optimistic than ever about fighting the disease (read here)
• Brain imaging improves Alzheimer’s diagnosis in healthcare (read here)
• Alzheimer’s: bacteria that cause stomach ulcers may protect the brain, our new research indicates (read here)
• Alzheimer’s risk gene may disrupt brain health (read here)
• Brain white matter abnormalities affect cognition and impact Alzheimer’s disease development: study  (read here)
• Cannabis-Related ED Visits, Hospitalizations Tied to Higher Dementia Risk (read here)
• Judge rules some NIH grant cuts illegal, saying he’s never seen such discrimination in 40 years (read here)
• Alzheimer’s disease digital biomarkers multidimensional landscape and AI model scoping review (read here)
• NUS Medicine study finds key blood proteins which predict future cognitive decline (read here)
• Texas A&M Launches Statewide Dementia Research Initiative To Tackle Alzheimer’s Crisis (read here)
• Unlocking Secrets of the Brain to Prevent Alzheimer’s (read here)
• New study shines a light on nieces and nephews caring for relatives with dementia (read here)
• Lance has Alzheimer’s. Here’s what he wants you to know (read here)
• The Silent Symptom Most People Don’t Realize Could Be a Dementia Sign, According to Neurologists (read here)
• The Trump administration’s NIH and FDA cuts will negatively impact patients (read here)
• Nurse practitioners step in as geriatrician ranks shrink (read here)
• Moving from dementia risk disclosure to return of individual research results: a bioethics perspective (read here)
• We May Soon Be Telling a Very Different Kind of Story About Dementia (read here)
• 6 Steps To Preserve Brain Health Now To Prevent Dementia As You Age (read here)
• ‘Transformative’: the UK lab working on a way to halt genetic type of dementia (read here)
• To Understand Alzheimer’s Disease, Researchers Turn to Myelin Sheath (read here)
• Early Behavioral Markers of Loss of Financial Capacity (read here)
• Brain cell discovery may explain excessive hunger (read here)
• Trump’s cuts to more than 1700 NIH grants get court hearing (read here)
• An analysis found that dementia caregivers are more likely to report factors that increase their own dementia risk, including smoking, hypertension (read here)
• Researchers Identify How Physical Activity Protects the Brain—Cell by Cell—in Alzheimer’s Disease (read here)
• Study finds seniors are money savvy – until dementia sets in (read here)
• Chaperone-mediated autophagy directs a dual mechanism to balance premature senescence and senolysis to prevent intervertebral disc degeneration  (read here)
• KU researchers publish specialized clinic model to fast-track access to new Alzheimer’s drugs (read here)
• Neural maps used to locate rewards may be disrupted in dementia and heightened in addiction (read here)
• Scientists map the first step in Alzheimer’s protein aggregation and discover clues for future therapies (read here)
• The same technology that enables targeted immunotherapy for cancer could be used to tackle Alzheimer’s (read here)
• Virtual reality adds empathy to dementia care (read here)
• Circulating Monocytes Replace Microglia, Border-Associated Macrophages (read here)
• ‘Low Quality’: Experts Question Usefulness of Quest’s AD-Detect Blood Test (read here)
• Cycling in Midlife Tied to Lower Risk of Dementia (read here)
• How High Is Your Dementia Risk? It Might Depend on Where You Live (read here)
• Compound Produced by Gut Bacteria May Slow Alzheimer’s Progression (read here)
• Diverse tau pathologies in late‐life mood disorders revealed by PET and autopsy assays (read here)
• Regional Differences in Dementia Incidence Among US Veterans (read here)
• Timing and intraindividual variability of daytime napping and Alzheimer’s disease in older adults (read here)
• Can Sealing Burst Membranes Slow Alzheimer’s Disease Pathology? (read here)
• Mayo Clinic researchers validate blood test to diagnose Alzheimer’s disease in outpatient memory clinics (read here)
• Calls for RFK Jr. to Resign Grow Louder (read here)
• Economic Burden of Alzheimer Disease and Related Dementias by Race and Ethnicity (read here)
• The history of Down syndrome–associated Alzheimer’s disease; past, present, and future (read here)
• Navigating Medicaid for Dementia Care: What Families Need to Know (read here)
• Alzheimer’s Gene Therapy Shows Promise in Preserving Cognitive Function (read here)
• UQ study finds dementia risk drops across generations (read here)
• Rosemary has been linked to better memory, lower anxiety and even protection from Alzheimer’s (read here)
• Creatine shows potential to boost cognition in Alzheimer’s patients (read here)
• Novel truncated RNAs from jumping DNA encode reverse transcriptases in aging human brain (read here)
• Do PERK’d Up Astrocytes Slow Amyloid Clearance? (read here)
• Upgrading Brain’s “Dishwasher” May Help Clear Alzheimer’s Toxins (read here)
• Digital screening during primary care visits may lead to earlier dementia detection, care (read here) 
• Alzheimer’s Disease Research Centers Struggle As 1/3 Lose Their Federal Funding (read here)
• Non-coding variation in dementias: mechanisms, insights, and challenges (read here)
• Epilepsy is more common in patients with frontotemporal dementia than expected (read here)
• Forever Chemicals: The Link Between PFAS and Dementia (read here)
• Immune Discovery Reveals Potential Alzheimer’s Solution (read here)
• Molecular Stress in Old Neurons Increases Susceptibility to Neurodegenerative Diseases, Study Finds (read here)
• Detection of emergency department patients at risk of dementia through artificial intelligence (read here)

May, 2025 News

FDA clears first blood test used in diagnosing Alzheimer’s disease

The U.S. Food and Drug Administration (FDA) has cleared for marketing the first in vitro diagnostic device that tests blood to aid in diagnosing Alzheimer’s disease. The Lumipulse G pTau217/ß-Amyloid 1-42 Plasma Ratio is for the early detection of amyloid plaques associated with Alzheimer’s disease in adult patients, aged 55 years and older, exhibiting signs and symptoms of the disease. The test measures two proteins, pTau217 and β-amyloid 1-42, and calculates the numerical ratio; this ratio is correlated to the presence or absence of amyloid plaques in the patient’s brain, reducing the need for a PET scan. Similar FDA-authorized/cleared tests, one from the same company as this new test, are used with cerebrospinal fluid (CSF) samples, which are collected through an invasive lumbar puncture. This new Lumipulse test only requires a simple blood draw, making it less invasive and much easier for patients to access. 

FDA evaluated data from a multi-center clinical study of 499 individual plasma samples from adults who were cognitively impaired. The samples were tested by the Lumipulse G pTau217/ß-Amyloid 1-42 Plasma Ratio and compared with amyloid PET scan or CSF test results. In this clinical study, 91.7% of individuals with Lumipulse G pTau217/ß-Amyloid 1-42 Plasma Ratio positive results had the presence of amyloid plaques by PET scan or CSF test result, and 97.3 % of individuals with negative results had a negative amyloid PET scan or CSF test result. Less than 20% of the 499 patients tested received an indeterminate Lumipulse G pTau217/β-Amyloid 1-42 Plasma Ratio result. These findings indicate that the new blood test can reliably predict the presence or absence of amyloid pathology associated with Alzheimer’s disease at the time of the test in patients who are cognitively impaired. The test is intended for patients presenting at a specialized care setting with signs and symptoms of cognitive decline. The results must be interpreted in conjunction with other patient clinical information.

The risks associated with the Lumipulse G pTau217/ß-Amyloid 1-42 Plasma Ratio are mainly the possibility of false positive and false negative test results. The study found that 91.7 percent of patients who tested positive for the presence of amyloid were confirmed to have the plaques by brain scans or spinal tap procedures, and 97.3 percent of patients with negative results were similarly confirmed not to have the plaques. For more information, see the Fujirebio statement.

Administration releases radical FY 26 budget proposal

The Trump Administration has released its Fiscal Year 2026 (FY 26) Discretionary Budget Request (see pages 9-14 for an overview of proposed changes at the U.S. Department of Health and Human Services). The Administration seeks to cut the Agency for Healthcare Research and Quality by 35%, the Centers for Disease Control and Prevention (CDC) by 39%, National Institutes of Health (NIH) by 40%, the National Science Foundation by 57%. The Administration’s budget proposal perpetuates its previously initiated plans to eliminate vital agencies including the Administration for Community Living and programs to address many of the most consequential health disparities facing people every community nationwide. At the CDC, the Administration budget plans to eliminate entirely the National Center for Chronic Diseases Prevention and Health Promotion, National Center for Environmental Health, National Center for Injury Prevention and Control, Global Health Center, Public Health Preparedness and Response, and the Preventive Health and Human Services Block Grant. The Administration budget also appears to propose a radical reorganization of NIH’s 27 institutes and centers into five new institutes: the National Institute on Body Systems Research; National Institute on Neuroscience and Brain Research (presumably incorporating whatever would remain of the current National Institute on Aging and National Institute of Neurological Disorders and Stroke); National Institute of General Medical Sciences; National Institute of Disability Related Research; and National Institute on Behavioral Health.

For insight regarding the Administration’s proposed cuts, see statements from the Alzheimer’s Association, the Ad Hoc Group for Medical Research, USAging, and the American Brain Coalition. 

Senate Appropriations hearings on biomedical innovation

Senators Susan Collins (R-ME) and Patty Murray (D-WA), Chair and Vice Chair of the Senate Appropriations Committee, have scheduled a two-part full committee hearing series, “Biomedical Research: Keeping America’s Edge in Innovation.”  On April 30, the Senate Appropriations Committee held the first hearing, which featured researchers and stakeholder groups to discuss the importance of U.S. biomedical research for the nation’s health and economy.  A second hearing, which will occur on a later date, will include Administration witnesses testifying on the federal government’s role in investing in and fostering biomedical innovation.

Alzheimer’s Association publishes annual Facts and Figures report and special report on early detection and treatment 

The Alzheimer’s Association has released its 2025 Alzheimer’s Disease Facts and Figures report and executive summary, providing an in-depth look at the latest national statistics on Alzheimer’s incidence, prevalence, mortality, costs of care, and impact on caregivers. Among the findings:

• 7.2 million people aged 65 and older are living with Alzheimer’s disease.
• Total annual costs of caring for people living with Alzheimer’s and other dementias (excluding unpaid care) is projected to be $384 billion in 2025.
• Additionally, nearly 12 million family members and friends provide 19.2 billion hours of unpaid care, valued at an additional $413 billion.
• Deaths due to Alzheimer’s disease more than doubled between 2000 and 2022.

The accompanying special report, American Perspectives on Early Detection of Alzheimer’s Disease in the Era of Treatment, examines awareness and attitudes about Alzheimer’s disease, early detection and diagnosis, tests used to help diagnose Alzheimer’s, and treatments that can slow progression of the disease. The report highlights several key efforts needed to improve early detection, diagnosis and treatment in the current environment, including:

• Supporting research to validate and advance biomarker testing so it can be used widely in clinical settings to detect and diagnose Alzheimer’s disease at the earliest stages.
• Creating clinical practice guidelines to keep pace with rapidly evolving science. The Alzheimer’s Association is preparing guidelines on blood-based biomarker tests (anticipated in 2025), cognitive assessment tools (anticipated in 2025), and clinical implementation of staging criteria and treatment (anticipated in 2026).
• Improving physician-patient conversations about testing, diagnosis and treatment so patients and their caregivers better understand the meaning of test results and the risks and benefits of new treatments. Physicians should have access to training to deliver information in a way that is easy for patients to understand.
• Addressing ethical concerns of early detection by making sure patients understand that tests only measure potential risk and that a formal diagnosis involves cognitive testing and other assessments, including the health professional’s clinical judgment. Counseling patients in advance and making sure that test results are shared by a physician who provides context can help avoid misinterpretation or undue emotional distress.
• Advocating for laws and policies that require insurance coverage of tests, which will speed up diagnosis and provide faster access to treatments that slow disease progression and support better care planning.
• Fostering public health efforts to educate health care providers and the public about the latest research and best practices for risk reduction, diagnosis, treatment and safe, high-quality care.

EBRI releases issue brief on worker attitudes about long term care 

The Employee Benefit Research Institute has released an issue brief, “Employee Perspectives on Long-Term Care,” which examines employees’ awareness of, access to, and perspectives on LTC financing. The issue brief is based on a survey of 2,445 workers, ages 20 through 74, and uncovered emerging insights while reaffirming well-established LTC awareness and preparedness trends. A significant share of employees either said they expect to need long-term care or had caregiving experience, yet awareness, planning, and benefit take-up remained low. Many workers underestimated costs, were unsure how to access services, and mistakenly expected Medicare or Medicaid to cover future care. Employees’ perceptions of their LTC needs were influenced by personal experience and socioeconomic status, highlighting an opportunity for employer-informed, public-private solutions paired with targeted education efforts.

Justice in Aging publishes D-SNP contract toolkit

Justice in Aging (JiA) has published its Dual Eligible Special Needs Plan (D-SNP) State Medicaid Agency Contract Toolkit. The toolkit includes a document addressing eligibility, enrollment and supplemental benefits, and a separate document addressing marketing and communications. Cumulatively, the toolkit provides advocates and State Medicaid Agency policymakers with principles and corresponding template language to develop State Medicaid Agency Contracts (SMACs)  responsive to the needs of the dually eligible populations that they serve. Stakeholders are encouraged to use this tool to advance their priorities, utilizing and tailoring the most appropriate components for their state’s integrated environments. D-SNPs are a type of Medicare Advantage plan designed to serve individuals dually enrolled in Medicare and Medicaid. As enrollment in D-SNPs increases significantly nationwide, these health plans must meet the unique health and social needs of the dually eligible population. JiA plans to add additional documents to the toolkit at a later time.

AAMC releases analysis on impact of NIH grant terminations 

The Association of American Medical Colleges released a new analysis on the impact of National Institutes of Health (NIH) grant terminations on U.S. institutions. To date, U.S. institutions have lost $1.9 billion in funding across 777 terminated NIH grants, including 245 R01 grants and over 100 active clinical trials spanning a broad range of diseases. This data brief provides insight into the nature of terminated grants as institutions grapple with loses in funding and impacts to the pace of scientific progress.

Additional Reads

• Memory cafes offer camaraderie and fun for people with dementia — and their caregivers (read here)
• Alzheimer’s Association launches free app for newly diagnosed dementia patients (read here)
• Can this nasal spray slow down Alzheimer’s? One couple is helping scientists find out (read here)
• Common gene variant doubles dementia risk for men (read here)
• Predicting and preventing Alzheimer’s disease (read here)
• Depression is linked to an increased risk of dementia in both mid and later life, finds a new study (read here)
• Accelerated brain ageing and dementia (read here)
• Astrocytes, the Gatekeepers of Norepinephrine Signaling in the Brain (read here)
• Chronic stress contributes to cognitive decline and dementia risk – 2 healthy-aging experts explain what you can do about it (read here)
• Research untangles role of stress granules in neurodegenerative disease (read here)
• Yale Scientists Uncover Sex Differences in Recalling and Reporting of Family History of Alzheimer’s Disease (read here)
• Sleep aid blocks neurodegeneration in mice (read here)
• Investing in Relationships Builds Resilience for Dementia Caregivers, Study Finds (read here)
• Different versions of APOE protein have varying effect on microglia in Alzheimer’s disease (read here)
• No Mere Microglial Marker, TMEM119 Supports Aβ Phagocytosis (read here)
• Scientists test real-time view of brain’s waste removal (read here)
• New State Laws Require Insurance to Cover Alzheimer’s Biomarker Tests (read here)
• Rural Georgians lack access to Alzheimer’s disease treatment (read here)
• Racial ethnic variations in the cardiometabolic determinants and blood pressure of white matter hyperintensities among females—The HABS‐HD Study (read here)
• Treatment of agitation in dementia – a systematic review (read here)
• New discovery on factors related to Alzheimer’s disease progression (read here)
• How to spot dementia early and reduce your risk by half (read here)
• Sex differences in amyloid PET in a large, real‐world sample from the Imaging Dementia–Evidence for Amyloid Scanning (IDEAS) Study (read here)
• How the GOP’s proposed Medicaid cuts could affect millions of family caregivers (read here)
• The Meaning of Goodbye (read here)
• Breakthroughs in Alzheimer’s prevention (read here)
• The 78th World Health Assembly agrees to extend the Global Action Plan on the Public Health Response to Dementia (read here)
• Mindfulness may be a window into brain health in early Alzheimer’s risk (read here)
• STING deletion protects against amyloid β–induced Alzheimer’s disease pathogenesis (read here)
• The Effect of Influenza Vaccination on Hospitalization and Mortality Among People With Dementia (read here)
• An Expensive Alzheimer’s Lifestyle Plan Offers False Hope, Experts Say (read here)
• Are Artery Exosomes to Blame for Vascular Cognitive Impairment? (read here)
• Potential new treatment for Alzheimer’s disease, other neurodegenerative conditions (read here)
• Trump and GOP’s tax bill would force cuts to Medicare, CBO says (read here)
• Psychological impact of biomarker-assisted diagnosis of Alzheimer’s disease (read here)
• Flipping the script on dementia language (read here)
• Cold sore viral infection implicated in development of Alzheimer’s disease (read here)
• Insulin resistance in the brain may be one of the factors linking Alzheimer’s disease and epilepsy (read here)
• NeuroVoices: Brad Kamitaki, MD, on Aiming to Improve Dementia Care in Asian and Pacific American Communities (read here)
• Candidate drug that boosts protective brain protein in mice has potential to treat Alzheimer’s Disease (read here)
• Incidence and prevalence of dementia among US Medicare beneficiaries, 2015-21: population based study (read here)
• Scientists discover potential new targets for Alzheimer’s drugs (read here)
• Novel algorithms & blood‐based biomarkers: Dementia detection and care transitions for persons living with dementia in the emergency department (read here)
• Brains Run on Good Sleep. Researchers Are Closer to Understanding Why (read here)
• How AI can improve dementia detection (read here)
• Sex differences in prodromal dementia with Lewy bodies using the National Alzheimer’s Coordinating Center data (read here)
• An integrated deep learning model for early and multi-class diagnosis of Alzheimer’s disease from MRI scans (read here)
• How do patients, medical assistants and physicians accept and experience tablet-based cognitive testing by medical assistants in general practice? – A qualitative study (read here)
• In Clinical Use, Most ARIA Occurs in People With Dementia, Not MCI (read here)
• Stress can lead to Alzheimer’s disease in women who are post-menopausal, UT Health San Antonio study finds (read here)
• Study reveals impacts of Alzheimer’s disease on the whole body (read here)
• Trends in Home Health Care Among Traditional Medicare Beneficiaries With or Without Dementia (read here)
• USC researchers develop low-cost blood test for early Alzheimer’s detection (read here)
• Contrary to Clear, Verifiable Facts, Secretary Kennedy Continues to Repeat Harmful Myths About Alzheimer’s and Dementia Research (read here)
• Heavyweight Tau Snuffs Out Hippocampal Bursts (read here)
• The roots of dementia can start in childhood – prevention should be a lifelong goal (read here)
• USC study reveals link between type 2 diabetes and brain health in older adults from various populations (read here)
• Referral Criteria for Specialist Palliative Care for Patients With Dementia (read here)
• Sugar-coated nanotherapy dramatically improves neuron survival in Alzheimer’s model (read here)
• Too much sleep can hurt cognitive performance, especially for those with depression, UT Health San Antonio study finds (read here)
• Loss of smell linked to higher risk of death and dementia (read here)
• Researchers develop a potential new drug for Alzheimer’s and pain treatment (read here)
• Gene variant protects against inherited form of dementia: Researchers (read here)
• Study reveals sedentary behavior is an independent risk factor for Alzheimer’s disease (read here)
• Dementia risk depends on more than lifestyle factors. Overstating this can cause stigma and blame (read here)
• Drug to slow Alzheimer’s well tolerated outside of clinical trial setting (read here)
• Poor heart health increases risk of dementia for Black Americans (read here)
• Is a Cellular ‘Stalled Engine’ Causing Alzheimer’s? (read here)
• Addressing Hearing Loss May Reduce Isolation Among the Elderly (read here)
• Cell death discovery could lead to next-gen drugs for neurodegenerative conditions (read here)
• A scoping review of remote and unsupervised digital cognitive assessments in preclinical Alzheimer’s disease (read here)
• Realizing The Promise Of The GUIDE Model For Dementia Caregivers (read here)
• Wearable sleep recording augmented by artificial intelligence for Alzheimer’s disease screening (read here)
• An Enzyme as Key to Protein Quality (read here)
• Characterization of Research Grant Terminations at the National Institutes of Health (read here)
• Using Negative Emotions for Positive Outcomes in the Dementia Journey (read here)
• Confirmed: Lowering Blood Pressure Cuts Risk of Dementia (read here)
• Researchers Identify Measure of Pulse Rate That Can Predict Faster Cognitive Decline in Older Adults (read here)
• A digital intelligence visualization health monitoring device for Alzheimer’s disease patients based on WBAN technology (read here)
• What a New MRI Meta-Analysis Reveals About AI-Powered Hippocampal Segmentation and Alzheimer’s Disease (read here)
• HIV Drugs Offer ‘Substantial’ Alzheimer’s Protection (read here)
• Hearing loss in middle age may accelerate cognitive decline (read here)
• A systematic analysis for disease burden, risk factors, and trend projection of Alzheimer’s disease and other dementias in China and globally (read here)
• Are you curious? It might help you stay sharp as you age (read here)
• Knowing Your Alzheimer’s Risk May Ease Anxiety but Reduce Motivation for Healthy Habits (read here)
• Emotional response to amyloid beta status disclosure among research participants at high dementia risk (read here)
• EEG-based neurodegenerative disease diagnosis: comparative analysis of conventional methods and deep learning models (read here)
• Alzheimer’s Studies Are Diversifying. Will Scientists Be Able to Finish the Job? (read here)
• Next Act for Amyloid Immunotherapy: Be Safer, Target Tau, Too (read here)
• Most people say they want to know their risk for Alzheimer’s dementia, fewer follow through (read here)
• Alzheimer’s: certain combinations of prescription drugs may slow progression of the disease, says mice study (read here)
• Cutting greenhouse gases will reduce number of deaths from poor air quality (read here)
• Brain networks rewire to compensate for difficulty hearing speech in noisy environments (read here)
• My Care Recipient’s Doctors Don’t Respect My Boundaries (read here)
• Sleep disturbances and disorders in the memory clinic: Self-report, actigraphy, and polysomnography (read here)
• Sex differences in sleep apnea and Alzheimer’s Disease: role of cerebrovascular dysfunction (read here)
• Menopause symptoms may be critical to understanding Alzheimer’s disease risk in women (read here)
• Correlations between agitation and other neuropsychiatric symptoms in each stage of Alzheimer’s disease: A re-analysis of CATIE-AD (read here)
• Researchers develop model that predicts onset of Alzheimer’s disease (read here)
• Black tea and berries could contribute to healthier ageing (read here)
• The Dementia Diagnosis Gap Is Wider Than We Think (read here)
• Loss of WDR23 slows the rate of age-related cognitive decline with elevated amyloid burden (read here)
• Her partner of 45 years developed Alzheimer’s. She’s sharing their story to ‘take away fear’ (read here)
• Down Syndrome and Alzheimer’s: Clinical Trials, Equity, and Patient-Centered Progress (read here)
• Intimate partner violence and cognitive functioning – toward quantifying dementia risk (read here)
• Inflammasome signaling in astrocytes modulates hippocampal plasticity (read here)
• Scientists reel as turmoil roils National Science Foundation (read here)
• Molecular double agent: Protein “Eato” plays surprising role in protecting the brain (read here)
• Thirty years on, our research linking viral infections with Alzheimer’s is finally getting the attention it deserves (read here)
• Triple Trouble: New Knock-in Turbocharges Tauopathy (read here)

April, 2025 News

LEAD Coalition and SWHR submit public comment letter to FDA on study of sex differences

On April 7, 304 LEAD Coalition member organizations and allies sent a joint public comment letter to the U.S. Food and Drug Administration (FDA) regarding its draft guidance for the study of sex differences in the clinical evaluation of medical products (Docket No. FDA-2024-D-4245). The letter, co-led by the Society for Women’s Health Research, supports the draft guidance, urges the FDA to implement a comprehensive framework that considers sex as a fundamental variable throughout drug and device development, approval, and post-market processes across disease. The letter also makes three sets of recommendations. Read the letter here.

LEAD Coalition and allies press for immediate halt to HHS staff and funding cuts

The day after the U.S. Department of Health and Human Services (HHS) initiated deep staff and funding cuts along with agency closures, a diverse group of organizations called for the Administration to halt immediately any further steps that will reverse progress toward effective prevention, treatment, and care for people facing Alzheimer’s disease and related disorders. Organizations that would like to join the updated list of signatories are encouraged to contact LEAD Coalition executive director Ian Kremer as soon as possible.

The full statement and list of signatories follows:

We, the undersigned organizations, are deeply concerned that additional reductions in staff and funding for dementia programs across the Department of Health and Human Services (HHS) will reverse progress toward effective prevention, treatment, and care. Half of all American families have been touched by Alzheimer’s or other forms of dementia, and we have all benefited from the bipartisan commitment to ending this disease.

We count on a strong disease prevention program at the CDC, on research toward cures and care at the NIH, on world-class scientific experts at FDA, on Meals on Wheels and other programs from the Administration for Community Living, and on coordination of all of these efforts through staff at the HHS headquarters. The agencies affected by these cuts are at the heart of the progress America has made toward better understanding how to prevent and treat these devastating diseases. Cuts made without a clear, public plan to continue these efforts will have enduring and tragic consequences for millions of families, increase the economic burden on our nation and on families caring for the millions of Americans with these diseases, and could derail progress toward the goals established under the National Alzheimer’s Project Act and its reauthorization (passed unanimously by Congress in 2024).

We commend the bipartisan calls for greater transparency in how these decisions are being made and urge the Administration to immediately halt any further cuts. It is essential to first engage with stakeholders—patients, caregivers, researchers, and organizations like us—to ensure we protect the progress we’ve made and chart a responsible path forward.

Fiscal efficiency must not come at the expense of patients, caregivers, or the research that offers hope for a cure. We stand ready to work in partnership to find solutions that uphold both public health and financial stewardship.

Signed,

Alliance for Aging Research
American Society on Aging
Association of Population Centers
Alzheimer’s Association
Alzheimer’s Impact Movement
Alzheimer’s Los Angeles
Alzheimer’s Orange County
Alzheimer’s San Diego
Association for Frontotemporal Degeneration
Benjamin Rose Institute on Aging
BrightFocus Foundation
Caregiver Action Network
CaringKind
Family Caregiver Alliance
Gerontological Advanced Practice Nurses Association
Gerontological Society of America
Hilarity for Charity
International Association for Indigenous Aging
Justice in Aging
The John A. Hartford Foundation
LEAD Coalition (Leaders Engaged on Alzheimer’s Disease)
LuMind IDSC Foundation
Medicare Rights Center
National Alliance for Caregiving
National Association of Social Workers
National Down Syndrome Society
National Indian Council on Aging
The National Minority Quality Forum
Ohio Council for Cognitive Health
UsAgainstAlzheimer’s

HHS issues information on canceled grants

HHS continues to issue information on terminated awards (see spreadsheet) through the Department’s publicly available Tracking Accountability in Government Grants System (TAGGS) website. According to HHS, the spreadsheet of terminated awards, which includes NIH grants, is aligned with the presidential memo on “Radical Transparency About Wasteful Spending.” The spreadsheet of terminated awards includes information on the awarding office, award number, recipient name, date terminated, total award amount for the budget period, anticipated amount canceled as a result of the termination, and award title.

CMS issues 2026 MA, Part D payment policy and redesign program instructions

The Centers for Medicare & Medicaid Services (CMS) has finalized the 2026 Medicare Advantage (MA) and Part D updates to payment factors. For MA plans, CMS projects an average increase in payment rates of 5.06%, representing a $25 billion increase in payments. CMS attributes the increase to the growth in Medicare Fee-for-Service (FFS) per capita costs. CMS also released the final 2026 Part D Redesign Program Instructions, which provide guidance regarding implementing the Inflation Reduction Act of 2022’s (IRA) changes to the defined standard Part D drug benefit structure. The key changes include the 2026 annual out-of-pocket (OOP) threshold of $2,100, guidance on the successor regulation exception to the IRA’s formulary inclusion requirement for selected drugs, and the revised simplified determination methodology for creditable drug coverage, among other guidance. For additional details, read the CMS fact sheet.

FDA announces plan to phase out animal testing requirement for monoclonal antibodies and other drugs

The U.S. Food and Drug Administration (FDA) has announced plans to replace animal testing in the development of monoclonal antibody therapies and other drugs. The FDA’s animal testing requirement will be reduced, refined, or potentially replaced using a range of approaches, including AI-based computational models of toxicity and cell lines and organoid toxicity testing in a laboratory setting (so-called New Approach Methodologies or NAMs data). Implementation will begin immediately for investigational new drug (IND) applications, where inclusion of NAMs data is encouraged, and is outlined in the FDA’s new Roadmap to Reducing Animal Testing in Preclinical Safety Studies. To make determinations of efficacy, the agency will begin use pre-existing, real-world safety data from other countries, with comparable regulatory standards, where the drug has been studied in humans. The FDA and federal partners will host a public workshop later this year to discuss the roadmap and gather stakeholder input on its implementation. Over the coming year, the FDA aims to launch a pilot program allowing select monoclonal antibody developers to use a primarily non-animal-based testing strategy, under close FDA consultation. Findings from an accompanying pilot study will inform broader policy changes and guidance updates expected to roll out in phases.

Over 500 organizations recommend $51.3 billion for NIH

The LEAD Coalition has joined more than 500 organizations in supporting the Ad Hoc Group for Medical Research letter urging Congress to provide at least $51.3 billion for the National Institutes of Health (NIH) for fiscal year (FY) 2026, in addition to support for the Advanced Research Projects Agency for Health (ARPA-H). Specifically, the recommendation for NIH would represent a $4.222 billion or 9.0% increase over the final FY 2025 funding level (due to the full-year Continuing Resolution, the FY 2025 level represented no increase for NIH from FY 2024 appropriations). The recommendation notes, “Robust support for medical research makes Americans healthier. Patients across the country — from urban centers to rural communities — benefit from medical research supported by the NIH, which serves as the foundation for nearly every preventive intervention, diagnostic, treatment, and cure in practice today.” In addition, the Ad Hoc Group shared an accompanying question and answer (Q&A) document for the FY 2026 recommendation. The Q&A document provides an overview of the justification for the FY 2026 recommendation and messages on the importance of NIH investment for driving economic growth and securing U.S. global leadership. It also highlights the harmful impacts of funding delays and disruptions, among other issues.

LEAD Coalition welcomes new member organizations

The LEAD Coalition recently welcomed the Advanced Medical Technology Association® (AdvaMed®) and Cognito Therapeutics as its newest member organizations.

AdvaMed is a trade association that leads the effort to advance medical technology in order to achieve healthier lives around the world. AdvaMed®’s more than 500 members range from the largest to the smallest medical technology innovators and companies. The Association acts as the common voice for companies producing medical devices, diagnostic products and digital health technologies. AdvaMed® promotes competitive policies that foster the highest ethical standards, appropriate reimbursement, and access to international markets. 

Cognito Therapeutics is a pioneer in non-invasive neuromodulation to treat neurodegenerative diseases and improve human cognitive performance. Cognito has received FDA Breakthrough Device Designation for the treatment of Alzheimer’s disease. The company has completed multiple clinical studies, including the Phase 2 OVERTURE study, demonstrating its investigational therapeutic has the potential to safely slow or stop cognitive decline and loss of brain volume in Alzheimer’s disease. Cognito currently is recruiting for its pivotal HOPE study. The company’s technology, used in over 40,000 patient sessions, was based on pioneering optogenetics research by scientific co-founders Professors Li-Huei Tsai and Ed Boyden at MIT. 

District court strikes down key components of CMS nursing home staffing rule

The U.S. District Court for the Northern District of Texas has vacated key provisions of the U.S. Centers for Medicare and Medicaid Services (CMS) final rule establishing minimum staffing requirements for long-term care facilities. The rule, scheduled to take effect in 2026, would have required an on-site registered nurse (RN) 24 hours a day, a minimum staffing per resident of 0.55 hours per day for RNs, 2.45 hours per day for nursing assistants, and 3.48 hours per day for total nurse staffing. The court held that when Congress has spoken clearly — such as by requiring only eight hours per day of RN coverage — an agency cannot replace that standard with a broader mandate under general regulatory authority. The court also found that CMS failed to meet statutory requirements to tailor staffing requirements to the needs of each facility’s resident population. The 3.48 hours per resident per day (HPRD) formula, the court held, unlawfully substituted a one-size-fits-all benchmark in place of individualized assessment, contrary to the governing statute. The court left in place some provisions such as Medicaid transparency rules. Read the court’s ruling.

District court vacates FDA final rule on laboratory developed tests

The U.S. District Court for Eastern District of Texas has vacated the U.S. Food and Drug Administration (FDA) final rule regulating laboratory-developed tests (LDTs) as medical devices under the Food, Drug, and Cosmetic Act (FDCA). The court ruled that LDTs are professional services regulated by the Centers for Medicare and Medicaid Services (CMS) under the Clinical Laboratory Improvement Amendments (CLIA), not tangible products under FDA’s jurisdiction. This decision relies on the precedent set by the Supreme Court in Loper Bright Enterprises v. Raimondo. For now, the ruling has nationwide effect, but future congressional action may affect such decisions. Read the court’s ruling. For additional details and analysis, click here.

Additional Reads

• Scientists Uncover How Tau Protein Weakens the Brain’s Vascular Defenses in Alzheimer’s Disease (read here)
• The Risks and Genetics of Alzheimer’s Disease (read here)
• Alzheimer’s Association calls on doctors to use newer early diagnostic testing due to improvements (read here)
• Signs of dementia or normal forgetfulness? How to tell the difference (read here)
• How Public Supported Studies Bring This Researcher and Patient Closer to a Cure for Alzheimer’s (read here)
• ‘Smart insoles’ could help diagnose dementia, other health problems (read here)
• Association between high plasma p-tau181 level and gait changes in patients with mild cognitive impairment (read here)
• Trontinemab Fuels Hope for Brain Shuttle Lift-Off (read here)
• AI Helps Unravel a Cause of Alzheimer’s Disease and Identify a Therapeutic Candidate (read here)
• Rapidly Progressive Dementia: Key Factors That May Aid Diagnosis (read here)
• An Alzheimer’s study in South America offered tremendous insights. Then it was cut. (read here)
• Brain’s ‘blue spot’ key to healthy aging, early Alzheimer’s detection (read here) 
• Even Light Exercise Could Help Slow Cognitive Decline in People at Risk of Alzheimer’s (read here)
• Dementia care: are terms of endearment like ‘sweetheart’ comforting or condescending? (read here)
• Study Shows Higher Fall Risk for Older Adults with Alzheimer’s Compared to Mild Cognitive Impairment (read here)
• Empathy might be retained in Alzheimer’s disease (read here)
• There Are Ways to Make Life Easier for Patients with Alzheimer’s Disease and Their Caregivers (read here)
• The Cost of Dementia in 2025 (read here)
• New clues as to why drugs are effective for Alzheimer’s disease (read here)
• Isolated older adults find joy and connection through virtual singing. Those with neurocognitive disorders like dementia especially benefit. (read here)
• New Research Lays Groundwork for Early Detection of Alzheimer’s Disease (read here)
• Sex Hormones Are Brain Hormones. What Does This Mean for Treating Brain Diseases? (read here)
• A New Take on How Tau Spreads in the Brain — and Speeds Up Alzheimer’s (read here)
• New NIH grant rules override the Civil Rights Act of 1964, barring recipients from DEI activities (read here)
• Intensive lowering of blood pressure tied to lower dementia risk (read here)
• Engineered microglia show promise for treating Alzheimer’s, other brain diseases (read here)
• UT Health San Antonio-led discovery means IV medication could be taken orally for range of cancer, Alzheimer’s treatments (read here)
• When They Don’t Recognize You Anymore (read here)
• Global trends in prevalence, disability adjusted life years, and risk factors for early onset dementia from 1990 to 2021 (read here)
• Tau PET as Progression Marker: It’s the Spread, Not the Brightness (read here)
• Lifesaving Alzheimer’s Research Delayed by Trump Funding Cuts (read here)
• Drug Development Is Slowing Down After Cuts at the FDA (read here)
• Population Attributable Fraction of Incident Dementia Associated With Hearing Loss (read here)
• Five reasons why young-onset dementia is often missed (read here)
• Reduced Deep and REM Sleep Could be Early Markers of Alzheimer’s (read here)
• Modulating the Brain’s Immune System May Curb Damage in Alzheimer’s (read here)
• Moving Target: New Biology Casts TREM2 as a Shifty Mark (read here)
• Mouse model reveals how a mutation protects against Alzheimer’s disease (read here)
• Integrative approach reveals promising candidates for AD risk factors or targets for treatments (read here)
• Understanding the Emotional Toll of Alzheimer’s Disease (read here)
• Women, minorities fired in purge of NIH science review boards (read here)
• Why women experience Alzheimer’s disease differently from men (read here)
• Menopause at an Early Age Can Exacerbate Cognitive Decline (read here)
• Towards Gene-Targeting Drugs Capable of Targeting Brain Diseases (read here)
• Association of Nonmodifiable Risk Factors With Alzheimer Disease Blood Biomarkers in Community-Dwelling Adults in the ESTHER Study (read here)
• Hereditary Alzheimer’s: Blood Marker for Defective Neuronal Connections Rises Early (read here)
• Popular diabetes medications may protect against Alzheimer’s disease, UF researchers find (read here)
• Leqembi® (lecanemab) is the First Medicine that Slows Progression of Early Alzheimer’s Disease to be Authorized in the European Union (read here)
• NIH terminates $13 million grant on dementia risks for sole nationally representative mental health sample of Black Americans (read here)
• Cognitively Impaired Older Drivers Are Less Likely to Cause a Crash When Accompanied by a Passenger (read here)
• Global telemedicine therapy for dementia shows benefit (read here)
• AI tool unlocks long-standing biomedical mystery behind Alzheimer’s, Parkinson’s (read here)
• As dementia rates increase, experts warn hospital emergency rooms are underprepared (read here)
• Benefits and Risks of New Tests for Alzheimer’s Disease (read here)
• It Takes Tau to Tangle: Is Faster Buildup Driving Women’s Alzheimer’s Risk? (read here)
• Scientists Identify Key Enzyme in Alzheimer’s Disease That Links Brain Inflammation to Memory Loss (read here)
• Digital Dementia: Does Technology Use by ‘Digital Pioneers’ Correlate to Cognitive Decline? (read here)
• Risk of dementia in individuals with emergency department visits or hospitalizations due to cannabis (read here)
• One of the country’s leading Alzheimer’s projects is in jeopardy (read here)
• Experiences and perceptions of sexism in dementia research careers: A global cross-sectional survey (read here)
• New Partnership Forms to Harness AI for Alzheimer’s Research (read here)
• Atrophy trajectories in Alzheimer’s disease: how sex matters (read here)
• First Participant With Down syndrome (DS) Dosed in Landmark Phase 1b HERO Study For the Potential treatment of Alzheimer’s disease (AD) (read here)
• More opportunities to test for Alzheimer’s using new analytical method (read here)
• Journey to Diagnosis: Real-Life, Personal Stories of Navigating Cognitive Decline (read here)
• A gene guiding brain cell growth may regulate Alzheimer’s plaque size and toxicity (read here)
• Can Stem Cells Address Behavioral Symptoms in Alzheimer’s Patients? (read here)
• Alzheimer’s Association expands PSA campaign about early dementia signs to focus on Black Americans (read here)
• Association Between Alcohol Consumption, Cognitive Abilities, and Neuropathologic Changes (read here)
• Potential Alzheimer’s Disease Therapeutic Target Identified in Brain Immune Cells (read here)
• Students lead breakthrough study on diabetes drugs and dementia risk (read here)
• Ohio State study reveals new insights into neurodegeneration (read here)
• Scientists complete largest wiring diagram and functional map of the brain to date (read here)
• Plasma phospho-tau217 for Alzheimer’s disease diagnosis in primary and secondary care using a fully automated platform (read here)
• Discovery of Mitochondrial Protein Opens Path to Therapeutic Advances for Heart and Alzheimer’s Disease (read here)
• ALS drug effectively treats Alzheimer’s disease in new animal study (read here)
• Eye health linked to dementia risk (read here)
• Redefining Value in Care for Alzheimer’s Disease and Dementia (read here)
• Personalized Alzheimer’s Risk Reduction Software Improves Calculated Alzheimer’s Risk: A Digital, Decentralized, Randomized Controlled Trial (P1-3.004) (read here)
• PolyU scholar unveils research on long-term effects of obesity on brain and cognitive health (read here)
• States Propose Bills to Make Private Insurers Cover Approved Alzheimer’s Drugs, Diagnostics (read here)
• Exposure to air pollution may harm brain health of older adults (read here)
• Finding a new drug target to treat Frontotemporal Lobar Degeneration (read here)
• Linking blood flow and brain health (read here)
• Confronting Alzheimer’s Disease: The Changing Biomarker and Treatment Landscape (read here)
• Biotech start-ups struggle as Trump throttles NIH funding (read here)
• Gamma Sensory Stimulation Preserves Corpus Callosum, P-Tau 217 and 181 Correlate With Clinical Outcomes, Lecanemab ARIA Risk Highest in Elevated Aß42/Total Tau Ratios (read here)
• FDA will consolidate to five ‘shared services offices,’ according to memo to Hill staffers (read here)
• Alzheimer’s research was never a waste of time. Let’s not lose progress. (read here)
• Do Synaptic Markers Foreshadow Cognitive Decline? (read here)
• What Can We Learn About Dementia from LGBTQ+ Brain Health Research? (read here)
• Following layoffs, the future of FDA’s user fee programs is in extreme jeopardy (read here)
• America’s Brightest Minds Will Walk Away (read here)
• Key differences between visual- and memory-led Alzheimer’s discovered (read here)
• Cognitive decline comes sooner for people with heart failure (read here)
• Mass General Brigham Researchers Reveal 17 Modifiable Risk Factors Shared by Stroke, Dementia, and Late-Life Depression (read here)
• Unlocking memories of the past with the soundtrack of a lifetime (read here)
• Researchers Identify New Targeted Approach to Protect Neurons Against Degeneration (read here)
• Religious stress coping is associated with lower entorhinal tau pathology and better memory performance in autosomal dominant Alzheimer’s disease (read here)
• Blood test may rule out future dementia risk (read here)
• Study strengthens link between shingles vaccine and lower dementia risk (read here)
• People with dementia could stay in the workplace longer – with the right tech (read here)
• AI effectively predicts dementia risk in American Indian/Alaska Native elders (read here)
• Blood test may rule out future dementia risk (read here)
• Study strengthens link between shingles vaccine and lower dementia risk (read here)
• People with dementia could stay in the workplace longer – with the right tech (read here)
• AI effectively predicts dementia risk in American Indian/Alaska Native elders (read here)
• Remote Screening for Early Alzheimer Holds Promise Amid Key Challenges (read here)
• Low LDL cholesterol levels linked to reduced risk of dementia (read here)
• Weight training protects older people’s brains against dementia, study suggests (read here)
• UB researchers develop a new compound with therapeutic potential against Alzheimer’s disease (read here)
• ‘One of the darkest days’: NIH purges agency leadership amid mass layoffs (read here)
• UCalgary researchers find important clues contributing to Alzheimer’s disease (read here)
• University of Minnesota Medical School study identifies key heart marker predicting ischemic stroke and dementia (read here)

March, 2025 News

HHS announces radical reorganization with deep staff cuts and closing of agencies

The U.S. Department of Health and Human Services (HHS) has announced a dramatic restructuring in accordance with President Trump’s Executive Order, “Implementing the President’s ‘Department of Government Efficiency’ Workforce Optimization Initiative.” According to HHS, the decision will include cutting approximately 10,000 full-time employees (when combined with HHS’ other efforts, the restructuring will eliminate roughly 20,000 full-time employees). The U.S. Food and Drug Administration (FDA) is expected to lose 3.500 people, the Centers for Disease Control and Prevention will lose 2,400 people, the National Institutes of Health will lose 1,200 people, and the Centers for Medicare and Medicaid Services (CMS) will lose 300 people.

The plan will collapse 28 HHS divisions into 15 new divisions and will centralize core functions such as Human Resources, Information Technology, Procurement, External Affairs, and Policy. Regional offices will be reduced from 10 to five. Among the specific contents of the restructuring plan that have been announced so far are as follows:

• Creation of the Administration for a Healthy America (AHA), which will combine multiple agencies — the Office of the Assistant Secretary for Health (OASH), Health Resources and Services Administration (HRSA), Substance Abuse and Mental Health Services Administration (SAMHSA), Agency for Toxic Substances and Disease Registry (ATSDR), and National Institute for Occupational Safety and Health (NIOSH) — into a new, unified entity. 
• HHS will create a new Assistant Secretary for Enforcement to oversee the Departmental Appeals Board (DAB), Office of Medicare Hearings and Appeals (OMHA), and Office for Civil Rights (OCR).
• HHS will merge the Assistant Secretary for Planning and Evaluation (ASPE) with the Agency for Healthcare Research and Quality (AHRQ) to create the Office of Strategy.
• HHS will close the Administration for Community Living (ACL) and move programs that support older adults and people with disabilities into other HHS agencies, including the Administration for Children and Families (ACF), ASPE, and the Centers for Medicare and Medicaid Services (CMS). 

For analysis, see this FAQ about the staffing cuts at FDA, this Forbes article about the impact on ACL, and statements from the National Alliance for Caregiving, the Medicare Rights Center, and the American Society on Aging.

NIH releases plan to centralize peer review process

The National Institutes of Health (NIH) recently released plans to centralize peer review of all applications for grants, cooperative agreements and research and development contracts within the agency’s Center for Scientific Review (CSR). The proposed centralization plan would apply to the first stage of the review process and the consolidation would transition study sections that take place across NIH Institutes and Centers (ICs) to CSR for all first-level review. Such removal of significant authority from individual ICs risks sacrificing the benefits derived from their specialized expertise at a critical early juncture. The NIH’s proposal is now under review with implementation pending external review, including by the Department of Health and Human Services and the Office of Management and Budget, providing Congress with a 15-day notification period, and issuing a Federal Register notice.

NIH updates categorization spending website

The National Institutes of Health (NIH) has issued information on recent updates to the Research, Condition, and Disease Categorization (RCDC) categorical spending webpage. According to NIH, “The new visual and contextual changes aim to improved usability and understanding of the RCDC categorization process. In particular, the categorical spending page was reorganized so data are more prominent and easier to navigate.” The RCDC was launched in 2008 as a tool within the Research Portfolio Online Reporting Tools (RePORT) and provides estimates of the annual support level for more than 300 research, condition, and disease categories based on grants, contracts, and other funding mechanisms used across the NIH, as well as disease burden data published by the Centers for Disease Control and Prevention (CDC) National Center for Health Statistics.

CMS rescinds guidance on health-related social needs

The Centers for Medicare & Medicaid Services (CMS) has released a Center Informational Bulletin (CIB) rescinding guidance related to coverage of health-related social needs (HRSN). The bulletin rescinds two CIBs published in November 2023 and December 2024, both titled “Coverage of Services and Supports to Address Health-Related Social Needs in Medicaid and the Children’s Health Insurance Program,” as well as an accompanying document from November 2023 known as the “Framework of Coverage of HSRN Services in Medicaid and CHIP.” CMS has indicated that approved 1115 waivers and 1915(c) waivers that include HRSN provisions will not be affected. State applications to cover these services and supports will be considered on a case-by-case basis.

HHS OIG issues report on assessing nursing home emergency preparedness programs

The U.S. Department of Health and Human Services (HHS) Office of Inspector General (OIG) has issued the report “State Survey Agencies Need Additional Guidance to Assess Nursing Home Emergency Preparedness Programs” (full report and report highlights). In response to nursing home failures, such as resident deaths during disasters and emergencies, the HHS OIG assessed State survey agencies’ processes for overseeing nursing home emergency preparedness in accordance with the Centers for Medicare & Medicaid Services (CMS) Requirements for Participation. The report found that a quarter of State survey agencies reported challenges with surveyor emergency preparedness expertise; however, almost half of State survey agencies reported successes beyond CMS guidance. The report recommends that CMS provide surveyors with instructions on how to assess the contents of nursing home emergency preparedness documentation and issue guidance that encourages State survey agencies to collaborate and share information.

LEAD Coalition welcomes new member organizations

The LEAD Coalition recently welcomed the University of Chicago Healthy Aging & Alzheimer’s Research Care (HAARC) Center and the National Council of Dementia Minds (NCDM) as its newest member organizations.

The HAARC Center is a leading hub for aging and dementia research, focused on resilience, resistance, and promoting longer health spans. It conducts multidisciplinary studies, applies community-engaged research, and develops evidence-based interventions to advance care and knowledge. The HAARC Center leads the international SuperAging Research Initiative, studying adults aged 80+ with exceptional memory to uncover factors supporting cognitive resilience. The HAARC Center also addresses atypical dementias like Primary Progressive Aphasia (PPA) through the Communication Bridge Research Program, the first efficacious intervention which enhances communication and care strategies. The HAARC Center utilizes precision, cognitive, neuroimaging, and biomarker research to improve understanding of neurodegenerative diseases. The HAARC Center enrolls participants in its research registry and collaborates on large multisite initiatives, including serving as a Diversity Hub Site for the Alzheimer’s Disease Neuroimaging Initiative (ADNI). 

NCDM is proud to be the first national 501(c)(3) nonprofit organization founded and governed by persons living with dementia. NCDM includes individuals with all types of mild cognitive impairment or dementia, including younger-onset dementias. NCDM challenges societal stigmas along with offering hope-filled strategies and resources to support living well with dementia. NCDM’s mission comes to life through the following four program areas:

• Dementia Minds Groups. NCDM develops and sustains peer support groups that empower individuals with dementia to connect, share experiences, and support one another. NCDM also provides opportunities for people with dementia or mild cognitive impairment to come together in larger settings through NCDM “Meetings of the Minds.” 
• Educational Opportunities. NCDM offers interactive virtual programming tailored to audiences of individuals living with dementia, care partners, service providers, and other stakeholders. 
• Resources. NCDM develops and shares practical resources to enhance daily life and address real-world challenges that people with dementia face. 
• Lived Experience Expertise. Dedicated to ensuring that people with dementia have a powerful voice in both personal and public conversations, NCDM participates in co-researcher opportunities to impart its lived experience expertise.

Global CEOi launches Alzheimer’s blood test performance database for clinicians

The Global CEO Initiative on Alzheimer’s Disease (CEOi) has launched the Alzheimer’s Blood Test Performance Database, a first-of-its-kind resource designed to support clinicians and other healthcare decision makers in evaluating the performance of blood tests for Alzheimer’s disease. With a growing number of Alzheimer’s blood tests becoming available, clinicians need a simple way to assess which tools meet clinical standards. The Alzheimer’s Blood Test Performance Database addresses this critical gap – providing a clear, centralized view of how each test compares against performance standards recommended by CEOi’s expert Blood Biomarker (BBM) Workgroup. The database is built on data voluntarily submitted by companies offering Alzheimer’s blood tests in the U.S. All submissions follow a standardized format and are independently quality checked for consistency, clarity, and scientific rigor. The database will be updated regularly to ensure healthcare providers have the most current information on test performance. 

NAC releases policy brief on Medicaid and family caregiving

The National Alliance for Caregiving has released “Policy Brief: The Role of Medicaid in Supporting Family Caregivers.” The policy brief discusses how Medicaid has emerged as the primary source of support for family caregivers which enables individuals to receive care in their homes rather than nursing facilities. Medicaid provides direct financial support to family caregivers and supplemental services like respite care, training, and counseling to help families avoid or delay institutional care. The National Strategy to Support Family Caregivers recognizes Medicaid’s central role in supporting family caregivers. This policy brief reviews how policy affects family caregivers’ ability to maintain their own health and provide care for the people in their lives. Read the policy brief to learn more.

Among older women, hormone therapy linked to tau accumulation

Research published in Science Advances shows faster accumulation of tau—a key indicator of Alzheimer’s disease—in the brains of women over the age of 70 who took menopausal hormone therapy (HT) more than a decade before. While the researchers did not see a significant difference in amyloid beta accumulation, they did find a significant difference in how fast regional tau accumulated in the brains of women over the age of 70, with women who had taken HT showing faster tau accumulation in specific regions of the brain. This difference was not seen in women younger than 70. The study compared brain imaging from 73 women who had used hormone therapy an average of 14 years prior and 73 age-matched women who had not. Participants were between ages 51 and 89 at the beginning of the study. Participants had PET scans for amyloid beta over a mean 4.5-year period and for tau over a 3.5-year period. The authors note that they cannot definitively conclude whether the influence of chronological age is due to changes in guidelines on HT prescribing or simply due to a higher tau-PET signal typically observed at more advanced ages. Current clinical guidance is that HT should be initiated within 10 years following a woman’s age at menopause to avoid adverse effects.

Consumer digital devices can be used to assess brain health

A study published in Nature Medicine has found widely used consumer grade digital devices, such as the iPhone and Apple Watch, can be effective in assessing an individual’s cognitive health without requiring in-person visits or supervision. This is the largest cognition study of its kind to demonstrate that self-administered cognitive assessments can be leveraged to accurately assess cognitive health over time. The study enrolled more than 23,000 adults represented from across the U.S. who used an iPhone. Enrollment was broad and included individuals (from ages 21 to 86) raging from cognitively healthy to diagnosed with mild cognitive impairment. Of the participants enrolled, over 90% were able to adhere to the study protocol for at least one year, which included using an iPhone and wearing an Apple Watch on a daily basis, as well as taking cognitive assessments on their own and completing questionnaires on a monthly and quarterly basis. The researchers also found that self-administered digital cognitive assessments were reliable and clinically valid across the broad populations enrolled. The ability to accurately measure cognitive health remotely could be the first step in providing individuals with the information they need to take action on their brain health.

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February, 2025 News

NIH ADRD Summit postponed and transitioned to virtual-only format

Due to unforeseen circumstances, the NIH Alzheimer’s Disease Related Disorders (ADRD) Summit 2025 is being postponed; the tentative dates for the Summit now are April 29 and April 30. The Summit will be held exclusively as a virtual meeting. To register, click here. For assistance with your registration, please contact Rachael Heiner.

The ADRD Summits complement the Alzheimer’s Disease Research Summits, and the National Research Summits on Care, Services, and Supports. These summits are coordinated planning efforts that respond to the National Plan to Address Alzheimer’s Disease, first released in 2012 and now updated annually. The conferences set national research recommendations that reflect critical scientific priorities for research on Alzheimer’s Disease and Alzheimer’s Disease-Related Dementias (AD/ADRD). 

The ADRD Summit 2025 will address research priorities for Alzheimer’s disease-related dementias, including frontotemporal degeneration, Lewy body, multiple etiology dementias, and vascular contributions to cognitive impairment and dementia, along with broader cross-cutting areas, including health equity. Significant portions of the Summit will be dedicated to public comment on the updated draft research recommendations. The Summit will conclude with a review of the highlights from the sessions and summary of the major themes from the public comments. Based on input received at the Summit, the recommendations will be revised and presented to the National Institute of Neurological Disorders and Stroke NINDS Council for approval. Approved recommendations will become research milestones in the National Plan to Address Alzheimer’s Disease.

House Labor-H Appropriations Subcommittee issues notice on public witness testimony

The House Labor, Health and Human Services, Education, and Related Agencies Appropriations Subcommittee (Labor-H), which has jurisdiction over National Institutes of Health (NIH) funding, has issued notices that it will hold a Members Day Hearing on March 5 and will hold a Public Witness Hearing on April 9 to discuss fiscal year (FY) 2026 appropriations. The Public Witness Hearing deadlines to submit requests to testify and/or offer written testimony for the record are March 21 and April 9, respectively.

In a related development, House Appropriations Committee Chair Tom Cole (R-OK) has issued a statement on continued FY 2025 appropriations negotiations, noting that top congressional appropriators “continue to work to move topline discussions and cooperation forward. Progress has been made since the start of the negotiations, and we remain engaged in good-faith discussions with the Senate and minority.” The statement followed a series of letters sent by Chair Cole to leadership of House authorizing committees urging coordination and a review of legislative priorities for the 119th Congress.

Paid Family and Medical Leave Tax Credit Extension and Enhancement Act re-introduced in Congress

The Paid Family and Medical Leave Tax Credit Extension and Enhancement Act (see Senate text and summary) has been re-introduced by U.S. Senators Deb Fischer (R-NE) and Angus King (I-ME) and Representatives Rep. Marie Gluesenkamp Perez (D-WA), Randy Feenstra (R-IA) and Stephanie Bice (R-OK). The legislation would expand and reform the IRS Section 45S Employer Credit for Paid Family and Medical Leave (PFML)  – which was a two-year tax credit authorized by the Tax Cuts and Jobs Act of 2017 and later extended by Congress through the end of 2025 – for employers that voluntarily offer up to 12 weeks of PFML. The legislation builds on the 2017 law to better serve working families and hourly workers. It also provides additional ways for businesses to qualify for the paid leave tax credit, such as paying for PFML insurance products, and requires greater outreach efforts to raise awareness about the credit.

The legislation seeks to improve the 45S tax credit available to small businesses that provide PFML, expanding it to include PFML provided through an insurance company or in a state with a mandate. The legislation would reduce the minimum time a worker must be employed to claim the credit from one year to 6 months to more quickly support young employees who are starting their families and provide resources and outreach to help guide and educate small businesses about the use of the credit. According to the Bureau of Labor Statistics, more than 41 percent of employees at businesses with more than 500 employees have access to PFML while just 20 percent of workers at businesses with fewer than 99 employees have access to PFML.

HHS ASPE forecasts savings from Medicare Part D out-of-pocket cap

On January 13, the U.S. Department of Health and Human Services (HHS) Assistant Secretary for Planning and Evaluation (ASPE) Office of Health Policy published a report showing that about 11 million Medicare Part D enrollees are expected to reach the $2,000 out-of-pocket cap in 2025. These enrollees are projected to save $7.2 billion annually, for an average savings of $600 per enrollee. Average out-of-pocket savings are projected to be even higher for enrollees who do not receive financial assistance for their prescription drug costs — about $1,100 per enrollee. The report also contains state-based data showing the conditions and specific drugs with the highest Part D spending. For additional information, click here.

Justice in Aging provides Medicaid advocacy resources

As Congress considers proposals to restrict or cap federal Medicaid funding to states, Justice in Aging has developed resources to help advocates understand how these cuts would harm older adults. Medicaid is essential for people living with dementia, covering critical services that private insurance and Medicare do not cover, including long-term services and supports (LTSS), transportation, and respite for caregivers. Capping federal Medicaid spending would be devastating for individuals with dementia and their families, forcing states to restrict eligibility, cut benefits, and lower provider reimbursement—ultimately resulting in decreased enrollment and service access for people in need. Justice in Aging’s materials equip advocates with valuable information to defend Medicaid:

• Cutting Medicaid Harms Older Adults No Matter How It’s Sliced –This fact sheet provides an overview of the proposals Congress is considering and how each would cut care for older adults.
• How Medicaid Funding Caps Would Harm Older Adults – This issue brief outlines how proposals to cut Medicaid would shift financial liability to states, forcing states to slash services and enrollment, highlighting how Medicaid funding caps would harm the millions of older adults who rely on the program.
• Work Requirements Would Cut Medicaid Funding for Older Adults – This fact sheet provides data and stories to explain how — even though most people targeted by work requirements should remain eligible — bureaucratic hurdles associated with the policy will take away coverage from people already working, older adults who are retired or having difficulty finding work, people with disabilities, and family caregivers.
• Protecting Medicaid for Older Adults: What’s at Risk & What Advocates Can Do – This recorded webinar provides an overview of potential Medicaid cuts, how Congress can fast-track these changes, and key advocacy strategies and resources to help advocates mobilize and defend Medicaid in their states and communities.

FDA issues 2024 Drug Safety Priorities report

The U.S. Food and Drug Administration (FDA) Center for Drug Evaluation and Research (CDER) has released the Drug Safety Priorities Fiscal Year 2024 report. The report underscore CDER’s ongoing commitment to promote and protect public health by addressing potential medication risks and enhancing safety measures. The report highlights continuing initiatives to combat the overdose crisis, including the launch of a new campaign offering free training, mentoring, and resources for health care professionals prescribing medications for opioid use disorder. The report details efforts to prevent medication shortages and transparently relay information about recalls and medication safety information to the public. It also features the CDER’s robust safety monitoring program through Sentinel, work to enhance the quality of compounded medications, and partnerships to reduce medication-related harm. 

Interactive online tool helps consumers understand costs of Alzheimer’s disease self-care and medicines

Fair Health has launched a new Alzheimer’s disease shared decision-making tool featuring clinical information for self-care and drug therapy options, related cost information. and supplementary resources. Provided at no cost to users, these offerings are made available with support from the John A. Hartford Foundation. The online tools, educational content and resources on Alzheimer’s disease care also are available in Spanish. For additional details, read the Fair Health press release (English and Spanish).

“Flip the Script on Aging” during Older Americans Month

Each May, the Administration for Community Living (ACL) leads observances for Older Americans Month (OAM). The 2025 OAM theme is “Flip the Script on Aging,” which will focus on transforming how society perceives, talks about, and approaches aging. Throughout OAM, ACL and partnering organizations will honor older adults’ contributions, approaches for staying active and engaged, and highlight the opportunities for purpose, exploration, and connection that come with aging. For OAM 2025 resources, click here.

Milken Institute releases report on employer support for family caregivers

The Milken Institute Future of Aging has released a report, “Supporting Family Caregiving: How Employers Can Lead,” which highlights three essential strategies for organizations to support employees who are family caregivers:

• Flexible Work Arrangements: Offer adaptive schedules and remote work options to help caregivers manage responsibilities without sacrificing productivity.
• Caregiver-Specific Benefits: Implement policies such as paid caregiving leave (distinct from vacation or personal days), educational resources, employee support groups, and financial tools tailored to caregivers’ needs.
• Technology and Inclusive Cultures: Use technology-enabled caregiving platforms and foster workplace environments where employees feel comfortable identifying as family caregivers.

Organizations that prioritize caregiver support experience measurable benefits, including improved employee retention, higher engagement, and greater productivity. These efforts enhance workforce well-being and position organizations as leaders in an evolving talent landscape. 

AD/ADRD is chronically undiagnosed and early detection is underused

According the new research findings, “Older US adults’ experiences with and views about cognitive screening and blood biomarker testing for Alzheimer’s disease,” despite the potential benefits of early detection and increasing treatment options for Alzheimer’s disease and related dementias, there is limited use of valuable screening and testing tools. Researchers at the University of Michigan School of Public Health and Michigan Medicine studied responses from nearly 1,300 participants in the National Poll on Healthy Aging—a large, nationally representative survey of older adults—to understand experiences and views of cognitive screening and blood biomarker testing among adults aged 65-80. Consistent with previous research, their study found that only about 1 in 5 older Americans reported having cognitive screening in the past year, with such rates lower among certain racial and ethnic minority groups (i.e., Hispanic, Asian American). More than 6.5 million people in the United States have Alzheimer’s disease or a related dementia, a number projected to double by 2060, according to the Alzheimer’s Association. The study showed that a majority of older Americans are aware of the upsides of early detection— earlier treatment and emotional support, financial and legal planning, care coordination and more. Even with recognition of potential benefits and Medicare coverage of cognitive testing for beneficiaries, the underuse of cognitive screening persists. Millions of dementia cases go undiagnosed and untreated, fueled by multiple barriers to diagnosis at the patient, provider and health care system levels, which the study details.

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January, 2025 News

FDA approves Leqembi IV maintenance dosing for the treatment of early AD

The U.S. Food and Drug Administration (FDA) has approved the Supplemental Biologics License Application (sBLA) for once every four weeks LEQEMBI® (lecanemab-irmb) intravenous (IV) maintenance dosing for the treatment of patients with mild cognitive impairment (MCI) or mild dementia due to Alzheimer’s disease. After an initial 18 months phase of once every two weeks dosing, a transition to the maintenance dosing regimen every four weeks may be considered (or the regimen of once every two weeks may be continued). The sBLA is based on modeling of observed data from the Phase 2 study (Study 201) and its long-term extension (LTE) as well as the Clarity AD study (Study 301) and its LTE study. Modeling simulations predict that transitioning to once every four weeks maintenance dosing after 18 months of once every two weeks treatment will maintain clinical and biomarker benefits of therapy. For additional details, read the full press release and a Neurology Live article.

CMS launches national nursing home staffing recruitment campaign

The Centers for Medicare & Medicaid Services (CMS) has launched a national nursing home staffing campaign to help recruit more nurses to work in nursing homes and state survey agencies that inspect nursing homes for compliance with health and safety standards. CMS will partner with state governments to leverage the foundation CMS is building to bolster the campaign in their state. CMS also will collaborate with various interested parties, such as resident advocates, nursing organizations, and nursing home associations to strengthen the campaign by amplifying recruitment messages and promoting incentives to work in nursing homes. The CMS “Explore Nursing Home Careers” website highlights nursing home career pathways and provides information on becoming a certified nursing assistant (CAN) at no cost. For additional information and updates, click here.

GAO report on Older Americans Act programs finds overlap, but no duplication, with other federal programs 

In fiscal year 2024, Older Americans Act (OAA) services received approximately $2.4 billion in congressional appropriations. These services exist alongside other federal programs that provide social services for older adults. The U.S. General Accounting Office (GAO) regularly reports on federal programs with potentially fragmented, overlapping, or duplicative efforts, with the goal of improving the efficiency and effectiveness of government. GAO was asked by Congress to review potential duplication between programs authorized under the OAA and federal programs authorized under other laws. The newly published GAO report determined that OAA services and assistance overlap — but do not duplicate — those available under 36 other federal programs. GAO found that these programs differ in the population served, goals and services provided, or both. The overlapping programs can complement OAA-funded services, for example by providing more specialized services relevant to an agency’s expertise. The areas of need served by these programs include health, nutrition, transportation, and employment. Nine departments and agencies administer the 36 non-OAA programs, which indicates there is fragmentation of services for older adults. 

The U.S. Department of Health and Human Services (HHS), Administration for Community Living (ACL), which administers most OAA programs, is taking steps to manage fragmentation by coordinating with other federal agencies that serve older adults. Coordination among federal agencies can enhance complementary efforts and mitigate potential negative effects of fragmentation. ACL acts as the lead agency of the Interagency Coordinating Committee on Healthy Aging and Age-Friendly Communities (Coordinating Committee), which began work in 2023 after receiving initial funding. The Coordinating Committee is composed of 18 federal agencies — including the Departments of Agriculture, Labor, Transportation, and Housing and Urban Development — which have taken initial steps to work together to avoid duplicative work and leverage resources. Last May, the Coordinating Committee published a strategic framework as a basis to develop a national set of recommendations to advance healthy aging and age-friendly communities for older adults. The Coordinating Committee is in the process of further developing strategic goals, in part, by hosting listening sessions that include older adults. GAO has identified leading practices for effective interagency collaboration, including defining common outcomes and ensuring accountability, which could inform ACL’s work with the Coordinating Committee. Incorporating these practices could increase the effectiveness of the coordination in managing fragmentation of services.

Elizabeth Dole Home and Community Based Services for Veterans and Caregivers Act signed into law

President Biden has signed into law the Elizabeth Dole Home and Community Based Services for Veterans and Caregivers Act (S. 141/H.R. 542; P.L. 118-210), which improves and expands home and community-based services (HCBS) provided by the Department of Veterans Affairs (VA) for disabled and older veterans, including those living with Alzheimer’s disease and other forms of dementia. Under the bill, the cost of providing non-institutional alternatives to nursing home care may not exceed the cost that would have been incurred if a veteran had been furnished VA nursing home care, unless the VA determines that a higher cost is in the best interest of the veteran. Under previous law, these expenditures were limited to 65% of the cost. Among other requirements, the VA must:

• establish a partnership with the Program of All-Inclusive Care for the Elderly (PACE) in certain areas to furnish non-institutional alternatives to nursing home care;
• implement various programs (e.g., the Veteran Directed Care program) to expand access to HCBS;
• provide specified support and benefits to caregivers of certain disabled veterans;
• implement a pilot program to provide homemaker and home health aide services to veterans who reside in communities with a shortage of home health aides; and
• ensure the availability of HCBS for Native American veterans.

For veterans or family caregivers who are discharged from the Program of Comprehensive Assistance for Family Caregivers, a caregiver support coordinator must provide for a personalized transition to an appropriate program. The Veterans Health Administration must review programs administered through the Office of Geriatric and Extended Care to ensure consistency in program management, eliminate service gaps at the medical center level, and ensure the availability of and access to HCBS.

A new report from the National Academies of Sciences, Engineering, and Medicine identifies research priorities that the National Institutes of Health (NIH) should pursue over the next three to 10 years to advance the prevention and treatment of Alzheimer’s disease and related dementias (AD/ADRD). The report identifies 11 research priorities and associated near- and medium-term scientific questions that should be a focus of NIH-funded AD/ADRD biomedical research, as well as complementary recommendations focused on overcoming crosscutting barriers to progress on the recommended research priorities. The priorities fall into three broad areas:

• Quantify brain health across the life course and accurately predict risk of, screen for, diagnose, and monitor AD/ADRD
• Build a more comprehensive and integrated understanding of the disease biology and mechanistic pathways that contribute to AD/ADRD development and resilience over the life course
• Catalyze advances in interventions for the prevention and treatment of AD/ADRD spanning from precision medicine to public health strategies

The research priorities identified by the report are not focused on individual dementia types. Instead, they emphasize research opportunities that would apply across the spectrum of AD/ADRD and respond to the high prevalence of mixed etiologies dementia (MED). NASEM also has published highlights summarizing the full report.

FDA begins consideration of BLA for Leqembi subcutaneous maintenance dosing

The U.S. Food and Drug Administration (FDA) has accepted Eisai’s Biologics License Application (BLA) for Leqembi (lecanemab-irmb) subcutaneous autoinjector (SC-AI) for weekly maintenance dosing. Leqembi is indicated for the treatment of Alzheimer’s disease (AD) in patients with mild cognitive impairment (MCI) or mild dementia stage of disease (collectively referred to as early AD). The BLA is based on data from the Clarity AD (Study 301) open-label extension (OLE) and modeling of observed data. If approved by the FDA, Leqembi would be the first maintenance dosing treatment for AD that can be administered at home using SC-AI. The injection process is expected to take 15 seconds on average. As part of the SC-AI 360 mg weekly maintenance regimen, patients who have completed the biweekly intravenous (IV) initiation phase would receive weekly doses that are expected to maintain the clinical and biomarker benefits. FDA is expected to issue a decision no later than the August 31 Prescription Drug User Fee Act (PDUFA) action date. 

ADvancing States IQ offers updated introductory course on elder abuse

In partnership with the National Center on Elder Abuse (NCEA), ADvancing States is offering a fully updated online training course, “An Introduction to Elder Abuse,” available on ADvancing States IQ in the course category Preventing Abuse and Exploitation. Course materials define, distinguish, and explain the significance and impact of elder abuse, as well as offer strategies to respond to possible scenarios. The course is designed for individuals in the fields of aging and disabilities who may encounter elder abuse or vulnerable adult abuse situations. Key topics covered in this course include elder abuse, aging and ageism, risk and protective factors, impacts and consequences, and responses and resources. 

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