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2025 ADVOCATES GUIDE3 GETTING STARTED Dear Alzheimer’s Advocate, Thank you for your continued commitment in the fight to end Alzheimer’s and all other dementia. Your advocacy is driving momentum on Capitol Hill and in state capitals across the nation. This year marks 15 years of the Alzheimer’s Impact Movement (AIM). During these 15 years, you have empowered AIM to build bipartisan momentum and improve the lives of those impacted by Alzheimer’s and other dementia across the nation. Thanks to you, we’ve made remarkable progress in research, care and support in the Alzheimer’s and dementia community. Just last year, we celebrated Congress renewing the national commitment to addressing dementia. And we’re not stopping. You’ve already made your voices heard this year by sharing personal stories, attending meetings, and engaging with federal and state policymakers across the country through emails, calls, videos and social media. With your support, AIM will continue our work to ensure we build on the progress of the last 15 years to develop and implement the federal and state policies needed for the new era of Alzheimer’s and dementia treatment and care. In this Advocates Guide, you’ll find everything you need to make the most of your year-round advocacy efforts, including detailed information about our policy priorities and tips and resources on how to successfully connect with elected officials. Thank you for your continued commitment to the fight to end Alzheimer’s and all dementia. We look forward to working together throughout the year. Be sure to follow our social media accounts and use #ENDALZ to continue the conversation online. This disease is one of the most critical public health issues in America. That’s why we are unrelenting advocates for public policy that advances research and improves access to care and support services. Thank you for joining us in the fight. Sincerely, The Alzheimer’s Association and AIM Public Policy Team WELCOME4 GETTING STARTED TABLE OF CONTENTS GETTING STARTED 2025 Alzheimer’s Disease Facts and Figures Infographic5 2025 Alzheimer’s Facts and Figures Special Report Infographic6 2025 Alzheimer’s Facts and Figures Fact Sheet7 ENGAGING ELECTED OFFICIALS Tipsheet: Spark Social Media Conversations9 10 Tips and Tricks: Meetings with Elected Officials11 Congressional Meeting Checklist12 2025 ISSUES AND PRIORITIES 2025 Federal Policy Priorities13 Fiscal Year 2026 Alzheimer’s Research Funding Fact Sheet14 Increase the Commitment to Alzheimer’s Research and Public Health Response — Appropriations Priorities Background and Congressional Talking Points15 The Alzheimer’s Screening and Prevention (ASAP) Act Fact Sheet22 The Alzheimer’s Screening and Prevention (ASAP) Act Background and Congressional Talking Points23 The Accelerating Access to Dementia & Alzheimer’s Provider Training (AADAPT) Act Fact Sheet26 The Accelerating Access to Dementia & Alzheimer’s Provider Training (AADAPT) Act Background and Congressional Talking Points27 2025 State Policy Priorities30 State Advocacy 10132 NEXT STEPS Ways to Say Thank You33 Advocacy Action Alert34 AAIC For All35© 2025 Alzheimer’s Association® | All Rights Reserved Alzheimer’s Association is a not-for-profit 501(c)(3) organization For more information, visit alz.org/facts In 2025, Alzheimer’s and other dementias will cost the nation $ 384 BILLION $ 1 TRILLION By 2050, these costs could rise to nearly 2025 ALZHEIMER’S DISEASE FACTS AND FIGURES IT KILLS MORE THAN COMBINED breast cancer prostate cancer NEARLY 12 MILLION Americans provide unpaid care for people with Alzheimer’s or other dementias These caregivers provided more than 19 billion hours valued at nearly $ 413 BILLION $ older adults dies with Alzheimer’s or another dementia 1 IN 3 The lifetime risk for Alzheimer’s at age 45 is 1 IN 5 for women 1 IN 10 for men Over Americans are living with Alzheimer’s 7 MILLION Between 2000 and 2021 deaths from heart disease have decreased 2.1 % Between 2000 and 2022 deaths from heart disease have decreased while deaths from Alzheimer’s disease have increased 142 % Americans feel optimistic about new Alzheimer’s treatments in the next decade UP TO 4 IN 5 of Americans would want a medication to slow the progression of Alzheimer’s following a diagnosis 92 %consider cognitive screening very important 3 in 5 3 in 5 would accept moderate or high levels of risk to take medication that slows the progression of Alzheimer’s disease 4 in 5 consider early diagnosis very important 9 in 10 would want a simple test to allow for early treatment 4 in 5 would want to know if they had Alzheimer’s before symptoms appear or affect daily activities 9 in 10 would want a medication that could slow the progression of Alzheimer’s disease following a diagnosis 3 in 4 say having treatments that slow progression makes early diagnosis more important © 2025 Alzheimer’s Association® | All Rights Reserved Alzheimer’s Association is a not-for-profit 501(c)(3) organization For more information, visit alz.org/facts AMERICAN PERSPECTIVES ON EARLY DETECTION OF ALZHEIMER’S DISEASE IN THE ERA OF TREATMENT feel optimistic about the future of Alzheimer’s treatment 4 in 5 Up to7 GETTING STARTED The number of Americans living with Alzheimer’s is growing — and growing fast. • Today, 7.2 million Americans are living with Alzheimer’s — 1 in 9 people aged 65 and older. • More than 60% of those with Alzheimer’s are women. • Blacks are about twice as likely, and Hispanics are about 1.5 times as likely, to have Alzheimer’s or other dementias compared with Whites. • The number of people living with Alzheimer’s is expected to double to nearly 14 million in 2060. A majority of Americans would want to know if they had Alzheimer’s early, and are willing to undergo blood testing. • Nearly 4 in 5 Americans want an Alzheimer’s diagnosis early — meaning prior to having any symptoms or before symptoms have interfered with daily activities. • If a simple test, such as a blood-based biomarker test, were available to detect the pathological changes associated with Alzheimer’s, 91% of Americans say they would want to take the test. • More than 90% of Americans would definitely or probably take medication that could slow the progression of Alzheimer’s — and nearly 3 in 5 (58%) would be willing to accept either moderate or high levels of risk with taking the medication. • More than 80% of Americans expressed interest in participating in Alzheimer’s disease clinical trials. 2025 Alzheimer’s Disease Facts and Figures APRIL 2025 alzimpact.org FACTSHEET Alzheimer’s not only affects those living with the disease — it also places a large burden on families. • In 2024, 11.9 million family members and friends of individuals living with dementia provided an estimated 19.2 billion hours of unpaid care, valued at more than $413 billion. • Of the total lifetime cost of caring for someone with dementia, 70% is borne by families — either through out-of-pocket health and long-term care expenses or in the form of unpaid care. • More than half of dementia caregivers report high or very high emotional stress due to caregiving. • Nearly three quarters of dementia caregivers report concerns about maintaining their own health since becoming a caregiver. Percent of Adults Who Would Take Medication to Slow Disease Progression Definitely 44% 48% 2% 6% DefinitelyProbablyProbably YesYesNoNo The number of Americans living with Alzheimer’s is growing — and growing fast. • Today, 7.2 million Americans are living with Alzheimer’s — 1 in 9 people aged 65 and older. • More than 60% of those with Alzheimer’s are women. • Blacks are about twice as likely, and Hispanics are about 1.5 times as likely, to have Alzheimer’s or other dementias compared with Whites. • The number of people living with Alzheimer’s is expected to double to nearly 14 million in 2060. A majority of Americans would want to know if they had Alzheimer’s early, and are willing to undergo blood testing. • Nearly 4 in 5 Americans want an Alzheimer’s diagnosis early — meaning prior to having any symptoms or before symptoms have interfered with daily activities. • If a simple test, such as a blood-based biomarker test, were available to detect the pathological changes associated with Alzheimer’s, 91% of Americans say they would want to take the test. • More than 90% of Americans would definitely or probably take medication that could slow the progression of Alzheimer’s — and nearly 3 in 5 (58%) would be willing to accept either moderate or high levels of risk with taking the medication. • More than 80% of Americans expressed interest in participating in Alzheimer’s disease clinical trials. 2025 Alzheimer’s Disease Facts and Figures APRIL 2025 alzimpact.org FACTSHEET Alzheimer’s not only affects those living with the disease — it also places a large burden on families. • In 2024, 11.9 million family members and friends of individuals living with dementia provided an estimated 19.2 billion hours of unpaid care, valued at more than $413 billion. • Of the total lifetime cost of caring for someone with dementia, 70% is borne by families — either through out-of-pocket health and long-term care expenses or in the form of unpaid care. • More than half of dementia caregivers report high or very high emotional stress due to caregiving. • Nearly three quarters of dementia caregivers report concerns about maintaining their own health since becoming a caregiver. Percent of Adults Who Would Take Medication to Slow Disease Progression Definitely 44% 48% 2% 6% DefinitelyProbablyProbably YesYesNoNo8 GETTING STARTED Facts in Your State The 2025Alzheimer’s Disease Facts and Figures report also contains state-by-state data on the impact of the disease. Find the full report and information on your state at alz.org/facts. 2025 Costs of Alzheimer’s = $384 Billion Medicare $174B Medicaid $72B Out-of-Pocket $97B Other $41B Percentage Change in Selected Causes of Death (2000-2022) 142% -1%-1% -66% Alzheimer’s Disease Heart Disease Stroke HIV Alzheimer’s is not just memory loss. Alzheimer’s kills. • In 2022, 120,122 people in the United States died from Alzheimer’s disease, making it the seventh leading cause of death in the country and the sixth leading cause for those aged 65 and older. • Deaths from Alzheimer’s increased 142% from 2000 to 2022 while deaths from other major diseases (including heart disease, stroke and HIV/AIDS) decreased over the same period. • Among people age 70 with Alzheimer’s, 61% are expected to die before age 80, compared with 30% of those without Alzheimer’s. • Each year, about 1 in every 3 seniors who dies has Alzheimer’s or another dementia. Not only does Alzheimer’s place a huge burden on families, it is also straining the health care system. • In 2025, the costs of caring for those with Alzheimer’s and other dementias will total an estimated $384 billion, with $246 billion of it (64%) paid by Medicare and Medicaid. • Average per-person Medicare spending for those with Alzheimer’s and other dementias is 2.7 times higher than average per-person spending across all other seniors. Average per-person Medicaid payments are 22 times higher. • Individuals with dementia average twice as many hospitalizations as those without dementia. • The estimated lifetime cost of care for individuals with Alzheimer’s is about $405,262, more than twice the amount for those without Alzheimer’s. • Unless something is done, in 2050, Alzheimer’s will cost nearly $1 trillion (in 2023 dollars). What is the NAPA Reauthorization Act (S. 133 / H.R. 619)? • NAPA is set to expire in 2025. The NAPA Reauthorization Act will continue the work of the National Plan through 2035. • In addition, the legislation: o Adds new federal representatives to the NAPA Advisory Council from the Department of Justice, the Social Security Administration, and the Federal Emergency Management Agency; oRequires that the National Plan include recommendations on reducing disparities among underrepresented populations; oEnsures that NAPA includes efforts to promote healthy aging and risk reduction, consistent with the new goal. What is the Alzheimer’s Accountability and Investment Act (S. 134 / H.R. 620)? • In 2024, caring for people with Alzheimer’s will cost Medicare and Medicaid an estimated $231 billion. This represents close to 1 in every 6 dollars Medicare spends. And these costs are only projected to increase through 2050, when nearly 1 in every 3 Medicare dollars will be spent on someone with Alzheimer’s. • Given this enormous financial burden on government budgets, a commitment to Alzheimer’s research today will yield savings tomorrow. • The Alzheimer’s Accountability and Investment Act would maintain the Alzheimer’s Bypass Budget process. This will ensure that Congress continues to hear how much funding is needed to fully pursue scientific opportunities to prevent and effectively treat Alzheimer’s. alzimpact.orgalz.org ® What is the Alzheimer’s Bypass Budget? • The bipartisan Alzheimer’s Accountability Act (P.L. 113-235) became law as part of the fiscal year 2015 omnibus appropriations bill. • The law requires the scientists at the National Institutes of Health (NIH) to submit an annual Alzheimer’s research budget proposal directly to Congress, thus bypassing the usual bureaucratic budget procedures. • This professional judgment budget — also known as the Alzheimer’s Bypass Budget — specifies the resources that scientists need to reach the National Alzheimer’s Plan goal of preventing and effectively treating Alzheimer’s disease. • The NIH released the most recent Alzheimer’s Bypass Budget in July 2023. The National Alzheimer’s Project Act (Public Law 111-375) created an Advisory Council on Alzheimer’s Research, Care, and Services to assist in the development and evaluation of the National Plan. The Council is comprised of representatives of 11 federal agencies and 12 individuals from outside the federal government. The Council is currently chaired by Adrienne Mims, the Chief Medical Officer at Rainmaker Strategic Solutions. Each year, the Advisory Council makes recommendations to Congress and the Secretary of Health and Human Services in the areas of clinical care, long term care and supports, research, and risk reduction. The most recent recommendations were unanimously adopted by the non-federal members of the Advisory Council in July 2023. Advisory Council on Alzheimer’s Research, Care, and Services9 ENGAGING ELECTED OFFICIALS @ TAGGING Mentioning or tagging is an easy way to engage legislators online. On most major social networks, simply include their “handle” (i.e. @SenatorName) in your post. Make sure you use their official government account rather than their campaign or personal accounts. REPOSTING AND COMMENTING Reply and comment on policymakers’ posts to raise the issue of Alzheimer’s. You can also share their posts adding your thoughts. Share posts from AIM, your chapter or fellow advocates, and tag your legislator to bring them into the conversation. # HASHTAGS #ENDALZ is a hashtag commonly used by the Alzheimer’s community. There are also hashtags specific to legislation or actions we are supporting. Please make sure the hashtag matches the message you are sending. ≤3 REMEMBER THE “RULE OF THREE” Mentions, tags and hyperlinks are all interactive and clickable parts of a social media post. It is best to include no more than three in a single post. Including too many can distract from your primary message. IDENTIFY YOURSELF AS A CONSTITUENT Legislators want to hear from their constituents online. Visit fb.com/townhall to turn-on Facebook’s “constituent badge.” On other platforms, mention your town/ neighborhood in your profile and include photos from recognizable local events or landmarks. SHARE IN LOCAL GROUPS If you’re part of any local community or neighborhood social media group, you can share your meeting there as well. You can tie in a call for community members to become advocates themselves. Please see your group’s rules regarding political content. FIND COMMUNITY EVENTS ON FACEBOOK After following your elected officials, visit fb.com/events and check out the “popular with friends” category. Select “interested” for any local community events you see and Facebook will notify you of similar events in the future. Make sure to go early and stay late to network and discuss the Alzheimer’s crisis. And don’t forget to wear your purple! GET LINKEDIN Elected officials aren’t your only audience. You can connect with legislative staff, local influencers, other advocates and community allies via your professional network. You can share AIM posts, your own letters-to-the-editor and relevant Alzheimer’s information. Social networks enable direct interaction with policymakers, as most run (or at least monitor) their own social media accounts to gather feedback from constituents. With just a handful of simple actions you can make a big difference in the fight to end Alzheimer’s and all other dementia. TIPSHEET: SPARK SOCIAL MEDIA CONVERSATIONSNext >