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2024 ADVOCATES GUIDEGETTING STARTED Dear Alzheimer’s Advocate, Thanks to your dedication, we’re making remarkable progress in the fight to end Alzheimer’s and all other dementia. The federal investment in Alzheimer’s and dementia research is at an all time high — more than $3.8 billion annually, individuals living in the early stages of Alzheimer’s have access to disease-modifying treatments, and dementia care delivery is improving. We’ve reached this new era of treatment and care because of landmark bipartisan legislation — including the National Alzheimer’s Project Act, the Alzheimer’s Accountability Act, and the BOLD Infrastructure for Alzheimer’s Act. These laws, among others you’ve grown support for over the last decade, are making a demonstrable impact in the lives of people living with dementia and their caregivers. And, these advancements are providing hope to millions more. But we know more work remains. With your support, AIM will continue our work to ensure we build on the progress of the last decade through the passage of bipartisan legislation to renew these three signature laws. In addition, we must grow support for new bipartisan legislation to empower primary care providers to better diagnose Alzheimer’s and other dementia and deliver high-quality, person-centered care in community-based settings. Already this year, you’ve shared your story, advocating to grow support for our federal and state policy priorities. At state advocacy days, in district meetings, on social media and more, you’re using your voices and making an impact. And we know you’ll continue to speak out throughout the year for the Alzheimer’s community. 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 joining us in the fight. We look forward to working together throughout 2024. Be sure to follow our social media accounts and use #ENDALZ to continue the conversation online. Sincerely, The Alzheimer’s Association AIM Public Policy Team WELCOMEGETTING STARTED TABLE OF CONTENTS GETTING STARTED 2024 Alzheimer’s Disease Facts and Figures Infographic 5 2024 Alzheimer’s Facts and Figures Fact Sheet 6 ENGAGING ELECTED OFFICIALS Tipsheet: Spark Social Media Conversations 8 10 Tips and Tricks: Meetings with Elected Officials 10 Congressional Meeting Checklist 11 2024 ISSUES AND PRIORITIES 2024 Federal Policy Priorities 12 NAPA Reauthorization Act and Alzheimer’s Accountability and Investment Act Fact Sheet 14 NAPA Reauthorization Act and Alzheimer’s Accountability and Investment Act Background and Congressional Talking Points 16 BOLD Reauthorization Act Fact Sheet 19 BOLD Reauthorization Act Background and Congressional Talking Points 20 Fiscal Year 2024 Alzheimer’s Research Funding Fact Sheet 23 Increase the Commitment to Alzheimer’s Research and Public Health Response — Appropriations Priorities Background and Congressional Talking Points 24 Accelerating Access to Dementia and Alzheimer’s Provider Training (AADAPT) Act Fact Sheet 29 Accelerating Access to Dementia and Alzheimer’s Provider Training (AADAPT) Act Background and Congressional Talking Points 30 2024 State Policy Priorities 33 State Advocacy 101 35 NEXT STEPS Ways to Say Thank You 36 Advocacy Action Alert 37NEARLY 7 MILLION AMERICANS ARE LIVING WITH ALZHEIMER’S DECREASED 2.1 % WHILE DEATHS FROM ALZHEIMER’S DISEASE HAVE INCREASED 141 % OF DEMENTIA CAREGIVERS DEMENTIA CAREGIVERS BETWEEN 2000 AND 2021, DEATHS FROM HEART DISEASE HAVE 18 BILLION HOURS VALUED AT NEARLY © 2024 Alzheimer’s Association® | All Rights Reserved Alzheimer’s Association is a not-for-profit 501(c)(3) organization OVER 11 MILLION $ 347 BILLION IT KILLS MORE THAN BREAST CANCER AND PROSTATE CANCER COMBINED AMERICANS PROVIDE UNPAID CARE FOR PEOPLE WITH ALZHEIMER’S OR OTHER DEMENTIAS THESE CAREGIVERS PROVIDED MORE THAN AND OTHER DEMENTIAS WILL COST THE NATION $ 360 BILLION $ 1 TRILLION BY 2050, THESE COSTS COULD RISE TO NEARLY I N 2024, ALZHEIMER’S $$$$$ For more information, visit alz.org/facts 2024 ALZHEIMER’S DISEASE FACTS AND FIGURES 1 in 10 FOR MEN THE LIFETIME RISK FOR ALZHEIMER’S AT AGE 45 IS 1 in 5 FOR WOMEN FEEL STRESSED WHEN COORDINATING CARE SAY IT COULD HELP THEM BE 3 IN 5 70 % 56 % AND MORE THAN HALF OF CAREGIVERS SAID NAVIGATING HEALTH CARE IS DIFFICULT SAY LESS STRESS AND MORE PEACE OF MIND ARE POTENTIAL BENEFITS OF HAVING A CARE NAVIGATOR BETTER CAREGIVERS 1 IN 3 SENIORS DIES WITH ALZHEIMER’S OR ANOTHER DEMENTIA 6 GETTING STARTED The number of Americans living with Alzheimer’s is growing — and growing fast. • Today, 6.9 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. Alzheimer’s not only affects those living with the disease — it also places a large burden on families. • In 2023, more than 11 million family members and friends of individuals living with dementia provided an estimated 18.4 billion hours of unpaid care, valued at nearly $347 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. More than 1 in 3 report high or very high physical stress from caregiving. • Nearly three quarters of dementia caregivers report concerns about maintaining their own health since becoming a caregiver. 2024 Alzheimer’s Disease Facts and Figures MARCH 2024 alzimpact.org FACTSHEET The burden of caregiving is particularly stressful because of the complicated process of coordinating dementia care. • Among dementia caregivers, 70% report that coordinating dementia care is stressful, and 53% say it is difficult. In addition, two-thirds say it is hard to find support for their own needs. • The top five causes of stress for caregivers are costs, coordinating with multiple doctors, getting help taking a break, securing appointments, and finding appropriate doctors. • Nearly half of dementia caregivers say they have never talked to a health care professional about help with dementia care — and 60% of health care workers believe the health care system is not effectively helping patients and their caregivers navigate dementia care. Top 5 Stressors for Caregivers CostCoordinatingSecuringFinding 42% 36% 35%35% 32% Multiple Doctors with Getting Taking a Break HelpAppointmentsDoctors The number of Americans living with Alzheimer’s is growing — and growing fast. • Today, 6.9 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. Alzheimer’s not only affects those living with the disease — it also places a large burden on families. • In 2023, more than 11 million family members and friends of individuals living with dementia provided an estimated 18.4 billion hours of unpaid care, valued at nearly $347 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. More than 1 in 3 report high or very high physical stress from caregiving. • Nearly three quarters of dementia caregivers report concerns about maintaining their own health since becoming a caregiver. 2024 Alzheimer’s Disease Facts and Figures MARCH 2024 alzimpact.org FACTSHEET The burden of caregiving is particularly stressful because of the complicated process of coordinating dementia care. • Among dementia caregivers, 70% report that coordinating dementia care is stressful, and 53% say it is difficult. In addition, two-thirds say it is hard to find support for their own needs. • The top five causes of stress for caregivers are costs, coordinating with multiple doctors, getting help taking a break, securing appointments, and finding appropriate doctors. • Nearly half of dementia caregivers say they have never talked to a health care professional about help with dementia care — and 60% of health care workers believe the health care system is not effectively helping patients and their caregivers navigate dementia care. Top 5 Stressors for Caregivers CostCoordinatingSecuringFinding 42% 36% 35%35% 32% Multiple Doctors with Getting Taking a Break Help AppointmentsDoctors7 GETTING STARTED 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 to The Council is currently chaired by Adrienne Mims, 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 Services Alzheimer’s is not just memory loss. Alzheimer’s kills. • In 2021, 119,399 people in the United States died from Alzheimer’s disease, making it the seventh leading cause of death in the country and the fifth leading cause for those aged 65 and older. • Deaths from Alzheimer’s increased 141% from 2000 to 2021 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. Facts in Your State The 2024Alzheimer’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. Not only does Alzheimer’s place a huge burden on families, it is also straining the health care system. • In 2024, the costs of caring for those with Alzheimer’s and other dementias will total an estimated $360 billion, with $231 billion of it (64%) paid by Medicare and Medicaid. • Average per-person Medicare spending for those with Alzheimer’s and other dementias is 2.8 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 $395,000, 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). 2024 Costs of Alzheimer’s = $360 Billion Medicare $164B Medicaid $68B Out-of-Pocket $91B Other $38B Percentage Change in Selected Causes of Death (2000-2021) *Total does not add due to rounding 141% -2%-3% -66% Alzheimer’s Disease Heart Disease Stroke HIV 8 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 CONVERSATIONS9 ENGAGING ELECTED OFFICIALS SHARE THE PICTURE Images and videos increase the likelihood your post will be noticed. Tag any individuals, organizations and locations featured in your photo or video. If it includes an elected official or their staff, be sure to get their permission before posting. Post multiple photos together as an album. BROADCAST YOURSELF Consider sharing a “live” video stream on Facebook, Twitter/X, or Instagram. Make sure you have a steady device and you promote it in advance so your followers know to tune in. Save video clips so you can share highlights later for those who missed it. ADVOCACY BINGO Have some fun and engage on social media by completing the Advocate Bingo card below. Be sure to use #ENDALZ in your posts. Mark your card when you take one of the actions. TIPSHEET: SPARK SOCIAL MEDIA CONVERSATIONS Take a selfie at a local landmark and share it Post your “Why I’m an Advocate” photo, story or video Ask your social network followers to take action Tag your local Alzheimer’s Association Chapter in a post Mention your U.S. Senators in your Twitter/X post Make an “ask” on one of our priorities via a video Show us your purple pride (i.e. your wardrobe) Repost or share a post from the Alzheimer’s Association Comment on an AIM or Association YouTube video Send an email to friends/ family urging them to take action Mention your House member in your Twitter/X post Share a 1 minute “Why I’m an Advocate” video Watch and share one of AIM’s YouTube videos. Follow 3 other advocates NOT from your state Comment on Your U.S. Senator(s) Facebook Page or tag them in a post Comment on or reply to one of AIM’s posts Text ALZ to 52886 and take action Take a pic with an #ENDALZ sign or paddle Share a post from alz.org/ blog or alzimpact. org/blog Have a pet? Show us how they’re taking action Tag one of the presenters or featured speakers in a post Share a group screenshot from a Zoom or video conference Comment on another advocate’s post Use an Alzheimer’s related image as your Zoom or video background FREE SPACENext >