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2022 ADVOCATES GUIDE2 GETTING STARTED WELCOME Dear Alzheimer’s Advocate, Thank you for your continued commitment in the fight to end Alzheimer’s and all dementia. You’ve already made your voices heard this year by sharing personal stories, attending virtual meetings and engaging with federal and state policymakers across the country through emails, calls, videos and social media. Thanks to your work, we secured robust Fiscal Year 2022 funding increases for Alzheimer’s research and BOLD implementation. Added to current NIH spending, annual federal funding for Alzheimer’s research will be more than $3.4 billion. And, working with new and longstanding bipartisan champions, we are growing support for our legislative priorities like the NAPA Reauthorization Act, the Alzheimer's Accountability and Investment Act, the Comprehensive Care for Alzheimer’s Act and the ENACT Act. After so many successes, it’s easy to think these victories are commonplace — but they’re not. They’re because of each one of you. Your efforts are driving change on Capitol Hill and across the nation. But we know, more work remains. 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. Be sure to follow our social media accounts and use #ENDALZ to continue the conversation online. Alzheimer’s and dementia impacts millions of Americans. That’s why we work tirelessly to secure policies that advance research and improve access to care and support services. Thank you for joining us in the fight. Sincerely, The Alzheimer’s Association AIM Public Policy Team3 GETTING STARTED TABLE OF CONTENTS GETTING STARTED 2022 Alzheimer’s Disease Facts and Figures Video 4 2022 Alzheimer’s Disease Facts and Figures Infographic 5 2022 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 2022 ISSUES AND PRIORITIES 2022 Federal Policy Priorities 12 NAPA Reauthorization Act and Alzheimer’s Accountability and Investment Act Fact Sheet 15 NAPA Reauthorization Act and Alzheimer’s Accountability and Investment Act Background and Congressional Talking Points 17 Comprehensive Care for Alzheimer’s Act Fact Sheet 21 Comprehensive Care for Alzheimer’s Act Background and Congressional Talking Points 22 ENACT Act Fact Sheet 25 ENACT Act Background and Talking Points 27 Fiscal Year 2023 Alzheimer’s Research Funding Fact Sheet 34 BOLD Infrastructure for Alzheimer’s Act Fact Sheet 35 Increase the Commitment to Alzheimer’s Research & Public Health Response — Appropriations Priorities Background and Congressional Talking Points 36 2022 State Policy Priorities 42 State Advocacy 101 43 NEXT STEPS Ways to Say Thank You 44 Phone2Action Alert 454 GETTING STARTED Click above to watch the video or visit alz.org/facts to learn more. 2022 ALZHEIMER’S DISEASE FACTS AND FIGURES VIDEO2022 Alzheimer’s Disease Facts and Figures in seniors dies with Alzheimer’s or another dementia decreased . % Between and , deaths from heart disease have increased % while deaths from Alzheimer’s disease have It kills more than breast cancer and prostate cancer combined © Alzheimer's Association® | All Rights Reserved Alzheimer’s Association is a not-for-profit (c)() organization. Over million Americans provide unpaid care for people with Alzheimer’s or other dementias These caregivers provided more than billion hours valued at nearly $ billion By , these costs could rise to nearly $ trillion In , Alzheimer’s and other dementias will cost the nation $ billion % increase In , COVID- contributed to a in Alzheimer’s and dementia deaths More than % of Americans know little or are not familiar with mild cognitive impairment (MCI), which can be an early stage of Alzheimer’s. million More than Americans are living with Alzheimer’sThe number of Americans living with Alzheimer’s is growing — and growing fast. • Today, more than 6.5 million Americans are living with Alzheimer’s — 1 in 10 people aged 65 and older. • The number of people living with Alzheimer’s is expected to more than double to nearly 14 million by 2060. Many of those with Alzheimer’s remain undiagnosed. A shortage of dementia care specialists creates a barrier to timely and accurate diagnoses. • A study of the neurology workforce projects a 19% shortage of neurologists by 2025. Twenty states have been deeemed “neurology deserts,” meaning they are projected to have fewer than 10 neurologists per 10,000 people with dementia in 2025. • The United States will need to nearly triple the living with Alzheimer’s in 2050. • Only 1.2% of psychologists specialize in care for older people, which falls short of current and projected future demands. • To care for people with dementia, a 34.5% increase in the number of home health and personal care aides will be needed in the next six years to meet projected demand. 2022 Alzheimer’s Disease Facts and Figures MARCH 2022 alzimpact.org FACTSHEET Millions of Americans Aged 65 and Older with Alzheimer’s 2022203020402050 6.5 8.5 11.2 12.7 2060 13.8 Diagnosis is further complicated by the lack of understanding of mild cognitive impairment (MCI) — the stage before the onset of dementia. • More than 80% of Americans know very little or nothing about MCI. But, after hearing it described, 54% say they would want to know if they had Alzheimer’s disease while in the MCI stage. • Nine in 10 primary care providers say diagnosing MCI due to Alzheimer’s disease is important, but they do not usually feel comfortable diagnosing it. • Nearly three in four primary care providers say it normal aging.The growing number of people living with Alzheimer’s is placing a huge strain on the health care system. • In 2022, the costs of caring for those with Alzheimer’s and other dementias will total an estimated $321 billion, with $206 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. Medicaid payments are 22 times higher. • Unless something is done, in 2050, Alzheimer’s will cost nearly $1 trillion (in 2022 dollars). Alzheimer’s is not just memory loss. Alzheimer’s kills. • In 2019, 121,499 people in the United States died from Alzheimer’s disease, making it the sixth leading cause of death in the United States and the fifth leading cause of death for those aged 65 and older. • Deaths from Alzheimer’s increased 145% from 2000 to 2019 while deaths from other major diseases (including heart disease, stroke and HIV/AIDS) decreased. • Preliminary data show that in 2020 and 2021, during the COVID-19 pandemic, there were more than 55,700 Alzheimer’s and dementia deaths in excess of the average. Facts in Your State The 2022 Alzheimer’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. Alzheimer’s also places a substantial burden on families. • In 2021, more than 11 million family members and friends of individuals living with dementia provided unpaid care valued at nearly $272 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 from the value of unpaid care. • The annual out-of-pocket spending incurred by dementia caregivers — including on household and personal expenses — is nearly twice as high as that incurred by caregivers of people without dementia. • Nearly three-fourths of dementia caregivers report that they are concerned about maintaining their own health since becoming a caregiver. • Dementia caregivers have twice the odds of experiencing an overnight hopsitalization compared with non-caregivers. alzimpact.orgalz.org ® 2022 Costs of Alzheimer’s = $321 Billion Medicare $146B Medicaid $60B Out-of- Pocket $81B Other $34B8 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. RETWEETING & 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 Hashtags link together a conversation and help you find relevant information. One commonly used example is: #ENDALZ. 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 or Tweet. 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. FIND POLITICAL EVENTS ON FACEBOOK Facebook’s events feature is a great way to find opportunities to connect with your elected officials and other advocates in your community. After following your elected officials, visit fb.com/events and check out the “popular with friends” category. Select “interested” for any local political 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. TIPSHEET: SPARK SOCIAL MEDIA CONVERSATIONS 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.9 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, 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. MEET VIRTUALLY Remote video calls and virtual meetings have replaced many in-person interactions. Use Zoom, Skype, FaceTime and other tools to hold meetings with policymakers and fellow advocates. 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 Tweet at both of your U.S. Senators Make an “ask” on one of our priorities via a video Show us your purple pride (i.e. your wardrobe) Retweet 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 FREE SPACE Tweet at your U.S. Rep- resentative 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 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. Comment on another advocate’s post Use an Alzheimer’s related image as your Zoom or video backgroundNext >