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2023 ADVOCATES GUIDE2 GETTING STARTED WELCOME Dear Alzheimer’s Advocate, Thank you for your continued commitment in the fight to end Alzheimer’s and all other dementia. 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. Working with new and longstanding bipartisan champions, we are working to ensure access to FDA-approved Alzheimer’s treatments and are growing support for our legislative priorities including the NAPA Reauthorization Act, the Alzheimer’s Accountability and Investment Act and the Comprehensive Care for Alzheimer’s Act. Thanks to your work, in December 2022 key provisions of the bipartisan ENACT Act were signed into law, and we secured robust Fiscal Year 2023 funding increases for Alzheimer’s research and BOLD implementation. 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. Ensuring access to FDA-approved treatments may be difficult, but together we will remain committed until we achieve this result 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. 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 2023 Alzheimer’s Disease Facts and Figures Infographic 4 2023 Alzheimer’s Facts and Figures Fact Sheet 5 ENGAGING ELECTED OFFICIALS Tipsheet: Spark Social Media Conversations 7 10 Tips and Tricks: Meetings with Elected Officials 9 Congressional Meeting Checklist 10 2023 ISSUES AND PRIORITIES 2023 Federal Policy Priorities 11 Alzheimer’s Treatment and Coverage Fact Sheet 14 Alzheimer’s Treatment and Coverage Background and Congressional Talking Points 15 NAPA Reauthorization Act and Alzheimer’s Accountability and Investment Act Fact Sheet 19 NAPA Reauthorization Act and Alzheimer’s Accountability and Investment Act Background and Congressional Talking Points 21 Comprehensive Care for Alzheimer’s Act Fact Sheet 24 Comprehensive Care for Alzheimer’s Act Background and Congressional Talking Points 25 Fiscal Year 2024 Alzheimer’s Research Funding Fact Sheet 29 BOLD Infrastructure for Alzheimer’s Act Fact Sheet 30 Increase the Commitment to Alzheimer’s Research & Public Health Response — Appropriations Priorities Background and Congressional Talking Points 31 2023 State Policy Priorities 36 State Advocacy 101 38 NEXT STEPS Ways to Say Thank You 39 Phone2Action Alert 402023 ALZHEIMER’S DISEASE FACTS AND FIGURES The lifetime risk for Alzheimer’s at age 45 is for women for men 1 in 10 1 in 5 Between 2000 and 2019, deaths from heart disease has decreased 7.3% while deaths from Alzheimer’s disease have increased 145 % More than 6 million Americans are living with Alzheimer’s seniors dies with Alzheimer’s or another dementia Over 11 million Americans provide unpaid care for people with Alzheimer’s or other dementias In 2023, Alzheimer’s and other dementias will cost the nation $ 345 billion $ 1 trillion By 2050, these costs could rise to nearly These caregivers provided more than 18 billion hours valued at nearly $ 340 billion It kills more than breast cancer prostate cancer combined While only 4 in 10 Americans talk to their doctor right away when experiencing early memory or cognitive loss, 7 in 10 would want to know early if they have Alzheimer’s disease if it could allow for earlier treatment. 1 in 3The number of Americans living with Alzheimer’s is growing — and growing fast. • Today, 6.7 million Americans are living with Alzheimer’s — 1 in 9 people aged 65 and older. • Nearly two-thirds of those with Alzheimer’s are women. • The number of people living with Alzheimer’s is expected to more than double to nearly 14 million by 2060. Many of those with dementia remain undiagnosed — in part because individuals are hesitant to speak to a health care provider in the earliest stages of memory or thinking problems. • In recent focus groups, individuals experiencing memory problems who had not talked to a provider cited concerns over reactions — from health care providers, employers, family members, and friends — as to why they did not raise memory issues with their physicians. • Many individuals believe the consequences of seeking help outweigh the benefits, particularly in the early stages of cognitive decline. • Feeling scared and/or anxious about a potential diagnosis often results in avoidance of conversations with providers. • Primary care providers are similarly hesitant to ask patients about memory or thinking problems, often waiting until family members raise the issue. 2023 Alzheimer’s Disease Facts and Figures MARCH 2023 alzimpact.org FACTSHEET Millions of Americans Aged 65 and Older with Alzheimer’s Physicians may also be hesitant to discuss memory problems because of shortages of medical specialists to whom they can refer patients. • In a new survey, more than 2 in 3 specialists said neurologists and geriatricians could most effectively diagnose and recommend treatments for Alzheimer’s disease, and nearly 80% said geriatricians were best suited for ongoing care. • However, 20 states have been dubbed “neurology deserts,” meaning they are projected to have fewer than 10 neurologists per 10,000 individuals with dementia in 2025. • And, the number of geriatricans will need to at least triple by 2050 to effectively care for those living with Alzheimer’s. 20302040205020602023 6.7 8.5 11.2 12.7 13.8The growing number of people living with Alzheimer’s is placing a huge strain on the health care system. • In 2023, the costs of caring for those with Alzheimer’s and other dementias will total an estimated $345 billion, with $222 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. Medicaid payments are 22 times higher. • The lifetime cost of care for individuals with Alzheimer’s is more than twice the amount incurred by individuals without Alzheimer’s. • Unless something is done, in 2050, Alzheimer’s will cost nearly $1 trillion (in 2023 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. Facts in Your State The 2023 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 2022, more than 11 million family members and friends of individuals living with dementia provided an estimated 18 billion hours of unpaid care, valued at nearly $340 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. • More than half of dementia caregivers reported high or very high emotional stress due to caregiving. More than 1 in 3 report high or very high physical stress from caregiving. • More than 30% of dementia caregivers reported depression, higher than among caregivers for other conditions such as stroke (19%). • Black, Hispanic, and Asian American dementia caregivers are less likely to have outisde or formal help and more likely to have depression and greater care demands compared with White caregivers. alzimpact.orgalz.org ® 2023 Costs of Alzheimer’s = $345 Billion Medicare $157B Medicaid $65B Out-of-Pocket $87B Other $37B7 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.8 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 background9 ENGAGING ELECTED OFFICIALS 10 TIPS AND TRICKS: MEETINGS WITH ELECTED OFFICIALS 1 COORDINATE, COORDINATE, COORDINATE Before the meeting, plan with your team on who will open the meeting, who will make introductions, who will make the asks, etc. 2 BE PREPARED For in-person meetings, make sure you’ve packed everything you need! Do you have any fact sheets or member materials you may need for the meeting? For virtual meetings, find a set-up where you feel comfortable and have our legislative priorities in front of you. Make sure you have good lighting and an appropriate background. A strong internet connection is critical for the meeting to run smoothly, so choosing a spot close to your internet router can help. Information sheets on each of our legislative priorities can be found at portal.alzimpact.org/ advocacy/resources. 3 SHOW UP EARLY As the saying goes, early is on time. If you are in-person, make sure to arrive 10-15 minutes early as you may have to go through security depending on the building. For virtual meetings, test the technology you will use with a friend to make sure you are ready to go. Try and dial in 3-5 minutes early, in case you have any issues joining. 4 LIMIT DISTRACTIONS Try to limit any distractions before the meeting. Make sure to silence your phone and turn off any alerts before the meeting starts. For virtual meetings, stay on mute while you are not speaking to make sure the meeting runs smoothly. 5 SHARE YOUR STORY The most important part of this meeting is you — your voice and your story are incredibly important. Try to tie your personal story to the asks. Personalizing our legislative priorities can help policymakers connect to our cause. 6 BE PASSIONATE & BE KIND Your passion is what sets you apart from the dozens of other meetings an office will have throughout the day. Don’t be afraid to stand out and be you. Showing your appreciation and saying “thank you” goes a really long way. This has been a challenging time for so many. Saying a few kind words throughout the meeting can make an impact and change the tone of the whole meeting. 7 SHOW YOUR SMILE Don’t forget to smile! As an organization, we always aim to be positive and make a good impression during our meetings. 8 DRESS TO IMPRESS Don’t forget to wear PURPLE! Business attire is not required for virtual meetings, but try to represent the Alzheimer’s Association if you can. For in-person meetings business casual is appropriate, and purple or other ways to represent the Alzheimer’s Association is always encouraged. 9 POST & SHARE Before you leave the meeting, ask the group if you can take a group photo/screenshot for social media. Make sure to tag the elected official and use #ENDALZ to connect the meeting to our community online. 10 FOLLOW UP After the meeting, make sure to tell us how it went at portal. alzimpact.org/advocacy/report. Let us know if Association staff need to follow up with the elected official and their staff.Next >