While the majority of FY21 advocate engagement took place online due to the COVID-19 pandemic, the Association and the Alzheimer’s Impact Movement (AIM), a separately incorporated advocacy affiliate, along with dedicated advocates, worked to advance critical federal and state policy priorities.
A $300 million increase for Alzheimer’s and dementia research funding at the National Institutes of Health (NIH) was signed into law, thanks in large part to the relentless efforts of the Association and AIM. Funding at the NIH is now $3.2 billion annually, a more than seven-fold increase since the passage of the National Alzheimer’s Project Act (NAPA) in 2011. The increase was driven by longtime bipartisan congressional champions, including Sen. Roy Blunt (R-Mo.), Sen. Patty Murray (D-Wash.), Rep. Tom Cole (R-Okla.) and Rep. Rosa DeLauro (D-Conn.). The bill also included $15 million to implement the Building Our Largest Dementia (BOLD) Infrastructure for Alzheimer’s Act, an important step toward acknowledging and addressing Alzheimer’s as a widespread public health crisis.
Clinicians will receive knowledge and tools to better serve people living with dementia and their families through the Improving HOPE for Alzheimer’s Act, which was signed into law. The bipartisan legislation was introduced by Sens. Debbie Stabenow (D-Mich.), Susan Collins (R-Maine), Ed Markey (D-Mass.), Shelley Moore Capito (R-W. Va.) and Bob Menendez (D-N.J.), and Reps. Paul Tonko (D-N.Y.), Jackie Walorski (R-Ind.), Earl Blumenauer (D-Ore.), Brett Guthrie (R-Ky.), Maxine Waters (D-Calif.) and Chris Smith (R-N.J.). AIM advocates grew support for the bill, resulting in nearly half of the Senate and over 200 members of the House cosponsoring the legislation.
The Promoting Alzheimer’s Awareness to Prevent Elder Abuse Act was signed into law, ensuring that professionals throughout health care, social services and criminal justice systems are better equipped to work with people living with Alzheimer’s and identify at-risk individuals. The Association and AIM developed and grew bipartisan support for the legislation, which requires the Department of Justice to develop training materials to assist professionals supporting individuals living with Alzheimer’s and other dementias who are victims of abuse. The act was introduced by Sens. Susan Collins (R-Maine), Bob Menendez (D-N.J.) and Chuck Grassley (R-Iowa), and Reps. Ted Deutch (D-Fla.) and Guy Reschenthaler (R-Pa.).
With the start of a new Congress in January, the Association and AIM continued to work with lawmakers to advance policies to improve the lives of all affected by dementia, including the Comprehensive Care for Alzheimer’s Act. The bipartisan legislation asks the Center for Medicare and Medicaid Innovation (CMMI) to test a different payment structure for dementia care management. The Comprehensive Care for Alzheimer’s Act has the potential to streamline today’s complicated health care maze for people living with dementia and their caregivers.
Working with experts, the Association and AIM developed a dementia care management framework that creates a capitation and performance-based payment structure for reimbursing providers that can be readily tested by CMMI. The key elements of the framework include coordinated care management, caregiver inclusion and widespread applicability. The framework is the basis for the Comprehensive Care for Alzheimer’s Act, and its key elements are highlighted in the legislation.
To increase clinical trial participation in underrepresented populations, the Association and AIM backed the introduction of the bipartisan Equity in Neuroscience and Alzheimer’s Clinical Trials (ENACT) Act. Introduced by Sens. Ben Ray Luján (D-N.M.) and Susan Collins (R-Maine), and Reps. Lisa Blunt Rochester (D-Del.), Jaime Herrera Beutler (R-Wash.), Chris Smith (R-N.J.), John Curtis (R-Utah) and Maxine Waters (D-Calif.), this legislation would expand education and outreach to underrepresented communities, encourage diversity in clinical trial staff and reduce participation burden.
The Alzheimer’s Caregiver Support Act was introduced to offer relief for millions of dementia caregivers nationwide. Endorsed by the Association and AIM, this bipartisan legislation seeks to provide grants to expand training and support services — including support groups, education and skills-training sessions — for unpaid caregivers of people living with Alzheimer’s or another dementia. This bill is led by Reps. Maxine Waters (D-Calif.) and Chris Smith (R-N.J.), and Sens. Amy Klobuchar (D-Minn.) and Susan Collins (R-Maine).
COVID-19 continues to create additional challenges for people living with dementia, their families and caregivers — particularly those in long-term care settings. The Association urged state and federal policymakers to implement new policy solutions to address the ongoing issues impacting care communities during the pandemic, including prioritizing the nation’s most vulnerable populations during the vaccine rollout. The Association also asked advocates to share their personal stories related to COVID-19 in long-term care settings.
The Association-led COVID-19 Testing and Social Isolation campaign called on governors to address social isolation in residential long-term care settings through the deployment of rapid, point-of-care tests. The campaign advocated that visitation can only safely resume once there is rapid point-of-care testing in place.
The Association submitted comments titled, “Improving the State and Federal Response to COVID-19 in Long-Term Care Setting” to the Commission on Safety and Quality in Nursing Homes. The commission, established by the Centers for Medicare & Medicaid Services and facilitated by the MITRE Corporation, will identify best practices to mitigate transmission of COVID-19 and other infectious diseases in nursing homes, and improve care delivery and responsiveness during emergencies.
Marking a decade of progress in the fight to make Alzheimer’s a national priority, the Association celebrated the 10-year anniversary of the National Alzheimer’s Project Act. Developed in partnership with bipartisan congressional champions, this landmark legislation led the way for additional policy victories — including the first National Plan to Address Alzheimer’s Disease, with the goal of preventing and effectively treating the disease by 2025.
For the health and safety of attendees, the 2021 AIM Advocacy Forum transitioned to a series of four virtual events, held between January and May, designed to empower attendees to engage in Alzheimer’s advocacy during a time with limited in-person opportunities. The first event celebrated the 10-year anniversary of NAPA and successes from the last Congress, followed by two training sessions focused on education and engagement for new policy priorities. The series culminated with the 2021 Advocacy Forum, featuring presentations from Association leadership, an awards ceremony, inspiring personal stories from advocates, and appearances from Association Celebrity Champions. Nearly 1,600 advocates participated in the event series and held 403 virtual congressional meetings.
Throughout FY21, 535 Alzheimer’s Congressional Teams (ACT) — one for every member of Congress — engaged with their legislators. In total, 2,174 ACT members and 689 State Champions nationwide conducted thousands of meetings and related actions, most of which took place virtually as a result of the COVID-19 pandemic.
The Association held 480 events with members of Congress, including virtual meetings, tele-town halls, Coffees with Congress and conversations at Walk to End Alzheimer’s. Additionally, advocates submitted approximately 1,700 letters to the editor, with nearly 40% published in media outlets around the nation. Advocates also used digital platforms to connect with lawmakers, sending nearly 100,000 emails and 11,200 tweets to congressional offices.
The Association’s Nationwide State Policy Priorities call for state governments to implement new or improved dementia training standards for all first responders. In an effort to provide quality education, the Association developed a training program on the basics of Alzheimer’s disease, communication, behaviors and safety risks for Adult Protective Services and community services workers who may come into contact with individuals living with dementia.
The Association and AIM continued to advance public policies at the state and local levels to improve the lives of all those affected by Alzheimer’s. Association staff and advocates made a substantial impact in securing significant state funding for Alzheimer’s-specific care and support services, research, public health activities, home and community-based services, and other areas to meet the needs of individuals and families living with dementia. Thousands of advocates participated in Advocacy Days across all 50 states and held more than 3,700 meetings with state officials.
To continue the advancement of cognitive health as an integral component of public health, the CDC awarded the Association another five-year cooperative agreement for the Healthy Brain Initiative. The Association will help accelerate state, tribal and local public health agencies’ use of evidence-informed strategies to reduce risk for cognitive decline, increase early detection, optimize quality of life and strengthen caregiving. The award also focuses on advancing health equity and includes individuals with intellectual and developmental disabilities.
The Association launched Promoting Caregiving Across the Full Community: The Role for Public Health Strategists, a new public health framework for dementia caregiving. Through the CDC Healthy Brain Initiative, the Association developed and distributed this action brief with public health agencies, encouraging them to serve as “health strategists.” In this role, they convene partners and caregivers for people living with Alzheimer’s to develop macro, 360-degree approaches to address inequitable access to supportive resources for caregiving. Six proposed policy strategies would significantly expand caregiving support in health care systems, workplaces and communities.