The COVID-19 pandemic fundamentally altered how elected officials interact with their constituents, but the Alzheimer’s Association and the Alzheimer’s Impact Movement (AIM), a separately incorporated advocacy affiliate of the Association, along with dedicated advocates, continued advancing critical federal and state policy priorities in FY20.
As a result of efforts led by the Association and AIM, a $350 million increase for Alzheimer’s and dementia research funding at the National Institutes of Health (NIH) was signed into law. Funding at the NIH is now $2.8 billion annually, a more than six-fold increase since the passage of the National Alzheimer’s Project Act (NAPA) in 2011. Longtime bipartisan congressional champions, including Sen. Roy Blunt (R-Mo.), Sen. Patty Murray (D-Wash.), Rep. Rosa DeLauro (D-Conn.) and Rep. Tom Cole (R-Okla.), were instrumental in securing this necessary increase. The bill also included $10 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.
Advocates executed a grassroots campaign to include key provisions of the Younger-Onset Alzheimer’s Disease Act in the reauthorization of the Older Americans Act (OAA), which was signed into law in March 2020. This important legislation, which ensures Americans living with dementia at any age will have access to the vital and affordable support services available through the OAA, was championed by Reps. Kathleen Rice (D-N.Y.) and Peter King (R-N.Y.) and Sens. Susan Collins (R-Maine) and Bob Casey (D-Penn.), and endorsed by the Association and AIM. The Association and advocates held hundreds of meetings with members of Congress to grow bipartisan support for the bill, leading to 233 cosponsors in the House and 41 in the Senate.
After careful consideration informed by guidance from the CDC and other experts, the Association announced the difficult decision to cancel the 2020 AIM Advocacy Forum due to the COVID-19 pandemic. The Association and AIM continued their efforts by pivoting to a virtual campaign that included thanking elected officials who work to protect vulnerable populations like those living with dementia.
Nursing homes and assisted living communities are on the frontlines of the COVID-19 crisis, since residents living with dementia are particularly susceptible to coronavirus due to their age, their significantly increased likelihood of coexisting chronic conditions and the community nature of these settings. The Association and AIM sounded the alarm on the issues impacting nursing homes and assisted living communities during the pandemic, urging policymakers to implement solutions to address the crisis. Guidance released by the Association provided a framework to enhance testing in long-term care communities, implement necessary reporting, develop protocols to respond to a rise in cases and ensure facilities have necessary equipment.
To ensure 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 worked with bipartisan members of Congress in April to develop and grow support for the Promoting Alzheimer's Awareness to Prevent Elder Abuse Act. This vital legislation was cosponsored by Sens. Susan Collins (R-Maine), Bob Menendez (D-N.J.) and Chuck Grassley (R-Iowa) and Reps. Ted Deutch (D-Fla.), Guy Reschenthaler (R-Pa.), Suzanne Bonamici (D-Ore.), Peter King (R-N.Y.), Maxine Waters (D-Calif.) and Chris Smith (R-N.J.). If signed into law, the bill would require 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. As of the end of the fiscal year, the bill had 18 cosponsors in the Senate — it was later passed unanimously in FY21 — and 227 in the House.
The Centers for Medicare & Medicaid Services began covering care planning services for individuals diagnosed with cognitive impairment in 2017, but the usage rate of this benefit remains drastically low. To ensure more people living with dementia receive the necessary care planning they need, the Association and AIM worked with bipartisan congressional champions to develop the Improving HOPE for Alzheimer’s Act. The legislation would require the U.S. Department of Health and Human Services to educate clinicians on care planning services available through Medicare, as well as to report on barriers to individuals receiving those services and how the rate of usage can be increased. At the close of FY20, the bill had support from 48 senators and 227 representatives.
To aid public health departments in tailoring their pandemic response, the Association collaborated with the Centers for Disease Control and Prevention (CDC) to host a four-part series about dementia-specific COVID-19 challenges. The webinars, which included presentations from CDC experts, addressed the unique needs of people living with dementia and their caregivers in community, hospital and long-term care settings. Nearly 4,500 participants attended from state public health departments.
One of the Association’s Long-Term Care Policy Recommendations is to designate Adult Protective Services (APS) workers and state long-term care ombudsmen as essential workers with access to personal protective equipment and authorization to enter long-term care facilities during the COVID-19 pandemic. Association staff worked with governors and state agency officials to implement this timely recommendation. In addition, as a result of the Association's efforts at the federal level, the U.S. Department of Health and Human Services announced in a letter to all governors that long-term care ombudsmen and APS workers, among others, should be deemed essential by all state governments.
The Association and AIM continued working to advance public policies at the state and local levels to improve the lives of all those affected by Alzheimer’s. In 2019, Association staff and advocates secured over million 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 4,600 meetings with officials.
In September 2019, the CDC awarded the Association another five-year cooperative agreement for the Healthy Brain Initiative (HBI), an effort to advance cognitive health as an integral component of public health. Throughout a 15-year partnership, the Association and the CDC have published three HBI Road Maps to guide the public health response to Alzheimer’s and other dementia. Over the next five years, the Association will 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 improve caregiving.
Eleven Association chapters began or enhanced partnerships with Tribal Nations and tribal health systems as part of a year-long innovation pilot to support implementation of the Healthy Brain Initiative Road Map for Indian Country. This companion to the most current HBI guidebook, State and Local Public Health Partnerships to Address Dementia: The 2018-2023 Road Map, is intended to stimulate public health approaches to Alzheimer’s in American Indian and Alaska Native communities. The Association also collaborated with national American Indian health organizations to continue cultivating the public health response to dementia for these communities.
In November 2019, the Association began promoting the updated A Public Health Approach to Alzheimer’s and Other Dementias, a free resource designed to help prepare the future public health workforce to address the Alzheimer’s crisis. Developed in partnership with the CDC and Emory University’s Rollins School of Public Health, the course helps advance implementation of the HBI Road Map.
Thanks to sustained efforts by the Association and AIM to improve the lives of all individuals living with Alzheimer’s, the U.S. House of Representatives passed the Palliative Care and Hospice Education and Training Act (PCHETA) in October 2019. Introduced in the House by Reps. Eliot Engel (D-N.Y.), Tom Reed (R-N.Y.), Yvette Clarke (D-N.Y.), Buddy Carter (R-Ga.), Frank Pallone (D-N.J.) and Greg Walden (R-Ore.), PCHETA would increase the availability and quality of care by establishing palliative care and hospice workforce training programs; creating a national education and awareness campaign about the benefits of palliative care and available services and supports; and enhancing research on improving the delivery of palliative care.
In early 2020, the Association completed a two-year data collection campaign on subjective cognitive decline and caregiving in which 47 states, the District of Columbia and Puerto Rico included the optional cognitive module in states’ Behavioral Risk Factor Surveillance System (BRFSS) surveys for 2019 or 2020. The Association launched a new two-year BRFSS campaign, with a goal of securing the optional caregiver module in states’ 2021 or 2022 BRFSS surveys.
Throughout FY20, 535 Alzheimer’s Congressional Teams (ACT) — one for every member of Congress — engaged with their targeted legislators, even without an in-person AIM Advocacy Forum and formal District-Forum-District program meetings. In total, 2,465 ACT members and 581 State Champions nationwide conducted thousands of meetings and related actions, which were all virtual after mid-March 2020.
With in-person meetings prohibited due to COVID-19, advocates and staff transitioned to online and digital efforts. The Association held 602 in-person and online events with members of Congress in FY20, including virtual meetings, tele-town halls and Coffees with Congress. Additionally, advocates submitted approximately 1,700 letters to the editor with more than 800 published in media outlets around the nation. Advocates also used digital platforms to connect with lawmakers, sending more than 100,000 emails and 8,500 tweets to congressional offices.