This article originally appeared in the 2021 Impact Report. Become a member today to get access to additional exclusive content, meetings and insights into the Alzheimer’s and dementia public policy community.
Throughout the 116th Congress, AIM continued to advance bipartisan policies that increased investment in Alzheimer’s and other dementia research, enhanced care and improved support.
Prioritizing Medical Research
In December 2020, Congress passed a $300 million increase in Alzheimer’s and dementia research funding at the National Institutes of Health (NIH). The increase was advocated for by AIM, the Alzheimer’s Association and a network of passionate advocates. With this increase, annual Alzheimer’s and dementia research funding at the NIH is $3.1 billion, a seven-fold increase since 2010.
“This sustained commitment by the federal government has allowed dementia researchers to lay the foundation for breakthroughs in treatment, prevention and ultimately, a cure,” says Rachel Conant, AIM and Alzheimer’s Association vice president of federal affairs. “There is real momentum in the field because of the investments the NIH is making. We’re grateful to the advocates and Congressional leaders on both sides of the aisle that have helped make these advances possible.”
Congress also approved $15 million to implement the Building Our Largest Dementia (BOLD) Infrastructure Act. AIM worked with bipartisan Congressional champions during the 115th Congress to pass BOLD, which will enhance and improve our nation’s public health response to the Alzheimer’s crisis. The law creates three Public Health Centers of Excellence, provides funding to state, local and tribal public health departments to implement effective Alzheimer's interventions, and increases data analysis and timely reporting on cognitive decline, caregiving, and health disparities at the state and federal level. In September 2020, the Centers for Disease Control and Prevention (CDC) selected the Alzheimer’s Association as the BOLD Public Health Center of Excellence (PHCOE) on Dementia Risk Reduction. The Association will lead a nationwide effort to develop and disseminate public health strategies and resources aimed at reducing risk of cognitive decline and dementia.
Ensuring Access to Care Regardless of Age
While many view Alzheimer’s as a disease that afflicts grandfathers, grandmothers, and other older adults, in America an estimated 200,000 people under the age of 65 are currently living with the disease. People with younger-onset Alzheimer's face unique challenges when it comes to family, work and finances. Yet for too long, because of their young age, people with younger-onset Alzheimer’s were not eligible for support and service programs available to older Americans.
To address this discrepancy, AIM worked with bipartisan Congressional champions to develop the Younger-Onset Alzheimer’s Disease Act. AIM and our advocates generated quick bipartisan and bicameral support to ensure all Americans living with dementia have access to vital and affordable services regardless of age.
In March 2020, Congress passed the Supporting Older Americans Act of 2020 — which reauthorizes the Older Americans Act (OAA) — with the inclusion of the Younger-Onset Alzheimer’s Disease Act. Now individuals living with dementia under the age of 60 can access programs and services available through the OAA, including nutritional services, supportive services, and respite care through the National Family Caregiver Support program.
Protecting Against Abuse
To ensure professionals in the health care, social services and criminal justice systems are better equipped to work with people living with Alzheimer’s, AIM developed bipartisan Congressional support for the Promoting Alzheimer's Awareness to Prevent Elder Abuse Act.
The bill requires the Department of Justice to develop training materials that assist professionals supporting individuals with Alzheimer’s and other dementias who are victims of abuse. 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.), the bill quickly gained support with 28 Senate and 79 House cosponsors, and passed both chambers unanimously. In December 2020, the bill was signed into law.
“The speed with which we grew support for this legislation — and during a pandemic — is a testament to the passion and determination of our advocates,” says Robert Egge, AIM executive director and Alzheimer’s Association chief public policy officer. “It also speaks to the influence of AIM. We’ve demonstrated to Congressional leaders that our work yields results for their constituents, for the Alzheimer’s community and for them.”
Educating Providers About Care Planning
For individuals living with Alzheimer's and their caregivers, care planning is essential for learning about medical and non-medical treatments, clinical trials, and the support services available in their communities. 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 Alzheimer’s 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 report on barriers to individuals receiving those services and how the rate of usage can be increased. Advocates built support for the bill, and at the close of the 116th Congress the bill had support from 48 senators and 241 representatives.
In December 2020, the Improving HOPE for Alzheimer’s Act was signed into law.
AIM and the Alzheimer’s Association along with its advocacy volunteer corps is ready to work with the 117th congress and continue to advance policies to improve the lives of those living with Alzheimer’s disease and other dementias.