A unified approach to Alzheimer's: Key legislative wins for 2024
Caring.com reports on the evolving legislative approach to Alzheimer's in 2024 and beyond.
A unified approach to Alzheimer's: Key legislative wins for 2024
Updated
In 2024, Congress made significant strides in addressing the growing challenges posed by Alzheimer's disease and related dementias with the passage of two landmark laws: the NAPA Reauthorization Act (P.L. 118-92) and the Alzheimer's Accountability and Investment Act (P.L. 118-93).
Together, these bipartisan measures build on over a decade of progress, ensuring a continued national focus on advancing Alzheimer's research, improving care systems, and supporting affected families and dementia caregivers. With millions of Americans impacted by Alzheimer's, these laws signal a renewed commitment to tackling this pressing public health crisis, Caring.com reports.
Key Takeaways
- In 2022, Alzheimer's was the seventh leading cause of death in the United States.
- The NAPA Reauthorization Act extends the National Alzheimer's Plan through 2035, prioritizing healthy aging, risk reduction, and equitable care while expanding the Advisory Council to include key federal agencies like the DOJ and FEMA.
- The Alzheimer's Accountability and Investment Act ensures sustained funding for Alzheimer's research by requiring the NIH to submit an independent annual budget directly to Congress, aligning resources with research priorities.
- Both laws reflect a bipartisan commitment to advancing Alzheimer's research, improving care systems, and supporting caregivers and families impacted by dementia.
What Is the NAPA Reauthorization Act?
Thanks to the dedication of Alzheimer's research advocates and bipartisan support in Congress, the NAPA Reauthorization Act (P.L. 118-92) was signed into law in October 2024. Building on over a decade of progress, this legislation reauthorizes the National Alzheimer's Project Act (NAPA) (P.L. 111-375). NAPA was first enacted in 2011, transforming how the nation tackles Alzheimer's and other dementias.
The Act addresses the growing challenges of Alzheimer's disease and related dementias by promoting federal coordination, advancing research, and improving care and services. The current reauthorization proposal, introduced as House Bill 619 in the 118th Congress, seeks to extend the National Alzheimer's Project through 2035 while refining its scope to prioritize healthy aging and reducing risk factors for cognitive decline.
The NAPA Reauthorization Act also aims to expand the Advisory Council on Alzheimer's Research, Care, and Services by including representatives from the Department of Justice, or DOJ, and the Federal Emergency Management Agency, or FEMA, ensuring a more comprehensive approach to addressing Alzheimer's and its impact on public systems.
The goal of the reauthorization is to ensure sustained focus, improved coordination, and enhanced efforts to combat Alzheimer's and related conditions in the years ahead.
Impacts of the NAPA Reauthorization Act
- Extension of the National Alzheimer's Plan through 2035
- Incorporation of healthy aging and risk reduction strategies
- Expansion of the Advisory Council to include DOJ, FEMA, and SSA representatives
- Increased focus on addressing health disparities among underrepresented populations
- Strengthening of interagency coordination across federal agencies
- Enhanced support for caregivers with improved access to resources and services
- Renewed national commitment to combating Alzheimer's disease and related dementias
What Is the Alzheimer's Accountability and Investment Act?
The Alzheimer's Accountability and Investment Act (Public Law 118-93), enacted on October 1, 2024, mandates that the National Institutes of Health (NIH) annually submit a budget estimate directly to the president, detailing the resources required to implement initiatives under the National Alzheimer's Project Act.
This estimate, starting in fiscal year 2024, includes personnel needs and is transmitted to Congress without alterations from the Department of Health and Human Services or the Advisory Council on Alzheimer's Research, Care, and Services. The Alzheimer's Accountability and Investment Act strives to ensure transparent and direct communication of the NIH's requirements to address Alzheimer's disease and related dementias effectively.
Impacts of the Alzheimer's Accountability and Investment Act
- Ensures sustained federal funding for Alzheimer's research through 2035
- Mandates the National Institutes of Health (NIH) to submit an annual budget directly to Congress and the President
- Aligns funding requests with scientific and medical priorities for Alzheimer's research
- Eliminates political interference in NIH's budget process for Alzheimer's initiatives
- Improves transparency in how resources are allocated to address Alzheimer's and related dementias
- Accelerates research into treatments, prevention, and care strategies
- Provides a stronger foundation for tracking progress and outcomes in Alzheimer's research and initiatives
Why Were These Laws Passed?
Both the NAPA Reauthorization Act and the Alzheimer's Accountability and Investment Act address the growing public health crisis posed by Alzheimer's disease and related dementias.
According to the Alzheimer's Association and the Centers for Disease Control, approximately 6.9 million Americans aged 65 and older are living with Alzheimer's. In 2022, Alzheimer's was the seventh leading cause of death, resulting in 120,122 fatalities nationwide.
The economic burden of dementia is substantial, with care costs projected to reach $360 billion in 2024. And that's just the tangible cost of dementia care; family caregivers provided nearly $350 billion worth of unpaid care in 2023. According to Caring.com's 2024 dementia care study, 75% of dementia caregivers report that finances somewhat or significantly impact whether their loved one gets care in a memory care facility or at home. Without advancements in treatment, the total cost of care is expected to approach $1 trillion by 2050.
The NAPA Reauthorization Act builds on the foundational National Alzheimer's Project Act of 2011 by extending the National Plan through 2035. The reauthorization emphasizes healthy aging, risk reduction, and health equity.
The NAPA Reauthorization Act also expands the Advisory Council on Alzheimer's Research, Care, and Services to include representatives from the Department of Justice, Federal Emergency Management Agency, and other key agencies, acknowledging dementia's wide-ranging impact on legal systems, emergency management, and social services.
The Alzheimer's Accountability and Investment Act, in particular, ensures the National Institutes of Health, or NIH, can request and secure funding directly aligned with the scientific needs of Alzheimer's research. As part of the Alzheimer's Accountability and Investment Act, the NIH gets an independent annual budget submission that goes directly to Congress for approval. This more direct budget process could speed up research time.
Together, these laws reflect a unified, bipartisan commitment to improving Alzheimer's care, advancing research, and addressing the growing impact of dementia across diverse communities nationwide.
These laws were championed by bipartisan congressional leaders, including Senators Susan Collins (R-Maine) and Ed Markey (D-Mass.), and Representatives Paul Tonko (D-N.Y.) and Chris Smith (R-N.J.). Advocacy organizations such as the Alzheimer's Association and the Alzheimer's Impact Movement (AIM) were pivotal in advancing the legislation, mobilizing grassroots support, engaging policymakers, and highlighting the urgent need for federal action.
What Do These Laws Mean for Seniors and Caregivers?
The NAPA Reauthorization Act and the Alzheimer's Accountability and Investment Act provide critical benefits for caregivers and their seniors living with Alzheimer's or related dementias. These laws reflect a comprehensive national effort to improve care, advance research, and support families impacted by these conditions.
For seniors, the NAPA Reauthorization Act extends the National Alzheimer's Plan through 2035, emphasizing healthy aging and risk reduction to delay or prevent cognitive decline. By adding federal agencies like the Department of Justice and Federal Emergency Management Agency to the advisory council, the law ensures broader systems are better equipped to address dementia-related challenges. These measures improve access to resources and create safer, more supportive environments for seniors.
For caregivers, these laws focus on reducing health disparities and increasing access to tailored support services. The Alzheimer's Accountability and Investment Act guarantees sustained funding for Alzheimer's research by requiring the National Institutes of Health to submit an annual budget directly to Congress, ensuring alignment with scientific priorities. This funding accelerates research into better treatments and care strategies while streamlining systems to reduce the financial and emotional strain on families.
Perhaps most importantly, these laws represent a national commitment to addressing Alzheimer's disease, providing hope for improved care, innovative treatments, and comprehensive support for those affected.
Bottom Line
The NAPA Reauthorization Act and Alzheimer's Accountability and Investment Act, passed in 2024, address the growing challenges of Alzheimer's disease and related dementias. The NAPA Reauthorization Act extends the National Plan through 2035, emphasizing healthy aging, risk reduction, and equitable care while expanding the Alzheimer's Advisory Council to include key federal agencies like the DOJ and FEMA. The Alzheimer's Accountability and Investment Act ensures sustained funding by requiring the NIH to submit an independent annual budget directly to Congress, aligning resources with research needs. Together, these laws advance research, improve care systems, and provide critical support for seniors and caregivers.
Methodology
In drafting this report, Caring.com pulled information and data from the National Center for Health Statistics, H.R. 619 - NAPA reauthorization act, H.R. 620 - Alzheimer's accountability and investment act, Alzheimer's Impact Movement, and the Alzheimer's Association.
This story was produced by Caring.com and reviewed and distributed by Stacker.
Originally published on caring.com, part of the BLOX Digital Content Exchange.
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