AFTD’s 2026 Policy Priorities

We support strong federal investment in research, development, and regulatory science to advance discovery, improve diagnosis, identify biomarkers, investigate environmental causes, and deepen our understanding of FTD through agencies such as the National Institutes of Health (NIH), the Food and Drug Administration (FDA), the Centers for Disease Control and Prevention (CDC), the Department of Defense (DoD), and more. We actively monitor, engage in, and inform the implementation of national initiatives such as the National Plan to Address Alzheimer’s Disease (NAPA), to ensure that FTD and related dementias are fully represented in research priorities and strategic planning. In addition, we advocate for policies that encourage innovation, strengthen collaboration across sectors, and foster the development of effective therapies and cures.

We support federal programs and policies that expand access to high-quality, affordable, and person-centered care for people living with FTD and related disorders. This includes advocating for legislation that would eliminate the two-year waiting period for Medicare coverage for individuals with FTD who qualify for disability benefits, ensuring that the implementation of federal programs account for the unique needs of people with non-Alzheimer’s dementia and their caregivers, and supporting initiatives like those established by the BOLD Infrastructure for Alzheimer’s Reauthorization Act and the Centers for Medicare and Medicaid Services’ (CMS) GUIDE Model, which aim to strengthen early detection, diagnosis, and the quality of care. We also work to ensure that public policy enables people to access clinical trials, genetic counseling, and testing, so they can make informed decisions about their care and emerging treatment options, while safeguarding individuals from genetic discrimination. Additionally, we support efforts to increase the availability and affordability of FTD-capable long-term care and support services, including respite care, in-home care, and residential care throughout the course of the disease.

We support federal initiatives, like urging for the passage of the Credit for Caring Act, that recognize and alleviate the financial, emotional, and practical challenges faced by family caregivers of individuals living with FTD. The organization supports national efforts to strengthen the framework of support for family caregivers and advocates for inclusive federal family leave policies that recognize and assist the diverse range of caregiving relationships. We also promote greater recognition of families affected by FTD in programs funded by federal aging services, ensuring that resources and supportive services are accessible to these families regardless of the age at diagnosis.

We educate lawmakers and federal agencies about FTD to ensure that the unique needs of this community are understood, addressed, and incorporated into policy. The organization advocates for the consistent inclusion of “related dementias” and, as appropriate, specifies FTD in national dementia policy, legislation, and funding initiatives, working to ensure that FTD is fully represented across federal planning and public health efforts.