AFTD’s 2025 Policy Priorities

Increase federal funding for bio-medical research to identify and verify accurate, accessible FTD diagnostic tools and biomarkers; develop medicines and therapies to treat FTD symptoms and prevent disease progression; and enable accurate estimates of the prevalence and incidence of FTD and identify potential environmental genetic risk factors.  

• National Alzheimer’s Project Act (NAPA) and National Plan to Address Alzheimer’s Disease - the federal strategy for reducing the burden of AD/ADRD, inclusive of FTD was signed into law 10/1/2024 for another 10 years.  AFTD will monitor and work to ensure that FTD research, care and support are explicitly addressed and included in the implementation of recommendations within NAPA.  

• Alzheimer's Accountability and Investment Act - establishes the Alzheimer’s Bypass Budget as part of NAPA. This allows the NIH to submit a professional budget request to Congress for the annual funding levels it needs to complete the research recommendations and priorities established in the National Plan to Address Alzheimer’s Disease. AFTD will advocate for the inclusion of funding of FTD research priorities within the annual budget.  

Advocate for the specific consideration of FTD disorders in policy and emerging models of dementia care, including for the collection and evaluation of data at the dementia subtype level and by age so that the equitable access and specific care needs of people with FTD or other non-Alzheimer’s dementia can be understood and addressed.  

• Medicare Two-year Wait - advocate to eliminate the two-year waiting period for Medicare coverage for individuals who qualify for full and permanent social security disability benefits due to any FTD disorder.  

• BOLD Infrastructure for Alzheimer’s Reauthorization Act – monitor and provide input on the Building Our Largest Dementia Infrastructure for Alzheimer’s Act to continue to strengthen the public health infrastructure and implement effective dementia interventions focused on increasing early detection and diagnosis, reducing risk, and preventing avoidable hospitalizations. 

• The Centers for Medicare and Medicaid Services’(CMS) GUIDE model - ensure that people under 65 and those with non-amnestic presentations of dementia are included and that the needs of people with FTD are addressed across the trajectory of disease progression including end-of-life care. This includes advocating that the evaluation of the GUIDE model be conducted at the dementia subtype level and by age so that the impact on people with FTD or non-Alzheimer’s dementia can be assessed.  

• Long-term Care Access and Appropriate Care - support greater affordability and accessibility of FTD-capable long-term care services and supports including respite care, in-home care, nursing and home health, adult day, short-term and long-term residential care. 

Increase financial support for family caregivers including caregiving tax-relief programs and paid family leave policies. An AFTD study showed that families dealing with FTD face an economic burden of around $120,000 each year and that 37% of FTD caregivers had to stop working post-diagnosis. 

• National Strategy to Support Family Care – in partnership with the National Alliance for Caregiving, support the National Strategy to Support Family Caregivers and the RAISE (Recognize, Assist, Include, Support, and Engage) Family Caregivers Act including advocating that any proposed federal family leave policies include all family caregivers and not just new parents  

• Older Americans Act - advocate for greater inclusion of and resources for families and individuals living with FTD in aging services and programs funded by the Older Americans Act regardless of age.  

• World FTD Awareness Week Resolution - introduce and pass a federal resolution to designate the last week of September as World FTD Awareness Week and participate in related activities driven by the advocate community.