NDSS Praises NIA and Alzheimer’s Association for Updated Clinical Guidelines, Stresses Vital Inclusivity
Washington, D.C. (September 5, 2023) – The National Down Syndrome Society (NDSS) extends its gratitude in a letter submitted to the National Institute on Aging (NIA) and the Alzheimer’s Association for their collaborative revision of the Alzheimer’s Disease Clinical Guidelines. NDSS empowers individuals with Down syndrome and their families by driving policy change, providing resources, engaging with local communities, and shifting public perceptions.
"We commend the NIA and the Alzheimer's Association for enhancing the clinical guidelines for Alzheimer’s disease,” said NDSS President and CEO Kandi Pickard. “Including the Down syndrome community in these guidelines is a crucial step towards accurate diagnoses, improved treatment access, and instilling hope within our community."
The proposed Section 5.2 introduces a novel stage, Stage 0, acknowledging the unique genetic vulnerability of individuals with Down syndrome (Trisomy 21) to Alzheimer’s disease. This emphasizes the need for objective diagnostic biomarkers to counter diagnostic overshadowing, thereby supporting evidence-based interventions.
Individuals with Down syndrome face a lifetime risk exceeding 90% of developing Alzheimer’s disease, with earlier onset and faster progression. Yet, shared observable traits often lead to misdiagnosis, delaying proper care.
The revised guidelines offer the potential to:
- Enhance Education, Diagnostic Accuracy, and Access: Specific diagnostic criteria for individuals with Down syndrome who develop Alzheimer’s disease will empower clinicians, researchers, and families to understand the connection between Down syndrome and Alzheimer’s disease, fostering equitable access to treatments and trials.
- Elevate the Status: The proposed criteria encourage research into tailored treatments, potentially revolutionizing Alzheimer’s care and improving outcomes for those with Down syndrome.
- Shift the Narrative: The guidelines inspire hope, transforming Alzheimer's disease from an inevitability to a potentially treatable condition, reshaping the narrative around Down syndrome and Alzheimer’s disease.
NDSS is appreciative of the Alzheimer's Association, the NIA, and the entire working group in their mission to redefine Alzheimer’s diagnostic approaches within the Down syndrome community. The organization remains dedicated to ensuring all individuals with Down syndrome are assured their human rights and valued by a more inclusive society.
About NDSS:
Founded in 1979, the National Down Syndrome Society (NDSS) empowers individuals with Down syndrome and their families by driving policy change, providing resources, engaging with local communities, and shifting public perceptions. NDSS engages grassroots advocates at the federal, state, and local levels and creates resources to support individuals with Down syndrome, their families, and caregivers across the lifespan on topics including education, employment, health and wellness, and aging. NDSS founded the National Buddy Walk® Program in 1995 and hosts community engagement events throughout the country including the New York City Buddy Walk® and Times Square Video, the NDSS Adult Summit, and the Down Syndrome Advocacy Conference. Visit www.ndss.org to learn more.