The LuMind IDSC Foundation and the National Task Group on Intellectual Disabilities and Dementia Practices are US-based, non-profit organisations advocating for services and supports for people with intellectual disability and their families who are affected by Alzheimer's disease (AD) and dementias. The organisations are currently working to build consensus around the clinical staging of Down syndrome-associated Alzheimer's disease (DS-AD), and have recently launched a survey to consolidate clinical perspectives on the staging of DS-AD, specifically focusing on Mild Cognitive Impairment in Down Syndrome (MCI-DS) and DS-AD dementia.
The Survey is part of an ongoing project that seeks to gather broad insights from clinicians and researchers across various specialities and sectors. Responses will help build consensus on how these conditions present in the clinic and will inform future research, clinical practice, and policy decisions. The survey, which should take around 30-45 minutes to complete, has a deadline of 10 September. The survey can be accessed here:
