LuMind IDSC Foundatiin and the NTG are collaborating on a project to aid in defining staging in dementia for adults with Down syndrome (DS). Alzheimer's disease (AD) in individuals with DS follows preclinical, prodromal, and advanced stages, like the general population. Detecting and monitoring changes from a baseline in cognitive and functional abilities is crucial for diagnosis and staging. Revised clinical criteria are being developed to better reflect the unique progression of AD in individuals with DS, potentially including a pre-preclinical stage (Stage 0) from birth.
The first element in this project was an international survey of clinicians and researches with respect to the utility of various tools that are in use to assess and diagnose dementia in adults with DS. The survey, published in Alzheimer's & Dementia, found that specialists utilize modified or specialized tests designed for individuals with ID and DS to assess cognitive function. Informant-based assessments, often completed by caregivers, are a common method for gathering information on behavioral and functional changes. Establishing a baseline of premorbid function, ideally by age 35 with annual screenings, is recommended. Diagnosis frequently involves a multidisciplinary team of specialists. Research into biomarkers and neuroimaging techniques is also underway to identify and track AD pathology. Recommended screening tools include the EDSD and DSQIID, while the CAMDEX-DS is suggested for more comprehensive assessments.
October 2024 - October 2025
LuMind IDSC Foundatiin and the NTG are collaborating on a project to aid in defining staging in dementia for adults with Down syndrome (DS). Alzheimer's disease (AD) in individuals with DS follows preclinical, prodromal, and advanced stages, like the general population. Detecting and monitoring changes from a baseline in cognitive and functional abilities is crucial for diagnosis and staging. Revised clinical criteria are being developed to better reflect the unique progression of AD in individuals with DS, potentially including a pre-preclinical stage (Stage 0) from birth.
The first element in this project was an international survey of clinicians and researches with respect to the utility of various tools that are in use to assess and diagnose dementia in adults with DS. The survey, published in Alzheimer's & Dementia, found that specialists utilize modified or specialized tests designed for individuals with ID and DS to assess cognitive function. Informant-based assessments, often completed by caregivers, are a common method for gathering information on behavioral and functional changes. Establishing a baseline of premorbid function, ideally by age 35 with annual screenings, is recommended. Diagnosis frequently involves a multidisciplinary team of specialists. Research into biomarkers and neuroimaging techniques is also underway to identify and track AD pathology. Recommended screening tools include the EDSD and DSQIID, while the CAMDEX-DS is suggested for more comprehensive assessments.