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Down Syndrome

and Dementia

Down Syndrome & Dementia Resources

The NTG has been involved in efforts to better advocate for supports to adults with Down syndrome and and their families and provide information on dementia assessment and supports. These are some publications and documents that may be of use.

Dementia in Mentally Disabled Hard to Identify
Dementia in Mentally Disabled Hard to Identify

Resource document

The National Task Group on Intellectual Disabilities and Dementia Practices consensus recommendations for the evaluation and management of dementia in adults with intellectual disabilities
The National Task Group on Intellectual Disabilities and Dementia Practices consensus recommendations for the evaluation and management of dementia in adults with intellectual disabilities

Resource document

Importance in Overall Health in Adults with Intellectual Disability and Dementia
Importance in Overall Health in Adults with Intellectual Disability and Dementia

Educational Presentation

CMS decision on Aduhelm: An Explainer by LuMind IDSC
CMS decision on Aduhelm: An Explainer by LuMind IDSC

Resource document

COVID-19 and Down Syndrome Resources Guide
COVID-19 and Down Syndrome Resources Guide

Resource document

NTG's FAQ on aducanumab and Down syndrome
NTG's FAQ on aducanumab and Down syndrome

Resource document

Aducanumab: Panacea or Risk for Adults with Down Syndrome
Aducanumab: Panacea or Risk for Adults with Down Syndrome

Conference presentation

Aducanumab and Persons with Down Syndrome: What Do We Do Now?
Aducanumab and Persons with Down Syndrome: What Do We Do Now?

Resource document

ISTAART Down Syndrome PIA Report on Research in 2020
ISTAART Down Syndrome PIA Report on Research in 2020

Reference

Evaluation of the National Task Group-Early Detection Screen for Dementia: Sensitivity to 'Mild Cognitive Impairment' in Adults with Down Syndrome
Evaluation of the National Task Group-Early Detection Screen for Dementia: Sensitivity to 'Mild Cognitive Impairment' in Adults with Down Syndrome

Journal article

Clinical and biomarker changes of Alzheimer’s disease in adults with Down syndrome: a cross-sectional study
Clinical and biomarker changes of Alzheimer’s disease in adults with Down syndrome: a cross-sectional study

Journal article

Further understanding the connection between Alzheimer’s disease and Down syndrome
Further understanding the connection between Alzheimer’s disease and Down syndrome

Journal article

Down syndrome disintegrative disorder: A clinical regression syndrome of increasing importance
Down syndrome disintegrative disorder: A clinical regression syndrome of increasing importance

Journal article

Regression and loss of skills in adolescents and adults with Down syndrome
Regression and loss of skills in adolescents and adults with Down syndrome

Resource video

New definition of unexplained regression in Down syndrome proposed
New definition of unexplained regression in Down syndrome proposed

Journal article

Unexplained regression in Down syndrome: 35 cases from an international Down syndrome database
Unexplained regression in Down syndrome: 35 cases from an international Down syndrome database

Journal article

Catatonia in Down syndrome: Systematic approach to diagnosis, treatment and outcome assessment based on a case series of seven patients
Catatonia in Down syndrome: Systematic approach to diagnosis, treatment and outcome assessment based on a case series of seven patients

Journal article

Regression in adolescents and adults with Down syndrome
Regression in adolescents and adults with Down syndrome


Book chapter

Booklet on Alzheimer's Disease and Down Syndrome
Booklet on Alzheimer's Disease and Down Syndrome

Caregiver resource guide

Aging and Down Syndrome: A Health & Wellbeing Guidebook
Aging and Down Syndrome: A Health & Wellbeing Guidebook

Caregiver resource guide

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