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Down Syndrome and Dementia

Down Syndrome and Alzheimer's Disease

 

The association of Down syndrome and Alzheimer's disease has been noted for many years and Down syndrome is considered a major risk factor for the disease.  Numerous organizations have produced briefs on this association and guides for caregivers and others interested in knowing more.  A brief list of the national organizations and links to their sites is provided under the Quick Links box.​

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.

Down Syndrome and Dementia: A Guide for Families
Down Syndrome and Dementia: A Guide for Families

Caregiver resource guide

Dohsa‐hou for unexplained regression in Down syndrome in a 19‐year‐old man: A case report
Dohsa‐hou for unexplained regression in Down syndrome in a 19‐year‐old man: A case report

Journal article

Down syndrome regression disorder, a case series: Clinical characterization and therapeutic approaches
Down syndrome regression disorder, a case series: Clinical characterization and therapeutic approaches

Journal article

Assessment and diagnosis of Down syndrome regression disorder: International expert consensus
Assessment and diagnosis of Down syndrome regression disorder: International expert consensus

Journal article

Alternative diagnoses in the work up of Down syndrome regression disorder
Alternative diagnoses in the work up of Down syndrome regression disorder

Journal article

Adapting prescribing criteria for amyloid-targeted antibodies for adults with Down syndrome.
Adapting prescribing criteria for amyloid-targeted antibodies for adults with Down syndrome.

Journal article

The Link between Alzheimer’s Disease and Down Syndrome. A Historical Perspective
The Link between Alzheimer’s Disease and Down Syndrome. A Historical Perspective

Journal article

Acute regression in Down syndrome
Acute regression in Down syndrome

Journal article

Down syndrome in a new era for Alzheimer Disease
Down syndrome in a new era for Alzheimer Disease

Journal article

End-of-life and Down syndrome: A companion guidebook to aging and down syndrome: A health and well-being guidebook
End-of-life and Down syndrome: A companion guidebook to aging and down syndrome: A health and well-being guidebook

Resource guide

Regression in Persons with Down Syndrome: Current Consensus Update for Families
Regression in Persons with Down Syndrome: Current Consensus Update for Families

Resource document

Mental Wellness in Adults with Down Syndrome: A Guide to Emotional and Behavioral Strengths and Challenges (2nd Ed.)
Mental Wellness in Adults with Down Syndrome: A Guide to Emotional and Behavioral Strengths and Challenges (2nd Ed.)

Book

Regression (Down Syndrome)
Regression (Down Syndrome)

Book chapter

Markers of early changes in cognition across cohorts of adults with Down syndrome at risk of Alzheimer’s disease
Markers of early changes in cognition across cohorts of adults with Down syndrome at risk of Alzheimer’s disease

Journal Article

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

For more information on what has become to be referred to as 'Down syndrome regression' see our page on this topic.

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