Acerca de la NTG

QUICK LINKS

Down Syndrome and Alzheimer's Disease

As adults with Down syndrome live longer, understanding their increased risk of Alzheimer’s disease has become an important part of supporting healthy aging. Down syndrome–associated Alzheimer’s disease, often called DS-AD, linked in part to an extra copy of chromosome 21, is the most prevalent expression of dementia associated with Down syndrome. Chromosome 21 carries a gene involved in the production of amyloid, a protein that can build up in the brain. Alzheimer’s-related brain changes may be present for years before noticeable symptoms appear, and the age at which symptoms develop and their progression vary among individuals.

Early signs of DS-AD may include changes in mood, personality, behavior, or the ability to manage familiar activities. Memory problems may also develop. Recognizing these changes requires knowing the person’s usual abilities and observing how they change over time. Other health conditions—including hearing or vision loss, thyroid problems, depression, and sleep disorders—can also affect functioning and should be considered during an evaluation. Seizures that begin in adulthood may also occur and warrant medical attention.

Although research into biomarkers and new treatments is advancing, further study is needed to determine how best to use them in adults with Down syndrome. Meanwhile, thoughtful health care, meaningful activities, adaptations to the person’s surroundings, and support for family and professional caregivers can help maintain well-being and quality of life.

The publications noted below are among many that explore these topics further, offering information for people with Down syndrome, families, service providers, and health professionals as they navigate aging, assessment, care, and planning.

Numerous organizations also 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.

Recursos sobre el síndrome de Down y la demencia

El NTG ha estado involucrado en varias publicaciones relacionadas con el síndrome de Down y el apoyo a la demencia. Navegue a través de la biblioteca de publicaciones de apoyo familiar a continuación.

Alzheimer’s Disease in Adults with Down Syndrome

Web-based article

Acerca de la NTG

Down Syndrome and Alzheimer's Disease

Recursos sobre el síndrome de Down y la demencia

Alzheimer’s Disease in Adults with Down Syndrome

Use of a screening tool for dementia in a Down syndrome specialty clinic

Down Syndrome and Dementia: A Guide for Families

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

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

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

Alternative diagnoses in the work up of Down syndrome regression disorder

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

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

Acute regression in Down syndrome

Down syndrome in a new era for Alzheimer Disease

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

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

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

Regression (Down Syndrome)

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

Dementia in Mentally Disabled Hard to Identify

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

Importance in Overall Health in Adults with Intellectual Disability and Dementia

Bibliography on Dementia Care Management and Intellectual Disability

CMS decision on Aduhelm: An Explainer by LuMind IDSC

COVID-19 and Down Syndrome Resources Guide

NTG's FAQ on aducanumab and Down syndrome

Aducanumab: Panacea or Risk for Adults with Down Syndrome

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

ISTAART Down Syndrome PIA Report on Research in 2020

Evaluation of the National Task Group-Early Detection Screen for Dementia: Sensitivity to 'mild cognitive impairment' in adults with Down syndrome

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

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

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

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

New definition of unexplained regression in Down syndrome proposed

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

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

Regression in adolescents and adults with Down syndrome

Booklet on Alzheimer's Disease and Down Syndrome

Aging and Down Syndrome: A Health & Wellbeing Guidebook

Acute regression in young people with Down syndrome

Rapid clinical deterioration in an individual with Down syndrome

Dementia in People with Intellectual Disability: Guidelines for Australian GPs

Noticias sobre el síndrome de Down y la demencia

Grupo Nacional de Trabajo sobre Discapacidades Intelectuales y Prácticas de Demencia