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For people with Down syndrome, family members, caregivers and professionals.

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When Down Syndrome and Autism Intersect (2nd edition)

Author: Margaret Froehlke, RN, BSN, and Robin Sattel, MS - Book (2024)

When Down Syndrome and Autism Intersect: A Guide to DS-ASD for Parents and Professionals       Publisher description The first edition of When Down Syndrome and Aut

Down Syndrome and Autism Spectrum Disorder Presentations

Author: Multiple Presenters - Multiple Organizations

The Dual Diagnosis of Down Syndrome and Autism Webinar   Presenters: Noemi Spinazzi, MD, FAAP, and Teresa Unnerstall Host Organization: Down Syndrome Connection of the Bay Area   Aut

Changes in Gait (Ambulation, Walking)

Author: Brian Chicoine, MD - Medical Director, Adult Down Syndrome Center

Key Points A change in gait (walking) is a change seen in many people with Down syndrome. There are many possible causes for those changes. Family or other observers can play a critical role in assess

Reducing Risk of Getting Alzheimer's Disease

Author: Brian Chicoine, MD - Medical Director, Adult Down Syndrome Center

Key Points Alzheimer's disease is more common in people with Down syndrome. Presently, we do not know how to prevent or cure Alzheimer's disease. We may lower the risk of developing Al

Resources for Siblings

Author: Adult Down Syndrome Center - Resource List

The resources in the Families and Caregivers  section of our Resource Library are intended for a broad audience of parents, siblings, friends, and caregivers of individuals with Down

Support Groups for Caregivers of Individuals with Down Syndrome and Alzheimer's Disease

Author: Various Organizations - Resource List

Alzheimer’s disease not only impacts the individual with the disease but also the individual’s family, friends, and caregivers. Several organizations provide in-person, online, and

Common Mental Health Disorders and Cognitive Decline in a Longitudinal Down Syndrome Cohort

Author: Idris et al. - BJPsych Open (2023)

Abstract Background:  Down syndrome is the most common genetic cause of intellectual disability and Alzheimer's disease. In the general population, common mental disorders (CMDs), inc

Regression in Persons with Down Syndrome

Author: Down Syndrome Medical Interest Group - USA - Current Consensus Update for Families

Regression in Persons with Down Syndrome: Current Consensus Update for Families   The Down Syndrome Medical Interest Group - USA (DSMIG-USA) developed a consensus update for families on Down

Immunotherapy Responsiveness and Risk of Relapse in Down Syndrome Regression Disorder

Author: Santoro et al. - Translational Psychiatry (2023)

Abstract Down syndrome regression disorder (DSRD) is a clinical symptom cluster consisting of neuropsychiatric regression without an identifiable cause. This study evaluated the clinical effectiveness

Emergency Preparedness Resources

Author: Adult Down Syndrome Center - Resource List

Recently, we were asked about emergency preparedness and safety resources for people with Down syndrome. We started to research the topic and found numerous resources that may be helpful to people wit

Health Benefits of Chores

Author: Katie Frank, PhD, OTR/L - Occupational Therapist, Adult Down Syndrome Center

Just thinking about chores can make us want to groan but doing chores can be beneficial for our physical and mental health. Doing chores is one way to incorporate more physical activ

Resources on Developing Greater Independence

Author: Adult Down Syndrome Center - Resource List

Becoming more independent is a goal for many adolescents and adults with Down syndrome. This goal may vary significantly from person to person. It can range from wanting to become more independent wit

Co-Occurring Conditions in Children with Down Syndrome and Autism: A Retrospective Study

Author: Spinazzi et al. - Journal of Neurodevelopmental Disorders (2023)

Abstract Background:  Down syndrome (DS) is one of the most common genetic causes of intellectual disability, and it is associated with an increased incidence of numerous co-occurring conditi

Regression & Down Syndrome

Author: National Down Syndrome Society - Website

The Regression & Down Syndrome page  on the National Down Syndrome Society's website has information about Down syndrome regression disorder including symptoms, treatment, and

Weight Loss and Alzheimer's Disease in Down Syndrome

Author: Fleming et al. - Journal of Alzheimer's Disease (2023)

Abstract Background:  Virtually all adults with Down syndrome (DS) develop Alzheimer's disease (AD) pathology, but research gaps remain in understanding early signs of AD in DS. Objec

Agitated or Challenging Behavior in People with Down Syndrome and Alzheimer's Disease

Author: Brian Chicoine, MD - Medical Director, Adult Down Syndrome Center

Agitated or challenging behavior can be a symptom that people with Down syndrome (DS) who have Alzheimer’s disease (AD) can have. When it occurs, careful assessment is important. An evaluati

Diagnostic Overshadowing: "All Is Not Down Syndrome"

Author: Brian Chicoine, MD - Medical Director, Adult Down Syndrome Center

Many families have reported that, when they have told a health care provider about a symptom their loved one with Down syndrome is experiencing, the provider has, in effect, said, “It is jus

Healthcare Experiences of Patients With Down Syndrome Who Are Black, African American, of African Descent, or of Mixed Race

Author: Krell et al. - American Journal of Medical Genetics Part A (2022)

Abstract Scant research has explored the healthcare experiences of people with Down syndrome (DS) in the United States who are Black, African American, of African descent, or of mixed race. The purpos

Bias in the Health Care System: Advocating for People with Down Syndrome Webinar (10/19/2022)

Author: Brian Chicoine, MD - Medical Director, Adult Down Syndrome Center

Brian Chicoine, MD, presented a webinar called "Bias in the Health Care System: Advocating for People with Down Syndrome" on October 19, 2022. The webinar was hosted by LuMi

Alzheimer's Disease Story

Author: Abby Rowley, LCSW - Licensed Clinical Social Worker, Adult Down Syndrome Center

The stories linked below were developed to help individuals with Down syndrome understand what Alzheimer's disease is and how Alzheimer's disease may affect someone i

People Living with Down Syndrome in the USA, Europe, Australia, and New Zealand: Births and Population

Author: deGraff, Buckley, and Skotko - Fact Sheets

The fact sheets linked below share estimates of the numbers of babies born and people living with Down syndrome in the United States and Europe.  USA Fact Sheet   Last updated Novemb

Decline in Skills and Regression in Adolescents and Adults with Down Syndrome Webinar Recording (8/31/2022)

Author: Brian Chicoine, MD - Medical Director, Adult Down Syndrome Center

The video below is a recording of a webinar presented by Brian Chicoine, MD of the Adult Down Syndrome Center. Individuals with Down syndrome may experience decline in skills for many reasons

Assessment and Diagnosis of Down Syndrome Regression Disorder: International Expert Consensus

Author: Santoro et al. (2022) - Frontiers in Neurology

Abstract Objective:  To develop standardization for nomenclature, diagnostic work up and diagnostic criteria for cases of neurocognitive regression in Down syndrome. Background:  The

Electroconvulsive Therapy, Catatonia, and Regression in People with Down Syndrome

Author: Brian Chicoine, MD - Medical Director, Adult Down Syndrome Center

Electroconvulsive therapy (ECT) is a treatment that involves sedating an individual with anesthesia and then inducing a seizure with a short electrical stimulation of the brain (more information can b

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Please note: The information on this site is for educational purposes only and is not intended to serve as a substitute for a medical, psychiatric, mental health, or behavioral evaluation, diagnosis, or treatment plan by a qualified professional. We recommend you review the educational material with your health providers regarding the specifics of your health care needs.

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