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

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Increased Need for Services and Support

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

Key Points For people with and without Down syndrome, our needs may change as we age and/or develop health issues. The change in the needs may be temporary or permanent. There are a variety of ways to

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Tremors in People with Down Syndrome

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

Key Points Tremors are repetitive involuntary movements. Tremors can be mild and cause limited disruption or more severe and restricting. There are many causes for tremors. An evaluation by a health p

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A Comprehensive Review of the Relationship Between Oral Health and Down Syndrome

Author: Botero et al. - Current Oral Health Reports (2024)

Abstract Purpose of Review:  Individuals with Down syndrome (DS) may be more susceptible to oral disorders as a result of a combination of genetic factors, immunological disturbances, anatomi

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Aging in Adults with Down Syndrome Webinar Recording (1/29/2024)

Author: Brian Chicoine, MD, and Hannah Graham, MD - Adult Down Syndrome Center

Title:  Aging in Adults with Down Syndrome Date:  January 29, 2024 Presenters:  Brian Chicoine, MD and Hannah Graham, MD Host Organization:  Down's Syndrome

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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

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The Groove in People with Down Syndrome

Author: Brian Chicoine, MD and Katie Frank, PhD, OTR/L - Adult Down Syndrome Center

Key Points The groove is a preference for sameness, repetition, or routine. Many (but not all) people with Down syndrome have grooves. There are advantages and disadvantages to having grooves. Flexibi

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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

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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

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Aging and Down Syndrome: A Health & Well-Being Guidebook

Author: National Down Syndrome Society - Resource

The resource linked below is a guidebook from the National Down Syndrome Society. According to the Introduction, "Adults with Down syndrome, along with their families and caregivers, need acc

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Misunderstandings Caused by Different Perceptions

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

Sometimes, we are asked questions about individuals with Down syndrome who are said to be “lying” or “telling lies.” People with Down syndrome (just like people

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Psychogenic Non-Epileptic Seizures or Fake Seizures

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

We periodically get asked questions about “fake seizures.” They have also been called “pseudo-seizures” but are now more accurately called non-epileptic seizure

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Aging and Life Expectancy

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

Today, people with Down syndrome (DS) are living longer and healthier than any other time in the past. In 1900, the life expectancy of people with DS was 9 years. By 1984, the life expectancy

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Tips for Going Up and Down Stairs Safely

Author: Katie Frank, PhD, OTR/L and Abby Rowley, LCSW - Adult Down Syndrome Center

Going up and down stairs can be challenging for some people with Down syndrome. Aging, differences in depth perception, unsteady gait, and other issues may contribute to difficulty with navigating sta

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End-Of-Life and Down Syndrome Guidebook

Author: National Down Syndrome Society - Resource

The resource linked below is a guidebook from the National Down Syndrome Society (NDSS). According to the Introduction, the aim of the guidebook is to "provide guidance for the crossroads and

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Fear of Heights

Author: Brian Chicoine, MD and Abby Rowley, LCSW - Adult Down Syndrome Center

We have seen people with Down syndrome with a variety of phobias. Concern about heights is one we see more commonly. For this fear in particular, we often ask if it is indeed a phobia or if it is caus

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Brushing Teeth Visuals

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

The visuals under the headers remind us of the steps for brushing our teeth. Tap or click on the headers to find printable versions for electric and manual toothbrushes. There are also versio

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Self-Talk Visual

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

The visuals under the headers explain what self-talk is and why we use it. Tap or click on the headers to find printable versions for girls/women and boys/men. There are also versions for dif

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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

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Getting an EEG Visual

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

This Getting an EEG visual  explains what happens when we have an electroencephalogram (EEG) done. It can help individuals with Down syndrome know what to expect when going for an EEG. Additi

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Attention Deficit/Hyperactivity Disorder (AD/HD)

Author: Brian Chicoine, MD, and Dennis McGuire, PhD, LCSW - Adult Down Syndrome Center

*This article was adapted from  Mental Wellness in Adults with Down Syndrome: A Guide to Emotional and Behavioral Strengths and Challenges, 2nd Edition . What is attention-deficit/hyperactivi

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Resources on Executive Functioning and Down Syndrome

Author: Adult Down Syndrome Center - Resource List

Executive functioning (or executive function) describes skills and mental processes that enables us to set goals, make plans, and manage daily life. Working memory, flexible thinking, self-control, an

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Common Characteristics of Adolescents and Adults with Down Syndrome

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

"If you have met one person with Down syndrome, you have met one person with Down syndrome" is a sentiment often shared in the Down syndrome community. We certainly know this idea ap

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Advance Directives - Forms for Illinois Residents

Author: Illinois Department of Public Health - Website

An advance directive is a written statement you prepare that expresses how you want medical decisions made in the future should you not be able to make them yourself. Illinois law allows you

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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

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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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