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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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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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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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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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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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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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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

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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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Alzheimer's Disease Prevention and Healthy Aging in People with Down Syndrome Webinar Recording (5/18/2022)

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

Title:  Alzheimer's Disease Prevention and Healthy Aging in People with Down Syndrome Date:  May 18, 2022 Presenter:  Brian Chicoine, MD Host Organization:  

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Considering Dignity of Risk in the Care of People with Intellectual Disabilities: A Clinical Perspective

Author: Chicoine & Kirschner - Perspectives in Biology and Medicine (2022)

Abstract The dignity of risk implies respect for individuals' right to make their own decisions, to participate in a broad range of desired activities, even if those activities have risk, and

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An Introduction to Benefits: Federal and State Programs Available in Illinois

Author: Suzanne Aaron, Information & Outreach Specialist - The Arc of Illinois, Illinois Life Span Program

In January 2022, Suzanne Aaron, an information & outreach specialist from the Illinois Life Span Program of the Arc of Illinois, presented a webinar called "An Introduction t

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Self-Talk in People with Down Syndrome Webinar Recording (11/10/2021)

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

The video below is a recording of a webinar presented by Brian Chicoine, MD on November 10, 2021. Dr. Chicoine is the co-founder and medical director at the Adult Down Syndrome Center. The topic of th

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Routines Involving Writing or Copying

Author: Brian Chicoine, MD - "Ask Dr. Chicoine" LuMind IDSC Foundation

We received the following question:  Have you ever seen cases in which a person with Down syndrome keeps writing in a journal all day? My loved one keeps on writing names of his favorite supe

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The Groove in People with Down Syndrome Webinar Recording (8/25/2021)

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

The video below is a recording of a webinar presented by Brian Chicoine, MD and Katie Frank, PhD, OTR/L on August 25, 2021. Dr. Chicoine is the medical director at the Adult Down Syndrome Center and D

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Changes in Self-Talk

Author: Brian Chicoine, MD - "Ask Dr. Chicoine" LuMind IDSC Foundation

We received the following question:  My teenage daughter self-talks. Recently, it has taken over. It’s like there is a continuous narrative involving movie and music stars, family,

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Mechanistic Analysis of Age-Related Clinical Manifestations in Down Syndrome

Author: Chen et al. - Frontiers in Aging Neuroscience (2021)

Abstract Down syndrome (DS) is the most common genetic cause of Alzheimer's disease (AD) due to trisomy for all or part of human chromosome 21 (Hsa21). It is also associated with other phenoty

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An Introduction to Developmental Disability Resources, Organizations, and Terms - Webinar Slides

Author: The Arc of Illinois - Presentation

In May 2021, the Arc of Illinois hosted a webinar called, "An Introduction to Developmental Disability Resources, Organizations, and Terms." It was a webinar for family members and c

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Use of Prolia to Treat Osteoporosis

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

We were asked a question about the use of Prolia to treat osteoporosis in individuals with Down syndrome. Osteoporosis is a condition in which a person's bones become brittle or weak. It can l

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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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