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

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Helping an Individual with Down Syndrome Tolerate COVID-19 Testing

Author: Adult Down Syndrome Center - Resource List

*Please note: this article discusses viral testing used to diagnose if an individual currently has COVID-19. This article does not discuss antibody testing used to determine if an individual was expos

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Behavior Changes in Adolescents and Adults with Down Syndrome Webinar Recording (4/28/2020)

Author: Brian Chicoine, MD and Katie Frank, PhD, OTR/L - Webinar

The video below is a recording of a webinar presented by Brian Chicoine, MD and Katie Frank, PhD, OTR/L on April 28, 2020. Dr. Chicoine is the co-founder and medical director of the Adult Down Syndrom

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NTG - Early Detection and Screen for Dementia (NTG-EDSD)

Author: National Task Group on Intellectual Disabilities and Dementia Practices - Dementia Screening Tool

The National Task Group on Intellectual Disabilities and Dementia Practices (NTG) developed a screening tool called the NTG - Early Detection Screen for Dementia (NTG-EDSD). The NTG-EDSD&

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Non-Discrimination in Medical Treatment for COVID-19

Author: Adult Down Syndrome Center - Resource List

Reports of potential discrimination in medical treatment for individuals with intellectual and developmental disabilities have caused fear, anxiety, and anger within the Down syndrome community. Depar

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Refusal to Eat Solid Foods

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

We received a question about a person with Down syndrome who was refusing to eat solids. He was found to have dental disease. He needed several fillings and had a couple baby teeth removed. The dentis

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Living with Dementia: A Booklet About Dementia for Families and Carers of a Person with Down's Syndrome

Author: Down's Syndrome Scotland - Resource

This booklet about dementia for families and carers was developed by Down's Syndrome Scotland. It was designed to help in the care and support of a person with Down syndrome and dementia. &

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Let's Talk About Dementia: A Booklet About Dementia for Adults with Down's Syndrome

Author: Down's Syndrome Scotland - Resource

This easy read booklet about dementia for individuals with Down syndrome was developed by Down's Syndrome Scotland. It can be used to support people with Down syndrome who are developing demen

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Down Syndrome and Dementia: Advances in the Field

Author: McGlinchey et al. - Current Opinion in Psychiatry (2020)

Abstract Purpose of Review:  People with Down syndrome represent the world's largest population with a genetic risk for Alzheimer's disease. This review will provide a short s

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Ways to Be Active

Author: Adult Down Syndrome Center

This handout shows ways to incorporate physical activity and exercise into our daily lives.

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Post-Secondary Transition Resources

Author: Ann Garcia and Grace O'Connor - Patient Advocates, Adult Down Syndrome Center

This list of resources was compiled by Ann Garcia and Grace O'Connor, patient advocates at the Adult Down Syndrome Center. Some of these resources are specific to Illinois residents - they are

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Health Care Transition Resources

Author: Ann Garcia and Grace O'Connor - Patient Advocates, Adult Down Syndrome Center

The resources below can be used by individuals with Down syndrome, their families and caregivers, and their health care providers during the transition from pediatric to adult health care.  G

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Cancer Screening in Adults with Down Syndrome: A Proposal

Author: Rethore et al. - European Journal of Medical Genetics (2019)

Abstract Background : The specific distribution of cancers in Down syndrome (DS) calls into question the validity of screening policies for cancer surveillance as implemented for the general populatio

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Benefits and Harms of Mammography Screening for Women with Down Syndrome

Author: Alagoz et al. - Journal of General Internal Medicine (2019)

Abstract Background:  Women with Down syndrome have a lower breast cancer risk and significantly lower life expectancies than women without Down syndrome. Therefore, it is not clear whether m

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Alzheimer's Orientation Book

Author: Adult Down Syndrome Center

An orientation book can be used for people with Alzheimer’s disease or dementia to help them remember things about their daily life.

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Course of Alzheimer Disease in People with Down Syndrome

Author: Chicoine, Dominiak, McGuire, Bilodeau

This is a poster that describes a small chart review study on Alzheimer's disease and Down syndrome done at the Adult Down Syndrome Center.

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Exercises You Can Do at Home

Author: Adult Down Syndrome Center

This visual shows pictures of and describes exercises you can do at home without exercise equipment.

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Keeping Connected to Someone with Memory Loss

Author: All Trust Home Care

This two-page resource provides ideas for staying connected to someone who is experiencing memory loss.

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Seizures in People with Down Syndrome and Alzheimer's Disease

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

We were sent a question about seizures in a person with Down syndrome who developed Alzheimer’s disease. The individual continued to experience seizures despite being treated with l

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Alternatives to Workshops

Author: Ann Garcia and Grace O'Connor - Patient Advocates, Adult Down Syndrome Center

Some of these resources are specific to the greater Chicagoland area and/or Illinois. If you are looking for resources in another region, we recommend reaching out to a local Down syndrome parent orga

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The Pattern of Malignancies in Down Syndrome and Its Potential Context with the Immune System

Author: Satge & Seidel - Frontiers in Immunology (2018)

Abstract The immune surveillance theory of cancer posits that the body's immune system detects and destroys randomly occurring malignant cells. This theory is based on the observation of the i

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Colon Cancer Screening for People with Down Syndrome

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

Is colon cancer screening recommended for people with Down syndrome? Please note that this handout discusses screening colonoscopies (i.e. colonoscopies performed to identify pre-symptomatic or unreco

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Trisomy 21 Toolkit for Transitioning to Adult Medical Care

Author: Children's Hospital of Philadelphia - Trisomy 21 Toolkit for Transitioning to Adult Medical Care

The Trisomy 21 Toolkit for Transitioning to Adult Medical Care outlines steps individuals with Down syndrome or other intellectual disabilities can take toward building independence, planning for the

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Strength Training in Adults with Down Syndrome

Author: Maura Fitzpatrick-Kissick, DO - Family Medicine Resident, Advocate Lutheran General Hospital

Before starting an exercise program, we recommend discussing it with your health care provider. Strength is one part of fitness that helps keep you healthy and strong. Strength can h

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Mammograms

Author: Sravanthi Paritala, MD - Family Medicine Resident, Advocate Lutheran General Hospital

What is a mammogram? A mammogram is a special type of x-ray that looks for breast cancer, which is the most common cancer among women. The United States Preventive Services Task Force (USPSTF) recomme

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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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