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

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What is Death?

Author: Adult Down Syndrome Center

This handout talks about death. It describes what it is and how it might make us feel.

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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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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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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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Lotion Options

Author: Adult Down Syndrome Center

Some people do not like the feeling of lotion or creams. This handout shows examples of lotions that can be used on wet skin and lotions that can be sprayed on skin.

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Let's Talk about Death: A Booklet about Death and Funerals for People with Down's Syndrome

Author: Down's Syndrome Scotland

This booklet for individuals with Down syndrome explains death using easy-to-read language. It is provided by Down's Syndrome Scotland (www.dsscotland.org.uk/resources/publications/).

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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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Skin Care Handout

Author: Adult Down Syndrome Center

This is a visual support that is based on the Skin Care video featuring Molly and Peter.

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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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Coping With Transitions, Loss, and Grief

Author: Melissa Levin, MSW, LICSW

This is a handout with information on coping with transitions (such as leaving high school, changes in family dynamics, etc.) and the feelings of loss and grief that can accompany these transitions.

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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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Seborrheic Dermatitis

Author: Pathik Patel, DO - Family Medicine Resident, Advocate Lutheran General Hospital

Skin disorders are common in individuals with Down syndrome. Seborrheic dermatitis is one of the more common skin problems. It is a chronic, relapsing form of dermatitis (inflammation of the skin) cha

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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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How to Shave with an Electric Razor Video

Author: Adult Down Syndrome Center - Video

In this video, Tim and Jim discuss and demonstrate the basic steps for shaving with and cleaning an electric razor.  If this video was helpful, you may be interested in the  Activiti

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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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Alopecia

Author: Naomi Roman, DO - Family Medicine Resident, Advocate Lutheran General Hospital

Several autoimmune diseases are more prevalent in people with Down syndrome (DS) including alopecia areata, a chronic immunological disorder that targets hair follicles and causes hair loss. When a pe

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Tips for Dealing with Dry Skin Video

Author: Adult Down Syndrome Center - Video

Dry skin is more common in people with Down syndrome. In the video below, Mary and June talk about dry skin and tips for managing it. Additional resources can be found in the Skin and Hair section of

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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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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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