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

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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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Effect of Menopause on Cognition in Women with Down Syndrome?

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

What is the effect of menopause on cognition in women with Down syndrome? Menopause , defined as the cessation of menses (periods) for 12 months, occurs at a slightly younger age in women with Down sy

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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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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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Alzheimer's Disease & Down Syndrome: A Practical Guidebook for Caregivers

Author: National Down Syndrome Society - Resource

The guidebook linked below was published by the National Down Syndrome Society "to help empower families and caregivers with knowledge about the connection between Down syndrome and Alzheimer

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Clinical Aspects and Biomarkers of Alzheimer's Disease in Down Syndrome

Author: Zis & Strydom - Free Radical Biology & Medicine (2017)

Abstract Alzheimer's disease (AD) may affect in excess of 90% of individuals with Down syndrome (DS) after age 60, due to duplication of the APP gene in trisomy of chromosome 21, with neuropat

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Osteoporosis and Osteopenia: Low Bone Density

Author: Kevin Conley, MD - Family Medicine Resident, Advocate Lutheran General Hospital

Osteoporosis and osteopenia are conditions where bones become more brittle and prone to breaking. Osteopenia is the less severe form and a signal to work on improving bone health. Anyone can develop t

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Fit 5 Fitness Cards and Videos

Author: Special Olympics - Resource

The website linked here  contains downloadable cards and videos that feature Special Olympics athletes and provide visual demonstrations of endurance, strength, and flexibility exercises. The

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Dying Well with an Intellectual Disability and Dementia

Author: Service et al. - Journal of Dementia Care (2017)

Abstract Collaboration between palliative care, dementia care, hospice provision, and intellectual disability services is required rather than any one of these systems working in isolation. This is ne

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Exercise in People with Down Syndrome

Author: Kyle Yost, DO - Family Medicine Resident, Advocate Lutheran General Hospital

In the United States, obesity is on the rise. This is also true for individuals with Down syndrome. Individuals with Down syndrome are at a higher risk of becoming obese compared to the general popula

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Breast Cancer Screening for Women with Down Syndrome

Author: Chicoine et al. - Intellectual and Developmental Disabilities (2015)

Abstract This study examined mammogram reports of women with Down syndrome (DS) treated in the largest medical facility specifically serving adults with DS in the United States. Records of 684 women a

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Jenny's Diary: A Resource to Support Conversations about Dementia with People who have an Intellectual Disability

Author: Karen Watchman, Irene Tuffrey-Wijne, & Sam Quinn - University of Stirling

The resource linked below is a free to download booklet and set of postcards aimed at supporting conversations about dementia with people who have an intellectual disability. Access the Booklet &n

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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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