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

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A Change in Behavior in a Person with Down Syndrome and Alzheimer's Disease

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

A change in behavior is often noted in people with Down syndrome (DS) who have Alzheimer’s disease (AD). For some individuals, this is a natural part of the progression of AD. However, for o

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Regression in Down Syndrome Support Group

Author: Eileen Quinn, MD - Moderator

The link below takes you to a closed Facebook page for families, caregivers, and professionals who support individuals with Down syndrome who have experienced or are experiencing regression. If you cl

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Improving Alzheimer’s Diagnosis and Care for Adults with Down Syndrome Virtual Forum (9/26/2024)

Author: Brian Chicoine, MD, Seth Keller, MD, and Amy Kolb-Tucker - Stanford University School of Medicine, the Stanford Alzheimer's Disease Research Center, and National Task Group for Intellectual Disabilities and Dementia Practices

On September 26, 2024, a virtual forum on Alzheimer's disease and Down syndrome was held. Title:  Improving Alzheimer’s Diagnosis and Care for Adults with Down Syndrome: Opp

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Information on COVID-19 Booster Shots from the Adult Down Syndrome Center

Author: Brian Chicoine, MD, Erin Dominiak, MD, Hannah Graham, MD, and Farah Chaus, MD - Adult Down Syndrome Center

UPDATED MAY 2024 Recommendation The physicians at the Adult Down Syndrome Center recommend that individuals with Down syndrome ages 12 years and older who do not have a contraindication follo

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Breast Cancer and Breast Cancer Screening for Women with Down Syndrome

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

Key Points Breast cancer is less common in women with Down syndrome compared to women without Down syndrome. Currently, the recommendations for breast cancer screening are the same for women with and

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

Author: Down's Syndrome Scotland - Booklet

This easy read booklet about death for individuals with Down syndrome was developed by Down's Syndrome Scotland. It can be used to support people with Down syndrome after someone close to them

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When Staff Members Leave Story

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

When Staff Members Leave   This visual story explains why staff members may leave their job, how we might feel, and how to cope with the change. Additional visuals are available in the&nb

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Wearing My Hearing Aids Story

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

Wearing My Hearing Aids   This visual story explains why it is important to wear our hearing aids and describes when to wear our hearing aids and how to take care of them.  

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Coping with Grief Story

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

The visual below explains how we might feel when someone we care about dies and shares things we can do to help us cope.    Coping with Grief       &nb

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When a Pet Dies Visual

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

This visual explains what happens when a pet dies and how it might make us feel. When a Pet Dies   When a Pet Dies Everyone and everything that is alive dies at some point. When a pet dies, e

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Reducing Risk of Getting Alzheimer's Disease

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

Key Points Alzheimer's disease is more common in people with Down syndrome. Presently, we do not know how to prevent or cure Alzheimer's disease. We may lower the risk of developing Al

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Prostate Cancer Screening in Men with Down Syndrome

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

Key Points on Prostate Cancer Prostate cancer is one of the most common types of cancer in men. There is uncertainty about the potential benefits and risks of prostate cancer screening for men.&nb

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Dysgerminomas in Women with Down Syndrome

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

Key Points A dysgerminoma is a type of cancer that usually occurs in a woman's ovary. There is limited research on dysgerminomas in women with Down syndrome. It is not clear if dysgerminomas a

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Activities You Can Do at Home

Author: Adult Down Syndrome Center - Resource List

Are you looking for suggestions of activities you can do at home? We have compiled a list of some ideas below! There are ideas for arts and crafts , cooking , education/learning , fitness and physical

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Support Groups for Caregivers of Individuals with Down Syndrome and Alzheimer's Disease

Author: Various Organizations - Resource List

Alzheimer’s disease not only impacts the individual with the disease but also the individual’s family, friends, and caregivers. Several organizations provide in-person, online, and

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Common Mental Health Disorders and Cognitive Decline in a Longitudinal Down Syndrome Cohort

Author: Idris et al. - BJPsych Open

Abstract Background:  Down syndrome is the most common genetic cause of intellectual disability and Alzheimer's disease. In the general population, common mental disorders (CMDs), inc

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Grief and Loss Podcast Episodes

Author: Rose Reif, LCMHC, CRC, BC-TMH - Multiple Organizations

Rose Reif, a licensed clinical mental health counselor, certified rehabilitation counselor, and qualified developmental disability and mental health professional, has been featured on two podcast epis

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Getting Ear Wax Removed

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

This Getting Ear Wax Removed Visual    explains what happens when we get our ears cleaned out. This visual can help individuals with Down syndrome know what to expect when g

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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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Cerumen Impaction (Ear Wax Buildup)

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

Key Points Cerumen impaction is obstruction of the ear canal with ear wax. It is a problem that is more common in people with Down syndrome. There are treatments that can be done at home to prevent an

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Immunotherapy Responsiveness and Risk of Relapse in Down Syndrome Regression Disorder

Author: Santoro et al. - Translational Psychiatry

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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Hearing Loss in Adults with Down Syndrome

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

Overview of hearing loss Hearing involves several steps as the sound passes from the ear to the brain. The ear is divided into three parts: the outer, middle, and inner ear. Hearing impairment, which

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Cholesteatomas

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

What are cholesteatomas? A  cholesteatoma is a collection of skin cells that become more fibrous and build up in the middle ear (where the small bones are that are part of our hearing mechani

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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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