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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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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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SLP, OT, PT for Down Syndrome: Supports Across the Lifespan

Author: Down Syndrome Medical Interest Group-USA - Therapy Workgroup

SLP, OT, PT for Down Syndrome   The Therapy Workgroup of the Down Syndrome Medical Interest Group-USA (DSMIG-USA) developed a resource (linked above) that describes how speech-language pathol

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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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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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Chore Chart

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

This  Chore Chart    has images and templates that can be used to create a weekly chore schedule and/or keep track of when chores are completed.    &nb

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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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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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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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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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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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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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Health Benefits of Chores

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

Just thinking about chores can make us want to groan but doing chores can be beneficial for our physical and mental health. Doing chores is one way to incorporate more physical activ

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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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Down Syndrome for the Otolaryngologist: A Review

Author: Zalzal & Lawlor - JAMA Otolaryngology - Head & Neck Surgery (2023)

Abstract Importance:  There are many features of Down syndrome that prompt referral to an otolaryngologist. As the lifetime prevalence and life expectancy of individuals with Down syndrome in

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Weight Loss and Alzheimer's Disease in Down Syndrome

Author: Fleming et al. - Journal of Alzheimer's Disease

Abstract Background:  Virtually all adults with Down syndrome (DS) develop Alzheimer's disease (AD) pathology, but research gaps remain in understanding early signs of AD in DS. Objec

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Alzheimer's Disease Story

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

The stories linked below were developed to help individuals with Down syndrome understand what Alzheimer's disease is and how Alzheimer's disease may affect someone i

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Therapeutic Use of Games

Author: Monica Prindiville, OTS and Katie Frank, PhD, OTR/L - Occupational Therapy Student and Occupational Therapist

While games are widely considered to be a meaningful and enjoyable activity, their therapeutic benefits can be easily overlooked. Games provide opportunities to work on a wide variety of skills we use

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Fun Activities to Improve Fine Motor Skills

Author: Monica Prindiville, OTS and Katie Frank, PhD, OTR/L - Occupational Therapy Student and Occupational Therapist

We use fine motor skills to complete any task that requires using the small muscles in our hands or wrists. This includes a wide variety of daily activities completed at home, work, and school: using

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Daily Tasks to Improve Fine Motor Skills

Author: Monica Prindiville, OTS and Katie Frank, PhD, OTR/L - Occupational Therapy Student and Occupational Therapist

We use fine motor skills for many tasks throughout the day - any task involving use of the small muscles in our hands and wrists. A few examples of activities we do every day that require fine motor s

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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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