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

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Aging and Alzheimer's Disease in Adults with Down Syndrome Webinar Recording (11/10/2020)

Author: Brian Chicoine, MD and Katie Frank, PhD, OTR/L - Adult Down Syndrome Center

The video below is a recording of a webinar presented by Brian Chicoine, MD and Katie Frank, PhD, OTR/L on November 10, 2020. Dr. Chicoine is the co-founder and medical director of the Adult Down Synd

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Agitated or Challenging Behavior in People with Down Syndrome and Alzheimer's Disease

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

Agitated or challenging behavior can be a symptom that people with Down syndrome (DS) who have Alzheimer’s disease (AD) can have. When it occurs, careful assessment is important. An evaluati

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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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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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Alzheimer's Disease Prevention and Healthy Aging in People with Down Syndrome Webinar Recording (5/18/2022)

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

Title:  Alzheimer's Disease Prevention and Healthy Aging in People with Down Syndrome Date:  May 18, 2022 Presenter:  Brian Chicoine, MD Host Organization:  

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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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Alzheimer's Disease Video Journal

Author: Adult Down Syndrome Center - Videos

In September 2017, we started filming a video journal with Colleen, a woman with Down syndrome and Alzheimer's disease, and Bo, Colleen's sister and caregiver. Colleen was diagnosed wi

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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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Association of Alzheimer Disease with Life Expectancy in People with Down Syndrome

Author: Iulita et al. - JAMA Network Open (2022)

Abstract Importance:  People with Down syndrome have a high risk of developing Alzheimer disease dementia. However, penetrance and age at onset are considered variable, and the association of

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Bathing and Showering Tips

Author: Natalie Rivera, OTS and Katie Frank, PhD, OTR/L - Occupational therapy student and occupational therapist

Bathing and showering may be difficult for some individuals with Down syndrome for many reasons. Below are a variety of adaptive strategies and equipment to promote safety and independence with this s

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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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Common Dermatologic Disorders in Down Syndrome: Systematic Review

Author: Lam et al. - JMIR Dermatology (2022)

Abstract Background:  Down syndrome (DS) has been associated with cardiovascular, gastrointestinal, and immune-related abnormalities. Several dermatologic conditions, including hidradenitis s

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

Author: Idris et al. - BJPsych Open (2023)

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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Comorbidity Screening in Hidradenitis Suppurativa: Evidence-Based Recommendations from the US and Canadian Hidradenitis Suppurativa Foundations

Author: Garg et al. (2022) - Journal of the American Academy of Dermatology

Abstract Background:  Hidradenitis suppurativa (HS) is associated with comorbidities that contribute to poor health, impaired life quality, and mortality risk. Objective:  T

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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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Cross-Sectional Exploration of Plasma Biomarkers of Alzheimer's Disease in Down Syndrome: Early Data from the LIFE-DSR Study

Author: Hendrix et al. - Journal of Clinical Medicine (2021)

Abstract With improved healthcare, the Down syndrome (DS) population is both growing and aging rapidly. However, with longevity comes a very high risk of Alzheimer's disease (AD). The LIFE-DSR

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Dermatologic Conditions in Down Syndrome

Author: Ryan et al. - Pediatric Dermatology (2021)

Abstract Down syndrome (DS) is the most common chromosomal condition and affects many organs including the skin. Dermatologists are an integral part of the DS care team. This is a review of both commo

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Dermatologic Conditions in Down Syndrome: A Single-Center Retrospective Chart Review

Author: Rork et al. - Pediatric Dermatology (2020)

Abstract Background:  Current literature addressing dermatologic conditions associated with Down syndrome is limited, with emphasis on rare skin conditions and lack of consensus on the incide

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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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Down Syndrome and Hidradenitis Suppurativa

Author: The Society for Pediatric Dermatology - Patient education

Hidradenitis suppurativa (HS) is a chronic skin condition that causes painful bumps under the skin. The handout linked below was developed by the Society for Pediatric Dermatology   . Informa

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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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Folliculitis and Boils in People with Down Syndrome

Author: Adult Down Syndrome Center

Folliculitis and boils are two skin conditions that are more common in people with Down syndrome than in people without Down syndrome. The article below describes these conditions, how they are diagno

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How is Alzheimer's Disease Diagnosed in a Person with Down Syndrome?

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

Alzheimer’s disease is a progressive neurological condition. It is a type of dementia (more information about dementia is available on the National Institute on Aging website &n

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How to Put Your Hair into a Ponytail Video

Author: Kayla Millan, OTS and Katie Frank, PhD, OTR/L - Adult Down Syndrome Center

The video below demonstrates one way of putting your hair into a ponytail.  See the  Self-Care and Hygiene  section of our library for additional resources.   Royal

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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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