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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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My Emotions Triggers

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

The visuals linked below can help us identify triggers for our emotions. Triggers are situations that cause us to feel certain emotions. Some triggers may make us feel happy while other triggers may m

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Observable Signs of Emotions

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

The visuals linked below can help us figure out what emotions we are feeling. Our bodies give us clues about what we are feeling. For example, when we feel sad, we might cry, frown, or put our head do

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Things I Can and Cannot Control Visual

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

Things I Can and Cannot Control     Things I Cannot Control/Change Other people's emotions Other people's thoughts Other people's actions Some rules at work,

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My Thoughts Story

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

My Thoughts Story   This visual story explains thoughts and how we can learn to manage our thoughts.    Additional resources Reframing our Thoughts Automatic Negative Though

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Practicing Inclusive Mental Healthcare of Individuals with Down Syndrome

Author: National Down Syndrome Society - Guidebook

The resource linked below is a guidebook from the National Down Syndrome Society (NDSS). According to the Executive Summary, "This resource is provided to equip mental health professionals wi

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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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Mental Health Therapy Toolkit and Guidelines

Author: Nisonger Center - The Ohio State University

The Ohio State University Nisonger Center developed several resources for adults with intellectual disabilities (ID) and professionals who treat adults with ID and mental health conditions.&a

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Evaluating Challenging Behaviors in Adults with Down Syndrome

Author: Down Syndrome Medical Interest Group - USA - DS-ASD Workgroup

Evaluating Challenging Behaviors in Adults with Down Syndrome    is a resource for health care professionals developed by the Down Syndrome-Autism Spectrum Disorder Workgroup of the

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Resources on Healthy Ways to Manage Stress and Strong Emotions

Author: Adult Down Syndrome Center - Resource List

Learning how to manage our stress and strong emotions in healthy ways is a lifelong process. We have compiled a list of resources below that may help people with and without Down syndrome who

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Automatic Negative Thoughts (ANTs)

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

The handouts linked below were developed to teach individuals with Down syndrome how to think more positively. If an individual has an automatic negative thought (or ANT), they can squish it or brush

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How to Cope with Stress

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

Coping with stress is an important and necessary part of life. There are some strategies that can help us manage our reactions to different life stressors. The steps below are strategies that I use wi

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Getting an EEG Visual

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

This Getting an EEG visual  explains what happens when we have an electroencephalogram (EEG) done. It can help individuals with Down syndrome know what to expect when going for an EEG. Additi

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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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Plan For Managing My Emotions

Author: Adult Down Syndrome Center - Visual Handout

When we talk about emotions during our social skills groups for adolescents and adults with Down syndrome, we explain that it is ok to feel any emotion; however, it is not ok to have negative

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Things I Can Do to Help Me Calm Down

Author: Adult Down Syndrome Center - Visual

Things I Can Do to Help Me Calm Down   Take deep breaths Exercise Spend time with a pet Count to 10 Listen to music Go for a walk Watch TV Ask for help Write in a journal Draw or color Talk t

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"I" Statements

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

"I" statements are a way to share how we feel in a clear, calm, and respectful way. The handouts pictured below explain the components of "I" statements. There is a

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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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Obstructive Sleep Apnea, Cerebrovascular Disease, and Amyloid in Older Adults with Down Syndrome Across the Alzheimer's Continuum

Author: Lao et al. - Sleep Advances: A Journal of the Sleep Research Society

Abstract We determined the extent to which obstructive sleep apnea (OSA) is associated with increased cerebrovascular disease and amyloid burden, and the relation of the two processes across clinical

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

Author: Iulita et al. - JAMA Network Open

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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Down Syndrome EyeWiki

Author: American Academy of Ophthalmology - Eye Encyclopedia

EyeWiki is an Eye Encyclopedia developed by the American Academy of Ophthalmology with content contributed by ophthalmologists (eye physicians and surgeons). There is a Down syndrome page wit

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Prevalence of Mental Health Conditions Among 6078 Individuals with Down Syndrome in the United States

Author: Rivelli et al. - Journal of Patient-Centered Research and Reviews

Abstract Findings from a recent study of the largest documented cohort of individuals with Down syndrome (DS) in the United States described prevalence of common disease conditions and strongly sugges

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Mechanistic Analysis of Age-Related Clinical Manifestations in Down Syndrome

Author: Chen et al. - Frontiers in Aging Neuroscience (2021)

Abstract Down syndrome (DS) is the most common genetic cause of Alzheimer's disease (AD) due to trisomy for all or part of human chromosome 21 (Hsa21). It is also associated with other phenoty

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Epilepsy in Down Syndrome: A Highly Prevalent Comorbidity

Author: Altuna, Gimenez, & Fortea - Journal of Clinical Medicine (2021)

Abstract Individuals with Down syndrome (DS) have an increased risk for epilepsy during the whole lifespan, but especially after age 40 years. The increase in the number of individuals with DS living

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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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