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

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Unexplained Regression in Down Syndrome: 35 Cases from an International Down Syndrome Database

Author: Santoro et al. - Genetics in Medicine (2019)

Abstract Purpose:  An entity of regression in Down syndrome (DS) exists that affects adolescents and young adults and differs from autism spectrum disorder and Alzheimer disease.  Me

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Catatonia in Down Syndrome: Systematic Approach to Diagnosis, Treatment and Outcome Assessment Based on a Case Series of Seven Patients

Author: Miles et al. - Neuropsychiatric Disease and Treatment (2019)

Abstract Objective:  The goal is to expand our knowledge of catatonia occurring in adolescents and young adults with Down syndrome (DS) by describing the first prospective, consecutive, well-

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Today & Tomorrow: A Guide to Aging with Down Syndrome

Author: Canadian Down Syndrome Society - Resource

The resource linked below is a guidebook on aging from the Canadian Down Syndrome Society. While some of the information and recommendations are specific to Canada, the resource contains helpful infor

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Lower Body Joint Compression

Author: Katie Frank, PhD, OTR/L

This article describes a form of proprioceptive input called lower body joint compression which may be helpful for individuals with sensory challenges.

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Affordable Sensory Equipment

Author: Katie Frank, PhD, OTR/L

In this handout, our occupational therapist provides recommendations for affordable sensory 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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Upper Body Joint Compression

Author: Katie Frank, PhD, OTR/L

This article describes a form of proprioceptive input called upper body joint compression which may be helpful for individuals with sensory challenges.

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Regression in Adolescents and Adults with Down Syndrome

Author: Chicoine & Capone - Chapter in Physical Health of Adults with Intellectual and Developmental Disabilities

Abstract There has been a growing number of clinical case reports of regression in adolescents and adults with Down syndrome who have shown unexpected and severe regression in cognitive and adaptive f

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Advance Directives - Forms for Illinois Residents

Author: Illinois Department of Public Health - Website

An advance directive is a written statement you prepare that expresses how you want medical decisions made in the future should you not be able to make them yourself. Illinois law allows you

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Aging and Down Syndrome: A Health & Well-Being Guidebook

Author: National Down Syndrome Society - Resource

The resource linked below is a guidebook from the National Down Syndrome Society . According to the Introduction, "Adults with Down syndrome, along with their families and caregivers, need ac

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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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The Role of Polypharmacy - General Aging in Intellectual and Developmental Disabilities

Author: Julie A. Moran, DO - Geriatrician, Aging and Intellectual/Developmental Disabilities Specialist

The webinar recording below was shared by the Center for Developmental Disabilities Evaluation and Research (CDDER) and the Massachusetts Department of Developmental Services (DDS). The presentation s

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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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Catatonia in Down Syndrome: A Treatable Cause of Regression

Author: Ghaziuddin et al. (2015) - Neuropsychiatric Disease and Treatment (2015)

Abstract Objective:  The main aim of this case series report is to alert physicians to the occurrence of catatonia in Down syndrome (DS). A second aim is to stimulate the study of regression

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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. https://www.learningdisab

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Nursing Home Placement

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

Placement of individuals with Down syndrome in nursing homes has been a challenging issue for a number of years. In Illinois, many individuals with intellectual disabilities were sent to live in nursi

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Life Expectancy

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

As we mention in our resource “ Two Syndromes ,” there are four main areas that we see are affecting people with Down syndrome in a positive way. The effect has been so great in so

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Longevity of a Woman With Down Syndrome

Author: Chicoine & McGuire - Mental Retardation (1997)

Abstract A case of a woman who is among the longest surviving people with Down syndrome was described. The life expectancy of persons with Down syndrome has increased more than six-fold to 56 years si

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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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