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

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Coping With Transitions, Loss, and Grief

Author: Melissa Levin, MSW, LICSW

This is a handout with information on coping with transitions (such as leaving high school, changes in family dynamics, etc.) and the feelings of loss and grief that can accompany these transitions.

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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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Seizures in People with Down Syndrome and Alzheimer's Disease

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

We were sent a question about seizures in a person with Down syndrome who developed Alzheimer’s disease. The individual continued to experience seizures despite being treated with l

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Seizures

Author: Aashima Ghai, DO - Family Medicine Resident, Adult Down Syndrome Center

Definition: Seizures are waves of abnormal electrical activity in the brain. The brain has multiple nerve cells that create and receive electrical impulses which help the cells communicate with each o

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Strokes and Down Syndrome

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

Strokes occur when the blood supply to the brain is compromised, which deprives the brain of needed oxygen and glucose. Strokes can be caused by atherosclerotic disease (a disease in which the inside

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Startle Reflex and Myoclonus

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

We were asked a question about increased “startle reflex” in a 30-year-old. Please note: The information below is for educational purposes only and is not intended to serve as a su

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Bereavement

Author: Down's Syndrome Association - Booklet

People with and without Down syndrome experience grief and sadness when a loved one dies. We have learned from individuals with Down syndrome and their families that grief can be experienced different

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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).  View the

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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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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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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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Grief - Ways to Help Support Someone with Down Syndrome Who is Grieving

Author: Shana Sexton, LCSW - Social Worker, Adult Down Syndrome Center

1. Acknowledge and normalize the person’s feelings. It’s important for someone to know that their feelings, whatever they are, are normal and they are not alone. It can help just t

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Grief - 10 Things I Know

Author: Shana Sexton, LCSW - Social Worker, Adult Down Syndrome Center

I’ve heard it said that everyone experiences loss in their lives, although some people have more than others. People with Down syndrome encounter situations involving grief and loss just lik

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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. Access the Booklet &n

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Neurobehavioral Disorders in Children, Adolescents, and Young Adults with Down Syndrome

Author: Capone et al. - American Journal of Medical Genetics Part C (2006)

Abstract The term dual-diagnosis refers to a person with mental retardation and psychiatric disorder. Most children with Down syndrome (DS) do not have a psychiatric or neurobehavioral disorder. Curre

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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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