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For people with Down syndrome, family members, caregivers and professionals.
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When the COVID-19 pandemic started, my first thoughts of concern for our patients and all people with Down syndrome were around the virus and the potential of becoming severely ill with COVID-19. We h
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
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
UPDATED JUNE 2020 : On June 9, the Office for Civil Rights (OCR) at the U.S. Department of Health and Human Services (HHS) announced that it had reached a resolution on the first federal com
*Please note: this article discusses viral testing used to diagnose if an individual currently has COVID-19. This article does not discuss antibody testing used to determine if an individual was expos
The National Task Group on Intellectual Disabilities and Dementia Practices (NTG) developed a screening tool called the NTG - Early Detection Screen for Dementia (NTG-EDSD). The NTG-EDSD&
Reports of potential discrimination in medical treatment for individuals with intellectual and developmental disabilities have caused fear, anxiety, and anger within the Down syndrome community. Depar
This booklet about dementia for families and carers was developed by Down's Syndrome Scotland. It was designed to help in the care and support of a person with Down syndrome and dementia. &
This booklet for individuals with Down syndrome explains death using easy-to-read language. It is provided by Down's Syndrome Scotland (www.dsscotland.org.uk/resources/publications/).
This list of resources was compiled by Ann Garcia and Grace O'Connor, patient advocates at the Adult Down Syndrome Center. Some of these resources are specific to Illinois residents - they are
The resources below can be used by individuals with Down syndrome, their families and caregivers, and their health care providers during the transition from pediatric to adult health care. G
Dental Care Guidance for Caregivers of Patients with Down Syndrome is an article that shares information about common dental problems, finding the right dentist, sedation, appointment preparation, and
An orientation book can be used for people with Alzheimer’s disease or dementia to help them remember things about their daily life.
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.
This two-page resource provides ideas for staying connected to someone who is experiencing memory loss.
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
Some of these resources are specific to the greater Chicagoland area and/or Illinois. If you are looking for resources in another region, we recommend reaching out to a local Down syndrome parent orga
The Trisomy 21 Toolkit for Transitioning to Adult Medical Care outlines steps individuals with Down syndrome or other intellectual disabilities can take toward building independence, planning for the
The video below is a recording of a presentation on Oral Health and Hygiene hosted by the Adult Down Syndrome Center in March 2018. Self-advocate Bridget Brown describes important aspects of oral hygi
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
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
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
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
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
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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