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For people with Down syndrome, family members, caregivers and professionals.
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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 poster that describes a small chart review study on Alzheimer's disease and Down syndrome done at the Adult Down Syndrome Center.
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
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
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
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
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
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
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
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
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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