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For people with Down syndrome, family members, caregivers and professionals.
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Agitated or challenging behavior can be a symptom that people with Down syndrome (DS) who have Alzheimer’s disease (AD) can have. When it occurs, careful assessment is important. An evaluati
Alzheimer’s disease not only impacts the individual with the disease but also the individual’s family, friends, and caregivers. Several organizations provide in-person, online, and
The Adult Sibling Toolkit from the National Down Syndrome Congress is a tool for adult siblings who are preparing to become more involved in the support and care of their loved ones with Down syndrome
On May 18, 2022, the Down Syndrome Association of Wisconsin hosted a webinar called "Alzheimer's Disease Prevention and Healthy Aging in People with Down Syndrome," presented
Alzheimer’s disease is a form of cognitive impairment and decline in skills that is more common in people with Down syndrome. It is one, but not the only, type of cognitive impairment. In fa
Alzheimer’s disease is a progressive neurological condition. It is a type of dementia (more information about dementia is available on the National Institute on Aging website ). Alz
In collaboration with Voya Cares, the National Down Syndrome Society published a guidebook on financial wellness. Topics include the basics of financial wellness, government benefits, workplace benefi
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
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&
This booklet for families and caregivers of individuals with Down syndrome discusses dementia. 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
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
This two-page resource provides ideas for staying connected to someone who is experiencing memory loss.
An orientation book can be used for people with Alzheimer’s disease or dementia to help them remember things about their daily life.
This list of resources was compiled by Grace O’Connor and Ann Garcia, patient advocates at the Adult Down Syndrome Center. Some of these resources are specific to the greater Chicagoland are
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
At a recent Advocate Aurora Health event, Darren Gitelman, MD, Senior Medical Director of the Advocate Memory Center, presented on Alzheimer’s disease. He focused on ways to prevent or reduc
While special education services are an entitlement, adult services are based on eligibility and availability of funding. If you are eligible and funding is available, services can be accessed. In the
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
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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