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For people with Down syndrome, family members, caregivers and professionals.
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The video below is a recording of a webinar presented by Katie Frank, PhD, OTR/L, and Abby Rowley, LCSW, on January 10, 2024. Description: Although people with Down syndrome can be excellent
Key Points Alzheimer's disease is more common in people with Down syndrome. Presently, we do not know how to prevent or cure Alzheimer's disease. We may lower the risk of developing Al
The resources in the Families and Caregivers section of our Resource Library are intended for a broad audience of parents, siblings, friends, and caregivers of individuals with Down
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
Abstract Background: Down syndrome is the most common genetic cause of intellectual disability and Alzheimer's disease. In the general population, common mental disorders (CMDs), inc
There are many things to think about when we are looking for a job that is right for us. The visual linked below describes a variety of potential jobs and job settings, provides a list of questions to
The handout linked below shares information on appropriate conversations at work. It lists topics that are appropriate to discuss at work. It also explains that appropriate topics may depend on who we
This handout shares tips for individuals with Down syndrome to be successful in the workplace.
What should we do and how should we behave at work so that we are good employees? The story linked below answers those questions. Story about Work Access more employment resources
Recently, we were asked about emergency preparedness and safety resources for people with Down syndrome. We started to research the topic and found numerous resources that may be helpful to people wit
Just thinking about chores can make us want to groan but doing chores can be beneficial for our physical and mental health. Doing chores is one way to incorporate more physical activ
Becoming more independent is a goal for many adolescents and adults with Down syndrome. This goal may vary significantly from person to person. It can range from wanting to become more independent wit
We received a question about treatment of keratoconus in people with Down syndrome. What is keratoconus? Keratoconus is an eye condition in which the cornea (the clear part in the front of t
Abstract Background: Virtually all adults with Down syndrome (DS) develop Alzheimer's disease (AD) pathology, but research gaps remain in understanding early signs of AD in DS. Objec
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
This list of resources was compiled by the patient advocates at the Adult Down Syndrome Center. Some of these resources are specific to the greater Chicagoland area and/or Illinois. If you are looking
This list of resources was compiled by Ann Garcia, patient advocate at the Adult Down Syndrome Center. Most of these resources are specific to the greater Chicagoland area and/or Illinois. If
Abstract Scant research has explored the healthcare experiences of people with Down syndrome (DS) in the United States who are Black, African American, of African descent, or of mixed race. The purpos
Brian Chicoine, MD, presented a webinar called "Bias in the Health Care System: Advocating for People with Down Syndrome" on October 19, 2022. The webinar was hosted by LuMi
The stories linked below were developed to help individuals with Down syndrome understand what Alzheimer's disease is and how Alzheimer's disease may affect someone i
The fact sheets linked below share estimates of the numbers of babies born and people living with Down syndrome in the United States and Europe. USA Fact Sheet Last updated Novemb
Respite care is short-term relief for primary caregivers. It can be used for as short as a few hours to as long as several weeks. Respite care can be provided in a variety of settings including the in
The list below includes information about respite organizations and providers in the greater Chicagoland area and/or Illinois. The types of respite provided are also included: In-Hom
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
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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