Aging with Down Syndrome
What we want you to know...
Did you know that prior to the 1980s, an overwhelming majority of individuals with Down syndrome in the United States were placed in institutions, oftentimes as infants or young children? For this reason, as well as having more access to advancing health care, we are now getting to witness individuals with Down Syndrome are living longer and healthier lives in our community! At DSL, we are learning alongside our members what this looks like.
Those with DS can begin showing signs of aging & dementia 20 prior to the typical population. However, we know that the more we can keep them engaged and learning, the longer we can keep these symptoms at bay. This is why we encourage participation in our Adult Development Academy and our Career Solutions Program. We have members in their 50s and 60s active in both!
DSL's Positive Approach to Care
For those who have begun to show symptoms of dementia, DSL has adopted PAC as our team approach to care.
Our Adult Education Director, Cathy Palmer, is a certified PAC Trainer designed to provide knowledge and skills to train DSL staff and others in Teepa Snow’s Positive Approach to Care philosophy.
Down Syndrome Aging Study at the University of Kentucky
Adults with Down syndrome are living long, productive, and healthy lives but face several challenges as they grow older. Although many people remain healthy, they are a vulnerable group of people who may develop Alzheimer’s disease.
The goal of our research is to follow people with Down syndrome as they get older. This will help us to understand why and who will develop dementia. Importantly, if we follow people who do not develop dementia we may be able to learn how to prevent this from occurring in others. The Down syndrome aging study is now in its second cycle of funding that is taking place at the University of Kentucky that will allow us to follow people with Down syndrome as they age to learn more about the challenges they might face.
Who Can Join?
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- You have Down Syndrome;
- You are age 25 and older;
- You are willing to come for a study visit once a year, for at least 5 years;
- You, a family member, or a caregiver are willing to answer questions about your health.
Guardianship
Guardianship and other legal tools are available when a member turns 18 and is declared an adult. It may be in the best interest of that individual to have the guidance of a trusted family member or friend to make life decisions. But it is also important that an adult with a disability enjoy the right to make choices he or she understands.
Recorded Webinars & Educational Sessions
- Special Guest, Teepa Snow: A Positive Approach to Aging
- NDSS: A Practical Approach to Aging
- Down syndrome & Alzheimers
Crisis Support
- Crisis Guide for Alzheimer’s & Dementia Caregivers from Caring.com
- Family Support Specialist, Diana Merzweiler, can help your family with things like:
- Emergency SCL Waiver Guidelines
- Residential Decisions
- Medicaid & Waiver Resources
- Guardianship