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!

What Can We Help With?

For those who have begun to show symptoms of dementia, DSL has adopted PAC as our team approach to care.


(Positive 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.


Positive Approach to Care encourages Care Partners to:

1. Respond to a person’s change in cognition and abilities in a way that is not hurtful or offensive
2. Understand that, with practice, common “reactions” to the person with Alzheimer’s or Dementia can become thoughtful “responses” that improve the quality of life for everyone involved
3. Recognize that the person with Alzheimer’s or Dementia is “doing the best they can” and that if something isn’t working, it’s the responsibility of the Care Partner to change their approach and behaviors toward that person
4. Notice the environment surrounding a person with Alzheimer’s or Dementia and make changes as necessary


Aging & DS Resources, Studies & Support:

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.

Alzheimer’s disease is the most common form of dementia in our aging population and the earlier one is diagnosed, the better the possibilities are for symptomatic treatment of this disease. Currently, however, there are no cures for Alzheimer’s disease.

People with Down syndrome are, unfortunately, at higher risk for developing Alzheimer’s disease because most have an extra copy of chromosome 21. This chromosome is a gene that is strongly linked to the development of Alzheimer’s disease. The good news is, not everyone with Down syndrome will develop dementia.

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?

    • 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.

Want to know more?


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