It is part of our mission that we advocate for our members. DSL promotes awareness, acceptance, and inclusion of those with Down syndrome. Our advocacy work focuses on families in Kentucky & Indiana, however, we are strong supporters of the national advocacy groups as well. We want to be sure that every individual with DS is awarded the rights they deserve.
Ways We Advocate:
- Legislative Advocacy
- Community Advocacy
- Healthcare Advocacy
- COVID-19 Vaccine Advocacy
- Educational/School Advocacy
PAC (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
Would you or your staff/caretakers like to be trained under the PAC Philosophy?
Contact Cathy Palmer to get started!
Aging & DS Resources, Studies & Support:
Alzheimer’s Disease and Down syndrome – an article from the Global Down Syndrome Foundation
Down Syndrome Aging Study at 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 caregiver are willing to answer questions about your health.
Interested in joining the University of Kentucky’s Aging with Down syndrome Study?
Contact Cathy Palmer or the University of Kentucky directly to get started!
University of Kentucky
Sander’s-Brown Center for Aging
Roberta Davis: (859) 218-3865 / firstname.lastname@example.org
800 South Limestone Street
Lexington, KY 40536
Request A Speaker
DSL’s executive director, Julie Torzewski, as well as many others on the DSL Leadership Team, are available to speak on a variety of advocacy, education, and Down syndrome-related topics. Self-advocates with Down syndrome can also be requested to speak to your group or at an event. Just contact us at 502-495-5088 or email@example.com.