The Administration on Intellectual and Developmental Disabilities (AIDD) is seeking input from family members and caregivers of people with intellectual and developmental disabilities (IDD) who also have Alzheimer’s disease or other forms of dementia. AIDD wants to learn more about addressing the needs of specific populations disproportionally affected by Alzheimer’s disease, like people with Down syndrome.

If you are a family member of a person with IDD who also has Alzheimer’s or dementia, AIDD is specifically looking for your experience with the following topics:

• Accurate and timely diagnosis;
• Access to care;
• Education on Alzheimer’s disease for practitioners who do not normally specialize in care for people with Alzheimer’s disease; and
• Special considerations for these populations.

Responses should go directly to Dr. Mette Pedersen at mette.pedersen@acf.hhs.gov and Matthew Janicki at the University of Illinois at Chicago, mjanicki@uic.edu by September 25, 2012.

We at The Arc appreciate your willingness to share your thoughts with AIDD. The more they hear from people directly involved with the care of people with Alzheimer’s and IDD, the better chance we have at making progress in addressing the needs of people with IDD.