The Federal Government Needs Your Input on I/DD and Alzheimer’s Disease

The Administration on Intellectual and Developmental Disabilities (AIDD) is seeking input from family members and caregivers of people with intellectual and developmental disabilities (I/DD) 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 I/DD 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  and  Matthew Janicki at the University of Illinois at Chicago, 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 I/DD, the better chance we have at making progress in addressing the needs of people with I/DD.

One thought on “The Federal Government Needs Your Input on I/DD and Alzheimer’s Disease

  1. I have a 46 year old sister with Down Syndrome who has been diagnosed with Dementia. Over the course of her life she had been included in inclusive acitivies as much as possible, however she did attend the local intermediate school district until the age 26. Approximately 6 years ago, she had ongoing issues with her teeth and needed those repaired or removed. At the time Medicaid was not covering the dental that she required and it needed “special” approval. The approval process took more than a year and then the gum disease progressed so badly that they had to be removed through donated dental program. She went to a local oral surgeon and had them removed under office anthestesia. Since that time she progressively has lost skills and had episodes of anger and confusion. At the time, we believed her to be depressed and she saw a pshyciatrist through our local Community Mental Health. She had been sleeping and lost interest in all of her favorite past times and activities. She became so anxious and upset in settings that she most often didn’t wish to leave home. She always has been active and hated to sit without something to do. She had been under a medical doctors care at the time and my mother had been trying to convey that she just wasn’t her old self and not able to do things she was always able to do. She was always obsessed with her appearence and fashion, she started not taking care of herself and wasnt interested in chores and activities she always wanted to be her responsibility. This continued over the course of a few years.
    Then approximately 2.5 years ago she twice within a few months, she had what we considered “Seizures”. She had never had them prior and had been healthy. She had been sleeping in my mother’s car and had snored and then convulsed. She was taken to ER and diagnosed with an anxiety attack. The second incident happened a few months later and she was at home and had been sleeping on the couch. She rose and fell foward into a glass coffee table and convulsed for what seemed like an eternity. She was admitted to the hospital and then had seen a neurologist for seizures. She was diagnosed with epilepsy associated with dementia. She has progressively lost skills and is totally dependent on everyone for everything. She has been diagnosed with sleep apena, following a near death case of pneumonia. She uses a c-pap at night and oxygen during the day. I firmly believe she had apnea when the two incidents with convulsions happened as they both were related to sleeping. I have to say taking care of her in her own home with my mom is the only option for our family. Community Mental Health along with Chore Services assist in paying for workers. I however think an earlier diagnosis would have probably enhanced her quality of life, but it seemed that the clinical supports and medical supports were not as educated on the subject. It often feels like they think people with down syndrome are going to die this way and it is a fact of life. I bellieve differently! I applaud your efforst in attempting to educate care givers on the care and support with people with disabilities as they embark on a path different from their counterparts at an earlier age.

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