Diagnosing Dementia in People with I/DD Difficult

HealthMeetStudies have shown that individuals with intellectual disabilities are living longer these days with many living well into their 50’s and 60’s and beyond.  This is most likely due to new medical advances and educational programs that help empower individuals to live healthier lifestyles.  While this is remarkable news, it is also directly correlated to the increased rate of dementia in individuals with I/DD.  While most of the general population develops Alzheimer’s after the age of 65, many individuals with I/DD (especially Down syndrome) are more likely to develop Alzheimer’s earlier on in life, which is called Early-Onset Alzheimer’s.  Some may even develop it as early as their forties.

Individuals with Down syndrome are at a higher risk than other individuals with disabilities for developing dementia.  As we know, individuals with Down syndrome have an extra copy of the chromosome 21.  This specific chromosome contains a gene that produces a protein that can cause brain cell damage.  Since these individuals have an extra copy of this gene they are producing more of this harmful protein in their bodies.  Studies have shown that almost all individuals with Down syndrome will develop the same changes in the brain that are associated with dementia; however not everyone will develop the symptoms of the disease.

Diagnosing dementia in an individual with I/DD can also be a difficult situation because many individuals may have trouble answering the testing questions that could be used to diagnose it. There are also few other assessment tools developed for individuals with I/DD.  In addition, some behavioral issues that individuals with I/DD can have may also be confused with signs for dementia when the issue is rooted in another problem. Starting to rule out all other possible options for the change in the individual’s behavior is a good start to determine what the real concern is.

We recently talked to The Arc’s Board President, Nancy Webster, who has had some personal connections with dementia in her family, too.  Nancy’s concern is that families don’t know where to turn to get information on dementia, what signs to look for, and how to get the appropriate testing.  As caregivers and family members with an individual with a disability, it is important to be aware of the individual’s whole situation to better advocate for their needs.  Nancy believes “this advocacy is not solely on The Arc and its members, and on families, but also on general practitioners too – as they are the first line of people who tend to see our population”.  Nancy’s hope is that through The Arc’s HealthMeet project, The Arc will become a resource for this topic to help families and caregivers find the information and supports that they need to better treat this disease, and once diagnosed learn how to cope and minimize the effects of dementia as best possible.

For more resources and webinars relating to dementia, check out the resources and archived webinar page on The Arc’s HealthMeet site.  Don’t forget to sign up for our upcoming webinar focusing on Understanding Behavioral Changes in Adults with IDD and Dementia.

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 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 I/DD, the better chance we have at making progress in addressing the needs of people with I/DD.