Studies 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 IDD. While most of the general population develops Alzheimer’s after the age of 65, many individuals with IDD (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 IDD 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 IDD. In addition, some behavioral issues that individuals with IDD 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.