The CACTI Blog: Early Dementia Screening for Adults with Intellectual Disabilities

By Ginger Mogel,  2019-2020 Undergraduate Certificate in Developmental Disabilities

This semester I had the pleasure of working with Dr. Yumi Shirai at Artworks. Artworks is a program at the University of Arizona that focuses on mutual learning through creative and expressive arts. The artists at Artworks are all people with intellectual or developmental disabilities. The artists put on many art galleries and displays throughout campus. My task at Artworks was to use an early dementia screening tool on all of the artists. This was the plan, however, due to the presence and impact of the coronavirus (COVID-19), this plan was cut short and the future is uncertain. Before I was unable to return to Artworks, Dr. Shirai briefed me on the screening tool and its purpose.

The NTG-EDSD is the National Task Group on Intellectual Disabilities and Dementia Practices - Early Detection Screen for Dementia. This is a form used for early detection screening in adults with an intellectual disability who are suspected of showing signs of dementia. NTG-EDSD is used by family caregivers or staff to document any declines in functional performance or changes in health. This tool is not a diagnosis. It simply establishes a base line that can be used as a reference point to note significant changes and document information important for further assessment.

The tool should be conducted annually and by someone who is familiar with the person. Since I had only spent about a month visiting Artworks, I needed the help of the long-time staff who had been with the artists for years. The tool is six pages long and reviews topics from mental health, physical health, Activities of Daily Living (ADL), and chronic health conditions (View the tool in PDF format(link is external) and for additional instructions(link is external)). 

Rates of dementia are much higher in people with Down Syndrome. According to the National Down Syndrome Society, about 30% of people with Down Syndrome who are in their 50s have Alzheimer’s disease. For those in their 60s, about 50% have Alzheimer’s. The NTG recommends that people with Down syndrome receive this test starting at age 40 and then continue annually. Other people with IDD who are at risk are also recommended to receive this test starting at an earlier age.  

Early intervention is key when trying to manage the impact of such a debilitating disease. If you suspect yourself or someone you know with an intellectual disability to be showing signs of cognitive impairment, then I recommend that you look at the resources linked above. It can be easy to overlook certain cognitive changes as normal and sometimes even put the blame on the disability. However, you cannot be sure of what is normal signs of aging and what is not. Especially if you are only looking at it day to day. Serious changes are easier seen over the years.

It is best to know the signs and have a baseline in place to track the change over the years.

Although I did not get to finish this work, I looked forward to it and recognize its importance. As a family member of someone with an intellectual disability, it is always very relieving to find instruments such as this. The form only takes 15 to 60 minutes to complete. So again, I urge you to check out the PDFs above if you suspect yourself or someone you know to be showing early signs of dementia (especially the Down Syndrome(DS/DNS) population)!

The CACTI Blog features the voices of our interdisciplinary trainees and Community Advisory Council members as they highlight diverse images of people with disabilities and provide community information and advocacy on disability issues. Check Out The CACTI Blog