September is Dementia Awareness Month | May Institute Expert Offers Advice to Help Adults with Special Needs Who Also Have Dementia

09/26/23

Randolph, Mass. - According to the National Institutes of Health, dementia is the most feared condition for people over 65 and the second most feared condition, after cancer, among younger adults. 

This fear is understandable. Imagine waking up scared and confused because you do not know where you are, suddenly forgetting steps in daily routines, and struggling to remember what someone just said. 

“Now, imagine all that happening to an adult with an intellectual or developmental disability,” says Dr. Jenna Gilder, Director of Clinical Services and Training for May Institute’s Adult Services. “Studies show that individuals with intellectual/developmental disability (IDD) are just as much at risk for developing dementia as the general population. Individuals with Down syndrome are approximately five times more at risk for developing Alzheimer’s disease than the general population – and at an earlier age.”

A national leader in providing evidence-based services for individuals across the lifespan with autism and other developmental disabilities, May Institute also serves a large number of adults with IDD.

“Although new research and support strategies are being published in the dementia field, little is out there for individuals with a dual diagnosis of IDD and dementia,” says Dr. Gilder, who is also a Regional Trainer for the National Task Group on Intellectual Disabilities and Dementia Practices (NTG). “The NTG and other organizations are focusing on ways to help this underserved population.”

If an adult with IDD starts to demonstrate dementia symptoms such as memory loss, confusion, challenges with language, and poor judgment, the NTG recommends that caregivers complete the NTG-Early Detection Screen for Dementia and give it to their doctor. 

“This is not a diagnostic assessment, but rather a screening tool that should be done every year starting at age 40 for individuals with IDD, even if dementia symptoms are not present,” Dr Gilder explains. “It will provide a baseline that can be compared with later screenings if symptoms develop. This screening tool is also beneficial because some dementia symptoms commonly seen in individuals with IDD differ from those usually seen in the typical population. As a result, misdiagnosis can occur.

“By using NTG-recommended tools and support strategies at May Institute, we are helping individuals with IDD and symptoms of dementia lead the safest, happiest, and most fulfilling lives possible,” Dr. Gilder adds. 

These practical strategies include:

• Exhibiting a friendly demeanor and calm voice to show the individual you are safe to approach and interact with.
• Adapting activities to meet the needs and abilities of the individual and using simple one-step directions.
• Distracting and redirecting the individual to avoid challenging behavior such as outbursts or aggressions.
• Discouraging a person from wandering (a common occurrence with dementia) by putting stop signs on the doors or creating fun paths in an enclosed backyard. 

For more helpful strategies and resources, visit the NTG website.

Jenna Gilder, Ph.D., BCBA, LABA is May Institute’s Director of Clinical Services and Training for Adult Services and is a Regional Trainer for the National Task Group on Intellectual Disabilities and Dementia Practices (NTG). 

About May Institute
May Institute is a nonprofit organization that is a national leader in the field of applied behavior analysis and evidence-based interventions, serving autistic individuals and individuals with other developmental disabilities, brain injury, neurobehavioral disorders, and other special needs. Founded more than 65 years ago, we provide a wide range of exceptional educational and rehabilitative services across the lifespan. For more information, call 800.778.7601 or visit www.mayinstitute.org.