Categories: ASD and DD, Adult-focused
By Jenna Gilder, Ph.D., BCBA, LABA
[This column was published in the West Springfield Republican on May 25, 2023.]
Imagine waking up scared and confused because you are wondering where you are in space and time. Suddenly forgetting steps in daily routines you have been doing your entire life. Struggling to maintain conversations because the right words escape you and it is hard to remember what someone just said. Now imagine all that happening to an adult with an intellectual/developmental disability (IDD).
Individuals with IDD, as well as older adults in the general population, are at risk for Major Neurocognitive Disorder, commonly called dementia. Adults with Down syndrome, a subset of IDD, are even more at risk (Bram et al., 2019). This is especially the case for early onset Alzheimer’s disease (Janicki & Dalton, 2000). Before a diagnosis can be made, however, all other diseases need to be ruled out since they can cause similar symptoms.
Dementia symptoms appear gradually over months or years and can be due to both treatable and irreversible conditions. A few common warning signs include:
Although new research/support strategies are being published in the dementia field, little is out there for individuals with a dual diagnosis of IDD and dementia. The National Task Group on Intellectual Disabilities and Dementia Practices (NTG) and other organizations are focusing on ways to help this underserved population.
The NTG recommends that caregivers of neurodiverse adults (those with IDD) who start demonstrating dementia symptoms 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 (National Task Group, 2023).
Below are support strategies, recommended by the NTG, for caregivers of individuals with IDD demonstrating dementia symptoms:
1. Positive Demeanor
As an individual’s dementia symptoms progress, they may have difficulty recognizing people. You can show you are safe to approach/interact with by smiling and using a calming voice.
2. Meaningful Failure-Free Activities
Adapt activities to meet the needs and abilities of the individual and use simple one-step directions. For example, if the individual always loved cooking, you could measure the ingredients and they could dump them into the bowl.
3. Redirection
To avoid challenging behavior like outbursts or aggressions, a key technique is to distract and redirect the individual. So, if the person is starting to get upset, you can distract them by talking about their favorite food and then asking them to help you make it.
4. Wandering
Wandering is a common symptom and can be dangerous if the individual wanders outside on their own. Safety concerns include getting hit by a car, getting lost, entering the wrong home, or falling in a swimming pool.
To discourage a person from going outside, you could put stop signs on the doors. Another idea is to create fun paths in the house or in an enclosed backyard that will allow them to “wander” safely.
5. Validation and Re-orientation
People with dementia have a different reality than our own. Because they cannot change, it is important for us to enter their reality. Here are examples:
The window blinds create a shadow on the wall that the individual believes is a stranger. Demonstrate empathy/understanding by not questioning them. Instead, you can say, “I will help get rid of them” while fixing the blinds to eliminate shadows.
Imagine if every time an individual asked “where is my dad?” a caregiver responded, “He is dead.” This is extremely emotionally distressing. Instead, try responding with, “Tell me about your dad. What do you do together?”
6. Life stories
Scrapbooks, videos, and items are wonderful ways to capture someone’s unique life story and can be used to help bring joy when they are no longer able to tell their own story.
7. Online caregiver support group
Working with neurodiverse adults with dementia symptoms can be a very emotional experience. Make sure you are taking care of yourself and creating a support system. For helpful 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). The author would like to thank and recognize the NTG for the resources/information included in this article.
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 nearly 70 years ago, we provide a wide range of exceptional educational and rehabilitative services across the lifespan. May Institute operates five schools for children and adolescents with autism spectrum disorder (ASD) and other developmental disabilities. For more information, call 800.778.7601 or visit www.mayinstitute.org.
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