Preventing and Responding to Elopement Behaviors of Autistic Individuals with Dementia

 

By Jenna Gilder, Ph.D., BCBA, LABA

[This column was published in the West Springfield Republican on September 19, 2024.]

One of the most dangerous symptoms of Major Neurocognitive Disorder, commonly referred to as dementia, is elopement. According to The Washington Post, more than 2,000 individuals with dementia wandered away or eloped from assisted care units between 2018 and 2023. Nearly 100 of those individuals did not survive.

Elopement is also a symptom associated with intellectual/developmental disabilities (IDD). Research suggests that around 50% of autistic individuals, or those with other IDD diagnoses, have engaged in elopement behavior. Taken together, these statistics show the increased risk of elopement for individuals living with both IDD and dementia. 

Wandering and elopement have different meanings. Wandering tends to occur inside a home or facility or in a single setting (moving around the home or backyard without a clear goal or awareness of personal safety). If an individual leaves the setting, this would be considered elopement (walking out the front door without supervision or notifying anyone). This distinction is important as there are instances where wandering can be safe, whereas elopement is not. Some of the dangers associated with elopement include injuries, exposure to extreme weather, drowning, being hit by a car, and dehydration.

Since the potential consequences of elopement are severe, it is important to understand why this behavior may be occurring and how to best reduce the likelihood of it occurring. For someone with IDD, a few common reasons for elopement may include: 

• to access an item, activity, or setting (e.g., wandering to the ice cream cart because they want an ice cream);
• to escape a person, activity, or setting (e.g., a loud noise is occurring and the individual leaves the setting to go to a quieter area);
• to access attention (e.g., when they wander in the grocery store, their name gets called over the loudspeaker); or
• for the enjoyment of wandering itself (e.g., they have been sitting around for a long time and walking around feels good).

Individuals with dual diagnoses of IDD and dementia may wander off for similar reasons. For example, let’s say John decides he wants a soda, so he starts walking to the corner store where he got soda as a child. However, John currently lives in a group home and this corner store is nowhere near him. Eventually, John becomes confused. He may no longer remember where he is, what he was doing, where he lives, or who is a safe person to approach. He is now in a dangerous situation that could become life-threatening. 

How do we help John and others like him? After completing the first step of determining why someone is eloping, we should examine how we can reduce the likelihood of episodes of elopement (preventive strategies) and what we can do to respond in situations where prevention strategies are not enough (consequence strategies). Here are a few suggestions:

1. Safe wandering paths: Creating safe wandering paths around the house or in an enclosed backyard can be helpful for someone who enjoys walking and exploring. 
2. Encourage exercise and other meaningful activities.
3. Gated yards: This can help in situations where someone has already eloped outside, since the gated fence can deter them from going into the street.
4. Communication: It is important that at-risk individuals have a way to communicate needs and wants (e.g., vocal, speech-generating device, sign language, picture cards, etc.).
5. Door alarms: Having door alarms can help to alert family/staff of elopements. 
6. Shades covering doors or stop signs on doors: Covering doors/handles or affixing stop signs on doors can deter a person from eloping outside.
7. Identification bracelets or tracking devices: These bracelets and devices can be helpful in the event elopement does occur.
8. Notifying local law enforcement about the individual: It can be helpful to notify law enforcement and neighbors about an individual’s risk for elopement so they can be aware of the likelihood and better respond if needed. You can do this by providing them with a picture of the individual and an emergency fact sheet. Programs such as Silver Alert have helped facilitate this process to allow for quicker response times to elopement.

Determining why someone engages in elopement, understanding its potential dangers, planning ahead to reduce occurrences, and learning how to respond to elopement events are all important ways we can help the individuals in our care be as safe as possible.


Jenna Gilder, Ph.D., BCBA, LABA, is May Institute’s Director of Clinical Services and Training for Adult Services.

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 70 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.