Wandering is a common issue in people living with dementia, affecting 20% of people living with dementia out in the community and 60% of those in long-term care settings. There are 3 types of wandering behavior. The first is elopement, where a person is trying to escape from an unfamiliar environment—you may see this in long-term care settings where someone is trying to leave the unit. The second is repetitive pacing and the third is becoming lost. Twenty percent of the people with dementia who wander die before they are found.
Development of Wandering Behavior
The development of wandering behavior increases as the dementia worsens—usually starting in the moderate stage, where the person can still perform many self-care activities but can no longer live independently. Wandering behavior can occur in any of the dementias. Wandering can be triggered by a desire to escape from an unfamiliar setting—the elopement I mentioned a few minutes ago. Wandering behavior can occur because the person living with dementia is seeking social interaction or is looking for someone, like a specific family member. When people living with dementia go back in time, they may be searching for a parent or sibling who may have passed away some time ago. Sometimes, people living with dementia feel restless or are bored, and so they start to walk around. Other times, they may believe that they are still employed and are attempting to travel to their job.
How do you know if your loved one is at risk for wandering? Taylor Thomas and Aaron Ritter, who work in people living with dementia, recommend asking yourself these 2 questions:
- Has your family member ever wandered away from their home?
- Has your family member ever gotten lost while in public?
If the answer is “yes” to either of these questions, it is important to develop a neighborhood awareness and safety plan, which I’m going to describe below. If the answer to either question is “no,” there are a few more things to consider. Does your family member seem disoriented at home or ask to go home even when they are already there? Does your family member become nervous in public or believe they still work somewhere? Does your family member ask where other relatives are, especially relatives that are no longer alive? If the answer to any of these questions is yes, it would be a good idea to develop a neighborhood awareness and safety plan.
The Alzheimer’s Association has some great resources for creating a neighborhood awareness and safety plan. First, find out if your city or county has a safe return service, like Project Lifesaver or MedicAlert. You can go to the Alzheimer’s Association website and enroll in a safe return service through their partnership with MedicAlert. You should also let neighbors know that your loved one has dementia so that they can call you if they see your family member outside. Keep a list of places they are likely to wander to, like a previous home or worksite. Also, have a recent photograph available. Both of these items will help police locate your loved one should they wander off. If your family member does wander, Thomas and Ritter suggests alerting police no more than 15 minutes after you notice them missing, immediately search areas favoring the direction of the dominant hand, and focusing the search within 1.5 miles of the home. The Alzheimer’s Association also recommends checking ponds, tree lines or fence lines because many people are located within brush.
There are steps you can take to prevent or minimize wandering. First, make sure that your family member gets plenty of exercise during the day, especially walks outside, weather permitting. It also helps to have safe areas for walking both inside and outside the home. You can use black tape or paint to create a 2-foot rectangle in front of a door, which may serve as a visual barrier—the person doesn’t want to step in the “hole.” Other ideas include camouflaging doors with curtains or posters of bookshelves, covering door handles with cloth the same color as the door, and placing deadbolt locks out of the line of sight, either high or low, on exterior doors. Use night lights. Other strategies include putting alarms or bells on doors to let you know that a door is being opened, and placing a pressure-sensitive mat in front of a door and at the person’s bedside to let you know if they are on the move.
Make sure the environment is calm and without excessive noise, which can cause stimulation and the desire to exit. I recommend keeping the bathroom door open and other doors closed, and keeping the light on in the bathroom even during the day to “steer” them in the right direction. You may also want to remove items that can trigger a person’s desire to leave, such as coats, keys, pocketbooks, and wallets. Finally, never leave a person living with dementia alone in a car.
Wandering behavior is dangerous for people living with dementia. The time to plan is BEFORE wandering behavior becomes an issue.
Dr. Rita Jablonski
Rita Jablonski, PhD, CRNP, FAAN, FGSA is a nurse practitioner, researcher, tenured professor, and former family caregiver. Her research and practice involve all aspects of dementia management; she is best known for non-drug strategies to address dementia-related behaviors.