People with dementia wander for a variety of reasons. Many times, the wandering behavior is a reaction to an unrelated event–that is, people with dementia do not simply decide to go on a journey. Some people are at higher risk for wandering than others. Read on for the reasons behind the wandering behavior, some of the signs of beginning wandering behavior, and how to prevent/manage it.
Why Do People with Dementia Wander?
Lost in Their Own Home
When we live somewhere, our minds create a map of the location. If we relocate, and most of us do, our minds create new maps of our new location. The new maps literally overlay the older maps. Sometimes, the maps can become mixed up. Have you ever reached for a light switch and realized you were reaching in the wrong place? This usually happens when you have recently moved to a new place but your mind is still accessing the former map. The more one moves, and the shorter the time between the moves, the more likely the location maps get intertwined. I have experienced this first hand. Because of job changes and a couple of other life events, I have lived in 5 different houses since 2012. I’ve been in my most recent place 7 months, and I still open the wrong cabinet to locate my coffee mug.
People with dementia may literally get lost going to the bathroom because of mixed-up mind maps. As the dementia worsens and the brain shrinks, the person with dementia moves backward in time. He or she may lose the layout of the CURRENT house or apartment. Instead of turning left to head towards the bathroom, he or she may turn right and find themselves outside. Usually, the person will turn back and head into the house, but if the door should close behind them and lock…the person may panic and try to seek help. And wind up completely lost, because he or she no longer possesses the neighborhood map. Or, the mind may be accessing the wrong neighborhood map and the person becomes hopelessly lost within a few feet of their current home.
Looking for Something
Ever lose or misplace something valuable? I have…and I have spent hours searching for it. I have been so engrossed in the search that I suddenly found myself looking in the strangest places. The person with dementia may be looking for something, or someone, and find themselves outside. Although it defies OUR logic, it may make sense to keep searching OUTSIDE of the house. The person may be so engrossed in the search that he or she does not realize they are becoming lost until it happens.
Leaving a Stressful Situation
I had a relative who handled all stressful situations by “going for a walk.” Did not matter the time of day or the weather. When she became overwhelmed, off she went. There were times when she and her spouse were engaged in a heated argument and she simply walked out for an hour or two. She always came back. This was her method of coping and she used it her entire life.
When she developed beginning signs of dementia, she still used this coping method…but she sometimes returned to the house with help from a neighbor or a police officer. We started to recognize that if something made her anxious, she would fidget, then pace, then attempt to leave the room. As the dementia progressed, she continued to use a decades-old coping pattern but she no longer had sufficient memory to safely find her way back.
Repeating a Life-Long Pattern
We are creatures of habit. We tend to repeat the same activities on a daily basis. Some of us may even have a favorite or habitual breakfast or snack. These habits and patterns provide comforting structures to our lives.
When someone has dementia and moves backward in time, he or she may fall into an old groove. He or she may believe they have to leave to go to work, or to pick up the children. As the brain shrinks and the newer memories are lost, the older deeper memories literally rise to the surface and may seem very real. Sometimes the activities of others may accidentally “cue” or “trigger” these memories and their related behaviors. For example, one of the nursing home residents for whom I cared was a retired nurse. Shift-change was a trigger for her to try to leave the building because she saw the nurses putting on their coats and exiting the unit. She happily tried to exit with the group. She became upset when she was told she could not leave.
Who Is At Risk for Wandering?
Honestly, anyone with a memory problem and who can move independently, even in a wheelchair, is a wandering risk. But some people are more at-risk for this behavior than others:
People Who Were Always Active
There are individuals who literally rarely sat still there entire lives. My mother, for example, is always on the move. She raised five children as a single parent and worked multiple jobs. I only ever saw her sit still in one of 3 places: church (and even then, she was sitting, standing, kneeling throughout the Mass); at the dinner table for meals (15 minutes maximum, and then she was jumping up and down to get an item, turn off the stove, or put something back in the fridge); or on the commode (don’t judge–for the longest time we only had one bathroom in the entire house). Even now, in her mid-seventies, she buzzes around her house like a bee on crystal meth. If she should ever develop dementia, she will be a HUGE wandering risk.
People Who Walked or Ran as Exercise or as a Coping Mechanism
Like my relative, people who used walking or running as their preferred activity or in response to stress are likely to continue those movement behaviors even as their memory begins to unravel.
Relocation for a person with dementia can create a wandering issue. Sometimes, relocation cannot be helped: the person with dementia requires a safer space, or the adult child caregiver has to move mom or dad back to the caregiver’s home in order to fulfill care-giving responsibilities. However, I have seen situations where a person with moderate to severe dementia is taken on a trip and becomes horribly disoriented in the hotel or in the host’s house and leaves the area looking for “home.”
Care-Recipient/Care Partner Learning Curve
Not all of us are wired to be caregivers or care partners. Just like all of us can sing but only a minority of us are singers, all of us can be caring but a much smaller subset can be true caregivers or care partners. THIS IS NOT A JUDGMENT, IT IS REALITY. Yet, many of us become caregivers or care partners “by default” because we are a spouse, a sibling, a friend, or an adult child of someone with dementia. Some people are able to intuitively “figure things out” and provide care in such a way that the person with dementia does not feel anxious. The MAJORITY of us have to learn (and you are reading this blog, which means you are trying to learn!!). Care partners who are new to the situation, or who are struggling, may not realize that the person with dementia is much more impaired than he or she looks (or tries to act), and may not provide sufficient supervision. Care partners also worry about being too overprotective and not respecting the person with dementia’s autonomy and dignity. That is a valid concern, and I address it in other blog posts. Care partners may be unwittingly triggering anxiety in the person with dementia by arguing, talking too much, or constantly presenting OUR reality. Faced with anxiety, the person with dementia attempts to leave the stressful situation by going out the door.
Strategies to Prevent Wandering
Provide Daily Physical Activity
People who crave activity are not going to change. Accompany them on their walks or enlist the help of a responsible person to do so. Do not rely solely on animals. I cared for a gentleman whose family had him take the family dog for a walk every day. Their rationale was that the dog would always find its way home. True. The dog did always find its way home, but not always with the gentleman on the other end of the leash.
Some care partners take their loved one to the gym and have them use the treadmill. In fact, one of my fellow bloggers and friends, Bob DeMarco, took his 88-year-old mother to the gym daily and she used a treadmill without incident or injury. He even had her weight-training. Bob credits this activity with his mother’s improved outlook and physical functioning. I have care partners who participate in water aerobics with their loved ones with dementia. It does not matter how you move…just move!!
Strategically “Hide” Exits
Amazon sells murals that look like bookshelves but stick onto doors. These murals work. I first saw one in a local long-term care facility and thought, “Wow, what a cool idea!”
Child-Proof Door Handles
One of my family caregivers purchased plastic doorknob covers that had to be squeezed a certain way in order to open the door. They were designed to keep children from exiting rooms. These child-proof handles also worked with the family member with dementia. A word of caution, though…if the person with dementia is trying to leave the and the doorknob will not work, agitation and anger may arise. I would prefer that people go with camouflaging exits.
Other Safety Tips
Check with your local Alzheimer’s Association or Area Agency on Aging to see if law enforcement participates in any type of wandering program. Some areas provide free or low-cost GPS-style bracelets that can be used to track someone with dementia if they become lost. Another option is to make sure that the person has a Medic-alert bracelet with “Dementia” printed on it and the care partner’s cell phone. Some family members enable the “Find my Phone” app on smart phones. That only works if the person keeps the cell phone on his or her person at all times. They usually do not.
Want more information? I provide monthly webinars and individual coaching for caregivers who would like to learn more about dementia, and how to successfully deal with frustrating or scary behaviors. Click here!
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.