With the changes that come with Alzheimer’s and other related dementias, a symptom known as wandering can occur. Wandering and getting lost is an emergency. Wandering can be on foot or by car, bus, train, or even airplane. If your person living with dementia is ambulatory, they are a wander risk.
Years ago, Bill, a man with mild dementia, went missing, and we searched in the area close to his home in San Jose, California, where he was last seen. He had been driving, but his wife assured us he never drove out of the area, just a few miles from home. So we scoured the area—the market, the library, the coffee shop, and local friends’ houses. All his regular destinations.
We learned that Bill was a businessman who had taken many trips over his career and knew his way around an airport. His wife shared that he had been talking about going on a business trip and not wanting to miss his flight—even though she reminded him that he was retired.
He was found confused, but fortunately in good shape—across the country in Boston, a frequent destination when he was working.
Wandering and getting lost, which is called elopement, can be a life-threatening situation. This is because the person with dementia is stressed and rarely asks for help. They can’t focus and reason their way out of a difficult situation as before. They can be impulsive and emotional. Fear can take over very quickly, which pushes people to keep moving, instead of staying put and thinking it through.
Susan was a member of a support group I led. One day, after a routine doctor’s appointment, she and her husband parted to use the restrooms. When her husband came back, she was gone. It was raining and he was holding her coat, umbrella, and purse—which he did routinely because normally she would never leave without her purse. He was relying on her thinking and behaving as before. As it turns out, Susan walked for hours and hours, until she was found long after dark and soaking wet by a good Samaritan—in another city.
The majority of those who wander and become lost are on foot. Some do not even realize they are in a vulnerable situation. Driving down a rural highway one sunny afternoon, I noticed an older man walking along the median—a dangerous place for a pedestrian. When I stopped and asked if he needed help, he said his name was Frank and he was on his way to his brother’s house. I offered him a ride, but he didn’t have an address, instead suggesting we just drive around until we found it. I wasn’t doing that!
I said I’d take him home instead, but he couldn’t tell me his own address, or even his last name. He didn’t have an ID or a MedicAlert bracelet, which would have made it easy to get help. But now, I had to decide where to take him. I knew the police station and ER were hectic, stressful places where, because no one could watch him, he would likely leave and become lost again. Instead, I decided to try the local adult day program, praying that someone might know him there. As we walked through the door a staff member said, “Oh hi, Frank.” My prayers were answered.
Certain events can trigger elopement. Has there been a change in routine? A new caregiver or a recent move or a new medication? Even moving the furniture around can cause confusion. Have they been ill? A cold or urinary tract infection can be enough to create disorientation. Even pleasant activities like a family gathering, visiting grandchildren, or a vacation can create enough confusion to cause wandering.
I worked with a woman whose husband had early Alzheimer’s disease. They were extensive travelers, and Ellen wanted to get in one last big trip while they still could. She assured me she would never leave his side and that Steve was excited about the trip.
They flew to Italy and checked into the hotel; exhausted from the trip, Ellen instantly fell asleep, leaving a heavy suitcase against the door to deter her husband’s wandering. When she woke up, he was gone. Ultimately, he was found at a local restaurant ordering coffee—in his pajamas. A nice person bought him some coffee, called the police, and chatted with him until his wife could arrive.
Of course, it’s better to prevent a wandering incident than respond to it. Listen to your loved one—they may be giving you warning signs that they’re getting set to wander off. Are they hinting at going to work, like Bill and his business trip? Or wanting to pick up young children, or go visit a relative? Do they just want to go somewhere, but can’t articulate where? Or are they heading for the door stating, “We have to go”?
I worked with a former nurse who talked about going to work. At first the family would remind her she was 80 years old and long retired. This just upset her. I coached them to tell her, “Today is a holiday, so you can spend the day with me. Shall we go walk to get some frozen yogurt?”
When I worked at the adult day program, women frequently told us they needed to leave and pick up their young children. To help with their anxiety, we’d say their family had called to say they picked up the children and wanted them to spend the day with us. We would assure them that they were good mothers and not to worry. And yes, sometimes we would have to repeat this a few times until we could get them engaged in the activity.
Here’s a big one: Daughter comes to visit and when leaving says goodbye, and Mom says, “Take me with you.” Trying to rationally explain why she can’t go results in anger, tears, and subsequent wandering behaviors.
In this situation I often coach families to simply leave and not say goodbye—I acknowledge that it may not feel right, but not saying goodbye in this situation is a kindness. Of course, do not do it abruptly. Other family members or the care aide could and should distract Mom. Leaving this way eliminates the emotional and stressful goodbye.
Mary visited her mom twice a week, and now that Mom’s dementia had advanced, the leaving was becoming more difficult. I asked her not to say goodbye. Once Mary was gone, Mom often forgot that she had even visited. If she did notice the daughter’s absence, the care aide would say, “Oh, she got called in for work. She is a VIP after all.” Mom knew her daughter had a high-powered career and was proud of her daughter’s success. This answer satisfied her most of the time.
Sometimes your loved one just needs to move. In this case insisting that they sit down can be counterproductive. I coach anyone who will listen that our folks need physical activity, just like everyone does. Moving is healthy, uses energy, and often reduces agitation and the urge to wander. In fact, exercise is a great pre-emptive strategy. I have counseled families who can to hire someone to walk with their loved one. It has multiple benefits: a respite for the caregiver, a healthy activity, another person to engage with. A win-win.
Securing the home environment can also help. Consider motion sensor systems. Or inexpensive, easy-to-install alarms for doorways. You can go low-tech with a simple latch in an unexpected place—high up or near the base of the door. But do not use a dead bolt that requires a key on the inside; this is a fire hazard. You could also disguise the doors, especially at night, with a quilt or curtain.
As an added precaution, consider one of the many GPS-like devices that come in the form of phones, watches, and even shoes. If your loved one is still driving, put one in the car.
No matter what else you do, if your loved one is at risk for wandering, which could include any person with dementia, I strongly recommend a lightweight MedicAlert bracelet—the type that is almost impossible to remove. If your loved one does wander off and is found by strangers, these bracelets can identify them and help get them home. If your loved one is reluctant to wear the bracelet, contact MedicAlert or your local Alzheimer’s program for tips. My favorite idea is for a beloved grandchild to give the bracelet as a gift and put it on them right then and there. Done.
If after all your planning, your loved one wanders off, how will you handle it? There are steps you can take now to prepare for the possibility. Call your local Alzheimer’s group or go online to review the tips. But if your loved one does wander, and you can’t find them after a quick, preliminary search, your first and most essential step is to get help from the local police, fire department, or search and rescue teams. They are literally lifesavers.
Geriatric Care Manager