By Kari Baker, CDP | High Country Senior Advisors | Flagstaff, Arizona
According to the Alzheimer's Association, six in 10 people living with dementia will wander at least once, and many do it again and again. If you are caring for someone with dementia, this isn't a question of if. It is a question of when, and what you will do when it happens.
When a person with dementia wanders, we say they are lost. We say it because we are afraid, and because from where we stand it looks true.
But in the mind of the person who is wandering, they are not lost. They know exactly where they are going. Their behavior makes sense to them. They have a destination, a purpose, and a reason, and the only person who thinks anything is wrong is us.
That distinction is worth making, because everything about how we respond depends on it.
"I'm going to church."
My grandmother was picked up by the police in the middle of the night, in the middle of the week. When they asked where she was headed, she told them without hesitation: she was going to church.
She wasn't confused about her own intentions. Church was where she belonged. It was where her people were and where she felt most like herself. Her brain had lost the clock, the calendar, and the difference between 2 a.m. on a Tuesday and Sunday morning. But it had not lost the pull toward the place that mattered most to her.
A few weeks later she was picked up again. This time she was looking for "the kids."
Thankfully, my cousin Gigi worked for the police department as a 911 dispatcher, and the officers were familiar with our situation. Gigi was able to get my grandmother home safely. Not every family has a Gigi, and we knew how lucky we were.
The well-intentioned fixes
What happened next is something I understand deeply, and I don't say it with judgment, because every one of us in that situation was scared.
When wandering starts, almost every family reaches for the same set of fixes. Deadbolts that need a key. Hiding the car keys, the coat, and the shoes. Furniture pushed in front of the door. A family member sleeping across the doorway. Canceling outings so there is nothing to leave for. Every one of these comes from love, and every one comes from fear.
In our case, the locks on her home were changed so she couldn't get out. The goal was to keep her safe. But a home a person can't leave is also a home that no one can easily get into. If there had been a fire or a medical emergency, help would have been delayed at the worst possible moment. The same is true of many of the other fixes on that list.
And there was a second cost, one that is easy to miss. She was isolated. My grandmother was social. She quilted with "the ladies" at her church, and those hours were some of the best of her week. Her caregiver would often take her to the church to be with the quilters, and someone there would be responsible for getting her home.
Locks that keep a person in also keep their life out.
The bench
One day she told the person giving her a ride to drop her at Walmart. She said she had a ride home. She didn't.
So she sat on a bench in front of that Walmart. For hours. And hours. And hours.
Finally, someone noticed that the woman on the bench had not moved. They found a way to get her home.
I think about that bench often. She wasn't afraid, and she didn't believe she was in any danger. She was a woman waiting for a ride she was sure was coming. The danger was real, but only the people who loved her could see it.
Why this is so hard for everyone
This is the heart of the problem for people who wander and for the people who care for them.
The person wandering doesn't believe they are in danger. The care partner knows better. And when you know better, and you are exhausted, and you are picturing every terrible possibility, fear and frustration quietly take the place of compassion.
Your voice gets sharper. You say, "You can't just leave! Do you know how worried I was?"
And the person in front of you, who still believes they were simply going to church, feels scolded for something they don't recognize as wrong. They feel confused and a little ashamed, and that only makes the next attempt more likely.
Nobody is the villain in this story. A frightened family and a person with a perfectly logical destination are both doing what makes sense from where they stand.
What helps
Meeting the need behind the wandering is almost always more effective than blocking the door.
Ask what the destination means. Church, "the kids," work, home: each one is a clue about what she needs and misses.
Give the purpose a safe outlet. A walk together, a visit with friends, time with the quilters.
Add safety without trapping. Door chimes or alarms that alert you, an ID bracelet or wallet card, a recent photo on your phone, and a heads-up to neighbors and local law enforcement all help. Locking a person inside does not.
Know your resources. The Alzheimer's Association has a free 24/7 Helpline at 800-272-3900 and wandering safety information at alz.org/safety.
Don't scold. If she comes home safely, the goal of that moment is comfort.
When it may be time to consider more support
Sometimes, even with all of that in place, the picture doesn't change. Wandering is still happening. Safety is still the primary concern. The care partner is running on fumes. And the person with dementia is becoming more isolated, not less.
When safety and isolation are both the issue, it may be time to consider placement.
I know how hard that decision is. It can feel like failure, and it isn't. When the right community is found, it can be a gift to both people. The individual gets a safe place to move freely, with people around her, activities, and company. The care partner gets to exhale.
And something wonderful often happens next. When fear and exhaustion are no longer running the relationship, love and patience can return to it. You get to go back to being a daughter, a husband, a friend, instead of a security guard.
If someone you love is wandering, or you are lying awake wondering if tonight will be the night, you don't have to figure this out alone. I help families think through safety, communication, and next steps, including what placement can look like when the time is right. Remote coaching is available by phone or video anywhere in Arizona and beyond, and the first conversation is always free.
Call or text: 480.789.1058
Email: kari.baker@highcountryseniors.com
Web: highcountryseniors.com
