Wandering and dementia: What caregivers should know
Suggestions on what signs to look for and how to make things safer at home.
The Alzheimer's Association estimates that as many as 60 percent of people with dementia will wander. That is harmless if it's just aimless walking around a house or nursing home, but it can turn deadly this time of year if seniors go outside alone and get disoriented.
Last week, we wrote about a fatal accident involving a woman who wandered from her independent-living apartment building just north of Philadelphia on a cold night in March 2017. Now, we look at how caregivers can protect seniors who tend to wander.
We spoke with Tama Carey, chief operating officer of Presby's Inspired Life, a senior housing company; Molly Fogel, director of education and social services for Alzheimer's Foundation of America; Robert Koester, a search-and-rescue expert who specializes in dementia patients; Paula Lester, a geriatrician at Stony Brook University Medical Center; Betty Robison, gerontology educator for University of Pittsburgh Medical Center; Joy Shore, vice president of care management at Abramson Center for Jewish Life; Danielle Snyderman, a Jefferson Health geriatrician who works frequently at a retirement community; Jennifer Tapner, CEO of the Watermark at Logan Square, a retirement community in Philadelphia; and Julie Thomas, associate director of clinical services for the Alzheimer's Association Delaware Valley Chapter.
Signs of potential wandering
Some common signs include agitation and pacing, inability to keep a schedule, getting lost or having trouble navigating familiar routes outside or even in one's own home, or talking about going to places from the past. Take note, Lester said, when people with dementia say such things as: "I want to go home. Where's the bus? I have to be at work."
People are at higher risk for wandering after a change in routine or a move. The extra excitement of relatives visiting at the holidays can also be a trigger.
"Most people," Lester said, "have minor episodes before they have major episodes."
Why do they do it?
Brain damage from dementia affects people's ability to think rationally, keep track of time, see properly, remember directions and, possibly most important, evaluate risk. Troublesome behavior may also be a form of communication. People may be sick or experiencing side effects from a new medication. Older people are prone to developing delirium when they have infections or other medical problems. They may also be hungry, thirsty, or in need of a trip to the bathroom. People with dementia may be frustrated by their increasing disability.
"What we're seeing is a human reaction to change," Fogel said.
How do people with dementia behave when they’re lost?
People with dementia don't make new memories so they easily lose track of where they are when they are outside by themselves, Koester said. Dementia causes tunnel vision, which tends to make sufferers walk in fairly straight lines. They may stray off curved paths or roads and get themselves tangled in brush. "They go until they get stuck," he said.
Any search should start with the building where they live. Searchers need to look behind every door, including closets. Sometimes people with dementia go into an elevator and turn it off. In a nursing home, they often crawl into the wrong bed.
They don't realize they're in danger and often fear strangers, Koester said. Only 1 percent to 2 percent call out for help or respond to calls from others.
What can help?
The first step is to make sure the person with dementia isn't agitated because of discomfort. Experts say they check whether the person is in pain, has an infection, or is hungry.
After that, they look for ways to change behavior. They keep wanderers busy with activities and exercise. They try to minimize daytime naps so that wanderers sleep better at night, when it might be easier to slip outside without a caregiver noticing. If the person with dementia is prone to looking for exits in late afternoon, as many are, keep that person distracted with other things to do then. Disable the car.
If someone says, "I want to go home," it's a mistake to reply, "This is your home." Instead, let the person reminisce and try to have a positive conversation about the place they miss. Fogel said she would encourage an older woman to "tell me about this beautiful house that she lived in for 60 years."
Thomas said it sometimes helps to put the person in a car and drive around until they calm down.
Keep in mind that a person who has walked after dinner for an entire life will want to keep doing it. People with Alzheimer's disease "shouldn't be out walking on their own," Robison said. Find someone to walk with the wanderer, Tapner suggests. Facilities should provide safe places for residents with dementia to go outside. "I think there's something to be said for safe wandering versus unsafe wandering," Snyderman said. Wandering can be a sign that someone needs exercise, Carey said.
Technology, both low and high, can also help. If your loved one is still at home, you can put extra locks on the door — simple sliding ones will do — below or above the line of sight. Because of fire risk, you can do this only if someone else is always in the house. You can put simple alarms on doors, windows, and floor mats. There are non-removable watches as well as bracelets, pendants, and ankle devices that can set off alarms, help track individuals, or at least identify them if they're found. Secure facilities such as memory units or nursing homes often use devices that set off alarms if patients approach doors or elevators.
You can put a large Velcro stop sign on the front door or hide it with a curtain.
Shore said caregivers need to be alert to the danger of wandering and prepare for it. "Families and caregivers really need to be focused on safety and making sure there are systems in place early in the process," she said. "You don't really know when someone with cognitive impairment is going to wander."
You can register your loved one with the Alzheimer's Association's MedicAlert program, which speeds up the search process if someone goes missing. Project Lifesaver is another program available in some communities that can aid searchers.
Where should wanderers live?
The experts agreed that people at risk for wandering, and especially those already known to wander, need constant supervision. They can safely stay in their homes with live-in help.
"They're never safe at home by themselves. Ever," Robison said.
Families often want to keep people with dementia at home, but it's not always practical, she said.
Whether wanderers need to be in a locked — the industry prefers the word "secure" — memory unit depends on the severity of their disability. But experts said such units are designed for people with dementia, and their staff receive special training.
While wandering can occur at any stage of dementia, it is usually not the first symptom of brain changes. Snyderman said people who wander also often have trouble with other things, such as managing medications or finances. They already need extra help.
Tapner said moves often stress out older people and make their dementia worse. She thinks it's better to start someone in a memory unit, if that's where they belong, than to try a more independent level of care first.
Experts said people with dementia can occasionally manage to slip through almost any type of security. "There's no foolproof system," Lester said.
More information about wandering is available on the Alzheimer's Association website. The number for the Alzheimer's Association's help line is 800-272-3900.