Uncovering the facts: 5 things you thought were true about wandering

If you don’t know what it means for a person living with dementia to wander, you’re not alone. Despite its prevalence, the behavior is shrouded in mystery, with worst-case scenarios surfacing in the media, evoking all kinds of scary images. Wandering, however, isn’t just about a person walking away and getting lost.

There are several misconceptions about wandering, says Dr. Lili Liu, a professor at the University of Waterloo’s School of Public Health Sciences. She and a team of researchers work closely with MedicAlert focusing specifically on dementia-related research. Recently Dr. Lui and her team analyzed wandering behavior of more than 50,000 MedicAlert subscribers with dementia. Here’s what she says are five of the most common wandering myths.

All wandering is the same

A quick internet search on the topic of wandering would leave you thinking the behavior is all about leaving home and becoming lost. However, wandering is actually an umbrella term that covers many different types of behavior, explains Dr. Liu.

Pacing, or lapping, is generally seen in care home settings. Exit-seeking, sometimes called elopement, involves actively trying to leave the boundaries of a particular area, whether it’s a bedroom, apartment or care home. Critical wandering occurs when a person with dementia goes missing, and there’s a risk of injury or death. Spatial disorientation can happen anywhere when a person momentarily forgets where they are and how to get where they’re going. It is often one of the earliest predictors of Alzheimer’s disease, and sometimes the most frightening for care partners.

Wandering only happens in middle- or late-stage dementia

While most critical wandering happens in people with mid to late-stage dementia, any kind of wandering can and does occur in the early stages as well. “Sometimes that very first incident is what causes an individual to see a physician for a diagnosis,” notes Dr. Liu.

Part of the danger of this misconception about wandering is that care partners assume it isn’t something they need to worry about until later. It’s crucial, however, to ensure the person living with dementia subscribes to a program like MedicAlert’s Safe & Found before wandering actually takes place. Safe & Found is the National Wandering Registry which provides first responders and volunteer search and rescue teams critical information on wandering patterns, triggers and de-escalation techniques that can help in managing the individual when they are located as well as other health information that can be helpful during a search and rescue scenario.

Care homes prevent people with dementia from wandering

Many people assume that putting their loved one in a memory care facility will keep that person safe. Unfortunately, that isn’t the case. “Our research with MedicAlert has confirmed some of the research out there already that says 20 percent of people with dementia who’ve been reported missing are from care facilities,” explains Dr. Liu.

While most critical wandering incidents do appear to occur with people who live in the community, the risk remains high enough that a wandering plan should be maintained.

People with dementia only become disoriented in less-familiar environments

Many community organizations offer tips to reduce the likelihood of someone with dementia becoming lost or going missing. While some of these tips are helpful, others might give you a false sense of safety. In particular, the idea that people with dementia should avoid new places and maintain routines in familiar environments implies that this will prevent disorientation, which, Dr. Liu explains, is untrue.

“Wandering and going missing can also occur in familiar environments,” she says. “Not only that, even in one’s own home, a person can have a moment of disorientation, look around and not recognize where they are.”

Disorientation within a home setting is sometimes the reason behind exit-seeking behavior – the person is looking for something familiar, possibly from decades ago, and leaves to search for that familiarity.

There’s no rhyme or reason behind wandering behavior

There is a certain amount of unpredictability when it comes to wandering. Still, Dr. Liu and her team at the University of Waterloo are slowly working to change that, as they look for behaviour patterns in MedicAlert’s data and other sources. What they are beginning to uncover is that there can be triggers for wandering or exit-seeking. Although some are more common – like suddenly not recognizing a loved one – Dr. Liu notes that most people living with dementia have triggers that are as unique as they are.

“As researchers we want to understand why this behaviour occurs so we can help organizations like MedicAlert to develop tools to support the person living with dementia and their care partners. It could be they suddenly don’t recognize their home, it could be a discomfort issue, where they’re too hot or cold, or it could be anxiety because they don’t recognize their grandchildren and feel their space has been invaded,” she explains. “That’s why it’s important to have a person-centred approach.”

While Dr. Liu, her team, and MedicAlert are working towards understanding who will eventually be prone to wandering, the old adage, “forewarned is forearmed,” is fitting. Knowing details about this behaviour will ensure that you’re ready if your loved one does wander or become disoriented. One of the best ways to prepare is to help someone you care about who has dementia subscribe to MedicAlert’s Safe & Found program. It is the only service that can provide first responders with complete and extremely helpful information should a loved one wander.

“We tell everyone, as soon as you know you have a cognitive condition, you’re at risk,” says Dr. Liu. “We’re not saying that the risk is 100 percent – but you are at risk. Being proactive as opposed to reactive means you can be at peace.”