Lost and Found

For individuals living with dementia, walking can be a useful way to stay physically active and socially engaged, but getting lost is a real risk. These proactive safety strategies and new, more effective community response methods can help balance protection with autonomy.

It was a warm summer day in 2009 when Paul Lea left his Toronto home for the grocery store a few streets away. He’d done this walk countless times before, but, this time, Lea strayed from his usual route and took a turn into a side street.

When Lea turned the corner, it was as though he’d stumbled into a new city. Nothing looked familiar. He had no idea how to get home. He was lost, and he felt utterly anxious and alone.

It was Lea’s neighbour who found him, sitting on the sidewalk and suffering a panic attack. He was three blocks from his apartment.

Not all who wander are lost

When Lea was first diagnosed with vascular dementia earlier in 2009, he was afraid to go outside in case he got lost. Lea certainly isn’t alone. In fact, it is relatively common for individuals with dementia to get lost, and often safety strategies aren’t implemented until after a scare.

According to data collected from the Calgary Police Service, 191 seniors ages 65 and older were reported missing in 2018 in Calgary alone. And government statistics show that close to 46,000 Albertans are living with dementia. A frequently cited statistic is that 60 per cent of individuals with
dementia wander, although what that truly means is debated. Paul Bartel, the manager of Learning
and Support Services at the Alzheimer Society of Calgary, explains that, even though individuals with dementia can get lost, there aren’t accurate numbers reflecting the regularity.

“Does this 60 per cent statistic mean they have gone for a walk, gotten lost and come back? It’s unclear if this number means that 60 per cent of individuals with dementia have been reported lost, and it’s unclear if the number reflects people who get lost more than once,” says Bartel. “The source of this statistic is also unclear.”

This lack of clarity is why some prefer the terms wayfinding or walkabout. Commonly, people confuse wandering and getting lost as one and the same; in reality, an individual with dementia won’t always get lost while wandering.

The reasons an individual with dementia will wander are numerous. Often, walking is a familiar activity and it can be a way to escape an upsetting situation or express a desire. Bartel adds that going for a walk isn’t necessarily something to prevent; there are the physical benefits of exercise and the mental benefits of being outdoors. Simply, anyone can get lost, but the issue is that those living with dementia are at greater risk of getting lost — and that is when wandering can become unsafe.

Starting a global conversation

Worldwide, the number of individuals living with dementia is projected to reach 152 million by 2050. Dr. Noelannah Neubauer, a post-doctoral fellow in the faculty of applied health sciences at the University of Waterloo, believes international collaboration exploring the topic of wandering will yield the most effective results.

In 2018, during her PhD research in the faculty of rehabilitation medicine at the University of Alberta, Neubauer connected over Twitter with Katie Gambier-Ross, a PhD student out of the University of Edinburgh doing similar work.

“We learned that, even though there’s not that many researchers like us in this field, none of us were speaking to each other,” says Neubauer. “Instead of us all recreating the wheel and each doing our own work, Katie and I thought that we should have a group that represents this issue internationally.”

Neubauer and Gambier-Ross co-founded the International Consortium on Dementia and Wayfinding, a platform that connects people from around the world who are working to promote safe wandering, educate the community about wandering and find ways to effectively respond when people living with dementia do get lost. Since the first meeting in January 2018, there have been 15 online and in-person meetings with representatives from eight countries. Simply, the Consortium is about information sharing, connecting researchers with anyone else whose lives are touched by dementia in order to take the conversation beyond the academic realm.

Finding a safety strategy that’s just right

In December 2017, as part of her PhD work at the U of A, Neubauer developed a series of guidelines related to wandering. Easy to use, the guidelines offer proactive strategies around dementia-related wandering intended to direct intervention and manage the risks of getting lost. The first of their kind, the guidelines can be found online, including on the findingyourwayontario.ca website.

Neubauer found that there are so many strategies meant to keep individuals with dementia safe while wandering that the sheer volume of options becomes difficult to navigate.

“There is no one-size-fits-all safety solution,” says Neubauer. “There are more than 300 types of high-tech solutions [like GPS devices] and low-tech strategies [like ID bracelets] out there, and it took me almost five months to come across them all.”

Neubauer’s guidelines streamline these strategies and outline which are recommended depending on whether the individual with dementia’s risk of getting lost while wandering is low, medium or high.

“There’s this awful paradox where individuals with dementia or their care partner don’t see a risk of getting lost at all, and so no safety strategy is applied until something happens,” says Neubauer. “Then the care partner sees the way-finding behaviour as so risky that they put all these strategies in place that restrict independence.”

Neubauer has coined this risk perception the “Goldilocks Principle on Dementia and Wayfinding” and says an “all or nothing approach” isn’t effective. The goal is to find a personalized and proactive safety strategy that is just right.

Implementing safety solutions

Ron Beleno’s father, Rey, was diagnosed with Alzheimer’s in 2007. After the diagnosis, Rey would leave his Toronto home for the nearby plaza to buy a coffee and visit the stores. He had a routine that kept him happy.

“Once in a while, my mom would call to say that he was an hour late and wasn’t back yet. But he always came home,” says Beleno.

One summer evening, Rey didn’t come home from his walk. Hours passed and he still hadn’t returned. The incident resulted in an hours-long police search. Late that night, Rey was found 12 kilometres from his home, near his former place of work. After the experience, Beleno became an advocate for using technology to support aging in place.

Advances in tracking technology — think specialized tracking apps like Life360, and GPS devices like GPS insoles — means care partners like Beleno can still support their loved ones’ independence, but keep them safe should they get lost. Beleno gave his father two GPS devices; both were attached to two sets of the same keys. He also set up a few geofences, a virtual boundary defined by GPS that triggers an alert if Rey went beyond the virtual barrier — specifically, in Rey’s case, a safe distance of 500 metres.

“He could still go and walk, but I was alerted if he left the safe vicinity,” says Beleno. “There were still incidents of him getting lost, but they were safe incidents because we could track him.”

Beleno’s strategy toward promoting safe wandering is something Neubauer hopes to reinforce with her guidelines: “Within the guidelines is the push for people to have multiple safety tools,” says Neubauer. “For example, if GPS fails, to also have a low-tech strategy so then there’s something else at play.”

When vulnerable seniors go missing

But even the most cutting-edge safety technologies can fail. The GPS charge might die or the user might leave the house without their tracking device. During Beleno’s experience as a care partner, he found GPS devices to be expensive, and his father sometimes forgot the purpose of the device’s different buttons. And, for someone not quite as tech-savvy as Beleno, the set-up of GPS devices and geofences can be challenging.

Because of these limitations, an effective response strategy needs to be in place should individuals with dementia go missing, and a police search is just one piece of that. The Consortium has highlighted the various response strategies in the works around the world, which will eventually be listed on its under-
construction website, helping members build on what already exists.

Kim Savard, program manager at Carya, a social services agency in Calgary and participant in the Consortium, is a co-founder in the Calgary Coordinated Community Response to Missing Seniors committee. Building on the committee’s work and taking what she’s learned of other countries’ response strategies through the Consortium, she believes the most effective response methods involve a wider network than just the care partner and the police.

“We know we need to focus on the prevention piece so people don’t go missing and the education piece around what to do if you find somebody who does go missing,” says Savard. “In terms of the response piece, we are looking at how we bring the community together to support caregivers and police by being on the lookout. We are also focusing on the follow up after a missing incident to provide connection to resources [and] support.”

The engaged community element was integral for Beleno’s father. It wasn’t technology or a strategic response strategy that helped police find Rey. Ultimately, it was a passerby who noticed something was wrong and called paramedics and police for help.

Wandering isn’t necessarily something to be prevented, but awareness of the possibility that someone living with dementia can get lost — and that getting lost can end tragically — needs to be discussed openly so proactive safety strategies can be put into place.

After his scare that summer morning, Paul Lea has adopted an active approach to his safety and his independence. Lea’s strategy is to always carry his iPhone, ready to type in his home address to guide him home if he does feel lost. [ ]