When the personal support workers called to say her parents weren’t home for their scheduled visit – again – Wendy Dieleman knew the search was on.
“If none of my siblings had them, then we really didn’t know where they were,” Dieleman told CTVNews.ca Wednesday in a phone interview. “(On) different occasions they were in someone else’s apartment visiting or someone had taken them out for supper.”
The problem wasn’t that her parents were doing anything wrong. It was that they had dementia, and without a reliable way to communicate, their movements became unpredictable and concerning.
Also, neither parent owned a phone.
“We didn’t want to give them (one), because a phone would be lost and they wouldn’t be able to operate (it),” Dieleman, of London, Ont., said.
She and her siblings turned to technology that didn’t rely on buttons: they discreetly attached Apple AirTags to their father’s walker and sewed one into their mother’s purse – and soon after, their mother’s hidden pocket.
There were hiccups, including that the AirTags made occasional beeps, prompting her parents to investigate and sometimes remove them. Each time, the family gently explained what the devices were for.
“It was never an argument. They accepted it. If the roles were reversed, they would think that this was a solution,” Dieleman said.
An expert says while children of those with dementia are exploring solutions involving location tracking, this is not their only option.
“Locator technologies are one of several approaches,” Christine Daum explained. Daum is a faculty of health research assistant professor at the University of Waterloo.
“I don’t think they’re necessarily the only approach that can be used. It really needs to be customized and based on the older adult and their circle of support’s preferences and needs,” she added.
Dieleman’s experience reflects the emotional and ethical balancing act that many families face when caring for a loved one with dementia or other cognitive impairments.
“There’s this psychological, relational aspect to dealing with their dementia that each person has to work through,” Dieleman explained. “(It may) seem like lying but they’re in a totally different scenario in life. What they think is reality is not reality.”
While GPS devices can provide safety, they aren’t foolproof, Daum noted.
“Sometimes the individual may not wear the locator device or might be reluctant to wear it, or there are issues around battery or reception,” she said.
Dieleman emphasized the important of adjusting to the shifting nature of dementia, calling it a “constant chain of problem solving, because even if we would find one solution, then within a month, it might no longer work or apply.”
This daughter’s story is part of a larger trend. Canadians are increasingly navigating the complex realities of dementia and Alzheimer’s caregiving.
The Alzheimer’s Society of Canada estimated that more than 771,000 people in Canada will live with dementia by Jan. 1, with that number expected to reach nearly one million by 2030.
Approximately 750,000 Canadians had Alzheimer’s diseases or another form of dementia in 2024, according to Statistics Canada.
CTVNews.ca asked readers – who are adult children – to share their experiences with tracking their aging parents. Here’s what they had to say.
Technology versus human touch
Diane Stoddard of Waterloo, Ont., has always been close to her 94-year-old mother. But when her mother, who has advanced dementia, began wandering away from her retirement home last year, Stoddard knew she had to act.
“They don’t have a lockdown unit there,” Stoddard explained. “There’s usually someone at reception but not always. Twice, she walked away.”
On one of those occasions, her mom wandered far enough that, had a staff member not recognized her from a passing car, it’s unclear how or when she might have been found.
According to Public Safety Canada, 60 per cent of people living with dementia will go missing at some point during their experience with the disease.
“If a person with Alzheimer’s disease is not found within 12 hours of being lost, there is a 50 per cent chance that they will be found injured or dead from hypothermia, dehydration or drowning,” it said.
The close call led Stoddard and her husband to research GPS tracking options. The solution? A GPS device, originally designed for vehicles, attached to her mother’s walker. Stoddard said that while the system isn’t foolproof, they can watch her movements in real time.
With a long-lasting battery of up to five weeks and the ability to set up a geo fence – a virtual boundary around the retirement home – it gives Stoddard alerts on her phone if her mother leaves the premise.
“Physically, she’s in pretty good shape, but her memory is almost nonexistent,” Stoddard said. She said she didn’t discuss the GPS tracker with her mother because her mother wouldn’t remember the conversation. She added that she consulted with her siblings who thought it would be a good idea.
“She’s no longer competent to give consent, and as (power of attorney), it’s my job to take care of her,” Stoddard said, “This is the best we can do while she awaits long-term care placement.”
She offered advice to other families caring for loved ones with memory-loss conditions: “Do all you can to keep your loved ones safe. Do your research and find the devices that’s best for your loved one.”
Daum said of the tracking devices that it’s important for children to keep in mind that “a piece of technology can’t replace a human being.”
Other solutions Daum noted include a strong circle of support and community localized alert systems like B.C. Silver Alert - which is used to notify people when a vulnerable senior is missing.
Human involvement in the situation can understand to a deeper extent than technology-based solutions the individual and the host of triggers or risk factors involved in their specific situation is, Daum said.
Privacy and autonomy
Daum said that persons with dementia are entitled to a certain amount of privacy. This means respecting their independence, even if family members might disagree with certain activities, such as a trip to the casino or taking a walk without a set destination.
“While (a walk) might be perceived as wandering and getting lost, it’s actually purposeful. There is a fine line,” Daum said.
Ann Pickthall of Burnaby, B.C., a retired nurse with years of experience in both hospital and home-care settings, said partial consent can occur if the parent agrees to put on the tracking device, like a watch.
“It gets tricky. There’s a grey area in there that could be quite challenging when the privacy angle comes in,” she said.
The key is ongoing informed consent, Daum said.
“It’s not only a one-time consent, it’s an ongoing consent that needs to be negotiated as the person’s condition changes.”
While some think safety outweighs privacy, Pickthall said she’s seen the dangers of dementia-related wandering up close.
Pickthall’s firsthand stories paint a vivid picture of the challenges caregivers face. She’s seen clients who leave stove burners on, wander outside without shoes, or simply disappear because they can’t recall where they live.
“Most people with dementia tend to wander at night,” she said. “And because many don’t want caregivers in their homes overnight, the responsibility often falls on an elderly spouse who is left with sleep deprivation.”
Daum said from research, it’s not only individuals who are in community dwellings or in their own home who are at risk of going missing, it’s also people who go missing from care homes, assisted-living facilities and hospitals.
Pickthall said she’s helped families install alarms on doors, remove stove knobs and discreetly sew or slip location trackers into clothing.
“GPS and accelerometers are absolutely invaluable,” Pickthall said. Dig deeper into hesitancy, she implored, advising that families should weigh cost, privacy concerns and senior’s trust.
‘Fun way to stay connected’
In her work, Pickthall found that many clients – especially those in the early or mid-stages of dementia – were open to monitoring solutions if approached with care.
“They might not like the word ‘lost’ but they’ll admit to getting ‘turned around,’” she explained.
For 72-year-old Elisa Woo of Abbotsford, B.C., being tracked by her two sons via iPhone’s Find My app isn’t an invasion of privacy, it’s a sign of love and connection.
“My husband and I didn’t even have iPhones until a few years ago,” she said.
Now with her sons living on opposite ends of the globe and the family scattered across three continents, tracking each other has become part of their normal routine.
For Woo and her husband, tracking each other is less about surveillance and more about co-ordination.
“I go out to Vancouver a lot and we only have one car. My husband likes to know where I am so he knows when to start cooking,” she said with a laugh.
With time zones spanning from Europe to Australia to Canada’s West Coast, her sons use the same technology for location tracking and to time video chats.
“Sometimes they’ll see we’re home and just call to chat,” Woo said. “We think it’s a fun way to stay connected.”
Not all her friends feel the same.
“Some say it’s like being trapped, that they don’t want their kids knowing where they are all the time. But I say – why not? You’re not doing anything wrong. It’s just a way to be safe and connected.”
Though she and her husband are still in good health, Woo acknowledged that things could change.
“Our kids always say, ‘Just think of technology as a school. You’re learning stuff.’”
Daum offered a note of caution for tracking apps, saying, “I would expect that in 10 years, there will be more older adults or persons living with dementia with cellphones (as) a part of their daily life.”
Apps like Life360 are increasingly popular for tracking the whereabouts of loved ones. However, Daum warned that not all apps offer long-term reliability.
“The risk is the lack of regulation. Here today, gone tomorrow. That might lead to false sense of security.”
Caregivers should be cautious about relying on apps’ functionality in case they stop working properly, Daum said.
