Wandering with meaning: How people with dementia go missing
Debbie Keay knows what it's like for a loved one to go missing.
Forty years ago, her grandfather with Alzheimer's used to wander from his home near Gage Park. In the middle of winter, he trekked into the snowy backyard with no coat and only slippers on his feet.
What was he looking for?
Water.
Not from the kitchen taps, but from a well on his old Saskatchewan farm.
Keay's grandmother would tell her husband to come back inside.
He stood in front of the kitchen sink and he did not know what the taps were and that if you turn them on, water would come out," Keay said.
Back then, far less was known about dementia. Keay's grandpa went missing multiple times during his life, even in the middle of the night. Luckily, he was always found, either by police or neighbours.
But not every case ends that way. In early November, 78-year-old Denise Gloster was found dead more than a day after the Ancaster woman, who had dementia, wandered from her home one night.
After her death, her family requested privacy. She was the 32nd person with dementia reported missing to Hamilton police this year.
It's devastating for the family," Keay said, who was later diagnosed with dementia herself. As much as you try to prevent this from happening ... it still happens."
Wandering is a responsive behaviour, a way for a person with dementia to respond to their environment. Six in 10 people with dementia will get lost at some point in their life, according to the Alzheimer Society. Half who go missing for 24 hours get seriously injured or die. A wanderer may walk, drive or get on a bus.
All behaviours have meaning," said Wendy Willick, a team lead for Behavioural Supports Ontario in the local Alzheimer Society. Her team supports those who care for people who show responsive behaviours due to cognitive impairment.
For example, someone might go outside because it's too hot or cold inside, or they're looking for something (like a bathroom) in a place they no longer recognize. It's common to hear patients say they want to go home," Willick said, perhaps because they're remembering their childhood residence.
They could also be following a past routine, like waking up at dawn to go to work. It's all subjective, she said.
Willick's team meets with clients and their families to better understand a person's triggers. Once they determine potential causes of a behaviour, they help families find ways to respond. For example, if a person with dementia sleeps during the day, they may keep awake at night. So, Willick can recommend engaging the person in activities during the day so they're more likely to sleep later.
It's kind of like doing detective work," she said.
There are tools to help keep people safe, like door alarms or locks high up on a door, or even a sign that says Do not leave." Better lighting can also help individuals better navigate their environment at night and prevent them from taking the wrong door.
Gloster's family gave her an Apple watch so they could find her if she went missing. But she wasn't wearing it when she wandered out of her home overnight on Oct. 31. It was charging at her bedside.
Resources aren't always easy to come by. Not everyone wants to live in long-term care, and even if they do, it can be costly and require a long wait for a bed.
There were 5,550 individuals on wait lists for Hamilton's 27 long-term-care homes as of Oct. 31 (though the same individual can be on the wait list for up to five homes at a time). As of that date, the average number of beds that became available each month was 115.
There are even fewer beds on secure units, which have more staff who are generally trained to deal with wandering. Doors on secure floors may be camouflaged into the walls and accessible by code, Willick said.
People at risk of wandering are among those considered in crisis" and prioritized for admission into a care home, according to the local Home and Community Care Support Services (HCCSS).
There are no separate wait lists for secure units, said Faadia Ghani in a statement on behalf of HCCSS. If a patient needs a secure bed, they wait on the list until one is available.
In 2009, a now-former Hamilton MPP and later Ontario Minister Responsible for Seniors pushed for a Silver Alert system to inform the public of a missing person with dementia. Sophia Aggelonitis went on to found Silver Alert Canada to advocate for a national strategy to help find these individuals.
Every single minute matters" when a senior goes missing, Aggelonitis said. In 1999, her grandmother went missing from their family home in Welland. Hours later, she was found, safe, in a ditch. Aggelonitis calls it a miracle."
We felt so guilty," she said. The one thing I learned from this situation is that the family cannot carry this guilt because it's not their fault."
Alberta and Manitoba introduced Silver Alerts in 2017 - similar to Amber Alerts for children, but not necessarily through phone notifications. In Manitoba, police have used the alerts to send messages through media and social media. British Columbia has a citizen-led alert to notify subscribers of a missing person.
Some police forces, including Halton, use Project Lifesaver. Individuals wear a wristband that emits radio signals to identify their location. Hamilton police don't use Lifesaver technology. Det. Const. Kim Walker said in the past, they didn't have the funds or personnel to support it. And, Hamilton police found most people without needing a full search.
But Walker, Hamilton police's missing persons co-ordinator, said after Gloster's death, she went back to the table" to review if the project might be a possibility. It wouldn't help in every case, though, she said. For example, it only works if the missing person is wearing the bracelet and if its battery is charged.
Every case of wandering is unique," Walker said.
However, they do share some features.
If walking, individuals tend to travel in a straight line, even through thick brush, until they get stuck, Walker said. They're often drawn to water and if they reach it, they try to go in. Wanderers are at risk of dying from hypothermia, drowning or dehydration. Individuals don't often know they're being looked for, so they don't tend to respond to searchers.
The public plays an important role. If something doesn't seem right - a senior is outside not dressed for the weather, for example - they should contact police.
Act on your instincts," Walker said, noting sometimes people hesitate because they don't want to overstep. Later, they feel guilty for not acting.
But no solution is foolproof.
Keay recalls when her grandfather went missing, she became angry at her uncle, his caregiver. She felt like he wasn't doing enough. She realizes now that families sometimes need more help.
People will make assumptions Well why didn't they do this?'" Keay said. There's only so much that people can do."
Maria Iqbal is a reporter at The Spectator. miqbal@thespec.com
Resources
Alzheimer Society of Hamilton Halton - 550 Fennell Ave. E., Suite 205, Hamilton. Telephone: 905-529-7030; Toll Free: 1-888-343-1017; Fax: 905-529-3787. Contact for help at any stage of dementia, even prediagnosis for information.
Alzheimer Society - Finding Your Way: resources on going missing. findingyourwayontario.ca/
Behavioural Supports Ontario - health-care services for older adults with responsive behaviours related to dementia and other neurological conditions, as well as caregiver support. behaviouralsupportsontario.ca/
MedicAlert Connect Protect, Hamilton police - This service gives emergency responders fast access to a person's medical information. Individuals wear a bracelet with a special ID number linked to their photo, identity and medical information. Learn more: medicalert.ca/Programs/MedicAlert-Connect-Protect