No Warning

It happens without warning, often before family members have even accepted it as a possibility. It happens to people of all ages and backgrounds. Anyone who has dementia and can walk is at risk.

“Caregivers will say, ‘I don’t have to worry about that — my relative doesn’t wander,’” says Meredeth Rowe, a Florida nursing professor and researcher who is a rescue consultant for dementia-driven wandering cases.

But the vast majority of missing incidents occur unexpectedly, Rowe says, during the mild to moderate stages of the disease, often when the person has never wandered previously and is doing something they have done many times before without incident.

It happens daily across Canada. In the city of Toronto alone, police say, five seniors are reported missing every day and at least three of them have dementia or some form of memory impairment.Roughly 207,000 people in Ontario are currently living with dementia, which means about 124,000 of them will wander.

Six in 10 people with dementia will wander at least once, according to the Alzheimer Society of Toronto. This figure, extracted from multiple U.S. studies, is thought to be a conservative estimate. Applied to current and projected Canadian prevalence rates, the numbers are staggering.

Roughly 207,000 people in Ontario are currently living with dementia, which means about 124,000 of them will wander.

With the dementia population expected to increase to 250,000 in the next five years, we could have another 30,000 wanderers to look out for.

It’s a challenging behaviour that has led some nursing homes to drug residents with powerful antipsychotics, as a Star investigation revealed earlier this year. Other homes around the world have come up with innovative solutions to protect residents from wandering, devoting secure floors or even entire residences to dementia-centred care.

Wandering is an even greater challenge for family members who want to keep loved ones with dementia at home as long as possible. Many of these caregivers also have full-time jobs. Wandering is one of the least manageable and most emotionally draining behaviours they must address, and studies have shown it is a factor that leads to placement in long-term care.

The provincial government announced plans in 2011 to create a Silver Alert program for missing elders, similar to the Amber Alert for missing children. But when bureaucrats, elder groups and police came together for a roundtable discussion, they ended up scrapping that plan and proposing a different one.

The most pressing concern, they all agreed, wasn’t finding those who went missing — police forces and search-and-rescue groups are already pretty good at that. Instead, a public education strategy was needed.

The problem was and remains: a lot of people are getting lost, but families don't seem to understand the risk until something terrible happens.

Working Daughter

Debbie Berry wished she could stay home and keep a closer eye on her father, but someone had to pay the bills. So she rose before dawn most mornings to catch the bus to the Canadian Tire at Eglinton Town Centre, where she works up to six days a week stocking shelves and pricing merchandise.

The day her father didn’t answer the phone, Debbie tried not to worry. Maybe he didn’t feel like talking. Maybe he had the TV turned up too loud. Maybe he was taking a nap.

But she couldn’t shake the uneasy feeling, so she left work early and hurried to the bus stop, calling one of her sons on the way.

“Do you know where Gramps is?” she asked. Her son did not.

On the ride home, she gazed out the window and tried to suppress the what-ifs. Debbie had just turned 58. For much of her life she had looked younger than her age, but lately exhaustion and stress had deepened the creases in her forehead and around her big brown eyes.

Life’s too short to keep a dark cloud around you.

Life had not always been kind to Debbie. Her parents had divorced when she was a girl. She quit school at 17, after becoming pregnant with her first child. And yet through every hurdle she carried on with stubborn optimism. It could be worse, she often repeated to herself. Life’s too short to keep a dark cloud around you.

Such mantras kept Debbie going in recent years as her marriage fell apart and she said goodbye to her home in Wasaga Beach with the big kitchen and the grassy backyard, where she had lived happily for nearly a decade. She moved back to Toronto in 2010 and bought a condo, but was forced to sell it when her shifts slowed and she couldn’t keep up with the mortgage payments. Then her mother died and, soon after, her father’s health began to decline, so Debbie moved into her mom’s old place with her sons and brought her dad to live with them.

Now there were four adults in a two-bedroom townhouse, not an ideal arrangement, but they couldn’t afford the extra $500 a month for a three-bedroom. Debbie was the only one with a steady job. Her 40-year-old son didn’t help out as much as she hoped he would. Her 39-year-old son has schizophrenia, which makes it difficult for him to work. Debbie had spent a decade navigating the mental health system with him and now, when he was finally doing OK, here was another family member with a debilitating brain disorder.

The bus shuddered to a halt and Debbie hopped out and darted across the muddy path that led to her door.

“Dad?” Her words echoed through the narrow, two-level townhouse.

Through the living room and up the stairs, Debbie checked his bedroom. Empty. Back down the stairs and into the basement. Not there.

She and her sons got on their bikes and pedalled up and down Victoria Park Ave., searching the neighbourhood coffee shops, grocery stores and fast food restaurants. It grew darker and colder. The temperature was set to drop to a few degrees above zero that night.

Just before 8 p.m., Debbie called 911.


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