Behaviors

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The Wanderers

The Wanderers

by AMY DEMPSEY

Heartbreaking story. Brilliant reporting. Seven-page in-depth story.

Six in 10 people with Alzheimer’s and other forms of dementia become lost at least once. Why do they wander, and how do we stop them?

James Berry had a destination in mind when he left his house that cold April morning, but no one knows what it was or if he ever got there. Not even him.

Cars whizzed past him on Victoria Park Ave. as he shuffled down the sidewalk in a pair of old running shoes. He wore a thick leather coat and a wool toque pulled over his silver curls. Soft brown eyes and a smooth complexion made him appear a decade younger than his 78 years, but he walked with the stiff gait of a man with old bones.

Berry passed the Tim Hortons where he sometimes sat alone with a doughnut when he had nothing else to do. He passed the strip mall pharmacy where he got the pills his family hoped would slow the disease attacking his brain. He passed row after row of brick townhouses and apartment buildings which lined the four-lane street in the Scarborough neighbourhood where he lived with his daughter and two adult grandsons.

It was an unremarkable walk until, without warning, the neighbourhood faded and morphed. Berry took a step, a gear shifted in his brain, and though he was right where he’d been a moment before he no longer recognized his surroundings.

Like somebody dropped me in the middle of the city somewhere.

“Like somebody dropped me in the middle of the city somewhere,” Berry would say later, though he’d never remember the specifics of the disappearance, only the panic he felt trying to summon a memory that would lead him back.

Debbie Berry had warned her father not to go out alone while she was at work. Despite his Alzheimer’s disease diagnosis, he had been able to live a fairly independent life under her care, but lately Debbie had noticed a faraway look in her father’s eyes that worried her.

When she called home from work that afternoon to check on him, the phone rang and rang inside the empty townhouse.

Out on the street, James Berry kept walking.

Sad, Lonely Trek

They are wanderers. They have been found on highways, in the woods, in parks, in malls, on farms, in corn fields, in gullies, near train tracks, in warehouses and in swamps. They have been found sitting silently in hospital waiting rooms. They have been found trying to enter homes they once lived in. They have been found dishevelled, dehydrated, starving, terrified, wearing slippers in the snow and parkas in the summer, with hypothermia and heat stroke, cuts and broken bones. Some have been found dead — here in Toronto on Highway 400, in a wooded area behind a subdivision in Vaughan and on a residential sidewalk in the middle of winter.

Wandering is an unsuitably whimsical word for what has been described as the most high-risk behaviour associated with dementia. Clinicians and researchers have expressed a desire to abandon the term and call it what it is: getting lost. Though the majority of wanderers are found alive, the danger they face is serious.

“This problem can and does result in catastrophic consequences,” gerontologist Nina Silverstein and colleagues wrote in the 2006 book Dementia and Wandering Behavior. The authors stressed an urgent need for greater recognition of wandering as an emergency.

They are lost literally and lost in history, seeking out people and places that may no longer exist.

Once lost, people with dementia often begin to wander toward a past they think is present, returning in mind to a period in their lives more familiar than the foggy now. They are lost literally and lost in history, seeking out people and places that may no longer exist. Professional searchers often have to figure out where they are in time before they can find them in space.

What threw James Berry off track the day he left home? What was going through his mind as he moved aimlessly through the city?

Though recent years are rapidly fading from his memory, scenes from his early life remain vivid. He remembers growing up on Baldwin St. in Kensington Market, long before it was hip to live there. He remembers DJing at the infamous Paramount Tavern on Spadina Ave. in the 1970s, spinning hits from Kool & the Gang and Bootsy Collins.

He remembers moving to the neighbourhood now known as Leslieville with his first wife and their three children. He remembers the work he did there, sweeping up after the movies at the old La Plaza Theatre on Queen St. E., now the Opera House. “Cleaning the show,” he called it, and his kids loved the gig because they got free popcorn. He remembers working as a computer operator at the University of Toronto back when computers were as big as rooms.

With his eight-decade history in Toronto, anyone searching for James Berry would have a lot of places to look.


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