Why Alzheimer’s research hits close to home for David Suzuki

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David Suzuki slips on shoe inserts that jab his feet, and glasses that block his peripheral vision and colour everything yellow. He wears gloves that make him clumsy, and headphones that fuddle everything he hears.

In this compelling scene airing Thursday night on CBC's The Nature of Things, the world-renowned geneticist and environmentalist, whose mother died of Alzheimer's at age 74, is taking part in an experiment that simulates how confusing, lonely and terrifying this degenerative brain disease can be. At one point, Suzuki jumps with fright when a police siren wails because he finds it impossible to distinguish relevant and irrelevant stimuli. He also has difficulty setting a table and folding some towels.

In an interview with The Globe and Mail, Suzuki says it was a humbling and illuminating experience making the one-hour documentary, Untangling Alzheimer's. "I had no real idea what my mother must have been going through, how everyday household chores could suddenly become herculean challenges." And he warns that a "tsunami" of new dementia cases is coming (currently 747,000 Canadians are afflicted, with that number expected to rise to 1.4 million by 2031). "We don't know what causes it, and there is no cure. We need to ramp up spending on brain research because right now we're frightfully ill-equipped to deal with it."

How did you feel during the Alzheimer's simulation?

I was shocked, and when the noise [of the siren] suddenly came, it was like an explosion that was physically painful. I always thought with my mother that if she didn't get what I was trying to say, I'd just speak louder or more slowly. But I realize now that her sensory input was changed so she was seeing the world in a very different way. I made no compensation for that. We just assume the brain is failing, but we have to be more sensitive to the needs and capabilities of people with Alzheimer's.

If your mother was still alive today what would you do differently?

I would have spent more time walking with her, being with her, talking to her. She was great with our children because she had all the patience in the world. She was like a child herself, and played with them. I moved in with my father when he was dying to care for him the last month of his life. That was one of the happiest times I spent with my dad. He was my big hero and we just talked and talked. He wasn't afraid of death. He wasn't in pain, but he knew he was dying of cancer.

How different was your mom pre- and post-Alzheimer's?

That was the thing, I felt she didn't have Alzheimer's because I associated dementia with severe personality change. She was the same as always except she just didn't have the memory capacity. She also lost a lot of her inhibitions. Before, she was a very uptight Japanese woman and she became more relaxed. I used to tell her dirty jokies. Earlier, she would have said, 'David, don't say such things.' But later she laughed and we had a great time.

How did your father cope as your mother's caregiver?

My father was a typical Japanese male. He was the head of the house. He was the guy everybody loved. My mother was always the backup, making sure food was there, sewing, cooking and shopping. When she lost interest in all those things, I told my father I could hire someone. He said no, she gave her life for me, and it's my turn. I've always said my mother in her sickness gave me a father I didn't know I had. Some nights I'd drop in and find him sitting on the couch weeping in frustration. But he was right with her up to the time she died of a heart attack.

Your mom went missing the day your daughter was born. How did you find her?

Mom and dad had come to the hospital and my dad turned his back for two minutes, and she was gone. We scoured the city and finally police told us, go home and sit by the phone. At 2 p.m. a call came saying an Asian woman had been spotted trying to get into a blue Volkswagen van. My dad had one similar. When we went to pick her up at the police station, dad was crying and hugged her. She said, 'What are you crying for? Let's go home.' Her stockings had been worn right through. She must have walked for miles. I can't imagine the helplessness and terror for her.

Your mother and all her siblings had dementia, which raises your chances of getting it. Are you scared?

I don't really think about it. I figure at 77, I'm already in that zone and if it's not Alzheimer's that gets me, then something else is going to. If I get Alzheimer's, frankly, I'd just as soon be put down because when my mind is gone, I'm gone. I'm just a body – a physical thing.

Untangling Alzheimer's airs Thursday on The Nature of Things, 8 p.m. on CBC-TV.

This interview has been condensed and edited.