Reframing the story of Alzheimer’s disease

When we talk about Alzheimer’s disease, what kind of story are we telling?

A horror story, at least here in contemporary North America, says Marlene Goldman.

“The media’s take on Alzheimer’s is very Gothic and apocaplytic,” she says, a story of the slow loss of mind and self. “The typical presentation is: we have a huge baby boomer population and they’ll be turning 65. In the media’s view, they’ll be zombies.  And we’ll have to pay for them.”

The English professor at the University of Toronto Scarborough doesn’t discount the suffering associated with Alzheimer’s disease, but she wants us to realize that the way we talk about it matters. She is working with a group of scholars in humanities, medicine and social science through U of T’s Jackman Humanities Institute and recently co-organized an international conference called Aging, Old Age, Memory and Aesthetics.

As a literary critic — someone who studies and interprets literature — Goldman is interested in the intersections between medicine and storytelling. “I think we make a mistake when we assume that a disease is like a table, an unchanging thing that’s here in front of us. Our understanding of diseases has evolved throughout history.”

It’s hard to imagine a different version of the story we tell ourselves about Alzheimer’s disease because we’re so embedded in our own culture. But, says Goldman, “A literary analysis opens up the possibility of seeing things from a different angle.”

We’re accustomed to thinking of fiction as “not true.” But fiction, Goldman says, can “show us an illness from the mind of a sufferer.” In a medical setting, a clinician might take a case history, but it’s always filtered through that clinician’s perspective. Fiction, on the other hand, lets us see what Alzheimer’s might be like from the inside.

In other words, Goldman wants us to know that we have a choice about how we tell the story: “We can see Alzheimer’s as a Gothic, tragic story,” as the mainstream media presents it, or we can look for alternative perspectives.

She gives the example of Alice Munro’s short story “The Bear Came Over the Mountain,” which Canadian director Sarah Polley made into the film Away From Her. In it, Grant, a self-confessed philanderer, witnesses his wife Fiona’s rapid decline. Knowing her condition will worsen, Fiona checks herself into an institution. When Grant visits, he is shocked to discover that Fiona has formed a passionate attachment to another resident. Grant wonders if Fiona is playing an elaborate trick on him — he doesn’t know whether Fiona’s feelings spring from her illness or are a purposeful commentary on his past infidelities. “As in other Alzheimer’s narratives such as Michael Redhill’s Goodness and Mordecai Richler’s Barney’s Version,” says Goldman, “the presence of an ironic trickster figure undercuts the dominant media and biomedical discourses of Alzheimer’s.”

“I don’t want to diminish or make light of the real suffering associated with memory loss. But I do think it’s helpful to have as much information as possible when looking at life-changing illnesses.”

“We’re all aging,” says Goldman. “That’s an inevitability. I don’t like the idea that we have to live in fear of any sign of aging, that the story has to be solely one of decline.”