A Lifeline for People with Aphasia

When Aura Kagan got a job as a speech-language pathologist at a small community agency focused on helping people with aphasia, she knew immediately that there was something very different and very good going on there. “It was just groups of people sitting around tables, but I could see something incredible happening – a lot of communication in a very lively atmosphere,” she says. “I was totally captivated by it.”

Conversation is an ordinary thing, but what Kagan (PhD 1999) was observing was made extraordinary because of how aphasia affects people. Usually the result of a stroke or brain injury, the condition hinders a person’s ability to communicate thoughts and emotions, and sometimes their ability to understand what others are saying. During all her time working in clinics, hospitals and home care providing traditional therapies for aphasia, she’d never seen the level of interaction that was taking place at the agency.

“You can’t grasp the impact of aphasia until you understand its dramatic negative impact on conversation,” says Kagan, now the executive director of the Aphasia Institute in Toronto, which had its beginning in the community agency. When she first started working there more than 20 years ago, the agency was simply pairing people with aphasia with volunteers, who used various informal strategies to communicate and engage with their partners.

Seeing the beneficial effects of this interaction made Kagan want to create a formal methodology that could be shared in the aphasia community. This led her to U of T, where her doctoral research showed that you could improve the ability of an individual with aphasia to participate in conversation – and therefore in relationships and in life – if you gave their conversation partner specific skills.

“It was a radical idea at the time,” says Kagan. With colleagues at the institute, she used her research findings to develop a set of techniques known as SCA, or Supported Conversation for Adults with Aphasia, that includes gestures, body language, hand drawings and sophisticated visual resources. “There’s a real art to giving it the feel of a natural, adult conversation,” she says. “When you’re good at it, the technique is invisible.”

There are now aphasia programs across Canada and the world running conversation groups based on this tool, and it’s included in the current best-practice literature for stroke. 

These days, Kagan spends a good part of her time seeking funding to increase the reach of this approach. An estimated 100,000 people in Canada suffer from aphasia, and the number is expected to increase as the population ages. “The good news is that we’ve got solutions to a very complex problem,” she says. “The challenge is getting them out to more people.” Every year the institute brings in speech-language pathology and medical students from U of T to learn about SCA.

“People with aphasia describe it as a lifeline,” says Kagan. “Because when you can’t talk to people, they make assumptions about your competence, and every relationship is at huge risk. It’s all about being able to participate in life.”

Every morning on the way to her office, Kagan walks through one of the institute’s program rooms, and it’s usually full of people with aphasia and trained volunteers. “It’s a very inspiring, motivating thing to see in action. There are books clubs and card groups. There are conversation tables about everything from politics and Trump to the Blue Jays. It’s just a hopeful place.”