The Current - Aura Kagan on her work helping people with aphasia

Episode Date: January 9, 2025

Dr. Aura Kagan has been named to the Order of Canada for her work transforming the lives of people with aphasia, a language disorder that affects a person’s ability to communicate.

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Her work inspired by the belief that life is a conversation continues to influence aphasia treatment worldwide. Dr. Aura Kagan, good morning. Good morning. Congratulations. Thank you. Life is a Conversation continues to influence aphasia treatment worldwide. Dr. Aura Kagan, good morning. Good morning. Congratulations. Thank you. Thanks for having me. What do you remember about the phone call that you got saying

you are now a member of the Order of Canada? Oh, it was quite a shock. You don't know that you've been nominated. And if I remember correctly, when I got a call from the Governor General's office, I was literally speechless. And if I do remember correctly, she said, after a while, are you still there? But it is such an honor to receive this acknowledgement. And especially I am grateful for this opportunity to profile aphasia and the work of the Aphasia

Institute. Can you explain for people who don't know what aphasia is? Yeah, most people have never heard of aphasia unless they have it or know somebody. So aphasia, the traditional definition is that it results most commonly from a stroke, so there's an injury to the brain, and it affects language. So it's not just talking, language, it's really four modalities. It's speaking, understanding, and reading, and writing. So to get the impact, if you think about landing in a country where you don't speak the language,

you would still be you. You would still be Matt. But you wouldn't understand what people are saying. Your computer wouldn't help you. You might feel pretty stupid. You might feel very isolated. The thing is that you're waking up in your own country. So that's the traditional definition that it's a language problem caused by brain injury. But the work that I've been

involved in goes to a deeper level, which is the fact that aphasia masks the inherent which is the fact that aphasia masks the inherent competence of people. So people with aphasia know much more than they can say. And one of the biggest fears that's been articulated by people with aphasia is that fear of being thought of as stupid. And so what happens when you can't communicate, it impacts the ability to interact with people and have conversations the way that we're doing now. And it puts every relationship at risk

and every life role at risk. Tell me a bit more about that, because again, in that citation, it talks about how your work restores dignity. When somebody is living with aphasia, how is that dignity stripped from them? Well, if you think about the way that society reacts to people with disability in general,

we've got a way to go and a lot to learn. But in particular, when somebody looks like they're not competent, they're often treated in that way. In healthcare, it happens all over the place. You show yourself through your language and through your conversations. So that feeling of loss of dignity is one piece, but the social isolation that results is another key feature. And I think the pandemic maybe sensitized people to what social isolation is like. I don't know if you can imagine that lockdown time without being able to talk to people on the phone or Zoom.

Well, that's life for people with aphasia. And people in long-term care, for example, such awful situations where all of a sudden family's not allowed in, people don't understand what's happened, people coming in dressed like Darth Vader, and there's no way for the person with aphasia to understand what it is. So what happened at the Aphasia Institute is we created some resources with pictures, pictographs, keywords explaining what has happened, why people are wearing masks, why people aren't coming in.

That support that's provided is the antidote, why people are wearing masks, why people aren't coming in. That support that's provided is the antidote, at least a partial antidote to addressing that social isolation and that loss of dignity that you referred to. You're being celebrated for the work that you have done in helping people with aphasia. I wanna play a little example of that work.

This is from a video that's used in training, and you're speaking with a patient. Here, you're looking really upset. You wanted to talk to me about something. Something with your kids. Something wrong, your daughter, the one I know in Washington? What's up, can you give me a clue?

daughter, the one I know in Washington? Yes. What's up? Can you give me a clue? Can't talk to me. I can see that it's so frustrating. I know you know. Yes. Yes.

What's going on there? What is going on is that I'm having a conversation with someone who knows exactly what she wants to say. She's dealing with a horribly upsetting situation, but she can't get it out. And I'm doing what we ask people to do if they're only going to do one thing to support people with aphasia. Which is? To acknowledge that they know what they want to say.

That's why you say, I know you know. Yeah. It's a key phrase and it underlies our training. What does that do? When you, I mean, you would acknowledge that this is frustrating, but you say, I know you know. When you say that to the person who can't, they're struggling to get that word out,

what does that do for them? You're telling them that you understand that there is still a person in there with opinions and feelings. You're acknowledging their humanity at a most basic level. What you're doing is partnering with them and acknowledging that sometimes you're not able to get it. It's not that they aren't competent. You are not able to understand. And so at the very least, acknowledging that you know what the person, you know that they know what they want to

say is getting to that concept of masked competence, which is one of the ways that we've defined aphasia at the Aphasia Institute. A disorder of masked competence and the techniques we've developed. Really what the award is about is the method called supported conversation, which has got two parts. The one is acknowledging competence. That's where you're hearing, I know you know. And then there are methods for actually revealing that competence, which you're not hearing in that particular clip.

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Can you show me? Show me where the problem is. Give me a clue. Your head? Yes. Okay, you have a problem with your head? Yes. Okay, you have a problem with your head? Yes. We'll have some pictures here that will be helpful, Ted.

Do you have a pain in your head? Um. Just show me yes or no. Um. Is it a pain? No? No. Okay, let's try something else. Are there any pictures here that describe how you feel? Anything wrong with your ears? No. No. No. Are you feeling dizzy? No. Okay, let's look a little further. Is there anything here? How about this one? Yes.

This? Yes. This shows a problem with sleeping. Okay, let me just verify that, Ted. Sleeping. Sleeping. Is hard? Yes. That's given us somewhere to start. Now let's see if we can find out why that's happening. Oh. Oh boy. Nope.

Don't worry. Don't worry. We'll find out what the problem is. What's the technique, aside from patience and empathy and the work that you're doing to connect with Ted, what's the practical technique that we're hearing there? Well, you're hearing three things happening that because you are listening to a skilled conversation partner, they sound like nothing. And then you're hearing that they're not listening to you.

And then you're hearing that they're not listening to you. And then you're hearing that they're not listening to you. And then you're hearing that they're not listening to you. And then you're hearing that they're not listening to you. And then you're hearing that they're not listening to you. And then you're hearing that they're not listening to you. And then you're hearing that they're not listening to you. And then you're hearing that they're not listening to you.

And then you're hearing that they're not listening to you. And then you're hearing that they're not listening to you. And then you're hearing that they're not listening to you. And then you're hearing that they're not listening to you. And then you're hearing that they're not listening to you. And then you're hearing that they're not listening to you. And then you're hearing that they're not listening to you. And then you're hearing that they're not listening to you. And then you're hearing that they're not listening to you. And then you're hearing that they're not listening to you. And then you're hearing that they're not listening to you. And then you're hearing that they're are listening to a skilled conversation partner, they sound

like nothing. But firstly, there is an effort to make sure that the message is getting in, that he understands what's happening. And she's doing that by altering the way that she speaks without being patronizing. And then she's also helping by providing resources, some key words, written key words and sophisticated pictures, pictographs. And then the second part is she's helping him get his message out, say what he knows. This is, again, somebody who knows exactly what is wrong that he wants to get out.

But having the picture or the word there enables him to point to it and indicate what is wrong, which in this case was sleeping. So when someone points to their head and the doctor doesn't know, it could mean a million different things. But she was able to give him a way to express himself. And then you heard that critical third piece, let me make sure I understand, verification we call it, because people with aphasia get incredibly frustrated when we think we know what they're saying and five minutes later

you're just down the wrong track and there's nothing that they can do about it. So those are the three main elements. Those are really practical things that people could do, not just in a clinical setting, but at home. Absolutely. So training conversation partners is the outcome of this development of the method supported conversation. And although it sounds very easy and looks like nothing,

it does require some training. The part that we can all do, treating people respectfully and not in a patronizing way, that is something we can all do. Because it gives them agency and it goes back to that dignity piece as well. You're not saying to them what they're saying, you're allowing them to say what they're trying to say.

Right. So if you think of the analogy, a physical analogy of someone with a disability, they might need support, they might need the wheelchair, but is it going where they wanna go? That's in the end is the problem. It's having support is okay, as long as the destination is where the person wants to go

and you're not wheeling them to somewhere they don't want to go. So providing that support for conversation is allowing people to access human conversation, which is really what you and I are doing right now. Can I ask you about that? I mean, we're almost out of time, but there's that idea, and this again comes up in the citation, the belief that life is a conversation. What does that mean to you?

It means a lot, because conversation is really at the heart of what it is to be human. If you think about your own conversations in the last few days, maybe with kids, parents, your work here, everything is around human conversation. And giving that gift back to people and allowing them to actually forget about their aphasia is the ultimate sign of success. So if someone can have a conversation about what's going on in Canada now

and actually focus on that and forget about their aphasia, you're a great conversation partner. You're being celebrated for your life's work in this. What is the thing that you have learned that sticks out to you in that work? What's something that a lesson that you think is one of the most valuable things that you've gathered over the course of this work? I think it would be our obligation as human beings to be there for each other. So it's not just the role of the person with aphasia

to work as hard as they can to improve their language. As a society, we need to provide what we call communication ramps, the same way as physical ramps are provided today, and avoid a situation where people are living with aphasia or sent home with the equivalent, if you imagine a physical disability, of being sent home without a walker or a wheelchair

if you can't walk. So the obligation as a good society is to provide access and reduce barriers to participating in what you and I take absolutely for granted. You've done exceptional work in that regard. Thank you. It's a real pleasure to talk to you. Congratulations again.

Thank you so much. Dr. Orak Hagan is a speech pathologist, researcher, former executive director of the Aphasia Institute and a new member of the Order of Canada. We will continue our conversations with people who have just been appointed to the Order of Canada coming up in the days ahead. For more CBC podcasts, go to cbc.ca slash podcasts.