Sarah Willingham talks about strategies for communicating with your loved one with aphasia.
Sarah: It's important to know that you want to talk to them in a natural way. And so that's one thing that people sometimes get confused about or when the diagnosis is brand new, or it's really like post-stroke, and you might notice your loved one or the person with aphasia might be showing more signs of confusion. You might want to start talking to them differently, hoping that they understand.
Genevieve: Good morning, Sarah. Thank you for joining me this morning.
Sarah: It's great to be here.
Genevieve: So, just to let you all know, I had the pleasure of meeting Sarah when I was a clinical supervisor at the University of Texas Health Communication Sciences and Disorders in San Antonio this summer. And I was there for the first session of the aphasia program, which translates to the first time these clinicians are one year into their master's program, and it's the first time they have a client in front of them. And I tell you, Sarah, I adored the program. It was so much fun to work with you.
What were your takeaways from the program?
Sarah: Yeah. All of us were super nervous but also extremely excited. Over the course of the program, we had been there for one year. And it was all textbook knowledge plus some simulations online. But when the program started, that was us.
Sarah: Meeting people face to face. And as you mentioned, we received communication partner training, and we had all the textbook knowledge on how to help. So we're excited and ready to go. But some of the main takeaways after working for two weeks with people with aphasia and the session we participated in were mostly people who had expressive aphasia.
So that was also interesting because there are three sessions, and each session had a different focus on aphasia. So the first session was about expressive aphasia. The second aphasia was PPA, the primary progressive aphasia. And then the last one was receptive aphasia and that kind of led to my biggest takeaway from the camp. Even though we learned how aphasias are different and how, even right now, it can be divided into three subcategories, within each subcategory, aphasia presents itself so differently. And it's something to know that, like, oh yes, it's different for everybody. But when you actually get to interact with each individual and work with them and talk to them, you really understand what it really is.
Like, even though you might have an expressive form of aphasia, that almost barely means anything because there are so many different ways it presents itself. Like you could be a little bit more fluent, or you could say one, two, or three words, and it'll also have different, like, cognitive or ways it presents itself when you're like writing or thinking through puzzles or just like everyday tasks. It'll just show up differently for everybody.
Genevieve: I think that's a huge takeaway because book learning, even when I was in grad school forever ago, they make it seem so black and white. But it is not. I really want the audience that's listening to this podcast to understand you might be diagnosed with a term, something like Broca's aphasia. Still, it doesn't necessarily mean your symptoms stay. You're not locked into that. That's why I'm not into labels. When I'm evaluating somebody, I really try to break down where they are breaking down and how it breaks down and how they respond to different techniques. Because somebody with Broca's aphasia one month after a stroke can change and shift. There are symptoms. Some symptoms get better. There is a thing of spontaneous recovery, and they say the research is showing three months, four months, up to six months, you can have some spontaneous recovery, and that's without treatment. Then our job is to advance that treatment, advance that recovery with our skilled techniques. So anyway, I'm trying to educate as much as I can about speech pathology because there is so much to it. And language is complex.
Sarah: Yes. And that's one thing, too, that we've been really seeing. During my session or my experience with the aphasia program, my client was gone for a couple of days. I really got to shadow or observe other people, and that was a wonderful opportunity just to meet different families and different people and see the different things that they're doing in therapy. All of them were really different, but it was working for them. And that was wonderful to see. Everyone made so much progress.
It was truly beautiful. And just to know that therapy can do that. And that people can like move. Like you make a goal, you work on your goal, and then you can reach it. It's fantastic.
Genevieve: It is. And I think that was the beauty of doing an intensive program like that is when you can really see the movement goals, and I think it's for you guys as brand new clinicians to know that it happened versus seeing somebody once or twice, even three times a week. It's slower practice. And sometimes, you have to redo some of the work you did in the previous session to keep working towards that generalization. So I think there is something to be said about, well, there's a lot of good research behind intensive programs, but that's another topic for another day.
Genevieve: One of the days during your program, you had the opportunity to do communication partner training. And that is a term that is very popular right now. But there are lots of components to it. What I invited Sarah to come on today to talk about is what part of communication partner training stood out to her and what the takeaways are for you, the audience, to understand more.
Just so you all know, you're going to hear from other clinicians and their takeaways about communication partner training. And then part of LIFE Aphasia Academy, I'm going to be offering a communication partner training course later on in the year. So there's my segue. That's where we're going. All right, Sarah.
Tell us your impressions of communication partner training.
Sarah: Yes. So, like you said, one of the days, a couple of the other clinicians and I were able to get together with family, friends, and caregivers. Just people in the support community who really wanted to be there and learn about different communication partner training learn different ways to communicate with their loved one and their person.
So one of the takeaways that I thought was very important for everyone to learn is either if you are talking to a person with aphasia and it's a casual acquaintance, or it's your loved one. You spend every day with them, and it's important to know that you want to talk to them in a natural way. And so that's one thing that people sometimes get confused about or when the diagnosis is brand new, or it's really like post-stroke, and you might notice your loved one or the person with aphasia might be showing more signs of confusion. You might want to start talking to them differently, hoping that they understand.
Sarah: And in a way, it could be like, you might want to be talking to them like a person who doesn't speak your language in a sense. So you would start talking. REALLY SLOWLY, and you might also talk REALLY LOUDLY even though they are in front of you. And if you notice why I did it, too, I'm enunciating my words.
I WAS ENUNCIATING MY WORDS MORE. Nobody really likes to be talked to like that. Not at all. Like they're still right there. And if they could express it, they would probably tell you like, and I'm right here. You don't need to be yelling at me, or enunciating your word does not help me. Like, that's not what the problem is.
Sarah: So basically, when you're talking to a person with aphasia, you want to remember that you can still hold a normal conversation with them. Just talk naturally. Just like right now with Genevieve and me, we're talking at a natural rate, natural speech. One thing you can do is just talk A LITTLE BIT MORE SLOWLY. So if you tend to be a fast talker, remember to pace it out a little bit more. It doesn't have to be exaggerated, and you don't want it to be exaggerated as just a natural, slower tendency. Kind of like what I'm doing right now.
The other thing you might want to remember. That when you are talking to your person with aphasia, you do want to VERIFY that they're able to receive everything. You verify that they receive all the information they need. So you could have a piece of paper or a whiteboard with a marker and a pencil to, as you're talking, you could be writing down some keywords so that they really have multiple ways to understand what you're saying to get that message across.
And I mean, of course, your person, because aphasia is so different, maybe the person you're talking to doesn't need it. But if you're talking to a person for the first time, you pull out all the tools you have.
And you'll take away the tools if you see them not necessary.
Genevieve: I think that's a really important point. So let's review.
A slight slowing in your speech. So let's say I can give an example, and I often do this. I'm doing it right now. So I'm not a superfast talker normally, but I do get super animated. Sorry. I get animated about subjects that are important to me. But if you had aphasia, I would still keep my animation, and I like the term you used DIAL DOWN JUST A SMIDGE. Just to slow your speech a little bit. Because the person with aphasia needs more processing time. Think of it like a computer. They just need that little bit of time. YOU DON'T TURN INTO A ROBOT. You don't overdo it because then they're going to lose some of that context. Some of the contextual cues.
Communication is body language and eye contact, and the tone of your voice. But if you just slow down a smidge, it can make all the difference. The other takeaway I heard from you, Sarah, is writing down keywords. Don't assume that they can't read. Assume they can read. And even if not, maybe they only get part of it. If you're the spouse of someone and you need to talk about your day… you're going to go to the grocery, then the doctor, then the mailbox, or the post office. Write those things down. SHOW THEM. Talk about it. Take the time to make eye contact. Don't be in a rush.
Sarah: Exactly. And one way I like to think about that, instead of just like talking, is how you would speak with your, I guess, your child or, I guess, your best friend or neighbor.
Slow down to allow them to process a little bit more. Use keywords. Still, be animated and use your prosody in your speech because that's part of communication. Part of the fun in it. And that's one thing I did forget to mention, like, if you're a funny person still throwing those jokes, don't change your whole personality. They know you, they love you for who you are, and they'll just appreciate you for trying and giving them a little bit more time to process and see what you're doing. In fact, the way I like to think about doing all these things, talking a little bit slower, doing keywords, still using your tone of voice and your natural way, and your humor is like coloring a picture with all the colors of the rainbow.
So instead of just giving them one modality, like your speech, and you're constantly coloring with, I guess, a brown crayon, you can't get the whole picture. If you're trying to draw like a tree and the house next to it, you want to add yellow and green so that they get the full picture. The way they would get the full picture of your message is by incorporating all these different things. The keywords, maybe you could even use visuals if you have it handy like that. Objects. Slowing your rate just a tad bit, nothing crazy, because you still want to be respectful. You don't want to make them feel less than others because they're not in that respect.
Genevieve: Great words. Before Sarah and I started recording this morning, we were talking about what are we going to call this episode. And what did we come up with, Sarah?
Sarah: We talked about GIVING GRACE WITH SUPPORTIVE COMMUNICATION. So, basically, by that, we mean you want to be patient, and you want to be kind and respectful to the person you're talking to.
And also you expect that in return from the other person. It is difficult to communicate sometimes. And that's why both parties need to fully support each other and give each other the patience and kindness to assume that everyone's trying the best they can. And they're using all that they can to get their messages across. So just give each other that grace and like, look at it. I know it might be easy to get frustrated sometimes, but look at it like I'm trying my best. They're trying their best. We're using everything we've got in our toolboxes to talk to each other, and just know that. And it's okay. One thing we learned that is helpful is it's really good to vocalize, like, hey, I know that these tips are here, but that doesn't work for me. Say that, or communicate that. Oh, that's specific, too. I don't personally like that. Don't do that to me. So, let that message be sent, and also listen to your conversation partner in that case. But it's okay to say when you notice frustration growing.
Tell the person with aphasia, your loved one: ‘I know that you know what you want to say, and we're feeling frustrated right now.’ Just acknowledge the feeling and say, like, ‘I know you're frustrated. I know that you know what you want to say.’ So just give each other that grace.
Genevieve: I think that's great. Any other takeaways that you want to share?
Sarah: Just don't shy away from talking. If an idea pops into your head. You know, ‘oh, I really want to tell so-and-so this story that happened to me’ or something that you heard on the news. Don't limit yourself. Like everybody, we're all humans. We're social creatures. Everyone wants that communication. So don't shy away from talking or holding back a story. Give it a try. Like I said, give each other grace and reach across the aisle. Make that connection. Every attempt is worth it.
Genevieve: Sarah, thank you for this. I just love hearing your perspective. So much good work going on at UT Health San Antonio. I'm very impressed with the program.
I love how you guys are prepared and you're thinking and really integrating information. And I think it's wonderful. I think it's great sharing the message. I love this opportunity for you to share what you're learning so our audience can hear what's it like to be a grad student. What are you learning? And how can we help our families communicate better with their person with aphasia?
Thank you, Sarah, for joining us today and sharing your insights with us.
Sarah: Thank you for having me, Genevieve. It was honestly a great experience working in the aphasia program clinic. And I'm loving this field so far. I look forward to what I have to do. I know in the fall semester, I'll be working inside the elementary schools. But in the spring semester, I'm hoping to go back to an outpatient clinic or potentially acute care. I don't know, there are so many things and opportunities and places where we could help people out, and we have the knowledge to be able to help train other people, too.
And it's an exciting journey. I can't wait to see how each of them goes. So, thank you, Genevieve, and thank you, everyone.
Genevieve: Thank you, Sarah. Have a fabulous day.
Sarah: Yes, you too.