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E15: Education, Advocacy & Empowerment in Aphasia after Stroke

Bringing education and awareness to other people in the real world and it gives the caregiver a sense of empowerment.


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TRANSCRIPT

Abigail: Bringing education and bringing awareness to other people in the real world is so important. And it gives the caregiver a sense of empowerment.

CALLIE & ABIGAIL

Genevieve: Good evening, ladies. Thank you for joining me.

Abigail: Thank you very much.

Genevieve: This is Callie Maywald and Abigail Johnson. So, I asked these graduate students to come on today to continue our conversation about communication partner training.

Both of these students went through the hands-on portion of communication partner training with real-life spouses and family members during the intensive summer session this summer at the University of Texas Health San Antonio. So, why don't we jump in and have you guys tell us a little bit about what your experience was like and what your takeaways were from communication partner training?

Abigail: We started off by providing just basic education about what aphasia is. A lot of the caregivers and family members had never heard of aphasia prior to their loved one's diagnosis. And so we just talked about what aphasia is and the different comorbidities that occur with aphasia.

And then, we got right into the communication partner training aspect. And I think it was a really good way to start off by making sure that we were all on the same page. We all had just a basic understanding of what aphasia is.

APHASIA IS NOT A LOSS OF INTELLECT

Abigail: And we really emphasized that it's not a loss of intellect or intelligence. It's just a language disorder that happens secondary to a stroke.

Callie: Yeah. A cool thing we did with that as well as we played audio recordings of what communication and language might sound like for a person diagnosed with aphasia. And I think that brought in a lot of insight for the caregivers and the people in the community that came to the training so that they could understand this is what the person with aphasia is hearing. This is how they're hearing you, and this is why they're not potentially understanding what you're sometimes saying.

Genevieve: Yeah. Those recordings were very powerful. And I love that perspective. So let's go back for a second and talk about how in-depth did you go into characterizing aphasia?

Callie: We just provided basic facts about it. We didn't go too far in depth. We know as graduate students that there are a lot of different kinds of aphasia affecting different parts of language and parts of communication. And we kind of just provided a broad statement because each of the caregivers, spouses or children, or whomever they were, had varying levels, varying severities of aphasia. We just wanted a blanket statement out there just to bring attention.

Genevieve: Understood. So let's jump a little deeper into communication partner training. I thought that maybe one of you could talk about what it is like working with somebody who has aphasia to get them to advocate for themselves.

And then the second part is, how did you, as a student, help the caregiver or the spouse to understand what their role is in helping their person advocate for themselves? So whoever wants to go first…

PATIENT SELF-ADVOCACY IN APHASIA

Callie: I can start this time. So, I'll cover the patient and self-advocacy. I learned throughout this process that it's very important for people with aphasia to have a say in their communication abilities and how they wanna do it.

And a way that they were able to do this in conversation or in any way they provided a self-advocacy statement. Basically just saying that they have aphasia. This is what they like from the people that they're talking to, whether it's to speed up or slow down or anything like that. They say their preferences, their diagnosis, and how you can help them understand you or communicate better. Yeah, and I found this empowering for the patients. They seem to be more confident in their communicative abilities after we worked on a self-advocacy statement to present to an unfamiliar or familiar listener.

Genevieve: Do you recall Callie, your specific client that you worked with over the summer? Do you remember parts of his self-advocacy statement?

Callie: Yes. I remember my second one. Basically, my patient provided examples of his preferences. So he said he would like for his communication partner to be clear and precise, to slow down, to be loud, but not to shout at him. He was very adamant and animated about that one.

Genevieve: Because aphasia is not a hearing impairment.

Abigail: Right. Intent, right?

Callie: He said that it would make him angry whenever people treated him as less than others because he wasn't understanding. But it's not that he couldn't hear, and it's not that he didn't know if they would've taken steps to communicate his way, how he could understand, and he gets it.

It's just connecting all the dots for him. So, after we gave him that self-advocacy statement, we practiced it. His confidence levels were through the roof. He presented it to a lot of people and had it almost memorized. And we also wanted him to have it not just for communication partners or caregivers but if he was out ordering at a restaurant and someone was treating him as though he had an intellectual disability or anything like that. He could present parts of his statement just, even Please slow down, or, I have aphasia. Give me a second. Just so it would set the tone for the conversation instead of anybody assuming an intellectual disability.

Genevieve: Most of the time, our folks with aphasia just need a split second more to process. And the worst thing we can do, but with the intention of being helpful, is to interrupt them by giving them a cue or a hint.

Sometimes we just have to be quiet. And most people are not comfortable with silence.

It's awkward, and so they have to fill it.

Abigail: Yeah, that's something that I really learned throughout the summer program because I'm someone that loves to talk, and I really had to watch myself. And I was really mindful of that, you know, giving my patient time to speak, let him come to the word. I thought that was something that I really took away from aphasia, just from my experience, allowing them time and not trying to fill it in, like you said because I think it's natural for us to wanna do it.

We wanna help them. But it looks different for every patient, and they have their own needs and their own wants, and some people want you to fill in the silence, and other people want to get to the word on their own. And so, I think that's when self-advocacy really comes in, and allowing the patients to express themselves and really saying what they need, I think, is so important.

CUEING MAY NOT BE HELPFUL

Genevieve: I think one of the toughest lessons you guys probably had to go through this summer was not filling in and not queuing because, right, we get drilled on this cueing hierarchy, and you wanna give the least invasive cue. And sometimes, we feel like we're not doing our work. We're not doing our job if we're not involved.

But sometimes, we have to lead by example, especially in front of caregivers and tell people it's okay. Yes, it is awkward. Acknowledge it, work with it, but also see how the person is succeeding. When you do, give 'em that little extra time and space.

Callie: With my patient. We had a caregiver that wanted to cue also like she had her own way of cueing, and we stepped in and said we would love for you to cue him, but this is like a ladder that we're gonna climb. And we helped her to know what is most helpful to cue her person with aphasia.

Genevieve: Now, did you know her person with aphasia?

Callie: It was my patient and then his caregiver.

Genevieve: Okay, so you were able to give that personal touch, and I think that could be one issue that's a challenge with communication partner training because what's out there and available, it's general, it's generic, and I think it would be really hard for a caregiver to understand, well, which one of these strategies do I use? All right, Abigail.

CAREGIVER APHASIA ADVOCACY

Abigail: Yeah, so I'll talk about the caregiver aspect.

As we mentioned earlier, aphasia doesn't have a lot of awareness, and I think providing education to caregivers is so important. As Callie mentioned, every patient has their own needs and their own wants when it comes to communicating. And so, advocacy for caregivers looks a little bit different, but when you're in the real world, and you're at a restaurant, for instance, and you're the caregiver and your loved one is ordering, and they're having trouble getting that word out. As the caregiver, that's when you could step in, and you could tell the cashier that my family member has a communication disorder. Just give them time. And it doesn't have to be something really elaborate, but I think just bringing education and bringing awareness to other people in the real world is so important. And it gives the caregiver a sense of empowerment. It helps 'em to understand their loved one's diagnosis a little bit better.

And I also think that it encourages dialogue between the patient and the caregiver because the caregiver is saying, “What do you want?” “How can I help you?” What are things that you value and what's important for you? I think asking those questions and bringing that conversation and whatever modality is super important, and I think providing a lot of opportunities for that is super essential.

The main goal is just to include the person with aphasia in the environment because they wanna be involved and still want to communicate in whatever way is best for them. And so, just equipping the caregiver with a template or something short - a little statement that you can or they can say in a real-world setting is so valuable.

Yeah. And I think it is just great to do.

Callie: I agree. The caregiver, in that instance, is just able to set the tone to allow the person with aphasia to jump into a conversation at their best ability.

START HERE - Genevieve: So, I think we get caught up in roles, as you mentioned in the restaurant. And we think, ‘well, the waitress is really busy, the restaurant is busy,’ we gotta hurry up, give the order so she can move on, so we can get our food. And I think we, just as a caregiver or a spouse of somebody with aphasia, have to take a little control of that situation. And if it's tense, What could we do? What would you recommend to a caregiver if the situation is tense? Whether it's coming from the caregiver or the person with aphasia or the waitress that is trying to rush. How could we solve that?

Callie: I think that would be a good opportunity for the caregiver to step in and just say, “Can you give my friend (whomever it is) a moment? He's gonna order for himself. And ask for patience ahead of time if you can tell that it's gonna be a busy situation.

I would say try to set the tone immediately so that the person with aphasia has the opportunity to communicate for themselves.

Abigail: Yeah, I totally agree. I think being open with whoever the non-familiar communication partner is from the start really just sets the tone. It lets you know. It just kind of establishes you are on the same page, and I feel like people are willing to pause and take a moment if you just tell them.

I think just being open with the non-familiar communication partner from the start really just sets the tone, like Callie was saying, and just helps include the person with aphasia into the conversation and promotes more inclusivity. I think it's super important.

SETTING UP FOR SUCCESS

Genevieve: So, I'm harping on this restaurant idea cuz I think that we could set an example of what a caregiver can do to make it a positive experience for both the non-familiar communication partner as well as the person with aphasia. I think it can start as soon as putting your name in with the hostess. You know, just letting the hostess know, “when you seat us at the table, just let the wait staff know that we're gonna need a little extra time and we want both of us to be able to order,” for example.

So I think we could start by communicating early, and then that sets the situation up for success. Same thing if you were going to a party. Work it out with a hostess. And let them know Bob wants to be able to say something for so and so's birthday. I'd like to find a quiet time to set that up.

Just letting people know an expectation and how they can help specifically instead of getting in the situation and kind of ‘deer in the headlights' and not being able to cope right at that moment.

Abigail: Right. Definitely. One of my patients that I worked with this summer mentioned that whenever he's at a restaurant, other people try to order for him that are sitting at the table cuz they wanna help him. It's not from a place of them wanting to overpower him or control him. They wanna help him.

They just don't know what they can do to help him. And so I think that's really when the patient self-advocating for themselves is super important. And doesn't have to be anything super elaborate. It can just be I have aphasia, I have a communication disorder, and I need more time. It doesn't have to be this whole memorized script.

It can be really short. Because I think in those kinds of settings, you won't really just recite a script. It would just be little, short statements, and I think they're super powerful.

Callie: Yeah. That's kind of the beauty of them, too, is they're so specific to the patient's needs. They can say whatever they want, as short or as long as they want it to be.

I had one patient that had a very short one. Just give me time. And then I had another patient who had a big, long one listing all of his expectations. Cuz that's what he wanted. He wanted everyone to know how to best communicate with him. And I think that's the cool part, is that they're so tailored to their specific needs and their communication.

Genevieve: Terrific. All right, so before we wrap up. This summer was your guys' first time working hands-on with a client. What did you think the summer session was going to be like? And I know you both did two sessions. What did you think it would be like? What did you think in the middle of it?

And did it change when you wrapped up? What's your impression of aphasia, doing aphasia therapy, that kind of thing?

Callie: I came into graduate school very interested in pediatric care. So, I went into the aphasia clinic, just kind of unsure. I was a little bit intimidated by it. I don't really know why, but I learned throughout that they are so appreciative of your help and any therapy that you can provide for them.

SHARING THEIR STORIES

Callie: They're so receptive to everything that you say so far, and I really, I feel like my eyes were just open to how much they want you and how much they need your help as well. Also, another part that I really liked about it was they have like such incredible stories about their lives, and you get to be a part of bringing them to a place where they once were or closer to whom they feel like they were before their accident.

And I don't know; their positive outlook is just so… it fuels my passion, honestly. I had a great experience. We were tired. We had classes at the same time, but it changed my perspectives on adults.

Genevieve: Nice. Come on over to the adult side

Abigail: Yeah, I agree with Callie. I love that every patient had their own story and they had a life before their stroke, and I was really impacted by that and very moved by, like Callie was saying, their motivation and just their willingness to work. One of my patients never wanted to take a break. We had to tell him it was break time. Like you need to rest your brain for a minute. We love that you're so motivated, but you need a minute to just sit and be still.

But yeah, I was just really inspired by not only my patients but all the other patients that we got to interact with. It was very, very rewarding and fulfilling, and I just loved how functional the goals were. You know, we worked on reading books because my patient wanted to read to his grandchildren, and I loved that.

I thought it was very meaningful and important for him, and so that inspired him and motivated him to wanna work. But yeah, it was hard. It was long, but it was so worth it and was just a great experience.

GROUP SESSIONS FOR GENERALIZATION + COMMUNITY

Callie: So we also were exposed to so many different ranges of what aphasia looks like in every situation. We had group therapy sessions for 30 minutes in the morning and an hour in the afternoon, and then we treated independently for two and a half hours. And so we got to know quite a few, like 20-plus patients, and they were all so inspiring, like you said.

And they all were so motivated, and they wanted to be there. They wanna come back next year. It was very, very heartwarming.

Abigail: Yeah. And it was cool because we would have the morning meeting, where it would be a big group of however many patients, 10 or whatever the number was. Then our patients would meet in smaller little groups, and we would have conversations in just a smaller group setting.

And I thought that was really, really cool. And I loved it. It was awesome.

Genevieve: Groups are a great way to work on the generalization of skills and practice with other people. And I think for folks with aphasia to see that aphasia is different for everybody and the grass isn't always greener.

Callie: Definitely, caregivers too. That's a lot of every day, and they would sit in on the group sessions in the individual sessions, not knowing about aphasia before their loved one's diagnosis. They weren't aware of all it could entail or what it could look like in all of its severity, which was kind of good, like community outreach, too, spreading the word about aphasia as well. Now they've seen it, they've seen the range of it, and they can speak on it as well.

Abigail: And I think it was cool that we had patients from all stages of recovery. We had patients that had their stroke a month ago, and then we had another patient that was five years out.

And so it was cool for the people that had just had their stroke. I think it gave them a lot of promise and just hope for where they would be later on in their recovery. And I think it was also inspiring for the caregivers, too, to just see that therapy helps build new pathways in your brain.

And it's just great for the patients and great for the caregivers, too, to have that support.

Genevieve: And I'm just gonna say, there is no such thing as a plateau. Yes, there's spontaneous recovery, and recovery will slow down. Still, it's up to us clinicians to find the tools and the methods and what motivates these folks because even years after a stroke, you can still improve your communication.

You can still reach goals, and I think that's just really important to think outside the box in that. That’s my own 2 cents I gotta throw in here.

Abigail: Yeah, I love that. I think that's important to remember. And I think what was unique about our summer aphasia program was its intensity of it. So it was four hours every single day.

And I think because of that like you're getting lots of repetition, lots of opportunities. You're really honing in on that intensity. So I think it was really cool to see, in a short amount of time, how much progress these patients made, so it was really cool.

Genevieve: Fabulous. Ladies, thank you so much for coming on and talking to us about communication. Partner training gives a little different perspective, both from your perspective as well as the training you went through and what you saw during the summer program.

Thank you so much.

Callie: So much fun.

Abigail: So good to see you.

Genevieve: All right. Have a good day and good luck with the rest of your finals.

Thank you.

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If you have a loved one or know someone with aphasia and want to explore reaching new goals in communication, consider scheduling a FREE Zoom Consult. You can schedule via this calendar link. Consults are also available by calling 512-553-4364. We serve clients across the USA.

Categories: aphasia, communication partner training, grad student slp