Kintinu'd Conversations
You’re listening to Kintinu’d Conversations. We’re healthcare providers working at Kintinu Telerehab out of Omaha, NE. We provide physical, occupational, speech, and psychological therapy to help individuals around our country get back to life. This podcast is designed to engage a variety of listeners on topics that matter to us-- whether at work, in life, or in our relationships.
Kintinu'd Conversations
S3E25 - The Silent Storm: The Impact of Aphasia and the Power of the interACT Program
Backed by decades of experience producing exceptional clinical outcomes, Kintinu Telerehab connects recovery to everyday life. In this podcast, we explore hot topics in rehabilitation, the keys to personal growth and recovery, and how to apply it all to the real-world.
In this episode of Kintinu’d Conversations, Brad Dexter, sits down with QLI's extraordinary speech therapist, Zoey Devney, to unravel the complexities of aphasia. This often-misunderstood language disorder can challenge one's ability to speak, understand, read, and write, yet it leaves intelligence intact. Zoey shines a light on how aphasia differs from other speech disorders and shares her personal journey that fueled the creation of the interACT program at QLI, a beacon of hope for those navigating the silent storm of aphasia. As a listener, Zoey will leave you with a deep understanding of this complex condition, along with effective strategies to empower people with aphasia to better connect with the world.
Enjoy!
Click here to learn more about interACT!
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Welcome to Continued Conversations where we explore hot topics and rehabilitation, the keys to personal growth and how to apply it all to the real world. Hey, welcome back to Continued Conversations. This is Brad Dexter, and I'm joined in studio today by one of our speech therapists at QLI, zoe Devney. Hi.
Speaker 2:Zoe. Hello Brad, How's it going?
Speaker 1:Going well. Good to have you here. Yeah, for our listeners, if you're new to the podcast or weren't familiar with us already, continued Conversations is kind of a spin-off of our tele-rehab program, which is called Continued Tele-rehab and Continue is under the umbrella of our parent company, qli, and QLI serves individuals with catastrophic injuries in a post-hospital setting in Omaha, nebraska, and Zoe has been a part of the team there for about a year and a half now, right.
Speaker 2:Yep, exactly About a year and a half.
Speaker 1:And so we're going to spend a little bit of our time today talking about a program that Zoe has helped to develop to serve individuals with aphasia. But before we jump into all of those details, I'd love to just kind of have a starter question to warm us up a little bit. So, zoe, what has been good, either personally or professionally, for?
Speaker 2:you lately. Oh gosh, I feel like I'm finally, I guess, professionally getting into what feels like a better flow of things. Like as a new clinician, you're always trying to find your footing, figure out a good rhythm for the day, and I feel like I've kind of fallen into a little bit of a rhythm Granted now that I say that it'll probably not be the case. But yeah, just feeling like I kind of know what's going on here at QLI a little bit more and more every day, and feeling like we're in a good spot with this program that you mentioned.
Speaker 1:That's awesome, yeah, yeah. So I'm kind of like gradually layer on a little bit more, especially as a new clinician like you're trying to get you know. If you want to listen to it, you can go back and listen to one of the podcasts we did around May, june of 2023, that featured Zoe and one of our other speech therapists, just kind of processing through what it was like coming out of school, transitioning into the workplace and you are constantly kind of like layering on more and more over the course of that time and for you helping to develop this program to serve individuals with aphasia too, I'm going to answer the question. That way You're not just left on the hook by yourself. I would say I'll go more personally.
Speaker 1:We have we've shifted from soccer in our household to basketball. Basketball is more of my sport and so coaching one of my daughters at least in basketball, which has been fun. I coach soccer team too, but admittedly, like I don't know nearly as much about soccer and I need help from other other dads and other coaches to kind of make that happen. So it's been fun to get into basketball season and and kind of kick things off that way. So I enjoy watching the kids grow and develop like that. All right, that's enough about us. I suppose, listeners, we're going to make a shift here into learning a little bit more about aphasia. So, again, zoe has helped develop a program called interact at QLI, and it's really targeting individuals that are experiencing aphasia. And so if you're not familiar with what aphasia is, zoe, can you enlighten us please?
Speaker 2:Yes, absolutely. And don't feel bad if you don't know what the word aphasia is or have never heard of it, because, quick little statistic, about 84 and a half percent of the entire population have never even heard the term aphasia before. So it is definitely a term that deserves a little bit more spotlight and I'm excited to talk about it today. So aphasia is an acquired language disorder that affects all of the different language modalities. And when I say language modalities, I mean speaking, your understanding of language, not your hearing, but your understanding of the words coming in and then reading and writing.
Speaker 2:And when I say it's an acquired language disorder, I mean just that there has been some type of event or injury that has caused injury to the brain and resulting in this aphasia. Most commonly it comes from stroke or traumatic brain injury. So that's a little bit of an overview. Intelligence is unaffected with aphasia, which is very, I would say, commonly misunderstood. Just because of the nature of aphasia and how it comes about either from a stroke or traumatic brain injury. A lot of times different parts of the brain are affected that can affect intelligence, but aphasia in and of itself does not affect intelligence.
Speaker 1:Okay. So hey, this is a, this is a PT physical therapist. Trying to summarize what the speech therapist just told us, right? But you know, if I'm thinking about my anatomy correctly and what you just said, like we're really talking about communication issues. So either maybe a person's ability to understand what's being communicated to them or an inability to communicate what they're thinking clearly to another person, and that could be maybe the inability to form words, or maybe there's like a motor aspect with some of the muscles of speaking, phyllis so, as far as the motor component goes, that actually delves more into speech, which is a very common Kind of swap out speech and language.
Speaker 2:Language refers to kind of the rules of a language. Right, like English has different rules in Spanish, spanish has different rules than Japanese, and so on and so forth. So that's all going on. Language is all within the brain. Speech is what you actually hear coming out of my mouth, how our muscles move and shape to form different sounds. So aphasia is actually separate. There's no muscle difficulty with aphasia. That would be either apraxia or dysarthria.
Speaker 2:But aphasia, yes, is all within the brain and so a lot of times with aphasia there are kind of different types of aphasia. There's eight different types that we go into. I don't want to get two in the weeds, but there are different areas of the brain that are affected, just kind of based on where sight of injury is. We talk about language as being primarily in the left hemisphere of the brain. It gets a little bit goofy if you're left-handed A lot of times. Sometimes it'll be kind of flip-flop. So it might be housed more in the right hemisphere, but typically it's found in the left hemisphere. So the temporal and frontal lobes are kind of where all of your language is housed.
Speaker 1:Temporal is kind of like on the side of the skull right, Kind of like the ear area. Yep, exactly, and then frontal is towards the front, Yep exactly.
Speaker 2:And there are kind of two main areas that we look at when we think about language. Wernicke's is the first one, and that's in that temporal region kind of close to the ear you could say. And then Broca's area is the frontal part, so that's in the frontal lobe and there's kind of different fibers of the brain that connect the two and because of injury, just where that's affected, usually one or both of those is affected. So that kind of helps determine the type of aphasia that somebody presents with. But that being said, even if somebody has the same type of aphasia as somebody else, they always present differently.
Speaker 1:Because not a single person is made exactly the same and you can't create exactly the same injury to the brain, Exactly exactly Okay, so why is it a problem?
Speaker 2:So it's a problem because, I mean, you think about us as humans. We are incredibly social creatures, right? That's part of being human is wanting to interact with different people, and that's actually kind of how the program name got started was our interactions of our day-to-day life rely so heavily on communication, and when one of those modalities either speaking, auditory, comprehension, reading, writing or a combination of those is affected because of aphasia, it really interrupts your day-to-day life. There are so many secondary consequences to aphasia other than just talking with somebody. There's kind of this whole list that I could dive into, but just a few of them. Low-level employment, employment is often affected heavily because of aphasia. There's so much language that goes into our day-to-day work that we don't realize Negative sense of self or identity, loss of identity, negative impacts on family and friends, and then higher medical costs as well. So it genuinely truly affects every part of your life.
Speaker 1:So I'm thinking of a few examples of individuals that I've worked with over the years where it might be really hard for them to actually generate the information that they want to say, and one of this was probably wrong actually thinking about it, but sometimes I would start kind of trying to guess or fill in the words that they're trying to say and it would get frustrating for them as they're trying to communicate what they want to communicate. You could see them thinking over no, that's not quite it and it's almost like for them in those examples playing charades and your partner is terrible. I was the partner, right, Right, right.
Speaker 2:Yeah, yeah, and that's also not uncommon, I think, as what we call communication partners like you mentioned we have communication partners that we're talking to or with.
Speaker 2:A lot of times, partners will try to jump in, very well meaning wanting to try to guess, right, but the individual of aphasia knows what they want to say, it's in there, it's just not coming out. There's kind of that disruption between the language centers and then kind of more of those musculature motor centers, and so it can be really really frustrating when you're jumping in trying to guess and they just need some of that extra wait time to get it out in any way that they can, whether that's using an app to help speak for them or with them using a tool, maybe writing as a strength. Maybe it's always good for them to write something out instead of verbally saying it. There's a lot of different options, but a very common, I guess misconception of gosh. I should jump in, I should try to help them this way, and so I think yeah, I think that's very common.
Speaker 1:How many maybe you have this, that, maybe you don't, but how many people in the US have aphasia, or even I don't know, worldwide, like how big of a problem is this?
Speaker 2:Yeah, so in the United States alone and this is, as of gosh, 2020, I believe, yes, 2020, 2.5 to 4 million Americans is estimated to have aphasia, and then equates to about 180,000 people per year developing aphasia. And actually just a fun little. Well, it's not fun by any means, but, as a little extra statistic, there are actually more people in the United States who have aphasia than Parkinson's, cerebral palsy and muscular dystrophy combined, so it is very, very prevalent in the United States and, to assume, a little bit around the world.
Speaker 1:Yeah, I think if listeners, if you're not listening or if you're not working with individuals that have aphasia, you maybe were exposed to aphasia in the news because of Bruce Willis or what, the last year, year and a half, and granted, I think is it dementia or Alzheimer's that is causing, or has caused, his aphasia. Yeah, that maybe is one way that you've been exposed to it recently, right?
Speaker 2:Yeah, definitely. I feel like aphasia has definitely been more in the news as of late just because of Bruce Willis, and I think there was a little bit of misunderstanding or miscommunication at first. He does have what's called primary progressive aphasia and so we naturally associate that to just aphasia in general. It is technically under the umbrella of dementia. It's actually under the umbrella of what's called frontal temporal dementia. So both the temporal lobe and frontal lobe that we were talking about earlier are essentially degenerating over time and so the language centers in those areas are just naturally affected and causing some of that aphasia. So it's very similar and it's kind of misleading as far as the name goes, but there are some minor differences.
Speaker 1:Yeah, you've done a good job of just kind of establishing hey, here's the problem, here's kind of why it exists and how many people it exists with. But maybe we can start diving into, like, what in the world do you do about that? So, as a speech language pathologist, how do you start to address that? What's best practice?
Speaker 2:Yeah, yeah. So it's interesting Aphasia to me. I always say aphasia is a beast, because it truly is. It affects, like I said, so many different areas of people's lives and in so many different ways. We might say that somebody has really good auditory comprehension, or that auditory comprehension is a strength, but if you don't say something just the right way or if it's a little bit jumbled as far as language goes, then you see a lot of breakdowns and a quote that really, really hits home for me and I'm gonna butcher the names of the researchers so I apologize in advance, but Lam and Wadches in 2010 released a statement.
Speaker 2:Results from this study showed aphasia has the largest negative impact on quality of life, more than cancer and Alzheimer's disease. So, yeah, there are definitely two different camps of kind of thought behind aphasia therapy at this point. There's kind of the camp that has been going on since kind of the start of speech language pathology as a field, and that is kind of the idea that you should really be focusing on impairment-based treatment alone, and over the last 20 years or so, there's been a lot of research and literature coming out that recommends looking at the person as a whole right and that feels very foundational to rehabilitation, care and rehab in general and it's kind of outlined by the World Health Organization and from that was modified what's called the Living with aphasia framework for outcome measure, the A from and it just looks at what does living with aphasia all entail. So there are kind of four different parts to this. I guess you could say participation in life situations, personal identity, attitude and feelings, communication and language, environments and language and related impairments. So the first school of thought really focuses in on just that one bubble of language and related impairments and that's really the impairment focused therapies that are out there.
Speaker 2:The shift that has been happening has been taking that entire framework and incorporating it into what's called the biopsychosocial model of intervention for aphasia and more commonly known as the life participation approach to aphasia. And there's obviously the component where you want to target the language impairment right. That's everybody's goal. I wanna talk better, I wanna be better at this. So there is absolutely a time and a space for that. But best practice for aphasia therapy is really working in all of those different domains of somebody's life. I mentioned earlier just the different aspects of some of these lives that's affected by aphasia, including, like family members and health costs, medical costs. There's just been a shift, I would say over the last 20 years or so, that really supports looking at all the domains instead of just the impairment.
Speaker 1:That's awesome. You've just enlightened me as a PT. Hopefully it's been helpful to our listeners as well. Hey, so you've really kind of talked about like what the problem with aphasia is, how that impacts people, and it sounds like you're kind of in that life participation approach or camp, and I'm imagining that that's influenced how you've developed Interact as a program. So can you maybe start to delve into, hey, what are some of the details? How is this actually operating and what does it look like right now?
Speaker 2:Yeah, absolutely. So definitely in the life participation approach to aphasia camp. You could say the way the interact was constructed and built was the idea of thinking about the whole person, so interact itself. So I guess the way that interact is written out is it's lower case for inter and then the ACT is capitalized for aphasia communication therapy. So wanted to leave it a little bit more open-ended, as, like gosh, what does that mean? So that people can reach out and get more information. I wanted to leave it more generalized so that nobody felt like they were necessarily excluded right off the bat.
Speaker 2:So the interact program here at QLI is really structured around the model that falls under the umbrella of an intensive comprehensive aphasia program or an ICAP. There are, I believe, less than 30 in the United States. So you can imagine 50 states, less than 30 ICAPs. There's definitely kind of a gap in care. So I guess what qualifies as intensive? Right, that's always everybody's question. It's kind of a range. So to be considered an ICAP you have to have three hours of therapy Monday through Friday for at least two weeks. The interact program, on the other hand, took that and we ran with it. So we do three to four hours every day, monday through Friday, for four to six weeks. So we wanted to really really make it very intensive and have a lot of good time to be able to do the different things that we wanted to do with this program to target all of those domains that I mentioned earlier.
Speaker 2:And I think one of the things that makes interact a little bit different than other ICAPs or aphasia programs in general around the US is that we do what's called communication partner training, and so that really looks at I can spend these four to six weeks of intensive time with somebody, but how is that going to generalize when they go home? Because the goal is for them to be able to get back to their lives, interact with people that they normally do. And so the idea is that we bring in family members once or twice a week, depending on their availability, and I guess I shouldn't say just family members. It's family members, friends, colleagues, people in the community, whoever we feel like makes sense to make up that communication support team, and we just do a lot of training with them. We problem solve.
Speaker 2:I do some conversational coaching in the moment. So if there is a communication breakdown, how do we fix that in the moment? Not that I'm training them to be their speech therapist, because I'm not, that's not their job, that's not their role. But I want to give them strategies to have in a toolbox. What are some different things? Can you get out a pen and paper? Can you refer them to their speech app? That's going to help with some of that language. Just what are some different ways to problem solve when a communication breakdown happens? So that's, I would say, a really significant part of the interact program, and then we kind of have a little bit of actually we have a lot of flexibility as far as what we can do otherwise. I think there's always this thought of rehabilitation versus compensation, and I don't necessarily think that they should be.
Speaker 1:It's not an either or thing.
Speaker 2:Yeah.
Speaker 1:Maybe a both and Absolutely.
Speaker 2:I would be doing a disservice to people, and it's been discussed in the literature extensively that you need to have both rehab and compensation.
Speaker 2:That's a whole person approach that we're really going for.
Speaker 2:And so we have a room here at QLI that's kind of dedicated for this program.
Speaker 2:It doesn't look like your traditional therapy room and that was done very intentionally.
Speaker 2:So there's couches, there's comfortable chairs, there's lighting, there's going to be like a coffee station, there's all sorts of different things that are going to facilitate different types of communication, and obviously the goal is work on some of those strategies, do a lot of education, a lot of building, problem solve, trial and then take it out to the bigger campus of QLI, which I think also makes this program unique, because QLI is such a safe space or a good buffer between being in a therapy room trying these things to out in the community.
Speaker 2:Obviously, out in the community is the ultimate goal. But can we put a buffer and can we try some things in a safe place first, with different communication partners, so you'll still be putting the strategies to the test, but in a controlled way and then after that, once we feel comfortable out kind of on QLI's campus, how can we then go to different stores and appointments and places that somebody is going to go in their day to day life and really, really see how these strategies translate and how we can problem solve in the real world moment.
Speaker 1:All right, zoe. So you obviously are just a plethora of knowledge and information and, honestly, it's a really good person to have in this seat running that program on campus too. As you were talking, I was just thinking about QLI's mission statement to deliver life-changing rehabilitation and care, to instill purpose, promote dignity and create hope, and to commit to excellence, and I'm going through each one of those elements.
Speaker 1:I'm like oh yeah, check the life-changing care you were talking about, how much it impacts a person's ability to obviously communicate, to express themselves, maybe even to find work, to have a place in their family unit or in their support system, and actually addressing that in a thoughtful and best practice, clinically sort of way is life-changing, instilling purpose. Finding ways to get people back involved in their family systems, in their support system, maybe in the workplace, and to find significant strategies that allow them to do high-value things in their lives is incredible and that also promotes dignity.
Speaker 2:It gives dignity back.
Speaker 1:It gives agency to them and there's certainly an element of creating hope there. And just listening to you describe all this information wow, I would love to have if I had this happen to a family member or to myself. I'd love to have someone like you in my corner because you very much are committing to excellence in the way that you're approaching the development of this and involving the individual not just in a siloed aspect just around language, but finding ways to involve them within maybe more programs on QLIs campus and ultimately to train the support systems and get them back out in the community, because that reproduction or replication of what you're doing and training other people goes a long way in getting more and more repetitions for that individual and having the right support in place throughout the day, right.
Speaker 2:Yeah, am I off on any of that? No, that is all spot on. Good summary, good wrap up.
Speaker 1:Maybe let's finish with, because if I'm listening to this, I guess and I have a family member that has this going on in their life I would want to know well, ok, who covers this right? Am I just opening up the wallet or what happens? So can you maybe just fill in our listeners as to who maybe some of the payers are, and then how do they get in touch with us?
Speaker 2:Yeah, absolutely All valid questions and all questions that come up very frequently. So I think, first and foremost, the biggest thing with the Interact Program is that flexibility piece. We have lots of different avenues as far as how this is funded. We can tap into an outpatient benefit, we can do work comp, we can do private pay and a huge part of the Interact Program is wanting to serve people with aphasia and their loved ones.
Speaker 2:So I never want to turn away somebody just because of a financial concern. So I think if the Interactive Program you feel like is a good fit, maybe just want more information. You can go to the QLI website and it's under the Programs tab. I think it says Interactive Phasia Program, if I'm not mistaken, and down at the bottom is my contact information and you can reach out to me and even if you just have questions, you want more information. Maybe you want to talk through. Does my insurance have this outpatient benefit? That's something that we can check for you, which is amazing, and I don't do that personally, but we have amazing people here at QLI who take care of that piece and so I think, just knowing that there's a lot of different avenues, that we can go with that and that shouldn't be a huge barrier and concern.
Speaker 1:Awesome, we will. I'll link that in the show notes too. So, listener, if you need that for contact information, go ahead and look in the show notes and you should be able to see a link for that as well. Zoe, thank you so much for your time and joining and just kind of sharing your vision and what's been going on with the Interactive Program and looking forward to the impact that it's gonna make in the future.
Speaker 2:Yeah, well, thank you for having me on. Thanks for joining the conversation with us today. If you found it helpful, please share with your family and friends. You can learn more about us on our website at continuetellarehabcom, or check us out on YouTube, instagram and Facebook.
