Aphasia Access Conversations

In this episode you will: • Learn about the role of stress in communication and how to manage stress through coping strategies. • Learn about spirituality and spiritual practices, along with the distinctions between spirituality and religion. • Learn about the Aphasia Brief-Cope tool. • Learn about the potential adaptive value of spiritual beliefs and practices for individuals with aphasia. • Learn about how to start conversations about spirituality and aphasia.

Imagine for a moment that you've lost your connection to a deeply important aspect of your life, a mental space, a conversation, a meditation, a fellowship. Aphasia can alter so many connections, but this strikes at your core. Well, there's hope. Spirituality and spiritual practices are possible after aphasia and clinicians should offer to open these doors if that is what the person with aphasia wants.

Welcome to the Aphasia Access Conversations Podcast. I'm Jerry Hoepner. I'm a professor at the University of Wisconsin – Eau Claire and co-facilitator of the Chippewa Valley Aphasia Camp, Blugold Brain Injury Group, Mayo Brain Injury Group, Brain In-Com intensive brain injury program, and Thursday Night Poets.

I'm also a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources.

Hannah Wendel Griffey is an assistant professor in the Department of Communication Disorders at Brigham Young University, where she directs the PEARL Lab (Psychosocial Effects of Aphasia on the Rehabilitation of Language) within the BYU Aphasia Center. Her research examines how psychosocial factors shape recovery, participation, and quality of life for people with aphasia, with particular attention to the measurement and treatment of stress, anxiety, coping, and identity. Grounded in participation-focused frameworks derived from the ICF, including A-FROM and the Life Participation Approach to Aphasia, her work promotes culturally responsive, holistic care. A central focus of her scholarship is religion and spirituality as coping mechanisms in neurogenic communication disorders, examining how communication barriers restrict spiritual participation and how adaptations and clinician support can facilitate continued engagement and well-being.

Episode: 140

Taking Charge After Stroke:

Self-Determination and Recovery with Vivian Fu

In this episode you will discover:

● The Conversation Is the Intervention — A structured, facilitated conversation that centers a person's identity, hopes, and vision for their best day produces measurable improvements in quality of life and independence a year after stroke. Connection isn't soft — it's evidence-based.

● Reframe the Expert in the Room — Take Charge asks clinicians to resist offering advice, validation, or direction — and to trust that the person with stroke already holds the wisdom they need. The hardest part of the facilitator role is staying out of the way.

● Self-Determination Is Not a Luxury — When people with stroke are supported to set their own direction, outcomes improve, costs decrease, and the effects last for years. Building systems that protect that autonomy isn't idealistic — it's what the data demands.

Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Katie Strong from Central Michigan University and a member of the Aphasia Access Podcast Working Group, a community dedicated to supporting better aphasia care.

Today I'm speaking with Dr. Vivian Fu, a stroke neurologist living and working in Kelowna, British Columbia, the unceded territories of the Syilx / Okanagan people. Vivian trained in Aotearoa New Zealand, where she completed her PhD running the Taking Charge After Stroke trial. Take Charge showed that people with stroke who were supported to follow their own self-determination had much better quality of life and independence a year after their stroke. The second Take Charge RCT showed that two sessions about six weeks apart produce better outcomes than one session. Vivian strives to embed the Take Charge philosophy in her daily practice, and is focused on improving access to high quality stroke care for rural, regional, and underrepresented populations.

I have been looking forward to this conversation. What drew me to Take Charge was how it reframes the question entirely — from what does the clinician do for this person to what does this person want for their own life. That shift is deceptively simple, and as you'll hear, the evidence behind it is anything but.

Let's get into it.

Katie Strong: Welcome, Vivian.

Vivian Fu: Thank you so much for having me, Katie. I'd like to start off with my Pepeha. This is an introduction in Te Reo Māori, which is the indigenous language of the people of Aotearoa New Zealand, and I'll just translate each line.

Nō Hong Kong ōku tīpuna. My ancestors come from Hong Kong.

I tipu ake au ki Aotearoa. I grew up in Aotearoa, New Zealand.

E noho ana au ki Ki-Low-Na. I live in Kelowna, British Columbia.

Ko tēnei taku mihi ki ngā tāngata whenua o te rohe nei. I like to pay my deepest respects to the first peoples of this land. I live on the unceded territories of the Syilx and Okanagan peoples.

Ko tēnei taku mihi ki ngā maunga, ki ngā awa, ki ngā roto, ki ngā Papatuānuku, o te rohe nei. I'd like to pay my deepest respects to the mountains, rivers, and the lakes, and to Mother Earth. All these important landmarks that have been here for millennia.

Nō reira, tēna koutou, tēna koutou, tēna koutou katoa. Therefore, hello, hello, hello, Ko Vivian Fu tōku ingoa. Lovely to be here.

Katie Strong: Well, I'm so glad you're here. And I wanted to start off today asking about the Take Charge program that you've been working with, and talk to me about how that began. What was the origin of that?

Vivian Fu: Sure, so really this work began in probably the late 90s early 2000s when clinicians in Aotearoa New Zealand realized that there were different outcomes for people who were Māori compared with non-Māori, and I guess an important point to illustrate is that in Aotearoa society we view things in a very bicultural lens, and by that I mean Tangata Whenua, who are the people of the land, so indigenous people of the Māori and Tangata Tiriti, so everyone else are people of the treaty. It doesn't really matter where you come from, but you are a person of the treaty if you live in Aotearoa, and so it's a bicultural lens, and so we always look at things in that way, and that's how our kind of entire society is grounded upon that. And so when we look at health outcomes, what we could see back then, and unfortunately what we, in a way, still see now is that Māori were experiencing a stroke at about 20 years younger than non-Māori, and they were more likely to die from their stroke, and also more likely to be severely disabled. And so there was a difference in life expectancy, a difference in overall rehabilitation access, difference in overall outcomes, and so it started off with Professor Matire Harwood's work. She is Tangata Whenua, and in her PhD, she was looking at why there were these differences in outcomes and wanting to address them. And so that started off with the Māori and Pacific Stroke Study, which was essentially conducted in just Māori and Pacific people in Aotearoa, New Zealand, out of many different centers around the country. It was a four arm study.. It was a randomized control trial, and it looked at a conversation, which was labeled as the "Take Charge" session, but it was, it was really a connection and a conversation versus a professionally made DVD from the New Zealand Stroke Foundation about people's experiences and stories after stroke. And then the fourth arm of the trial was getting both of those interventions, and there was a control group. So there were three active groups in one control group. And what the researchers basically found was that anybody who had received this session of discussion and connection did much better a year after stroke in terms of quality of life, independence, and caregiver strain. And so that was the first sort of indication that there was something in that conversation that was really important. Unfortunately, it didn't really take off in terms of being able to be implemented, and so then Dr. Harry McNaughton, who was Dr. Harwood's supervisor wrote multiple grants and tried to get this session into much more of a bigger trial with some some type of implementation, and that's where I came along and we essentially did two things. We operationalized the intervention into something that had a bit of a framework, so with a bit of a booklet and a bit of a structure to follow. Really looking into what was it about that conversation that was so powerful and made such a difference to people, and tried to put those things into practice. Then, secondly, to conduct a second trial in New Zealand out of seven centers for people with stroke who were non-Māori and non-Pacific, because the struggle that we came across was that it was only shown to be effective in a small group of people, but not in everybody, and so we had to do things backwards. And so that was really where it all began, from these principles of self-determination, so Tino Rangatiratanga, which is a really important principle in Te Ao Māori, and in the world of Māori, but also knowing that Māori and a lot of indigenous peoples, we think of health as this concept called Te Whare Tapa Whā, for example, which is the house with four walls. So a person is never just their body and their physical health, there are other walls that keep the house upright. So mental health, spiritual health, and family health, whānau is so important, and feeling as though you have strong foundations in where you belong is also really important. So it's that really holistic look at health of an individual and how we can address all of those things in an intervention is really where it all came from.

Katie Strong: Thank you for sharing. I appreciate the backstory, and also just the idea of what you're thinking about from a holistic health standpoint. I know our listeners are probably curious, some of them might not have heard about Take Charge before, so this is the first time of them hearing about this, and so I was hoping, Vivian, you could give us an overview of what the intervention is, and then maybe walk us through what a session actually looks like in practice.

Vivian Fu: Yeah, absolutely. So I'll talk you through the session in the way that it was done in the larger Take Charge trial. So this was done in 400 non-Māori, non-Pacific people with stroke, and our trial there had three arms. So there was a control group, there was a group that received just one session, and then there was a group that received two sessions six weeks apart roughly. The sessions were provided by a trained facilitator, and they were timed roughly somewhere between three to 18 weeks after stroke. So quite a large window, really, depending on when the person with stroke was ready to receive it. So the short version of what it looks like is it's based off the booklet and it's done face to face. It's a conversation and the facilitator is trained at the beginning to really try and establish a relationship…to build a relationship. There's a concept in Te Ao Māori called Whakawhanaungatanga, which is really sort of seeking another person's identity, recognizing who they are as a person, and trying to build connections. And so I guess in English, we think of that as building rapport, building trust. And so it in our trial was done face to face. We have also looked at ways of doing this via telehealth as well, which is, you can imagine, is a little bit different. But that step is really important, and we knew that it was important also in the initial Māori and Pacific trial, because the facilitators who were trained were actually ethnicity matched. So that's something where I think it came quite naturally in that trial, but in the second trial we really wanted to ensure that a relationship was built, and then there are three pages, initial pages in the booklet that look at different things. So the first page is looking at how the person has been affected by the stroke, and then asking them to think about actually who they really are as a person. It's a very simple concept, and a very sort of simple question, but for many people that's the first time they've really been asked that and have had to think about that. So anything that comes to mind that they can relate to, you know, who they are. An individual, and what it is that they love, so for example, for me, I would say, "I'm a mum, and I'm, I'm a stroke neurologist, I am a painter, I'm a poet, I'm someone who loves going for walks in hikes," and, you know, so those kinds of things, and it, and it kind of really builds on on that person's identity and who they are in the world. And so that's that sort of page one. It's really about establishing identity and sense of self.

And then the second page is talking then about my hopes and fears. And that might be a tricky one, really, for a lot of people to start talking about and thinking about. They may not want to express that, they may not have been asked that. Sometimes it brings out a lot of emotion, and that's why that initial beginning part of establishing trust and in a kind of a psychological safety space is really important. And then the third page is imagining or envisioning what my best day looks like. And you can be as wild and fantastical about that as you like. When we train our facilitators, we asked them to do these exercises as well themselves, so they can get a really good sense of what that's like, and I had a lovely training session with community health workers from Tanaha First Nation in Cranbrook, BC, and one of one of the attendees in the group said she'd love to have breakfast with a Sasquatch, and so that was absolutely, you know, it was so culturally relevant, so important.

Katie Strong: That makes my Pacific Northwest roots just smile there!

Vivian Fu: Exactly! Just so unique to that individual and to where they are in the world. And it's not something you can, you can pluck out of a textbook or pluck out of anything, right. It's where they are. I love that activity. It's quite magical what comes out. And then after those three pages are done, then there are some pages that are specifically related to goal setting, which may or may not be relevant to the person in front of you, things like a physical page, emotional, social, financial, health management type pages. And that really is a way to think about or encourage the person to think about, or we know what are the things that do matter to you, and and what are the things you would like to achieve in the long run, and what are some ways you might be able to break that down into achievable steps that you would personally want to do. But the session in practice can look like anything out of that. It can look from a person at session one being completely clammed up about not wanting to dig deep or not not being ready to engage in that. Or just kind of being, you know, keeping it all to themselves, and thinking about it, and ruminating about it, and then session two, looking very different after they've had that six weeks to think about it themselves. It can look like blank pages, or it could look like a person coming up with all sorts of brilliant ideas. Hopefully, you know, we always encourage if they can write the person with stroke as the one who is writing in the notebook. They keep it. They stick it on their fridge. They do whatever they like with it. They write in it in their own time, but it's completely fine to have blank pages. It's completely fine to have nothing come out of that conversation, nothing verbal, but it's just a space to an invitation to dig deep, and if there's something to say to feel heard. And I guess there was another question. I think that's quite important with regards to what the facilitator is doing, what are they not doing, and the facilitator is trained specifically to listen and ask questions and reflect the ideas that are being expressed by the person with stroke, but what they're not doing is they're not offering any advice or suggestions or pathways forward or how abouts or what abouts. They are not, and this is probably the hardest part. They're not passing any judgment, and that includes good judgment. So, by saying something like, "oh, that sounds like a really good idea", which seems like a really normal response from most people, it kind of implies that there are other ideas that are less good. Or the person with stroke might feel as though they are needing to have that kind of external validation, that external approval, and, and what we don't want is to for them to feel like they're doing this or saying this or thinking these things for the facilitator. We want them to think about it for themselves. And so all we encourage people to respond, is "oh, so you'd like to ride your bike, that's really interesting. How, how do you think you'll, you'll go about doing that?" You know, it's, it's much more neutral, but reflective way of speaking and listening, I guess.

Katie Strong: I am curious, how long is the training, or you know, what kinds of.. what we didn't talk about this, but I know people are going to want to know. So, what does it take to be trained?

Vivian Fu: This is quite funny. This is a thing that sort of been on my mind ever since we've started implementation around the world, and I have this ultimate goal of operate like actually making the training have some type of qualification and fidelity, and some structure. There is structure, but it's essentially myself or Harry doing a Zoom with people, and it takes maybe say four hours. But ideally, what we'd love to do is to have sort of recorded videos, and then we'd have live sessions, and then we'd have assessments, and then you get a certificate at the end. I have neither the budget or the…

Katie Strong: There's always the next step, for sure.

Vivian Fu: I'd love to be for people to be able to say, "Oh, I'm Take Charge trained" and for them to be able to like "Look, I've got this qualification, I'm Take Charge trained, I know how to do this," and especially for if we were thinking about doing it in more clinical trial settings, I think that's really important, but also, you know, for people, you know, to have on their CV, if they're moving between jobs and things, I think it's so useful. But yeah, basically people get in touch with myself or Harry and say, "Hi, we'd like to be trained, can you fit us in?" And we just do it for free.

Katie Strong: Lovely, I love it. And the other question I had as you were talking was how long is a typical session or or is there is there length?

Vivian Fu: So in the trial what our facilitators did was they because it was face to face and they had to drive between people's houses, they booked in the session, usually at 10:30 in the morning, and then another session, I think, if I remember correctly, either maybe it was 1:30 in the afternoon. And so you can probably surmise that for people with stroke, usually the 10:30 slot is the most popular. And you know, some people would would prefer to wake up earlier and be ready earlier, so they might ask for something like 9 o'clock and then they might usually go for about an hour and a half to two hours if it's a good going session, and they're really digging deep, and there's a lot to say. And often you know that first half an hour is, "Here's a cup of tea and a biscuit. Let's get to know each other. Tell me all about what happened with your stroke." That kind of stuff, so that listening and connecting stuff actually takes takes a while to establish, and I think people just allowed for that time. Then they'd do a second session in the afternoon again. There are lots of things, you know, cognitive problems, fatigue is a big one. So, if people felt like they couldn't keep going, the facilitator would say , "That's totally fine, we'll book in for, you know, do the rest of this another time, is that okay?" It was fine to really just, you can truncate it and break it up as much as the person really wants.

Katie Strong: Thank you. I appreciate the extra information. You had a recent publication in 2025 with some colleagues that looked at this work from a qualitative lens. You came up with some themes about doing things my way, coming to my own wisdom, and they're just so deeply related to identity, and what struck me was the contrast participants drew between Take Charge care and standard care, where they described being put in a box receiving scripted advice that had really nothing to do with who they were as a person. And when someone gets to tell the story of who they are to a genuinely good listener, something shifts. I was just curious, if you could think about what you think is happening there, or what you found in your study.

Vivian Fu: Well, I think for the most part, as a, you know, as a clinician, if we think about from the moment the person has a stroke, they disempowered from that very moment. Something happens where they just aren't themselves, and they are brought into a merge. A bunch of things happen to them that they can't really even speak up about. You know, they're popped in a scanner. They might get thrombolised, you know, all these things are happening. And the person doesn't really know what's going on. There are a lot of important qualitative studies that have been done, looking at that element of feeling disempowered, and what somebody in New Zealand study described as feeling gut-wrenchingly emotional. You know, experiences that that aren't heard and aren't ever expressed to to anyone in the healthcare side and aren't dealt with, and so, if you think about that, just that trauma of having a stroke and then going through all of that stuff, and you know, ending up in a bed somewhere on a ward with strangers on the other side of a curtain, and it's really pretty traumatic. And so I think what was powerful with Take Charge was it's an it's an opportunity for someone to finally tell their story and feel heard and for all that stuff to just come out. And a lot of the time you know people might say, "Oh, well, you could talk to your family, you can talk to your kids, or, you know, whatever. Once you get home" but actually, a lot of people don't feel like talking to those who are closest to them about how much it affected them, and there is still an element of stigma. There's still an element of, "Oh, you know, you look great physically, you to someone we know having had a big health scare, and then kind of coming back into that. But there's there's a real dissonance between what is going on inside a person and and how other people are reacting to them coming back into "normal spaces". And so I think the ability to tell your story from the very get go. You know, all of the messiness of it. All the things that went wrong, and then to have somebody listen to that really gives meaning to it and makes it real, but it also helps that person really reestablish their sense of power to regain some power from that that they had lost. And there's a lot of power in story, and I think the kind of, you know, lovely thing about it is that sort of all indigenous cultures sort of be like, you know, First Nations, Māori, Gaelic, a lot of cultures really put a lot of value in the power of storytelling. And that is how historically things were really passed down, and so I think it's through that ability to be able to feel heard and to tell your story that then the person who is speaking can actually hear themselves say things out loud for the first time. And then understand the power and the value and the worth in their words and their experience, and that is that process of coming to my own wisdom, is "Oh, actually, you know, I do know about my body. I am, I am the expert, not these people in their white coats, or you know, with their expertise, I am the expert. I know what I need. I can plan my rehabilitation. I can go back to the things that I want to do, and this is how I'm going to do it." And it's that, that kind of reestablishment of confidence and strength and hope that is so powerful. I think.

Katie Strong: I agree. I agree, Vivian. As you know, our listeners are primarily speech language pathologists working with people with aphasia. We also have people with aphasia that are listening, and researchers as well. But you know, the capacity for language being disrupted by aphasia. I was just curious, with Take Charge, as you've studied it, is you know, really a talking therapy with writing, and, and those sorts of things, and so I was just curious, you know, what would it take to extend this kind of intervention to people with aphasia, and what principles would you want to most preserve in the adaptation.

Vivian Fu: Yeah, thank you. That's such an important question. We certainly, in the Take Charge trial, included people with aphasia in the trial, and the way that we sort of just included them was if they could understand or the consent form and could mark an "x" on the form, we'd be happy to to have them included, and so we had people with mild to moderate and moderate to severe aphasia in the trial. And we hadn't made any specific changes or tweaks to the intervention, the facilitator just did what they could with what we had. But I think what has come out of reviews of the implementation of Take Charge now in New Zealand is that it is really important for us to look at how we can adapt the intervention for people with aphasia. I think for the facilitators in the trial, what they did was they allowed a lot more time, so the usual two and a half hours became three and a half hours, and that was fine if the person could continue. But also I think from the report we need to look at alternative ways of how we can complete some of these activities, whether it's providing images where people can point, whether it's a lot more inclusion of their family, their whānau important people to them who can help with, you know, subtle guidance, and, and, and having sort of lived with the person now, can read their non-verbal expressions a lot better than a stranger, a facilitator can and can help with the guidance of participating. And really, while Take Charge has been translated, I think, now into seven or eight different languages, we really need to adapt Take Charge to other communication needs and other languages, but what I.. so my role.. sorry, I didn't.. I'd actually say this, but my role in the in the large trial was as the blinded outcomes assessor, so I went around at one year after stroke. I traveled around to the 400 or so different other people, participants' homes around the country, and I sat in their living rooms, and I listened to their stories again. And then I did all of their outcome instruments and got all of their outcomes done, but I did not know which group they were allocated to. And then I locked all the data, and then I'd say, "Hey, so which group did you get Take Charge or not?" And it was really, it was good. I think out of the 400 there were only two people who, when I turned up, actually had the booklet on the table, and so you know, I just ignored it, and then, but yeah, it was, it was really good in terms of sort of blinding and masking, and then sort of having a guess as I was going through and checking where things were at. It was such a privilege for me to, as a stroke doctor, I think you know people don't usually get to do this as a physician, but to, to meet so many different people with so many different stories, and a number of people who still had moderate to severe aphasia, and and were telling me about the impacts of that on their life. But we were still able to communicate a year after stroke, and so I think it is so important that we don't exclude people with cognitive and communication difficulties. We have to adapt the things that we have to make it work for them. What I'd love is to be able to have some kind of focus group with people with aphasia, and, and show them Take Charge, and realize, oh, what can we do? How would this work better for you?

Katie Strong: I love that, and well. Well, and we haven't talked about the materials yet, but I do have to say they're so accessible, or they're very accessible from a visual standpoint as well.

Vivian Fu: Thank you. Yes, we are actually modifying them and making the font bigger and having better graphics. We started off with stick figures that Harry drew, and then I think we're actually making them a lot nicer in terms of the graphics, but what we do have at the moment is actually available online for free, and you can just download them as a package. It's if you Google it, it's the Medical Research Institute of New Zealand, or www.mrinz.ac.nz and then under programs, and we spell that as p r o g r a m m e s, and then under programs slash forward slash stroke, I think is where it lives, and at the bottom of the page you should be able to download, a training package and the booklet itself.

Katie Strong: Yes, lovely, and we'll have the links on our show notes as well, so you can check those out, listeners, if you're interested. So, thank you. You have two randomized controlled trials that you've talked a little bit about, and a cost effectiveness analysis and qualitative work, all pointing in the same direction that the cost data suggests that Take Charge actually might save money, and that is remarkable, and lots of evidence showing that, but still, it's a challenge in implementing into standard practice, and I was curious if you could talk with us about what you think stands between what the evidence shows and what actually gets implemented.

Vivian Fu: Sure, gosh, I love this question. It's it applies for so many interventions, I think, specifically for Take Charge, it's a number of things. So definitely the stuff that affects other interventions being implemented, but for Take Charge itself, it started off with a huge amount of disbelief bias, so people, you know, even after I presented the main results of the second trial at the European Stroke Conference in gosh, when was that? 2019 pre-COVID in Milan. So this is a huge international stroke conference, and this was a plenary session. People stood up and took photos of the results and went, you know, there was this collective gasp throughout the audience of 6000 odd people, but there's just this disbelief that something as simple as a conversation can make a difference to people's objective quality quantitative outcomes, like the, you know, Bartel or the FIM, what they, you know, what their physical outcomes are like at a year. And what their quality of life is like. I think for people who are stroke researchers, a lot of the focus is on that initial 24 to 48 hours after stroke. And you know, that that's kind of where that's kind of where all the funding goes, isn't it? So it's the pre-hospital stuff, and then the interventional things you can stick catheters into and thrombolysis, and you know that's, and that's all great. You know, I, as a stroke physician, I love that part of stroke as well, but to think that you could possibly do something at three to 18 weeks after stroke that could change a person's outcome by a year, and actually we've got a long-term follow-up study now that says that those those same magnitude of changes are still present at five years between the groups is, you know, kind of gobsmacking. And people just go, surely you've fudged this, or surely this can't be true. And so there's this huge disbelief bias that stopped us from being able to publish initially, and it was only after I presented the results in Milan that that we got accepted into a journal. And we'd been trying for about a year beforehand, and, and so there's, there's that disbelief. But also in the way that it has to be provided, you know, it's probably considered quite labor intensive. You know, one on one home visits, and that's why people of other researchers who do believe in Take Charge are now looking at providing take charge in different ways. Like I did a telehealth trial in Canada, in southern Alberta, when I was there as a fellow in Calgary, and there's potential other work that's being. Done in Australia with Take Charge, looking at providing it by computer avatars, by even maybe even AI, and maybe in a larger sort of telehealth format. And so you know other ways of doing it, but I think ultimately it's kind of cultural inertia, because you know, "We've never done this, this is not part of who we are. Why would we need to start something new?" There's probably kind of an established way of thinking about clinician and, and patient, rather than person with stroke, in still in how we practice, and this idea that the therapist and doctor are experts. And so I think it really challenges that dogma and challenges clinician's role, and therefore there's a resistance to accept that this is something that is useful and helpful, and actually doesn't, you know, you don't need to take it personally. You're still doing great work. Take Charge is just a tool that helps supplement everything else that's going on, and so there's a lack of time, and I think we also get quite, as practicing clinicians, we get quite tunnel visioned into this, you know, hamster wheel of go to work, treat all these people, go home. We just keep doing it. Hoping that things will get better for them, but, you know, we, it's only when we start looking at alternative interventions and alternative things that work and start trialing them and being open to that, that I think things will really start to change.

We've certainly had interest from random little parts around the world. I think it's been translated into Latvian. I've got people from Sweden who are interested. A little hospital in Germany, and then parts of it's been trialed in pilot studies in the UK. And Harry and I last year trained a whole bunch of occupational therapists in Hong Kong, so you know it is, it is kind of picking up, slowly but surely.

Katie Strong: Well to me, you know, most stroke survivors, or people with stroke, as you're referring to them, have chronic challenges, and so all of the early intervention, while important, doesn't necessarily help somebody navigate that longer term change. And so I love that this is just such an empowering way of putting that power back into the person's life, which it seems like it is showing up n in the results that you're sharing.

Vivian Fu: Oh, absolutely. I mean, if we think about it, if we just think about thrombectomy and thrombolysis, somewhere between five to 15% of all people with stroke are eligible, and then receive the treatment. That leaves what?, 85 to 95% of people who don't get to receive that. And even after they receive the treatment, there are consequences of stroke that are beyond the physical that don't you know don't have any other thing to address them apart from our routine care, so I completely agree with you.

Katie Strong: Well, thinking about what clinicians might be able to do tomorrow or you know, in the near future, for our speech-language pathologists or other practitioners who are listening today and are feeling the pull of this work, and you know, really encouraged by it, but are you know working in an embedded productivity driven impairment focused system, what's one thing that they could do differently in the very next clinical encounter that they have?

Vivian Fu: We have a paper, I think it's written. Oh gosh, where did it.. where did it get published? I think it was published in Practical Neurology. It's titled something, something intrinsic motivation. I should know better.

Katie Strong: I'm going find out, and I don't think I read that one, so I'm gonna find it, and I'll put the link in the show notes for everybody.

Vivian Fu: Sorry,Harry about the promo, but yeah, I'll send it to you, but essentially it's written to give some guidance on how you can embed Take Charge into your daily clinical practice. And it's written for neurologists, but honestly it applies to everybody. One of the key things is when you have that next encounter, obviously you know therapists do this a lot better than doctors do, but they ask a lot about, you know, what's outside of the person's life and what's important to them, but maybe move away just, you know, from the very practical questions like "How many steps do you have going in and out of your house?, and How do you hang up your washing?", or whatever, but it's, you know, really much less functional, but more, "Who are you? Tell me a bit more about yourself. What do you love doing? What gets you out of bed?" You know, if I might, the one that I like to use a lot on my ward rounds is, "If you weren't in this hospital bed right now, where would you rather be? What would you rather be doing?", and I do that on my rounds, and it's incredible, because you know, I'll hear all sorts of things, "I'll, you know, be on my boat fishing out on the lake", or I think this lady was like 84 or something. "I'll be with my girlfriends, we'll be having coffee at Tim Hortons", you know, and it's just, I don't know, it's something so unique to that person that I could never, you know, they're in their hospital pajamas with a whole bunch of stuff stuck to them, and I can't envisage them doing that, and yet I'm like, I want you to imagine yourself there. Where would you rather be? Okay, so everybody, that's our goal. It's not to get her home or to get her walking again. Our goal is to get her back in Tim Hortons with her eight friends, having coffee, like that is what this person loves to do. And I think that you know that inquiry, that it shows you care, it shows you see them as an individual, and I think it completely shifts your rehab focus, and then you can ask more questions about that, and they, you know, then you have this whole conversation about about what their life is like. And I think that part of being seen, even if it's only within 60 seconds, makes such a difference to that person. So that's one thing. The second thing I'd be, you know, doing is I'm trying to involve family as much as possible, as much as the person wants, and basically, just seeing them as an individual makes a huge difference already to the way you practice, that would be what I'd focus on.

Katie Strong: Agreed, agreed. Well, Vivian, is there something you wish people asked you about this work that they rarely do, something about Take Charge or stroke recovery more broadly that you think the field hasn't quite caught up to yet.

Vivian Fu: Oh gosh, this is a tricky one. I think one thing we ought to recognize is that everybody is doing the best that they can with what they have. And you know, we're not as clinicians on the ground on the front line, we're not involved with funding decisions, and what projects get funded and which ones don't. And there will be the ambitious amongst your listeners, who I really hope will be like, "Oh my gosh, I can apply for this little grant, and I'm going to pilot this, and I think we should give this a go with our people." and I think that is absolutely a great idea to have. And, and I would, myself and Harry will do everything that we possibly can to help support such projects from where we are.

I think the important thing to think about is that every little bit that you do makes a difference, and to not feel as though, because you know your funding runs out, or you don't get it, or the world is such a bleak place that you know it's not worth continuing to try. Because people with stroke who see you do this work, they will be grateful for it. And also the patient partners I've met that I've spoken with, and all of the people whom I've interviewed with the qualitative work, they're also happy to be part of something like this. And so even if it's a pilot project. Even if it's, you know, something that may not last, you'd be so surprised at how much momentum you can build with a movement of people who see the value in this and then take it further and further, And that's what I've been really impressed by, and kind of stunned by in all these different locations around the world who have contacted me. I've just been like, "Wow, can't believe [this]." There's this wonderful group in Hunter Medical Research Institute down in Australia, who basically took Take Charge back to their own unique Aboriginal community, the Gamilaroi peoples of that particular area of Australia. They have, like Canada and like the States, they have 1000s of tribes and lots of different groups that all speak completely different languages, but they took it to their local group, and they broke down, take charge into little bits, and then rebuilt it into an intervention that just works for them, and it's called "Yarning Up after Stroke", because what they do is they have a yarn. They yarn, and that's the way they tell their stories. It's yarning, and so you know, I just think it's incredible. Like, they got funding for it, they did it, and now it's an ongoing project that just keeps on in the community being provided to their people, and it's fantastic. So, I think it'll evolve. I love to see how it evolves, and I certainly don't think of, you know, this isn't the kind of intervention that we go around patenting and making a ton of money out of. It's the kind of intervention that everybody makes their own, and hopefully with a lot of input by people with stroke,

Katie Strong: I love it. Thank you. Thank you so much for being our guest today, and sharing about Take Charge, and your generosity in sharing about the intervention, and if people are interested in reaching out to contact you, so thank you so much, Vivian.

Vivian Fu: Thank you so much for having me. I hope I haven't spoken too long.

Katie Strong: Oh no, it's perfect.

Vivian Fu: I'm always happy to be contacted, and yeah, very happy to support anyone who'd like to explore this further.

Katie Strong: Thanks so much.

On behalf of Aphasia Access, thank you for listening. For references and resources mentioned in today's show, please see our show notes, available on our website at www.aphasiaaccess.org. There you can also become a member of our organization, browse our growing library of materials, and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at [email protected]. For Aphasia Access Conversations, here at Central Michigan University in the Strong Story Lab, I'm Katie Strong.

Dr. Fu's Email [email protected]

Resources and Readings

Fu, V. (2019). Taking Charge After Stroke: A novel, community-based intervention to improve the lives of people with stroke. https://www.semanticscholar.org/paper/Taking-Charge-After-Stroke:-A-novel,-intervention-Fu/3bc1dbb271f425c72e146510088856e3aad8683e

Fu, V., Fernando, K. M., Bright, F., Riley, J., McPherson, K., & McNaughton, H. (2025). Coming to my own wisdom: A qualitative study exploring the role of the Take Charge intervention in stroke recovery. Clinical Rehabilitation, 39(3), 377–387. https://doi.org/10.1177/02692155241310770

Fu, V., Weatherall, M., McPherson, K., Taylor, W., McRae, A., Thomson, T., Gommans, J., Green, G., Harwood, M., Ranta, A., Hanger, C., Riley, J., & McNaughton, H. (2020). Taking Charge after stroke: A randomized controlled trial of a person-centered, self-directed rehabilitation intervention. International Journal of Stroke, 15(9), 954–964. https://doi.org/10.1177/1747493020915144

Fu, V., Thompson, S., Kayes, N., & Bright, F. (2025). Supporting long-term meaningful outcomes in stroke rehabilitation. Current Neurology and Neuroscience Reports, 25, 17. https://doi.org/10.1007/s11910-025-01403-z

Harwood, M., Weatherall, M., Talemaitoga, A., Barber, P. A., Gommans, J., Taylor, W., McPherson, K., & McNaughton, H. (2011). Taking charge after stroke: Promoting self-directed rehabilitation to improve quality of life - a randomized controlled trial. Clinical Rehabilitation, 26(6), 493-501. https://doi.org/10.1177/0269215511426017

Te Ao, B., Harwood, M., Fu, V., Weatherall, M., McPherson, K., Taylor, W. J., McRae, A., Thomson, T., Gommans, J., Green, G., Ranta, A., Hanger, C., Riley, J., & McNaughton, H. (2022). Economic analysis of the 'Take Charge' intervention for people following stroke: Results from a randomised trial. Clinical Rehabilitation, 36(2), 240–250. https://doi.org/10.1177/02692155211040727

McNaughton, H., & Fu, V. (2023). Intrinsic motivation. Practical Neurology, 23(6), 489-492. https://pn.bmj.com/content/23/6/489

McNaughton, H., Gommans, J., McPherson, K., Harwood, M., & Fu, V. (2023). A cohesive, person-centric evidence-based model for successful rehabilitation after stroke and other disabling conditions. Clinical Rehabilitation, 37(7), 975-985. https://doi.org/10.1177/02692155221145433

Medical Research Institute of New Zealand. (n.d.). Take Charge rehabilitation resources. https://www.mrinz.ac.nz/take-charge-rehabilitation-resources

World Stroke Organization. (n.d.). Taking Charge after stroke: A person-centred approach to life after stroke [Webinar]. https://www.world-stroke.org/what-we-do/education-and-research/education/webinars/taking-charge-after-stroke-a-person-centred-approach-to-life-after-stroke

Episode: 140

RAISING PPA assessment and treatment from the Ground Up: In Conversation with Jeanne Gallée

In this episode you will discover:

· Assessment and Intervention Aren't Separate — Conversation itself can double as both. By listening closely and responding to what a client offers, in a "more art than science" way, clinicians gather meaningful data and provide support at the same time, rather than treating these as two distinct phases of care.

· Rigid Testing Can Erase the Person Behind the Diagnosis — Traditional standardized assessments often serve the goals of an institution or research protocol more than the person being assessed. Frameworks like RAISE and the PACT scale shift the focus toward strengths, natural conversation, and what someone can still do, rather than repeatedly measuring decline.

· PPA Needs Its Own Identity and Training Path — Because primary progressive aphasia sits uneasily between post-stroke aphasia care and traditional dementia care, clinicians often receive little formal training in it. A global survey found major gaps in education and confidence, underscoring the need for dedicated resources, like Dr. Gallée's PPA roadmap, built specifically for this population.

Do you ever wish you could step back in time and undo the missteps and errors of the past? What if you had the opportunity to build something from the ground up? Certainly, knowing what you know now, you could begin in a better place. But of course, there's always pitfalls with new beginnings, even with the knowledge of lessons from the past. You could, however, make a positive impact on that new beginning.

Welcome to the Aphasia Access Conversations podcast. I'm Jerry Hoepner, a professor from the University of Wisconsin Eau Claire, and co-facilitator of the Chippewa Valley Aphasia Camp, Blue Gold Brain Injury Group, Mayo Brain Injury Group, Young Persons Brain Injury Group, Brain In-Cog, and Thursday Night Poets. I'm also a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas about their aphasia care through a variety of educational resources.

I'm privileged to introduce today's guest, Dr. Jeanne Gallée, who is a clinical scientist in the Department of Medicine at the University of Washington. Dr. Gallée is a licensed speech language pathologist practicing in the greater Washington state area. She completed her Bachelor of Arts in Cognitive and Linguistic Sciences at Wellesley College in 2016 and Doctor of Philosophy at Harvard University in Speech and Hearing Bioscience and Technology in 2021. She has been recognized as a Distinguished Early Career Professional by ASHA and a Distinguished Scholar by the Tavistock Trust for Aphasia. Her work is dedicated to improving assessment practices and functional outcomes for individuals living with aphasia and neurodegenerative conditions.

Jerry Hoepner: Jeanne, it's really nice to see you again today, and to have this opportunity to have a conversation with you as a recent recipient of the Tavistock Scholar Program, and to talk about your work with individuals with primary progressive aphasia. So, thanks for being "on" today for the conversation.

Jeanne Gallée: Thank you so much for having me, Jerry. I'm really honored to be here.

Jerry Hoepner: Likewise, I'm really excited for this conversation, and as I just alluded to, I wanted to congratulate you on being awarded the first Tavistock Scholar with an emphasis doing work in primary progressive aphasia, and I thought maybe I could get your thoughts on being selected as a Tavistock Scholar.

Jeanne Gallée: Thank you. It feels honestly incredibly remarkable in the sense that I think it represents a shift in how we're thinking about the separate diagnoses of progressive aphasia versus an aphasia that's due to an acute injury. And I'm really honored to be a part of that. I think there have been many discussions growing over the years, and I think we're seeing that shift in how we do think about addressing assessment and intervention and general care for people across the aphasia continuum.

Jerry Hoepner: Agreed, I think there's been so much growth in the last five years in that area. I can remember at the outset of the pandemic, having discussions about "What do we do with people with primary progressive aphasia who were a part of our aphasia group? Should they be a part of our aphasia group? How do we pivot to that in an online context?" and it feels like we've come so far in our conversation about where primary progressive aphasia fits in in all of those different contexts.

Jeanne Gallée: Right, I entirely agree, and I think the journey of my own work has already evolved in so many ways that I couldn't have imagined, like you say, five years ago I completed my doctoral work March 2021 and just seeing the phenomenal amounts of change that have really taken place since then has been incredible, and I feel very lucky to be part of that momentum right now.

Jerry Hoepner: Absolutely, it's exciting to see these things move forward. And one of the differences that I see is primary progressive aphasia started out within the Life Participation Approach, just soundly from day one, as opposed to a lot of aphasia care, which has kind of evolved from this medical model, and how refreshing it is to see something built from the ground up. Done right, so to speak. I don't know if you have thoughts on that piece…

Jeanne Gallée: No, I do. I think that's a really interesting point. I think I might be part of the camp that at times feels like progressive conditions get a little bit lost in the rehabilitation space, but I think you're absolutely right. I think the absence of pharmacological treatment, or a cure that has long standing effects for these progressive conditions has made rehabilitation specialists much more attuned to focusing on quality of life, life participation, maintaining autonomy, and so forth. So, I think I forget that perspective sometimes. Perhaps from the space that I work in, I tend to be in a more interdisciplinary environment where I feel on the opposite end. I'm often asked for justification for providing these types of services, and that fits in nicely with our previous discussion on how we do see that differentiation and how people with aphasia due to a progressive condition may be siloed from people who have the more quote unquote traditional aphasia symptoms.

Jerry Hoepner: Yeah, that's a really good point. And you know, referring to those previous conversations we discussed that need for primary progressive aphasia to have a space of its own. It's tricky because it doesn't fit into post-stroke aphasia quite right, and it doesn't fit into the Alzheimer's and dementia world quite right. So, yeah, it's nice to see this developing in the Life Participation kind of context, really excited about Anna Volkmer's conference dedicated to primary progressive aphasia. Yeah, what an excellent point, that even though we feel like it's great to build it from the ground up, there's still people in that interdisciplinary context, who are very much looking at this, like,"Justify this. How is having conversations and doing activities with someone justifiable, as a, you know, as a skilled intervention?"

Jeanne Gallée: Right. I think a lot of it comes back to misunderstandings about the scope of our profession. So, coming from the speech language pathology standpoint, we may have a perspective that other providers may not. And it's interesting, particularly when that confusion or disconnect happens in conditions that are communication led, where we see the symptoms primarily touching upon our ability to interact verbally or non-verbally to communicate. And it's fascinating, and I think speaking to that silo, we see PPA having been a relatively new and still considered very rare condition, but there's so much overlap with other conditions, right, in the kinds of symptoms that we see and there's so much where, as any speech pathologist with experience in acquired neurogenic communication disorders, we can see that we can apply our skill set, but again, likely due to the terminal nature of the condition, we end up seeing providers taking it a different route, or saying either there's only the pharmacological route, or we just let it lie or let it be as is, which we wouldn't do with any other condition. We wouldn't say that for someone with ALS. We would want to provide them the supports, even if they're temporary, to improve quality of life. So, it is an interesting, almost cultural phenomenon as well. I think.

Jerry Hoepner: Yeah, that I think it's really fascinating, and I'm so glad you brought that up. It reminds me of kind of the phrase, the company we keep, right? It's easy to be amongst, you know, people who are in the [Life Participation Approach to Aphasia] LPPA world, who think the way that we think, and who do the way that we do. And I do a lot of work in the area of cognitive communication disorders with acquired brain injuries, and so forth, and there's been a remarkable shift in the last five years there as well towards a more Life Participation bio psychosocial approach, and some of the work that I've been passionate about for years has been more and more accepted. So you feel like when you're in that company of all of your people that everything's all good, but it also reminds me of something that my friend Natalie Douglas always says, which is that "We need to be out there amongst others who need to understand the importance of this kind of a perspective, and sharing that." And when you talked about those other professionals, I really didn't think about that until you said that. Right, really important to get them on the same page, and to help them understand why this is so important.

Jeanne Gallée: Right? And I think that's where the conference that you mentioned, the first PPA only conference that's taking place this summer in London, is so special because one of the reasons why we were so motivated to have this type of a conference is that there wasn't really the space at the typical aphasiology conferences, and then the larger neurology-based conferences, or more broadly dementia-based conferences, also didn't quite feel like a home. I think, especially their studies of quality of life, in particular, we're really not seen as rigorous in those contexts. So, this conference, what's nice is that we have that uniting force of everyone being focused on PPA, but it's super interdisciplinary, and that I think will really promote some fantastic conversations.

Jerry Hoepner: Wow, that's really encouraging and exciting to see that move forward. I'm not in the primary progressive aphasia world, although when we're at aphasia camp and things like that, certainly that's a part of my role. But as soon as I saw the call for papers come out, I'm, you know, texting and messaging all of my PPA folks to say, "Did you see this? This is great. Are you doing something?" It's very exciting. So, I'm excited to see where that moves in the future and to hear how things go this time around. That's great.

Jeanne Gallée: Likewise, I'm really excited, and I do really believe it will lead to a whole future cascade of collaboration.

Jerry Hoepner: Yeah, amazing. Well, before we delve into your amazing work, I've been reading your articles, and it's been just a pleasure to read it. I'm always impressed with how certain themes of importance can come across in different areas of our field, and it's been fun to see that. I wonder, because I'm looking at the list of collaborators, just some incredible collaborators on that list, in those papers, I'd love to hear a little bit about your mentorship, both in primary progressive aphasia and kind of thinking about the Life Participation quality of life kind of context as well.

Jeanne Gallée: Yeah, I think in hindsight my mentorship experience seems more linear than it did in the moment. And I think it goes back to my original journey in my doctoral program. The program I was in, the Speech and Hearing Bioscience and Technology program at Harvard was a little bit different from others, where we didn't apply to work with a specific mentor, but truly just to get into the program. And they encouraged a pretty extensive shopping period to work with a variety of mentors to get a feel for topic area, mentorship style, and so traditionally first year students didn't even have any experiences, they just focused on the very time-intensive and rigorous coursework. I came in and started my first experience with Evelina Fedorenko at Massachusetts Institute of Technology, who had worked with an undergrad. And that I think from the get-go gave me a very holistic view. I think, of the ways in which we could think about language, and in particular, the language network. So, there I was working on MRI studies of what activations do we see in the language network. In response to linguistic stimuli. And we were working with undergrads at MIT who were all healthy between the ages of 18 through 30, and I just felt at a certain point that I had this growing interest towards thinking about what happens when something goes wrong. So when it's atypical processing of language. I first thought I might be interested in pediatric population, so I was all over the place, but through the partnership that my program had with the MGH Institute of Health Professionals, I ended up having this amazing opportunity to be mentored by Evelina Federenko, as well as Sophia Vallila Rohter at the Institute of Health Professions, as well as the Frontotemporal Disorders Unit at Mass General Hospital, through my actual clinical training. So I had this quite hefty consortium of mentors, and I think that has its own set of challenges, right? It's a little bit less mentor-directed and more on the student to say, "This is exactly what I want to work on." But I think that allowed me to build a network of experiences and mentors, and that just has bled into every experience I've had since then.

I also think the pandemic, you brought that up before, had a huge role in this, and all of a sudden people were very, very open to virtual meetings and connections and wanted connection. I think everyone felt very stuck at home and wanted to find more people and to find meaning and Anna Volkmer and I had the opportunity to meet at the Academy of Aphasia in Macau in 2019. And honestly meeting her in our connection has been also one of those launching pads for me to really jump out into the world of international collaboration. So all that to say, I think a lot of chance encounters and just a lot of plunging into possible conversations head first has led to this phenomenal mentorship team. And a lot of people who I collaborate with now I see as my inadvertent mentors, and that includes Anna, that includes Maya Henry at UT Austin, Amy Mooney in Oregon, just people who have consistently volunteered their time to mentor me in ways in which I can only say I would have never expected. Jade Cartwright and I have had such a phenomenal collaboration over the past few years as well, where we just had the same interests, and Zoom allowing, we were able to build on those.

Jerry Hoepner: That's really an amazing answer to that question. I love the term inadvertent mentors, because I just think that those are the best mentors, where you're as much a mentor to them as they are to you. And it's just this really reciprocal relationship, but it's also built on this organic, like passion and interest for the same kinds of topics. Where it's not forced and that's a really nice kind of look back on your entire process. I was also struck by the term "mentor shopping", or "mentor shopping period", whatever. And I think that's really great that you had an opportunity for that not to be so mentor-led, and I mean it clearly shows through when you talk about your clinical experience and how that was connected to your research experience, and kind of all used to create this amalgamation of who you are. I mean, it's clear in talking with you, it's clear in reading your work that you have that strong, multi prong kind of basis. It's not just research, it's not just this specific area of research, it's really broad and the clinical connection is there, so that makes a lot of sense when I hear you talk about that, for sure.

Jeanne Gallée: Oh, thank you. Yeah, I think in hindsight, again, it seems more linear, and in the moment it sometimes felt a little wild, I will say, in terms of just wrangling what do I actually want to pursue, and how. And I'm still figuring that out. But I think this community of collaborators and mentors is truly what has kept me in the field and as well.

Jerry Hoepner: Yeah, I think when you can connect with other people who are passionate about the work that you're doing. I can't imagine sitting at alone in my office doing a project, and I mean it's just so much more fun when you're doing it with other people. And other people who can expand the way that you think, which I'm sure everyone that you've mentioned on that list really does, when you can say, "Well, I think we should do it this way" and someone says, "Have you thought about…" and it just completely wrecks your world in a good way, "Like, oh my gosh, I didn't think about that, that's so exciting!" and then you just get into this back and forth. Yeah, very fun to hear about that. And again, it clearly shows through in the work that you do.

In our previous conversations, you also mentioned this idea, and this again built on those clinical foundations that your initial mission was really to help develop interventions for people with primary progressive aphasia, and then you kind of got not off track, but inadvertently focused on working on assessments. You mentioned that there's just such a need, and this is so common in a lot of areas, but there's a need for more person-centered, ecologically valid strength-based assessment, and that the traditional measures just don't tell us enough. So, I'm really excited to talk about the work that you're doing on assessment, and how that brings us closer to what we need from an intervention standpoint, too.

Jeanne Gallée: Yeah, so that really is at the heart of what has been my experience. Also, right from the get-go, we started talking about the differences, or the possible differentiation that the field has historically taken in thinking about post-stroke aphasia versus primary progressive aphasia. One of my first real PPA projects in my doctoral work was meant to be a naming treatment study for people living with PPA, and one of the roadblocks I kept hitting was also my mentors and reviewers telling me that I was trying to add too many things. And in that process I realized I don't think just using something that exists for post-stroke aphasia is going to be the best way to address the patients I'm seeing right now. And it's not because there's something wrong with that treatment. That treatment was not designed for these individuals. And that led to many more rabbit holes, and you know me really just feeling this existential crisis of "Well, why are we working on the stimuli that we are, and why are we asking questions about these ones?" And I have so much respect for the assessments that exist, and the individuals behind them, and the time they invested in making them. I am also of the belief that we can move forward and improve our processes. There are certain assessments that may be widely used and have so much again power behind them. You know, we have best associated certain assessments with characterizing a diagnosis, but what I ended up seeing in my placements and throughout my clinical work is that many assessments serve more of a mission of an institution or a research protocol than the person being assessed. And in the face of a person with a terminal condition who is using their precious time to serve you in that space, I just think it's so much more important, or that much more important, to really consider what is most functional for them. What will serve them? And how we, how can we give back to that person? And again, part of that emotion, I think, comes from having worked in many research-centered spaces, where someone might not get intervention afterwards, or they might not understand why they are participating in up to five hours of assessment, and I think that's where that passion for focusing on reprioritizing the patient or the client really came from.

Jerry Hoepner: I think that attention to "what's in it for them", is really important and clearly based in kind of where your heart is at and where your clinical mindset is at. Because it's easy to go in and say, "Well, we need this data. We need all the data that we get." but to what end, right? Like, how is it going to help? And how is that going to give us any more information about how to help this person, then what they can't do, right? So, I appreciate that mindset a lot, you know. It makes me think, and this is a little off track, and we didn't talk about this question earlier, but what a shift it will be clinicians working with people with primary progressive aphasia, and how they'll be able to shift from using kind of the existing tools that were out there for other purposes to moving towards tools that are designed specifically for people with PPA, and maybe just a snapshot of your thoughts about that piece.

Jeanne Gallée: So I think it's really important to know where the field comes from, the work in which it was grounded in. So, I think it, it makes sense to talk about standardized assessment scores. It makes sense to talk about, you know, the specific assessments that can help us quickly differentiate presentations or needs, right? So, using the symptom-led approach, can we identify specific behaviors really quickly in a standardized way? I think the issue comes in when we stop being dynamic in how we use them. It's very easy to use an assessment in a way that feels rote. It feels just like a test, and it's like you said, "just collecting data for the purpose of collecting data." And lose that aspect of humanity. And maybe I'm putting words in other clinicians' mouths, but especially when a certain condition is rare, like PPA is. You may not have very much experience with seeing someone with PPA, or any type of progressive condition, and feel really stuck and needing to be in the motivation of being really professional, sticking to a certain set of tests. "This feels right." Right, this is what someone told me to do. I can fill this out, and there's something very potentially vulnerable or scary about just going with your gut in those moments. And what Anna Volkmer and I have spoken about so often is just the power of having a conversation with someone, and seeing what you can learn from that conversation, not only about the person themselves, but their communication behaviors. And how you can get so much from that conversation, including the trust and comfort of the client in front of you.

Jerry Hoepner: Absolutely, yeah. One of the things that I think about when you're talking about that is, in working with people with acquired brain injuries and traumatic brain injuries one of the things I've learned is they will tell you, or they will ask, right? They'll say, "What is this? "What kind of information is this giving you?" "Why do we have to do this stupid test?" And I think that's good. I think that's a mindset that we should have when we're thinking about all of the assessments that we do. Why are we doing this? Is this really necessary? And they're very willing to say, "If it's necessary, that's fine, I'll do it, but are you getting something from this that I'm not seeing?" Right, I love that question, and I think it speaks to what you just said, right? Like, there's so much information that we can gather from conversations, from our interactions with people, we should be thinking about getting that, and if we're doing something else, we should have a why directly following, yeah.

Jeanne Gallée: Yes, the why is so important, and you're right. Sometimes we do just need to get certain information. I think for me, one of the most striking moments early on in my training was having small talk. You know, just conversation with a person with semantic variant primary progressive aphasia, and thinking, "Wow, this all feels quite typical. I'm curious about why they're here? What their testing will look like…" and then moving on to the Boston Naming Test and immediately seeing the challenges that came. That dichotomy is really helpful to have in those moments, but again, there's the argument of why are we asking about the name abacus, right? Why are we using that right now, and how does that represent how someone is performing functionally in their everyday life?

Jerry Hoepner: Absolutely, yeah, totally. I agree. Can you share a little bit about the RAISE framework, which I really love, because it relates to the way that I think about assessment from the standpoint of counseling, like you build on relationships and connections. William Miller is famous for saying, "The last thing you should ever do at the beginning of a session is assessment." You're beginning of a relationship with someone, don't assess first thing. So, I love that piece, and then thinking about the pact, and I'll let you kind of expand those, but I'll let you unpack them – ha ha- but how that starts to move us towards intervention.

Jeanne Gallée: Right. So the RAISE assessment framework was really built out of those conversations, and I guess realizations on my own part about that discomfort with the really rigid end that assessment can…I'll restate that. The rigidity that assessment can have, so again speaking to really, really standardized sets and rigid protocols of specific measures that someone uses, and like you said, having the experience of multiple research participants, as well as patients, asking "Why are we doing this? I know I'm not good at this. Why are we doing it again and again?" And in those moments, not feeling like I had the power to really justify exactly why we were doing everything, apart from, "Oh, this is important for the research study." Which it was, but just feeling like there was that aspect of humanity that was missing, and coming up with my own toolkit in those moments to fill in those blanks. So right after the completion of my PhD, Anna Volkmar and I started speaking a lot more about the power of conversational assessment. And then that led into conversations where we worked with Anne Whitworth, Deborah Hersh, and Jade Cartwright, where again, through the power of Zoom across all times. I was pregnant with my first, and meeting everyone usually at midnight my time. I already was nocturnal at that point! Where we would just be discussing all of these issues, and what was amazing about this is that, particularly Anne and Deb come from more of the post-stroke aphasia world, and had these amazing principles grounded in those populations where Deborah Hersh had also really come forward with the concept of therapeutic assessment. So as you had said assessment and intervention shouldn't be separate, they belong together and coexist at all times if we're smart about it. And what we ended up doing, first informally and then formally through the more official Delphi process is coming up with a set of principles as a framework for assessment. So, to take a step away from, "Oh, it's just Lucy Goosey, we're having a conversation and chit chat." What we're actually promoting is a pretty structured set of principles to guide the ways in which we can cultivate assessment for individuals with PPA and their loved ones.

Jerry Hoepner: Yeah, absolutely. I was kind of scanning on my computer, I was trying to think of the name. I love this name of the article, where it says, 'Please don't assess me to death, or something like that.

Jeanne Gallée: Yes, yeah.

Jerry Hoepner: Yeah, and, and thinking about that whole entire process from beginning to end as a relationship, as you know, not discreetly assessment, not discreetly intervention, I think it's just really important. Can you talk a little bit about the PACT and kind of where that has moved things in terms of the assessment piece, but also kind of set a set up for intervention and what that looks like?

Jeanne Gallée: Great, so the PACT the Progressive Aphasia Communication Toolkit kit builds off of what we put forth with the RAISE assessment framework. So with RAISE we promote that the relationship might be temporary, it might be a single interaction, or it might be long term, and we cultivate that through conversation and then the PACT is a set of scales that leverages that conversation, we take that natural or as natural as can be interaction and use it to come up with a concrete framework of communication strengths. So that might all sound very esoteric. To make that more concrete, there are four scales to the PACT. They're all clinician ratings, where the clinician is asked to look at a pre-recorded conversation that would occur naturally in a clinical or research context, and then on a scale from four to zero, rate the person speaking's strengths. So within the domains of speech and voice, as well as language and social pragmatics, as well as discourse, and the point or the purpose of that was to really anchor a person's communicative ability in one of these more natural environments with a provider. We collect so much phenomenal qualitative data, but at times it can feel challenging to quantify it and the hope with the PACT is that we can quantify our very real, possibly subjective evaluation of a person's communication at a certain moment in time.

Jerry Hoepner: Yeah, and what I love about that, and you might have a slightly different thought about this, because you're deeper into it, but from an assessment standpoint, you can then do that all the way through. You can say, "Here's where they are this year, here's where they are next year, here's where they are the year after that, or you know, two years ago, or whatever your lens is at that point." You can do that without kind of this constant repeating of, "Okay, let's see how bad you are today compared to a year ago, or compared to two years ago." Just a very different mindset. And I love the focus on "What can you still do? What what's working? And how can we leverage what's working to really help you to actually communicate today?" As opposed to saying, "Oh boy, the ship is sinking." which is kind of the typical approach.

Jeanne Gallée: Yes, that exactly what you're saying. The tendency tends to focus on what's no longer there. And while that might be helpful in clinical trials to characterize a person's performance diagnostically and the trajectory of a diagnosis over time. It really does not serve the person who goes home after the assessment, nor their loved ones to help them maintain that autonomy and quality of life, and also caregiver burden. And that is actually one of the points I really love about the PACT, is it builds on that RAISE aspect, that final tenant of evolution or adaptation over time. There's no repeat measure conflict here, where you know something might seem familiar. One of the unique parts of the PACT is that the clinician doesn't fill out the scale while they're talking to the person, they're really just recording them talking, so it is on the clinician side where, as often as they'd like to, they could implement the structured prompts of the PACT and then fill out the scale and see how performance might vary over time. They might see effects of context of the conversation, or the environment, or maybe the time of day, you know, phase of life, but it remains a way to use that really important information you gather through these conversations without recreating a testing environment frequently.

Jerry Hoepner: I really love that framework. I think there's a lot of room for that to be used in other contexts as well. I just think it's really a wise way of thinking about it. I also, you just mentioned caregivers and caregiver burden in this context, and how does that fit into this entire RAISE framework, the PACT, and so forth.

Jeanne Gallée: I think for both the RAISE assessment framework as well as the PACT the carers play an essential role in the sense that if they are available and present in the patient's life, then they are involved in the process. And so within the RAISE framework, the care partner is involved to provide feedback or to be given feedback, and in the PACT the same occurs, where if they are present at the time of the conversation, they are involved in the conversation. What I tend to do in the people I have piloted the PACT, I say come in as you would naturally, but then also take a step back. Let the person that with PPA that we're talking to take the lead, but I want you to interact as you would naturally. And then they're separately also asked to comment on the strengths that the person with PPA has. Their feedback is so integral because if they are present in a person's life, they play an essential role in promoting anything that we do work on in speech therapy.

Jerry Hoepner: Absolutely, yeah, really well said. And I wanted to dig in, partly because I have envy of this figure, the roadmap figure for PPA, and I think it really sets up well for as we think about professionals out there too, like what's the roadmap, not just for the person and their partner, but what's the roadmap for clinicians, future clinicians, all of that. Maybe you can talk a little bit about that figure.

Jeanne Gallée: I'd be delighted to. So, this was one of those, I would say classic for me moments where I had an idea and went to PowerPoint and started playing around with a visual of what I was thinking. The roadmap paper in no way is meant to be the only guide for how we can work with a person with PPA, but was really born out of discussions with Amy Mooney, as well as Zoe Ezzes, and Kristin Schafferr Mendez through the National Aphasia Association about the possible gaps in education or preparation a person might experience when first working with people living with PPA. There are so many ways in which we could say, "Oh, just work on this exact task. Work on these.." and that can feel so lost and unanchored, unmoored moreover. And I wanted to provide the clinical toolkit that I've been using to help me think about my broader approach. So to not get lost in the weeds, but just generally think about what's my purpose here, what's my journey, and so at the center of this road that I created is the tenant of providing that person-centered care, like we aim to with the RAISE assessment framework, so really bringing it back to establishing that honest and holistic and person-centered relationship with your client and their care partners. And focusing on creating a journey that's unique to the client that I think can feel hard when there are so many unknowns with a condition like PPA, where you're always working with an interdisciplinary team. Which you may or may not have contact with. So the first part of this roadmap is really defining your role. Who are you as a professional, and what kinds of support can you provide, and part of defining your own role includes defining your role relative to the rest of the interdisciplinary team. How can you provide a different approach from the neurologist or the neuropsychologist who play vital but very different roles in a person's care journey? Part of that definition also includes advocating across professions, so a classic conundrum that people with communication-led disorders face is that they may not have certain challenges in other domains, but their communication results in a domino effect of difficulties. And so, as the speech language pathologist, coming up with ways in which you can provide supports to other providers or your client to improve their communication can be essential for that comprehensive care. That might include coming up with a communication notebook that has a single page related to specific questions or common topics when talking to the neurologist or the physical therapist or other providers. And then part of this roadmap includes referring out. So having the humility and confidence to say I can't help with this in the ways that you may need. I will either refer you to a specialist within our field or outside of our field to help with these specific aspects, and I think that's just responsible care.

Jerry Hoepner: Absolutely. Really well described, and such a perfect. A segway to my next question. I always tell my students, assessment isn't just the first and last session that you're working with someone, and the same goes for intervention, right? It's not excluded from the beginning and the end, right? Like, you can't do intervention on day one, you can't do it on the last day, right? I think we kind of silo those things as well, you know, we assess and we intervene every day side by side. Can you share a little bit of your perspectives on this? And, and how that relates to kind of what we just talked about in terms of that roadmap?

Jeanne Gallée: Yeah, I think part of the challenge with some of these concepts is that it's very helpful to have experience in working with individuals, whether it is through formal speech therapy or elsewhere, to feel comfort with the unknown. Because a lot of it relies on your ability to listen and to respond to what you notice. You may inadvertently put in assessment by asking follow-up questions to a point a person made when you were talking about their commute. Ad you may offer different technological supports or just visual supports to your client in that conversation in a way to build up supports to see, "Oh, do we see a difference in how they're responding to what I'm saying? And how I provide support? Or when I dial it back, do we see a completely different direction?" So, it is this beautiful, possibly more art than science approach of responding to what a person is giving you. And there are so many individual differences in all of us. I always joke about how when I used to collect data on the picture description using both age match controls and people with PPA, I would almost burst out laughing when some of the controls provided responses, because I would get one to two sentences sometimes because see the difference in motivation. A person who does not have a communication concern, does not see the need to show exactly what they can do. And would benefit from some encouragement to show exactly how much they can say, whereas a person with PPA, who might have an Aphasia Quotient that recognizes their aphasia, might speak for five to 10 minutes to show exactly everything that they can accomplish. And so I think having that in your back pocket is really important when it comes to thinking about coming up with your recipe of all the ingredients of your assessment and intervention approach and counseling approach. So, I think that's where most of my work comes from, is that there is no one size fits all, but there are certain ingredients or components that we need to apply, and the exact ratios depend on the person you're working with.

Jerry Hoepner: That is such a good description of dynamic assessment and intervention and how that I agree, probably more art than science. And that's hard for people who want a black and white answer, like "Step one…" but it's so true, and, and being effective in working in this context, that really moves us nicely into a recent paper that you did, those global perspectives on the management of PPA, and I was struck by the numbers here. Only 40% of respondents said that they had received training in primary progressive aphasia at their university, and they identified all of these needs, right, like online instruction, sample tools, and activity dealing with end of life care and trainings for end of life care. When you mentioned counseling, that totally relates to what we're up against in terms of counseling, right? No one feels confident or has very good self efficacy. Tey don't know if what you know the lines are, what part is theirs and what part is someone else. And I think just really important to like I said, lay out a roadmap and help people to understand what we were just talking about in terms of that art and science of how do you navigate this space when it has to be individualized for every person, and that can feel uncomfortable for a lot of people. So, I'd love to hear more of your thoughts on that, and kind of what you learned from that context.

Jeanne Gallée: Yeah, so this research study. Was really an amazing endeavor on part of everyone who was involved. It felt like a grassroots effort to find the speech language pathologists around the world who aren't associated with a particular institution who do work with primary progressive aphasia. So of course it will never be a fully representative sample of every clinician who does so, but I do think we worked very hard to cast a wide net. So we used a snowball method. I contacted almost 40 institutions and governing bodies to find speech language pathologists who do have experience with PPA, because while more and more non-specialist providers will be seeing this patient population, we wanted to hear from the people who currently are in the field and creating their own expertise and toolkits to work with these individuals. So, what we found is that a lot of people are out on their own creating their own wheels, so to speak. And it just really led to that beautiful conclusion of now with the power of our globalization of education and sharing of resources, we can come up with a resource that's shared worldwide. Of course, there will be adaptations to fit different contexts, cultures, languages, but one of the issues has been that the systems of care for PPA have often relied upon very specific individuals. And that's reflected in the educational level. Even I was in the master's program between 2017 and 2019, I didn't hear about PPA formally in my coursework, and if it was mentioned we did not go into any of these aspects of specialized care. Part of that might have been because I didn't take very specific courses that then you know were optional or precluded, so I might have missed it, but I really didn't receive that education in the classroom. I received it through my clinical training, which I would argue is possibly even more valuable, right? You have that experiential training. But I think for clinicians who might want to transition in their careers, or you know, inadvertently in their place of work, are transitioning based on who shows up, that is a huge disservice.

Jerry Hoepner: Yeah, agreed. And it's a complex issue, right, because I can remember actually teaching about this back before Tom [Sather] was in my department. I taught the aphasia class and the acquired cog class, and I was thinking, like, where do I talk about primary progressive aphasia? Do I talk about that in acquired com? Do I talk about that in aphasia? Do I do it in both? Where do I talk about end of life care, and like, how does that fit in, because that's, you know, at that point I was teaching dysphasia, too. Believe it or not, and I'm like, it's kind of there, it's kind of here, it's kind of, it's kind of in counseling, it's all right. So that makes it tricky to have kind of a uniform message when it's all over the place. And love to just get your thoughts on that too. Like, where do you put that stuff? Like, it's it's PPA, it's end of life care, it's aphasia, it's right, it's counseling, it's so many things at once.

Jeanne Gallée: It is so many things at once, and I do think that speaks to the fact that it may well need its own class as part of progressive conditions.

Jerry Hoepner: Yeah.

Jeanne Gallée: But I do think a large part of what we share there is that understanding of we may also need to shift the identity of who we think about when we think about life care. And when we think about a progressive condition. Since a huge flavor, so to speak, of PPA is the fact that it is early onset, and especially with our cultural shifts, and you know, people starting families later in life. The face of a person with PPA looks very different from, at least in my childhood, of what looked like typical Alzheimer's disease dementia. And it's a younger, possibly more dynamic working person, possibly with little kids at home. And I think that's where that symptom-led approach has been most beneficial for my practice. Where we think about "What are you experiencing and how is it impacting your life?", rather than saying "This is the diagnosis, let's put you over here in this box."

Jerry Hoepner: Yeah, the idea of putting it in a box and siloing things really resonates in this context, and I love what you said about identity, right? The identity - what we all have in our mind's eye when we think about end of life care is not the typical person with primary progressive aphasia. Like I can remember as an elementary school student visiting the nursing homes and singing to the residents and things like that, and this was not, this was not the group of people that we were thinking about in that context. Very, very different, and I just think that's a really good mindset shift to recognize how actually broad that is. I'm sure there's people listening to this who work in, you know, end of life pediatric care who want to slap me in the face right now, but right, we have such a different mindset when we're thinking about end of life care, and that reset that you just made super important.

Jeanne Gallée: Yeah, yeah, and easier said than done, I think, As well as just seeing who shows up to the University of Washington support groups, and just the own perspectives that individuals bring there. But I think we can do it. I think, as a field, that will be the way in which we can become the best generalist provider, so to speak, where we take general principles of addressing symptoms or situations, and then apply those to diagnoses across the spectrum.

Jerry Hoepner: Absolutely, really well said, and a great place to kind of wrap up our questions, but I want to give you the opportunity, are there points that you want to share before we kind of close our conversation? Things that we missed.

Jeanne Gallée: I think the general thread throughout our conversation has just spoken to the power we do have as providers or researchers working with patients with primary progressive aphasia or related conditions, I think when we feel that our expertise in the newest theories or approaches might be lacking, we can always rely upon our empathy and full body listening, just to bring in elements that go across the lifespan, and that in of itself can lead to so many honest and transparent choices in our clinical care that can best serve our communities. I think we are much more empowered than we think we are.

Jerry Hoepner: Absolutely, that's a really important thread through many places where clinicians feel uncomfortable. They've got it there and they just have to gain that confidence, and being empowered to step into those moments. Well said. Well, Jeanne it's been just a really fun conversation. I'm sure we could talk all afternoon, but I look forward to catching up to you at future conferences and things like that. It's been my pleasure to have this conversation. So, thank you for being a part of it.

Jeanne Gallée: Right back at you, Jerry. Thank you so much. This has been a really fun conversation, and like you said, I hope to meet in person in the near future.

Jerry Hoepner: Agreed. On behalf of Aphasia Access, thank you for listening to this episode of the Aphasia Access Conversations Podcast. For more information on Aphasia Access, and to access our growing library of materials, please go to www.aphasiaaccess.org. If you have an idea for a future podcast series or topic, email us at info at aphasia access.org Thanks again for your ongoing support of Aphasia Access.

Resources and Readings

1) The RAISE Assessment Framework: Gallée, J., Cartwright, J., Volkmer, A., Whitworth, A., & Hersh, D. (2023). "Please Don't Assess Him to Destruction": The R.A.I.S.E. Assessment Framework for Primary Progressive Aphasia. American journal of speech-language pathology, 32(2), 391–410. https://doi.org/10.1044/2022_AJSLP-22-00122

Gallée, J., Volkmer, A., Whitworth, A., Hersh, D., & Cartwright, J. (2024). Applications of the R.A.I.S.E. Assessment Framework to Support the Process of Assessment in Primary Progressive Aphasia. American journal of speech-language pathology, 33(5), 2280–2290. https://doi.org/10.1044/2024_AJSLP-24-00085

2) A roadmap for clinicians just starting to work with PPA: Gallée, J. (2023). A Roadmap to enhance care for people living with primary progressive Aphasia: What Can Be Done Now?. Perspectives of the ASHA Special Interest Groups, 8(5), 847-862. https://doi.org/10.1044/2023_PERSP-23-0002

3) Aspects of language functioning in early and late-onset Alzheimer's disease dementia: Gallée, J., Gibbons, L. E., Choi, S. E., Lee, M., Scollard, P., Trittschuh, E. H., Mez, J., Saykin, A. J., Foldi, N. S., Mukherjee, S., & Crane, P. K. (2025). Facets of language performance in early-onset and late-onset Alzheimer's disease dementia. Alzheimer's & dementia : the journal of the Alzheimer's Association, 21(9), e70705. https://doi.org/10.1002/alz.70705

4) The Progressive Aphasia Communication Toolkit (in production at Alzheimer's & Dementia, but here is the preprint): Gallée, J., Cartwright, J., Henry, M. L., Mooney, A. R., Stark, B. C., Volkmer, A., Dietz, A., Nakano, C., Battista, P., Beales, A., Beber, B. C., Cadório, I., Caldwell, M., Davies, K., Ezzes, Z., Gauch, M., Graney, T., Grobler, S., Haley, K. L., Hausmann, A., … Crane, P. K. (2025). The Progressive Aphasia Communication Toolkit (PACT): A Strengths-Based Approach to Multidomain Evaluation for Intervention. medRxiv : the preprint server for health sciences, 2025.11.25.25340904. https://doi.org/10.64898/2025.11.25.25340904

5) A global survey on SLP perspectives on the management of PPA: Gallée, J., Cartwright, J., Grasso, S., Jokel, R., Lavoie, M., McGowan, E., Pozzebon, M., Beber, B. C., Duboisdindien, G., Montagut, N., Norvik, M., Sugimoto, T., Townsend, R., Unger, N., Winsnes, I. E., & Volkmer, A. (2024). Global perspectives on the management of primary progressive aphasia. Scientific reports, 14(1), 19712. https://doi.org/10.1038/s41598-024-70156-5

6) Aspects of language functioning in early and late-onset Alzheimer's disease dementia: Gallée, J., Gibbons, L. E., Choi, S. E., Lee, M., Scollard, P., Trittschuh, E. H., Mez, J., Saykin, A. J., Foldi, N. S., Mukherjee, S., & Crane, P. K. (2025). Facets of language performance in early-onset and late-onset Alzheimer's disease dementia. Alzheimer's & dementia : the journal of the Alzheimer's Association, 21(9), e70705. https://doi.org/10.1002/alz.70705

In this episode, Lyssa Rome speaks with Deena Schwen Blackett, an assistant professor at the University of Central Florida and director of the Communication, Aphasia Recovery, and Emotion (CARE) Lab, about behavioral activation as a psychosocial intervention for people with aphasia. Deena describes what the intervention looks like in practice — from daily activity tracking to values-based goal setting across five life areas — and shares early findings on reductions in depression symptoms. The conversation also explores how behavioral activation aligns with the Life Participation Approach to Aphasia, where it fits within SLP scope of practice, and what clinicians can do to actively support the emotional well-being of the people with aphasia in their care.

Episode 138

When One Plus One Equals Three:

A Conversation with National Aphasia Synergy

In this episode you will discover:

1. People with aphasia hold the map. At NAS, people with aphasia don't just have a seat at the table — they built the table. Real peer leadership changes everything about how an organization thinks and acts.

2. Recovery is about more than speech. The isolation and psychological distress that follow aphasia are just as real as the communication challenges — and just as deserving of attention and support.

3. Peer-befriending is life participation in action. When people with aphasia support one another through shared experience, that's not a supplement to good care — it is good care.

4. Sinergia: one plus one equals three. When survivors and professionals work as true equals, something greater emerges than either could create alone.

June is National Aphasia Awareness Month, and around here, that means it's time for one of my favorite podcast traditions. For the past few years running, we've spent this month in conversation with people who know aphasia from the inside — those living it every day. Today is no exception, and this one is a conversation I've genuinely been looking forward to.

Welcome to the Aphasia Access Conversations Podcast. I'm Katie Strong from Central Michigan University, where I lead the Strong Story Lab, and I'm a member of the Aphasia Access Podcast Working Group. Aphasia Access is dedicated to transforming services and environments so people with aphasia can participate more fully in life — and today's guests are living proof of exactly what that looks like.

Today I'm speaking with two leaders from National Aphasia Synergy — known as NAS — a peer-led nonprofit founded in 2021 by people with aphasia, for people with aphasia. NAS was built on the belief that those living with aphasia are best positioned to support others on the same journey. Through peer-befriending, technology empowerment, and community building, NAS works to end the isolation that so often follows a stroke — connecting people across the country through a shared sense of what they call Sinergia: the idea that when survivors and professionals work as true equals, one plus one equals three.

Today's conversation feels especially meaningful to me. I've had the privilege of seeing Trish and Amy in action at conferences like Aphasia Access and ASHA — learning from their presentations and watching their advocacy make ripples far beyond those conference walls. As someone who researches friendship and aphasia, I've followed the peer befriending movement closely — it began in the UK, and when I heard that NAS was bringing it to the United States, led by a peer organization, I thought: this is what life participation actually looks like.

Before we get into the conversation, let me tell you a bit more about our guests.

Trish Hambridge is the President and Founder of National Aphasia Synergy. Trish has lived with aphasia since her stroke in 2008, and that experience is the foundation of everything she has built. A former project manager for AppleCare, Trish has become not only a powerful advocate but a published researcher — partnering with research teams to influence the questions being asked and the evidence being built in our field. Her co-authored work spans game-based rehabilitation design, posttraumatic growth in aphasia, and the measurement of motivation and psychological needs in aphasia rehabilitation — all published in leading journals including the American Journal of Speech-Language Pathology. She has spoken at conferences including the Aphasia Access Leadership Summit, Aphasia Access Chautauqua and ASHA, serves on the Disability Advisory Committee in Dunedin, Florida, and is a member of Voices of Hope for Aphasia. Her vision brought NAS to life, and her leadership — in the clinic, in the research literature, and in the community — continues to shape it.

Amy Walters is the Vice President of National Aphasia Synergy. Amy has lived with aphasia since her stroke in 2018 — a stroke that, in a striking twist of fate, occurred while she was attending a neurosurgical conference. A Harvard graduate with a Master of Public Health from Johns Hopkins, Amy spent 30 years as a senior leader in the medical device industry before her stroke, and she has channeled that same expertise and drive into aphasia advocacy. She has presented at neurosurgical conferences to raise awareness, participates in aphasia groups across the country, and brings a remarkable combination of professional knowledge and lived experience to everything NAS does.

So — let's get into the conversation.

Katie Strong: Trish and Amy, welcome. I'm so excited to have you both here today and learn about what's going on in National Aphasia Synergy.

Trish Hambridge: Thank you for the chance to meet.

Amy Walters: We are so pleased to be here with the Aphasia Access Community.

Katie Strong: Well, we're delighted that you are sharing your time and expertise with us. I wanted to get started by asking about National Aphasia Synergy. How was it created? Just wondering if you could share the origin story of the organization and how that concept of synergy or working together defines your mission.

Trish Hambridge: Long time ago, I had a stroke, major stroke. But I was the same person then as I am now. I remember sitting on the hospital patio in San Jose and Karen, my good friend from college and speech therapist was there, and she was teaching everyone about aphasia. My friends and family were so patient. I remember my Dad talking to me and say, "You are stubborn." and I said, "Thank you!" Because that choice – being subborn - changed everything and gave me the chance to get my identity back.

Katie Strong: So, Trish, just to verify, you're saying your stubbornness got you where you are right now.

Trish Hambridge: Yes, but yes!

Katie Strong: Love it.

Trish Hambridge: Sorry to say, I have issues! But going back to the beginning, I had only had five words. Even my 'yes' and 'no' were flipped. Traditional homework is not my cup of tea. Shhh! Quiet, I'm lazy! I needed a better strategy, and I found it with P2Go. It's so much more than an app. It is the tool that gave me my voice back.

Katie Strong: I love that, so if I'm understanding correctly, traditional homework is not for you, and that you really needed something that was technology based, which goes back to your expertise in your life, career to be able to really help you communicate, and it was the P2Go.

Trish Hambridge: Yeah, yeah, is small, is so, is easy, my opinion.

Katie Strong: Well, that's what we're here for today, is your opinion.

Trish Hambridge: In 2016, a move to Dunedin, Florida changed everything. I joined Voices of Hope and finally found my community. Then the pandemic hit. But it couldn't stop our connection. We moved to Zoom. I want to be honest, though: some of my friends didn't make it through that storm. Their pain is part of this journey. We build this community in their honor.

Katie Strong: Oh, that's really touching, you know. It is. It's hard, so many friends don't stay in our lives for many reasons, but aphasia can really be a challenge for friends sticking around.

Trish Hambridge: Yeah, and the technology is not my cup of tea.

Katie Strong: Wonderful, wonderful. Thank you for sharing that.

Trish Hambridge: In 2021, I stepped up. I moved from a 'Lead Pathfinder' to the Founder of National Aphasia Synergy. I reached out to Debbie Yones, the big cheese of Voices of Hope. She and the Board Director gave me wise advice to help me grow. I didn't do it alone.

My sister and my sister-in-law helped me think through the logistics. They helped me build the support for the nonprofit. Because of them, my vision became a reality.

Katie Strong: So, your consultation with those important people to your life really helped National Aphasia Synergy become a reality.

Trish Hambridge: Yeah. Finally, I asked Amy to join the mission. She became part of the organization. Now, we are moving forward together.

Katie Strong: Thanks, Trish. I love that.

Amy Walters: Thanks, Trish. Nine years ago, I had my stroke at the neurosurgical conference. Ironic, right? Yeah, the conference was in Colorado Springs. I was in a medically induced coma for 10 days and diagnosed with Global Aphasia. Then I was airlifted to the Shepherd Center in Atlanta, Georgia, where I had a craniotomy and cranioplasty. On the flight I remembered thinking, "Am I in a simulator? What's happening to me?"

Katie Strong: Wow! That sounds surreal!

Amy Walters: My career was in clinical affairs for a medical neurosurgical device company, so I am professionally and personally familiar with neuroplasticity. I know how crucial neuroplasticity is to our physical, mental, and emotional recovery. National Aphasia Synergy was born from a deep need for collaborative survivor-led company.

Katie Strong: The advocacy you're doing is really amazing, and I'm so excited for our listeners to be able to hear more about it.

Amy Walters: Thank you. When we look at the aphasia community today, we see massive gaps. Most organizations are built for us, but they aren't led by us. The 'medical way' focuses only on the speech deficit, but it leaves a gaping hole in mental health, identity, and social connection. The research is heartbreaking: 40% to 60% of stroke survivors with aphasia experience chronic depression, and in early recovery, a staggering 93% experience high levels of psychological distress. This isn't just about the survivor—46% of our family members also face depression.

Our mission is to bridge those gaps. We aren't just here to 'fix' speech; we are here to empower the whole person. We call it Sinergia—the Greek word for Synergy. It means we don't work in silos. We don't have 'experts' on one side and 'patients' on the other. We have a partnership where 1 plus 1 equals 3.

Katie Strong: I love it!

Amy Walters: We are moving away from the isolated patient model and toward a Sinergia where survivors and professionals work as equals to reclaim our lives. We are here to educate and empower our peers to use technology to reclaim their voices. But more importantly, we are here to promote peer-befriending. We reach out to those who are new to this path or struggling to find their way, because no one should walk this road alone.

Katie Strong: I know, Amy, I just am so excited. I've been watching this peer befriending happen over in the UK, or reading about it, and hearing about it, and I was just so delighted when I heard that National Aphasia Synergy was taking this up and helping us to, to have a really solid connection. I think one of the things that breaks my heart the most is when I meet someone who has aphasia, who's been living with aphasia for a really long time, and they've never met anyone else who had aphasia.

Amy Walters: Heartbreaking.

Katie Strong: It really is. It really is.

Amy Walters: Our goal is to develop a national community that encourages optimism. We believe a positive outlook isn't just a 'nice feeling'—it is a strategy for recovery.

Katie Strong: Heck, yes!

Amy Walters: At NAS, we don't just look for what's lost; we build on the strengths that remain. There were gaps in the Aphasia Community.

Trish Hambridge: Speech Therapists and care partners are vital to recovery. They have good intentions, but the 'medical way' is often the wrong way.

Katie Strong: Yeah, yeah, it's not quite the right way.

Trish Hambridge: Many researchers only survey the Speech Therapists and the partners. But what about me? What about us? What am I, chopped liver? Think about the last time someone completely iced us out. It hurts, right? It honestly chips away at our sense of self, leaving us clueless as to where we actually fit in.

Katie Strong: Yeah, so Trish, just to recap this for the listeners, you're saying when somebody ices you out, you're asking the listeners to reflect on how that really feels,

Trish Hambridge: Yeah, I email [a researcher], and have offered [to be a part of their team] but they are like "Oh no, but sorry."

Katie Strong: I hear, I hear you. Yeah and I think what you're bringing up - and you and Amy are bringing up such a great point that as the aphasia research community has not always included people with aphasia. Or they're only including people with mild aphasia versus more severe types of aphasia, so I love that you're calling this out and shining light on it. It's, it's time.

Trish Hambridge Here's what the research tells us. Therapists and partners see the journey from the outside. But those of us living it? We know the honest truth.

Katie Strong: Yeah, yeah, so as the clinicians, the therapists, and the care partners see that journey from the outside, and you all are living it for sure.

Trish Hambridge: It is the 'Chicken and the Egg' problem: Does the partner change first? Or does the people with aphasia change? The answer is: The Environment. We must change the environment to find true recovery. We need to move from being 'patients' to being Lead Pathfinders.

Katie Strong: Yes, so I love it. You're, you're flipping the script there and reclaiming your identity, or renegotiating it from that patient role to being a lead pathfinder. I love that terminology. Thank you. Thank you. One of you said this earlier that organizations are for people with aphasia, but National Aphasia Synergy is led by people with aphasia. Why is this distinction critical for the community to understand, and how does it change the way an organization is run?

Amy Walters: Right, Katie. In the past, organizations were built for us, like a charity.

But National Aphasia Synergy is different. We are led by people with aphasia. We are moving from 'being helped' to leading. This is more than an organization. It is a revolution of identity. At National Aphasia Synergy, we are flipping the script on leadership. Our Board makes decisions with one clear priority: putting voices with aphasia at the forefront. That means leaders like Trish, Bruce, and me are the ones making the big calls.

We collaborate with wonderful professionals, like Kait, our SLP, Helen, our Financial and Secretarial support and Will Evans, our Volunteer Consultant. They are essential to our success. They ensure our communication is accessible and our business stays strong.

I always think of our board meetings being like a United Nations meeting with "international representatives" (i.e., China, France, Japan, etc.) each of us is coming to the table with a different lived experience, different aphasia types, etc. We work together to "translate" and work through our differing communication styles. But make no mistake: The people with aphasia are the primary drivers of the vision. The professionals provide the tools, but we hold the maps.

Katie Strong: Such a great analogy. I love it and it also sounds like your work is fun too.

Amy Walters: Driving you crazy, but you mean you mean you mean, yeah. Hold the phone!

Katie Strong: Oh, that's great. I love it. Well, what does National Aphasia Synergy offer that others should know about?

Trish Hambridge: Look at what we have built together: First, our Peer Befriending Program. A team of four SLPs and four people with aphasia worked as equals to create our training. Today, we have 15 volunteer Allies trained and ready to support the community.

Katie Strong: I love it. So, 15 people with aphasia, volunteer Allies, have been trained as peer befrienders to go out and connect with other people who newly have aphasia.

Trish Hambridge: Right, but anything like…

Katie Strong: Or rather, anybody who has aphasia that they're wanting to connect with.

Trish Hambridge: Come! Come! But we meet on Zoom.

Katie Strong: On Zoom, right? Yeah, absolutely. This is all virtual, which is amazing, you know, because you get a good reach, a really, a really great reach. What else is going on?

Amy Walters: Second, our Aphasia & Mental Health Video. We have four excellent SLPs sharing the research, stats, resources and the power of neuroplasticity. And we also surveyed 10 people with aphasia to capture the honest truth of our emotional journeys and provide 10 essential tips for recovery.

Trish Hambridge: I always start with a roadmap. But originally, we were filming something completely different. But three weeks before the shoot, I went to Debbie and asked: 'What do you think?' She said, 'There are enough basic videos out there... why doesn't NAS focus on Mental Health?'

Katie Strong: Yeah, okay. So, you were doing all this planning, and then three weeks before the shoot, you went and talked to Debbie and said, "What do you think?" And she said, "There's already enough videos out there on basic aphasia, but not on mental health. I love it!

Trish Hambridge: Yeah and so I agree!!! We agreed right away. We made a right turn... And changed the plan on the fly! I ran a preview for my friends at Voices of Hope. They loved it, but they asked the killer question: 'Where is the actual resource? Where do we go for help?'

Katie Strong: Trish, you are speaking to my heart here, and I know I'm one of those "outsider perspectives" as a clinician. But we just don't have great resources for mental health. It's really challenging. So, I love that your friends at Voices of Hope called you out on that. What happened after that?

Amy Walters: That was the lightbulb moment, right?

Trish Hambridge: Yeah, a video wasn't enough—we needed a map. So, we built the Aphasia and Mental Health Resources paper. The researchers and I had some serious back-and-forth debate, but that's how you get a solid plan. We ended up with something really cool: real tools for real people.

Katie Strong: Love, love it!

Trish Hambridge: Third, our Adaptive Growth Culture paper. This provides a brand-new map for recovery that the whole world can use to look past the 'broken parts.'

Katie Strong: Yeah, Trish, I've heard you speak on this. That talk you gave it, ASHA. I'm going to say listeners, particularly clinicians, you should check this out, because we need to get our clients with aphasia, our lead pathfinders with aphasia to be able to think in this sort of way, so yeah,

Trish Hambridge: But like I have like the speech therapist and the caregiver, and people with aphasia - it like, look right -- is the good plan.

Katie Strong: Love it, fantastic,

Amy Walters: Kait and I shared five powerful aphasia stories on video to show our diversity, our strength, our inhumanity, frankly. All of this lives on our National Synergy website. These aren't just projects, they are the proof that when people with aphasia lead, we create world that actually works for us.

Katie Strong: Oh, this is fantastic. And we'll have links to your website in the show notes, but you can certainly Google National Aphasia Synergy, and the website pops right up. I've been exploring it for a little bit, but I was looking at it again this morning, and there's just such great, great stuff on there. So please go and check it out. Well, I'm curious, Amy and Trish, what's on the horizon for National Aphasia Synergy, and how can our listeners, whether they're Aphasia Access members or people living with aphasia get involved or support your work.

Amy Walters: We are so proud of what we have built, but we are just getting started. This is our Call to Action.

Trish Hambridge: We want the world to get excited about Mental Health!

Katie Strong: And I think get excited about your Adaptive Growth Culture too.

Trish Hambridge: Yeah! We recently presented a poster at the Chautauqua virtual conference, and the feedback from Aphasia Access members was powerful. The keynote speaker, Dr. Nina Simmons-Mackie, spoke about moving from 'managing a condition' to 'owning a life.' That is exactly what we do! We focus on the strengths, the emotions, and the identity that the old medical model ignores.

Katie Strong: Yeah, so okay. So, Trish, you, you were, I think you presented you National Aphasia Synergy presented a poster at the Chautauqua, the Aphasia Access Chautauqua recently.

Trish Hambridge: First time presenting a poster!

Katie Strong: I love it, I love it. Yep, and the feedback that you got from the Chautauqua attendees was spectacular, right? And that's when, and, and, and Dr. Simmons-Mackie or Nina Simmons Mackey took that idea and we wove it into her keynote at the end, right, and talked about how it's important for us to support people and people with aphasia and care partners move from managing a condition to owning a life. I mean, that that's powerful stuff. I love it!

Trish Hambridge: I'm so honored.

Katie Strong: Well, you are out there making an impact.

Amy Walters: Thank you. We are building something historic, and we want you to be part of it. Here is how you can join the revolution:

Trish Hambridge: To the speech therapists and researchers, Help us build our evidence base. We want the test that adapted growth culture map to prove how it improves mental health and builds confidence. Don't just watch from the sidelines—come test this with us!

Soon, I'm taking the Adaptive Growth Culture to the global stage. I'll be at the International Aphasia Rehabilitation Conference in Athens.

Katie Strong: You'll be at the International Aphasia Rehabilitation Conference, or IARC, in…

Trish Hambridge: Athens!! I am presenting our Adaptive Growth Culture Poster to the top minds in the field.

Katie Strong: Fantastic.

Trish Hambridge: We have built the roadmap. Now, the researchers will provide the data-driven proof. It is time to see the Adaptive Growth Culture in action. We are moving from lived experience to clinical evidence.

Katie Strong: I love it, moving from lived experience to clinical evidence.

Amy Walters: That's right, that's right, Trish. If you run a community group, a local program, or a support network, we want to connect with you. Help us build this referral network so that no one is left behind in isolation. We aren't just looking for 'places to go' to pass the time. We are looking for places where we can belong and grow. We are looking for communities that see our potential, not just our deficits.

• To my peers with Aphasia: Your voice is our power. Share your story or send us a shout-out with your favorite tips and tricks. We also need Buddies for our Peer Befriending program. Help us show the world that we are truly 'owning our lives.'
• To the Volunteers: We are looking for passionate people to join our Board of Directors. We specifically need one more person with aphasia, as well as SLPs, care partners, and friends. The only requirement? You must believe in the Adaptive Growth Culture.

Whether you have the tools or you hold the map, there is a seat at the table for you. Visit us and let's grow together!

Katie Strong: Amazing. I hope that our listeners will take you up on the offers that you just laid out there, and that they'll also go out there and share with others that they need to hook everybody up with National Aphasia Synergy. It's a great organization. I enjoyed learning about it more today. And Amy and Trish, I so appreciate you both being here with us and sharing your stories and the amazing work that's going on in National Aphasia Synergy.

Trish Hambridge: Thank you. Aphasia Access is fantastic!

Katie Strong: I'm glad that you're enjoying Aphasia Access, too. It's a great network, and it's great that we're having lots of communities continue to grow and blossom to support people living successfully with aphasia.

Amy Walters: Hear, Hear!

Katie Strong: Thanks. You too.

Amy Walters: Thank you.

Katie Strong: Have fun in Greece.

Trish Hambridge: Yay!

Amy Walters: Jealous!

Katie Strong: Me too, me too.

Amy Walters: Bye, bye.

Trish Hambridge: See you. Bye.

On behalf of Aphasia Access, thank you for listening. For references and resources mentioned in today's show, please see our show notes, available on our website at www.aphasiaaccess.org. There you can also become a member of our organization, browse our growing library of materials, and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at [email protected]. For Aphasia Access Conversations, here at Central Michigan University in the Strong Story Lab, I'm Katie Strong.

Resources

Below is a list of links to the National Aphasia Synergy (NAS) resources and other organizations as discussed:

• NAS Website: https://nationalaphasiasynergy.org
• NAS email: [email protected]
• NAS Facebook page: https://www.facebook.com/WeRSynergy (to keep up with what's going on at NAS and for inspirational, adaptive growth mindset content)
• NAS YouTube Channel: https://www.youtube.com/@nationalaphasiasynergy1410 (to watch our Aphasia Stories series, learn about resources, and tune into our quarterly video newsletter, "The Synergy Turf" to hear real people with aphasia)
• NAS Adaptive Growth Culture paper: https://drive.google.com/file/d/1VIq0juI4FTPKqF0Cev8qZAI5I5po5ouO/view?usp=share_link
• NAS "You Have Options!" Paper: https://drive.google.com/file/d/1PBgvb1mDrjnFASaK_dpGL2gnZND_CjaU/view?usp=share_link
• NAS Aphasia & Mental Health video: https://www.youtube.com/watch?v=GThkxrKbQTI
• NAS Aphasia & Mental Health Resource paper: https://drive.google.com/file/d/1pXbFLtZJ8KZ9Pxpg3HVZHBEd_D7BnsED/view?usp=share_link
• NAS Aphasia Stories video series: https://youtube.com/playlist?list=PLk1GJP6QGrPDOapMhQlmAUBHfVb5-Mnfi&si=BIuoNmeu-TM-ab65NAS
• Peer Befriending: To get involved with NAS Peer Befriending, contact [email protected]

o Flyer: https://drive.google.com/file/d/1dCETc1pZck59mw6OgaEjZGnXWOcdSlCh/view?usp=sharing

o Video: https://youtu.be/0RNvCeh0BKM

Referenced resources and organizations:

• Proloquo2Go AAC App mentioned (what Trish uses): https://www.assistiveware.com/products/proloquo2go
• Voices of Hope for Aphasia: https://www.vohaphasia.org/

In this episode you will discover:

• Identity Is Shaped in Interaction — Narrative identity forms and reforms through relationships and stories shared with others — making connection a core ingredient of recovery, not a bonus
• Visual Methods Unlock What Words Cannot — Collage-making, photos, and art give people with aphasia a pathway into identity work that talk alone can't always reach.
• Identity Reconstruction Is a Long Game — People continue navigating complex, shifting identities for years after stroke. Our systems need to follow them farther into that journey, not stop too soon.
• Sit on Your Hands and Truly Listen — The most powerful thing you can offer is unhurried, attentive presence. Learning to wait and watch — rather than fill the silence — is a skill worth deliberately practicing.

If you've ever felt like there's more to aphasia care than the therapy protocol in front of you, or wondered what identity-centered practice actually looks like in the real world, this conversation will give you both the framework and the practical insights you need. Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Katie Strong from Central Michigan University and a member of the Aphasia Access Podcast Working Group — a community dedicated to supporting better aphasia care.

Rianne Brinkman is a speech-language pathologist and linguist from the Netherlands whose PhD project "Who Am I Now?" explores identity changes in people with aphasia through storytelling and creative arts-based approaches. Before her doctoral work — supported by the Dutch NWO Teacher Research Grant — she spent years as a clinician in rehabilitation and aphasia centers, and that deep clinical foundation shapes everything she brings to her research. She teaches in the Speech and Language Therapy program at Hanze University of Applied Sciences in Groningen and conducts her research at the University of Humanistic Studies in Utrecht.

Today's conversation feels especially personal to me. Like Rianne, I came to doctoral work after years of established clinical practice, and my own research centers on narrative identity and aphasia through the My Story Project and the PULSE framework. So, when she sought me out at a conference in 2019, I recognized immediately that we were kindred spirits working toward the same questions from different corners of the world.

So, let's get into the conversation.

Katie Strong: Well, before we dive into your work, I wanted to share something with our listeners. One of the things that drew me to this conversation is that we have a parallel story. We both came to do our PhDs after established clinical careers, and you're in the thick of that journey. I'd love to start with what made you decide to go back, and how did your clinical work shape what you wanted to pursue?

Rianne Brinkman: I used to work in rehabilitation for a long time, and then I moved from one part of the Netherlands to another part, and there was not much work for me. So, I got the opportunity to help establish an aphasia center. And of course, if you look at the rehabilitation phase, that's far more deficit oriented, so that's very different than in the chronic phase, where an aphasia center comes into place. So, I really had to change my view of therapy. I had to establish a few groups on identity. I started reading on identity, on communicative participation, on how to do that in groups. So that's really where the interest came from.

Katie Strong: I love hearing that. Sometimes as we go into a different phase or area of work, and it really re-shapes our thinking and how we engage with our clients or patients.

Rianne Brinkman: Yeah, it does. And in those groups, I worked together a lot with creative therapists, and I learned so much from them, because then I realized that if you use narrative approaches, and you combine them with visual arts or arts therapy, that it can mean so much for somebody. They can get so many more means of expression. So, yeah, I learned a lot from that.

Katie Strong: I love that! It is powerful. And I'm really looking forward to talking more about this. I was curious, you know, what the experience has been like from a clinician turned researcher, what you know, what's that actually been like for you? And has there been anything that surprised you most about the transition?

Rianne Brinkman: I did not realize that much how much you yourself as a person influences the conversation with somebody with aphasia, you know that co-construction part. So that your identity aspects really influence how the conversation takes place and what somebody chooses to tell you or not. So that is really momentary, and so it's just a snapshot, really, when you do this. So, I became really aware of that. But also, your own norms and values and the way you listen and all those sorts of things. It's just a different way of doing therapy. And then you're doing it as research which is different. I think that's one thing, sometimes I'm a little bit too much the therapist, so I really have to be a researcher again, you know? So, you change between those roles.

Katie Strong: Yes, it is a shift, right?

Rianne Brinkman: Yeah, exactly, exactly.

Katie Strong: Yeah. And thinking about how those two roles are different or powerful, sometimes combined. Well, let's talk a little bit about the work that you're doing. And I want to acknowledge that what we're talking about today really all comes out of your doctoral journey, which is really remarkable. I thought we could first talk about your 2025 scoping review that really mapped the landscape of what we know about identity changes in aphasia, and it also laid the groundwork for everything that followed. Could you walk us through that narrative identity model that came out of the review?

Rianne Brinkman: Yeah. That was quite complex, because there's so much written about identity, and everybody defines it slightly in a different way, or uses different words. So, what we tried to do is really get a grip on that literature to see what was written on identity changes in aphasia, and what kind of theory was used. And what we saw was that everything is from a social constructionist perspective, really. But then there are many different philosophers and different authors that write about identity. So, what we tried to do was because, of course, Barbara Shadden, she's very foundational in this work. With her colleagues, she created the four domain interdisciplinary framework. So, we tried to use that in the model as one of the foundations. And then, of course, the work of Paul Ricoeur, who's a French philosopher who writes about that you only shape your identity through interaction with other people which gives meaning to the stories you share with other people. And the work of Bamberg, and he talks about dilemmatic spaces. So what it means, really, is that I think identity, you only shape in interaction, and we tried to visualize that in the model. So, there's an "I" part, and that's about you, the personal domains, and there's the "we" part, and that's about the social domains. We tried to visualize how those domains interact, including temporality, because you shape your identity in the here and now, but also through time. And then in the middle of the model, there's a head with interconnected gears, and that's where it all comes together. That's you at your identity, your narrative identity, a specific point in time. So that's the model in a nutshell. And then you've got, of course, all those personal domains, like your biography, agency and power, communicative abilities, your roles you fulfill in life. And then the social domains are, like your social situation, your cultural background, society and all of that works together, informing, shaping your identity.

Katie Strong: It's powerful work, and it is complex. I appreciate the work that you led to be able to assimilate and give us this model for us to be really thinking about narrative identity in a way that takes all of those big thought leaders and helps it become more approachable to those of us that are interested in narrative identity as researchers, but also as clinicians.

Rianne Brinkman: That's great. Thank you.

Katie Strong: Thank you for that work. And then you have another recent paper. Congratulations, by the way! That paper just came out earlier this year in 2026 and I guess I should say to the listeners, we'll have both articles linked in the show notes, as well as some other resources that will be interesting to explore if you're into this topic. This 2026, article is really the first of its kind to look at identity in this early stage, six to eight weeks after admission to rehabilitation. So, I was hoping you could talk with us about who were these people and what were you doing together in these sessions?

Rianne Brinkman: Yeah. So, it's the first session of a longitudinal study, so I'm following those people over two years. And so, there are 22 people with aphasia. Unfortunately, two of them couldn't continue as one of them, I couldn't organize the reflection session, and one of them, I just couldn't reach anyone. But the other 20 people are still in the study, which is really amazing!

Katie Strong: That is really amazing!

Rianne Brinkman : Yeah, that's really nice. They're all middle aged people who range in age from their 30s to their 60s until 67. They also have different severities of aphasia. Some people were still clinical inpatient, some of them already were outpatient. And then I tried to elicit their story with visual participatory methods in combination with the narrative approach. So those sessions are quite long, sometimes two and a half to three hours, so it's a lot of time. It's really nice to just sit with them and connect. During the first session I did collage making. I just took a lot of magazines with me and scissors and glue and everything, and then we just sat down. And then I just let them start leafing through those magazines and see what appealed to them, what kind of images, what kind of words, what it's reflected about them. And then they created their collage. And then, of course, you look at what kind of images do they choose, but also, how do they position them? How do they create their collage. Is there some kind of reason behind things? You discuss that, but also how do they get across what they do? You know, some people think for a long time and are hesitant to act. Some people start straight away. Some people tear the images. Some people cut them really neatly. So, everybody behaves in a different way, and that reflects something on your identity also. So, I always ask questions about that. And then when we finish the work, a proxy comes in and we reflect on the work of the person with the face yet together to get perspective.

Katie Strong: That's really fantastic. So, you're, you're coming into either the hospital room or their home, is that where the work is done?

Rianne Brinkman: Yeah, so usually the speech therapist, who's in charge books a room for me in the rehabilitation center. Or I just go to the homes of the people.

Katie Strong: Well, I'm excited to talk about what you found out, but, but before we get into that, I just have to ask about the tattoo, because it's an integral part of this work. And it stopped me when I read it. And the title from the paper comes from the tattoo on one of your participants. So, could you talk to us about that?

Rianne Brinkman: Of course. There's one lady, and I was analyzing the session, because, of course, she will need to transcribe them. And then I saw her doing her hair in a ponytail, and I saw her arm, and I thought, "Oh, she's got a really nice tattoo there." So, I sent her a text, and I said, "What does that tattoo mean to you? What is it? "And then she told me that it was a tattoo that said, leave the thorn, enjoy the rose. And that's from a music play from Handel. And her father really enjoyed that. But her father passed away, so that tattoo was a memory tribute to her father, but also it reflects how she sees life, that you have to try to stay optimistic whatever happens. And I think that voice of positivity is a very important voice in all the stories of all the participants. Everybody said that. So, I thought, oh yeah. Even when something really bad happens, bad happens, people try to stay positive. So, it reflected a very important, yeah, result of the data, really. So, I thought, I'm going to make that the title.

Katie Strong: It really is beautiful. So, so the rose bush. You develop this beautiful rose bush image to represent what you found across the participants. Walk us through that. And what does the rose bush capture about what identity looks like at that early stage of recovery?

Rianne Brinkman: So, we used different methodology of analysis. So we listened to the voices that were reflected in the stories of people with aphasia, and then we realized that there are many contrapuntal voices, so it's very ambiguous. Really, very complex. So, we thought, we cannot just do a thematic analysis. We have to show that one experience can be both positive or negative or whatever. And that's why we came to those tensions and in that rose bush, so at the stem you see, for example, where you see the branches, and at the stem it's, for example, the tension between disconnection and connection. And connection is at the rose and disconnection at the stem, another tension is agency and disempowerment, and another one is living loss and personal growth. And then what we found was that people had coping voices and affirmative voices, but also challenging voices. And what we did was we put the challenging voices at the thorns and the coping and affirmative voices at the roses to reflect that they used that both to make sense of aphasia and of their identity, really. And so, they were moving along those branches, really. Sometimes they felt connected. Sometimes disconnected. Sometimes they grieved. Sometimes they cope by staying positive or focusing on the present. So that's how we tried to show that it's very complex that people move along those tensions, that it's never static. And those three existential tensions were really very tangible in the data.

Katie Strong: It's just such powerful work. When I was reading it and I. I was talking with one of my students, she was saying she actually became pretty emotional when she was reading about all of that as well. It's really, really powerful work. And what I find so interesting, and you mentioned it earlier, but this role of the visual methods, the collage making, images as a way into identity. Could you paint a picture of what that actually looked like to sit with a participant in those sessions?

Rianne Brinkman: Yeah. Well you really have to sit on your hands. And I learned a lot from my colleagues, creative therapists, because when I first did this…because sometimes people feel a bit awkward. You know that they all of a sudden have to draw something, or that they have to cut images from a magazine. And then you want to do something to help them feel less awkward. You shouldn't really. You should just let that happen and let that session develop. That's very important. So, I really learned to just tell them, "you are looking the magazines and you see what appeals to you. And I'll just give you some time to get into that" and then you just wait. And while you're waiting, you can just see, for example, if somebody finds it really hard, and then you can also see how long they look at an image, for example, if it means something to them. Or they stop on a certain page all the time. And then you can help them a little bit and say, "Oh, you're looking a long time at this image. Maybe, is this something that appeals to you for some reason?" And then you can help them. But also, very often, people just know what to do. I don't know. It's very intuitive. So first, they don't know what they will choose, or they don't know what kind of collage it will be. But it comes to them for some reason.

Katie Strong: Yeah, it's interesting. I think we had talked about this previously, but a person with aphasia and research collaborator that I worked with, Todd Berreth, and I did some, we called it. We the "cut-up" style using images to be able create a story about yourself and integrate those pieces. And it was so interesting to watch people who came to our workshop, and just as you're saying, like how they chose and what they did. Some people were very, "I know what I'm doing", and others were hesitant, or wanted to take their work home before finalizing it and everything in between.

Rianne Brinkman: Yeah, that's very that's very nice. You really get that extra layer, I think. And also, when people really can't talk very well, you know, they can maybe say yes or no and sometimes a word, you know, then it's very hard to talk about your identity. Using images then that really helps. So, I remember one lady, she couldn't talk very well, but she was very creative. And she started, you know, with those magazines, and then straight away, there was that butterfly symbolizing her mom, connection to her mother. And maybe, I think we would never have reached that trying to do this in words. So, yeah, very powerful.

Katie Strong: Thank you. Another thing I wanted to talk about is that you use something called the Listening Guide as part of your analysis. And I'm thinking that a lot of our listeners may not have come across this before. Could you give a sense of what it really means to listen in the way that that approach demands?

Rianne Brinkman: Yes. So, what you do is, first you well, you listen to the plot of the story. So, you listen to, what does this story contain? What's the big line of the story? And you write that down. And then you look again at the data, and then you look at all the "I" positions and I also look at the "me" positions. So, everything that's "I" and "me". You get that out and you create "I-poems". We created all those "I-poems" about certain experiences. I could give maybe an example of one. This one is a bit connected to, on the one hand, feeling very sad that somebody suffered from stroke and aphasia, and on the other hand, tried to stay positive. So, I've got one here.

I was crying last weekend. I realized, Oh no, this happened to me. I have to deal with this. I have changed. I also stayed positive that I will be okay. I just say it will be okay and I won't think negatively.

So, then you get an "I-poem" that reflects different voices, like, in this case, the voice of grief and positivity. Then you look at those voices. In the next step, you look at the contrapuntal voices, and like grief and positivity are very contrapuntal. So very often, I think also we as human beings do the same, you know, you talk to yourself in your head, you know. And you've got all those different positions towards an experience. And those are the contrapuntal voices. And what we tried to do, so we adapted this approach by Gilligan and Eddy, and we tried to incorporate the visuals, the visual data, and also embodiment, because sometimes people with aphasia do very interesting things. They give a lot of information, non-verbally. Also you want to be sure that you really understood the person, so checking if you're on the same page is very important also. Sometimes you have to interpret what somebody means, or you have to give words to what somebody says as a researcher, which is the ethical part, of course, which is hard sometimes, but you can't avoid that. So, yeah, so that's how we integrated all the data. And tried to get those stories out and get the depth of the depth of the story.

Katie Strong: I love it. That's really fascinating. And the "I-poems" are really powerful. And I think we'll put a link to the Listening Guide reference in the show notes if people are interested in learning more about that technique. You mentioned earlier that this is a longitudinal study that you're undertaking for your dissertation work, which is pretty amazing. I mean, very amazing. And you're, you're two years into this longitudinal study, and this paper we've been talking about is the six to eight week snapshot. What are you most curious about as you continue following those participants over time? And also, what do you want clinicians who are listening today to take away from what you've already found?

Rianne Brinkman: Tomorrow, I'm doing another two sessions. One of them is the last session with somebody with P5 and with another person, P4. I think I am about I'm halfway through. Well, I'm almost, I think I've got another year to go to have collected all the data. And what I see really is that it's very clear that identity formation and reconstructing, renegotiating your identity, is a very long and complex process, and that at different points in time, different things happen. You see different patterns also along those moments in time that I'm doing the sessions. What I also realize, I'm not sure how that is in states, but in the Netherlands, I think communicative access, for example, if you want to start working again, you know, to understand what all the letters you get the process, and that it's very hard. Also in health care. And people are really struggling with that, and get really a lot of stress from this, and that it's very unclear often, and that people feel very uncertain. And I think we've got to realize that we should take a longer role in this. You know, not stop too soon, or just at least keep, well, the finger on the pulse, like we say in Netherlands, just keep following people. I think that's very important. And I also realized that the combination of a narrative approach with visual participatory methods really gives you a lot of information. And I also think the listening skills, to really listen to that story and try to get that story out, that gives you such a powerful connection with somebody. So, every time I see them again, I'm really curious, and they're really happy to share their story again and to show me where they are at that point in time. Yeah, and then I'm working together with colleagues with aphasia also, which is really great because they learn from each other. You know, that's nice.

Katie Strong: I love all of that. And I think maybe one of the things I'd like to reiterate, or we could talk about a little bit more, is that what I think I hear you're saying is we know aphasia is a chronic change to their life and the way they communicate and how they can connect with others, and ultimately how that impacts who they are, as people, or their identity. And our health care systems, I know in the US, we're set up for lots of intervention, or maybe the most that they're going to get, even if it's just a little, early in that phase, and then having them have to navigate that process on their own, as they become farther from having the stroke. And this work showcases their journey along the way. But I just wonder is there something that a clinician who's listening could implement or do with their client, wherever they're seeing them, in the journey?

Rianne Brinkman: I think using creative arts is always a good idea. You could keep it really simple. You could just ask them to bring a special object or to show a photo that they're proud of, or make a collage, or use Legos to build with. So, I think that's a good possibility. And also, I think a peer contact is very important. So do that together with a little group or people that are interested in exploring and sharing their stories. And I think we should realize that it's important to check in. So even if you finish therapy with somebody, then it's a good thing after a few months, to ask how they how they are, and stand still with the process. That's something very important also.

Katie Strong: And sometimes harder to do than it would seem, but I think, as you're talking it seems like connecting people with peers and following up. I know here in the states, making sure they're a part of a support group so that they can have a community to be able to connect with.

Rianne Brinkman: Yes, because what I've seen a lot is that after a while, there's that phase of uncertainty, really. You don't know if you can get your work back, maybe in a different form, maybe not. And then there's no therapy anymore. And then how are you going to navigate all that uncertainty? And I think that usually speech therapy has stopped. I think then it's hard, of course, because it's not always doable, but I think it would be a very good moment. So, after eight months to really start up something again and then really discuss the identity of somebody. Really use narrative approaches to help them renegotiate all those dilemmas that they're experiencing.

Katie Strong: Yeah, and certainly, I guess you know, advocacy work on big levels to recognize that people should be able to access therapy whenever they feel like they need it.

Rianne Brinkman: Yeah, definitely.

Katie Strong: We've got some work to do. I appreciate this conversation, and I just wanted to let the listeners know that Rianne and I have been in conversation since we met at the International Aphasia Rehabilitation Conference in Philadelphia in 2019 and what started as a conversation in a parking lot I might add, has grown into some real research and educational collaboration. And Rianne, together with Sabine Corsten and Bianca Spelker, we have been developing and studying training programs for future SLPs in life storytelling approaches across three countries, so the US, Germany and the Netherlands and Rianne, I was hoping you could tell our listeners a bit about what we're actually building together and what you're learning from that work about what students need most before they walk into the room and try to do this identity centered practice, style of work.

Rianne Brinkman: Well, we based it a lot on your work, of course, and the My Story project and Narraktiv from Sabine. So, Katie you started this in the US, and then we thought, "oh, this would be great in the Netherlands and in Germany also." The students first of course, need to be trained in supportive communication techniques, because that's very important for them. I think in the Netherlands, it's maybe a little bit different than in the States and in Germany, because I work with students that are still in their bachelors. So they've had only one year of theory, and they haven't done their training or internship yet. Although some of them have. And then you see a very different student. So, but I've got the students that are really for the first time meeting someone with aphasia, for example. And they're very scared, because they think, "Oh, am I able to adapt my communication and what if somebody's going to cry, or what if that story is really going to touch me?" So, you really need to prepare them with a lot of information about what narrative identity is and also what identity work entails. We also must train on how you can really, truly listen. Active listening skills from that nice paper you wrote with Barbara Shadden on the power of story and taking the PULSE of people with aphasia. Appreciating their uniqueness, And also what we do in the Netherlands is practicing with them how they use visual methods, creative methods, to use in their sessions with the people with aphasia. And then once they start, I always say to them, "Well, at least the first session maybe is very exciting, but you're there, you're listening, you're engaged. That's already means so much to somebody if you do that, if you truly listen." And then after one session, they realize that, and then it goes really nicely.

Katie Strong: There's this that feeling very uncomfortable and not sure where to go. And then being able to let that person with aphasia kind of take you on that journey.

Rianne Brinkman: Yeah. That's so nice because it contributes to both, to the person with aphasia who participates, and also to the students and their development.

Katie Strong: I strongly believe you can't do identity, story based work without being influenced yourself, by the work

Rianne Brinkman: Yeah, definitely.

Katie Strong: Well, before we wrap up, I would be remiss if we didn't talk about some tips or strategies, resources or readings for clinicians who are interested in implementing identity, focused story work into their practice. So, can you share a few things with us?

Rianne Brinkman: Definitely. Yeah. When I started this work, I really liked the work of Carol Pound and her colleagues, and that's a book called Beyond Aphasia. It's very interesting theoretically, but also very practical. It really helped me to develop methods for my aphasia group to talk about identity. I really think that's a very good book. And then also the book of Barbara Shadden and her colleagues on Neurogenic Communication Disorders. There are some really practical cases in there, and it's very broad. It's not only about aphasia, but also a different neurogenic disorders. And I what I really like is it's such a nuanced theoretical perspective; they gather lots of theory, but they do that in such a good way. It's a very book.

Katie Strong: Yeah, I agree, both Carol Pound and Barbara Shadden's work. It's approachable, but it does have the meat of the theory in it.

Rianne Brinkman: Yeah. So that's helped me a lot. And what I said earlier, the paper you wrote with Barbara on the power of story, I think that's very helpful to better understand what happens when you use narrative interventions, and what kind of interventions there are. And then, of course, the different interventions, like the work of Sabine Corsten on Narraktiv in your work, on My Story. And I have a book but it's only in Dutch. I attempted to share all those methods I created for the group, and it's very practice based. So that's why I started later on my PhD. But those practice-based methods are combined in a book, but it's only in Dutch.

Katie Strong: It looks fabulous. I'm not able to access it with my limited language skills, but we'll make sure to have all of those references listed in the show notes so people can explore and take a look around it. And I think you know your book that you're talking about, Rianne even though it is all in Dutch, so maybe not accessible to everyone, but it's got beautiful graphics and photos and things like that you can get an essence of what it is that you're expressing.

Rianne Brinkman: It's all, it's all painted or drawn by Reno Hubers. He's a Dutch person with aphasia, and he was in one of my groups. And then every time I was reading about something, he was just drawing it or painting it. And I thought, "Oh, I really need to ask him help me make the images for this book." So, it was together with him that we created this.

Katie Strong: Beautiful. And what a great story. Thank you for being here with me today. And I don't know if you have anything else you want to add before we wrap up our conversation.

Rianne Brinkman: Well, thank you for inviting me. But also, I want to say thank you to my team, because they really stimulate me to think differently about identity. I've got a very interprofessional team, and that's really helpful. And also, of course, our identity group meetings with you and Sabine and Bianca and Barbara. That's very helpful to shape my thinking on identity. And, of course, the participants of my research who are so open and vulnerable and want to share their stories. I would like to acknowledge that that's very important.

Katie Strong: For sure! We sure appreciate you sharing your experiences with us and look forward to what's to come from the longitudinal study. We wish you well in your studies as well. Thanks Rianne.

What strikes me most about this conversation is how Rianne's work reminds us that identity reconstruction isn't a detour from aphasia care — it is aphasia care. And the tools she brings, the collage, the listening guide, the willingness to simply sit and wait, are more accessible than we might think.

What began as a chance conversation in a parking lot in Philadelphia in 2019 has grown into something neither of us anticipated. Rianne, together with colleagues Sabine Corsten and Bianca Spelker, and alongside my own work through the Strong Story Lab, we have been developing and studying training programs for future clinicians in life storytelling approaches — across the US, Germany, and the Netherlands. It is the kind of international collaboration that only happens when people are genuinely working toward the same thing.

On behalf of Aphasia Access, thank you for listening. For references and resources mentioned in today's show, please see our show notes, available on our website at www.aphasiaaccess.org. There you can also become a member of our organization, browse our growing library of materials, and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at [email protected]. For Aphasia Access Conversations, here at Central Michigan University in the Strong Story Lab, I'm Katie Strong.

Resources

Brinkman, R. (2018). Bouwen aan identiteit. behandeling van afasie – met 25 werkvormen [Building identity. Breindok. Treatment of aphasia – with 25 methods]. http://refhub.elsevier.com/S0021-9924(26)00012-2/sbref0006

Brinkman, R., Cardol, M., Neijenhuis, K., Luinge, M., & Leget, C. (2026). "Leave the thorn, enjoy the rose" identity formation of people with aphasia in the early rehabilitation phase. Journal of Communication Disorders, 120, 106627. https://doi.org/10.1016/j.jcomdis.2026.106627

Brinkman, R., Neijenhuis, K., Cardol, M., & Leget, C. (2024). Who am I now? A scoping review on identity changes in post-stroke aphasia. Disability and Rehabilitation, 47(5), 1081-1099. https://doi.org/10.1080/09638288.2024.2367606

Gilligan C., & Eddy J. (2017). Listening as a path to psychological discovery: An introduction to the Listening Guide. Perspectives on Medical Education, 6(2),76-81. https://doi.org/10.1007/S40037-017-0335-3

Pound, C., Parr, S., Lindsay, J., & Woolf, C. (2000). Beyond aphasia: Therapies for living with communication disability. Routledge. https://doi.org/10.4324/9781315169057

Shadden, B. B., Hagstrom, F., & Koski, P. R. (2008). Neurogenic communication disorders: Life stories and the narrative self. Plural Publishing. https://www.pluralpublishing.com/publications/neurogenic-communication-disorders-life-stories-and-the-narrative-self

Strong, K. A., & Shadden, B. B. (2020). The power of story in identity renegotiation: Clinical approaches to supporting persons living with aphasia. Perspectives of the ASHA Special Interest Groups, 5(2), 371-383. https://doi.org/10.1044/2019_PERSP-19-00145

Interviewer info

Lyssa Rome is a speech-language pathologist in the San Francisco Bay Area. She is on staff at the Aphasia Center of California, where she facilitates groups for people with aphasia and their care partners. She owns an LPAA-focused private practice and specializes in working with people with neurogenic communication disorders. She has worked in acute hospital, skilled nursing, and continuum of care settings. Prior to becoming an SLP, Lyssa was a public radio journalist, editor, and podcast producer. In this episode, Lyssa Rome interviews Jessica Obermeyer about group treatment for aphasia.

Guest info

Jessica Obermeyer, PhD, CCC-SLP, is an Assistant Professor in the Department of Communication Sciences and Disorders at the University of North Carolina at Greensboro. Her area of specialization is acquired adult neurogenic language disorders. Dr. Obermeyer's research interests include discourse production in aphasia, treatment efficacy, and the cognitive requirements of language production. Prior to earning her doctorate, she worked in a variety of clinical settings where she specialized in assessment and treatment of adult neurogenic populations.

Listener Take-aways In today's episode you will: ● Recognize the role of written communication in clients' daily activities, including texting, email, and online tasks. ● Adapt ARCS-W treatment components to match each client's preferred writing modality (handwriting vs. typing). ● Identify candidates with aphasia who are well-suited for discourse-level writing treatment.

Lyssa Rome Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Lyssa Rome. I'm a speech language pathologist on staff at the Aphasia Center of California, and I see clients with aphasia and other neurogenic communication disorders in my LPAA-focused private practice. I'm also a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources.

I'm today's host for an episode that will feature Dr. Jessica Obermeyer, who was selected as a 2024 Tavistock Trust for Aphasia, Distinguished Scholar, USA and Canada. Dr. Obermeyer is an assistant professor in the Department of Communication Sciences and Disorders at the University of North Carolina at Greensboro. Her area of specialization is acquired adult neurogenic language disorders. Dr Obermeyer's research interests include discourse production and aphasia treatment efficacy and the cognitive requirements of language production. Prior to earning her doctorate, she worked in a variety of clinical settings, where she specialized in assessment and treatment of adult neurogenic populations. Jessica Obermeyer, welcome to the podcast, and thanks for being here.

Jessica Obermeyer Thank you. It's a pleasure.

Lyssa Rome So I wanted to get started with a question we often ask, which is: How did you get into this? Was there an aha moment for you and what led you to research aphasia?

Jessica Obermeyer That's a great question. I think it was more of a slow awakening and journey to realizing that this is how I wanted to spend my days. When I started studying speech language pathology, I knew I wanted to work in adult rehab with people with traumatic brain injury, stroke, and aphasia. But as an undergraduate and a masters student, I worked on a lot of research related to traumatic brain injury and cognition. But then I had some exposure to aphasia research, and as a clinician, I just loved working with people that had aphasia. I loved running aphasia groups. I started aphasia groups, and when I decided to go back for my PhD, that is what I wanted to focus on. I also had the opportunity to work in adult outpatient, so I got to see a lot of people that had aphasia and were at different points in their rehabilitation journey. And those experiences just made me want to continue and especially do research that could develop and evaluate different treatment approaches for people that had aphasia.

Lyssa Rome One of the sort of through lines in your research has been discourse. And I'm curious about how you landed on that as the focus of your work, why discourse? Jessica Obermeyer It's how we talk. It was always, you know, something I was interested in. I think, as a clinician, I felt really daunted by discourse, because it is laborious, you know, it takes a lot of time to think about how you're going to analyze it. But I was always so fascinated by all the linguistic components that make up discourse as a clinician. And then I think as a researcher, I really appreciate how important it is. Everything we do in our day to day lives is often at a discourse level, and that looks so different depending on the type of discourse. So your text exchange is discourse, your emails, your conversations, the interaction with a barista. You know, every kind of functional way that we communicate is often at a discourse level. But it's so different depending on what that interaction looks like, and that's just endlessly fascinating to me as a researcher… challenging but fascinating.

Lyssa Rome Challenging both to evaluate and, I guess, to some extent, to treat. One of the things that I really appreciate is that it's how we communicate in our daily lives, and so if we're thinking about life participation and sort of functional approaches to treatment, to my mind, discourse is kind of where it's at. So I'm really excited to get to talk to you more about it. So speaking of discourse, I thought we could talk about your work on ARCS. Maybe we could start by telling us a little bit about the origins and how you became involved in researching.

Jessica Obermeyer Yes, I'd be happy to. I started doing research with ARCS as a doctoral student. So it's been a long time, but the origin of ARCS, or Attentive Reading with Constrained Summarization, started with Yvonne Rogalski and Lisa Edmonds, and they published the first paper, I think, in 2009, but someone should go back to check that, and it was originally for someone that had primary progressive aphasia. And then there was another paper published for two people with Wernicke's aphasia.

So in the original version, it's based on constrained summarization, and constrained only in that you're giving someone guidelines for how to summarize so they have to read through a segment of text. Usually it's a current event article, but clinically, you could use pretty much any written text. And I've actually done it with someone listening as well.

Typically with ARCS, you would have someone read a segment of written text and then summarize it with the constraint or guideline to be specific. So avoid words like it, stuff, thing, he, she. So use that really intentional word retrieval. That's not what we typically do. We often use non-specific words, but it's that therapeutic, like try to go for the really precise and specific word exercise that retrieval and to also stay on topic, so try not to add a tangent, or, you know, additional information that's not related to what you're reading. And then in my work, I've added an additional guideline that's just based on what that person needs. So if they're repeating a lot, then that might be part of the guideline. Often, the guideline is to try to include the essential information that you've identified already.

So that's the origin of ARCS. And as a doctoral student, I really wanted to do treatment research. I became really interested in cooperative learning theory, in how people can work together in their learning, collaborate to improve learning. And when I was doing that, reading and thinking about cooperative learning, writing seemed like such an excellent tool for that, because I think one of the hard things about spoken language is that it's just gone. You say it, it's gone. It's very hard to monitor, which I'm acutely aware of right now in this recording.

But with written text, you have this wonderful record of what you've produced, and that can be really helpful for thinking about language and planning, especially in an approach like ARCS or ARCS-W that emphasizes this planning, process-driven component, where you're thinking about, "What do I need to include in this discourse? What's important? What's not important? And what have I actually produced? Does that meet, you know, the guidelines I've tried to meet?" So that's how writing actually got pulled into it. And I wanted to keep the spoken language because, I don't know that I've ever met someone with aphasia who told me they didn't want to continue exercising their spoken language, but the writing was just I think, an important addition, because there are so few written discourse treatment options. And it allowed for this emphasis on monitoring and planning and some of the cognitive components of discourse that can be hard to address.

Lyssa Rome And maybe you could say a little bit about what you found when you've studied ARCS-W, so the Attentive Reading and Constrained Summarization-Written.

Jessica Obermeyer Well, people have improved, which is great. So the one of the things about ARCS and ARCS-W that's maybe unique when we think about aphasia treatment as a whole, is that it's not a treatment with trained items, so no items are repeated. You're working on the process of discourse production, this process of monitoring and trying to be specific, be efficient, you know. In written discourse, people have made improvements in correct information units or CIUs. So at the word level in discourse, the amount of informative and correct information that they're producing, people have made improvements at the utterance level, where they're producing more relevant utterances and more utterances that have a basic sentence structure, and then this hasn't been looked at in all of the studies, but for some of the participants, where we've measured things like main concepts, the amount that the person is conveying the main ideas or concepts in the discourse has improved for some people as well. And then at this spoken discourse.

So ARCS-W, it's half spoken, half written. Basically, people have also made similar improvements. So it's been encouraging so far, ARCS-W I would say, compared to ARCS is for people in the more mild aphasia end of the spectrum, especially with the writing component. Any clinician who's worked with people with aphasia will know that writing is often a stressful thing for people with aphasia. So it's for people that are writing at a phrase level already. It doesn't mean that their spelling is perfect, but if they're really struggling to get out a single word, this is probably not the ideal you know treatment for them, but for folks that are more on the mild end who want to work on spoken and written discourse, we have seen some positive results in their spoken and written discourse production.

Another thing that I think is really important for this treatment is that it is so multi-modality. When we write normally, we're reading as well. You know, we're not just writing in a vacuum. A lot of the time. We're rereading our text, we are reading that text message and then responding to it. So I like that. I like multi-modality treatments. I like that this is a treatment that allows people to address multiple types of language goals, while, you know, keeping it pretty simple and low tech. Lyssa Rome I think that that really hits on one of the reasons that I like using ARCS-W in my work with people is that It can be used with so many different kinds of texts. So I've used both, you know, work emails, if their goal is to get back to work, newspaper articles that interest them, simplified newspaper articles that interest there's so many possibilities. And anyway, it's exciting to hear you talk about that.

Jessica Obermeyer Yeah, I think that as a clinician, that's why I liked ARCS. It was so flexible, so easy to implement. And that's definitely one of the things I like about ARCS-W as well. Make treatment work hard for you.

Lyssa Rome So that is interesting to people as well. Where are you going next with your ARCS research?

Jessica Obermeyer Great question. I'm writing up results from about six people we ran over the last couple years, so that, I hope, gets submitted for publication soon. And I would really like to adapt this treatment a little further to use more assistive technology for folks that are really wanting to write, but aren't wedded to handwriting or typing in a traditional sense. So can we use speech-to-text? I always mix it up. And can we use methods to support people producing written language that are, you know, different than just typing it? Because people have really different needs in their life. So if that is a way to meet their writing needs, excellent, and I'd like to do that in the future.

Lyssa Rome I think that gets back to this idea that it's so flexible, right? You could adapt it in so many different ways. I think that that's really exciting, because it sort of further underscores the flexibility of this approach. And we were talking earlier, before we started recording, about using the same ARCS framework, or ARCS-W framework for material that clients have listened to, things like podcasts or TED Talks. So it seems like it's so adaptable, which is part of what I think makes it really exciting.

Jessica Obermeyer I think that's a great idea. We actually did use listening and then summarization for one of the participants in the first arc study, because that met their profile. That's how they wanted to interact with the treatment, and it worked out really well for them, and it's a great way to incorporate people's different interests. Not everyone wants to read, so being able to listen is a great option. And in the treatment for everybody, they always select their writing modality so they can either hand write or type, depending on what's relevant for them. In the population of people that have aphasia now, and I know that this will change over time, people have really different comfort levels with technology and with typing. So if someone says, "No, I never typed. I want to handwrite," then we can do that. And if, if it's the other, we can type. So I think listening is just another way to make it meet someone's needs better.

Lyssa Rome I was hoping that you could talk a little bit more about the similarities and differences between different types of discourse. So spoken and written discourse, typed and versus handwritten discourse. Tell us a little bit more about that. Jessica Obermeyer Yeah, of course. Well, I should, I guess, start off by saying, working on the ARCS-W treatment research, I recognized just how little information is out there on written discourse and the majority of discourse measures that we use in aphasiology are based on spoken discourse production. But there are differences in how we speak versus how we write. So in spoken language, we've already talked a little bit about this, it's temporal, it's just gone. So writing is tangible. You have a record of your writing, and that can be really beneficial for people with aphasia. But of course, there's there's other things that can make writing more challenging as well.

With spoken language, of course, we have the suprasegmental components of what we're saying. So we have our tone and our facial expression and things that allow us to impart meaning without actually saying it, and we don't have that in writing. Although things are shifting with text messaging technologies, we can add emojis and memes that help us communicate information. But I think when we're thinking about traditional writing, it doesn't have those additional components, and therefore people have to be more explicit with their word choice and a little more clear in what they're trying to say. People are often more efficient in writing. They use fewer words than they would in speaking. So those are some of the differences.

We can't automatically correct our written output because we see that our partner doesn't understand. Because in writing, there's this distance between when we're writing versus when we think someone's reading it. Even in more instant platforms like text messaging, we don't know exactly when someone's reading something or how their face looks when they read it, in the way we know with speaking. So those differences do impact how we complete the task. And of course, the context of writing changes it dramatically. So you write notes to yourself really differently than you write a research paper or a work email. And that's not so different from speaking, right? The context is still going to impact how we speak or write, very much.

So in my work, I've looked at how writing and typing are the same or different. And this is a pretty new area. There's a couple papers out there on it now, and I think it's gaining traction, which is great, because most people write through typing in their daily life now. What I found is that at a group level, it's pretty similar. Writing and typing look pretty similar for people that have aphasia. But individually it can be very different. So an individual person with aphasia might have a strength or weakness in handwriting versus typing for lots of different possible reasons, like their experience, or hemiparesis, their desire to do one or the other. But it's not, the patterns aren't completely clear. I think clinicians are probably really used to hearing that every individual with aphasia has the potential to be different. So I think that keeps with written and typed language output, handwritten and typed.

Some of my recent work has been related to looking at different writing modalities for people with aphasia. So are there differences in their handwritten versus typed discourse production. There's a couple papers out on this now, and hopefully there'll be even more as it gains traction. And I think it's getting more attention in the research literature because of how important writing is in our daily lives now. I mean, most activities of daily living are now completed through, you know, the virtual world, so banking, shopping, lots of messaging are completed through reading and writing now. So that's kind of why I became interested in also working with ARCS-W and having people handwrite versus type, depending on their interest and comfort level. It was always interesting to me why certain people picked one or the other, and kind of what I was seeing. There is some research out there that shows that handwriting is advantageous for learning. So the specificity of how we're moving our fingers to create letters is helpful for retention and learning items, but when we're thinking at the discourse level, when we're not using the same items necessarily, things could potentially be a little different. So I was interested in just exploring some of those differences and patterns that might emerge, and if there was anything I could figure out that might be driving a pattern. So if someone's better at typing than handwriting, is there a reason that they're better? So what I have found so far, and it's it's pretty preliminary, is that at the group level, handwriting and typing look very similar for people with aphasia, so oftentimes, there's not a big difference in the total words that they produce, and that's been confirmed by a larger study as well from Jaime Lee and colleagues. But then when we look at the individual level, that's when you can start to see differences. And I don't think any clinician would be surprised to hear that people with Aphasia are variable or different. So we know that that is common, but it's been pretty interesting and striking in my own work to see how at the group level, these differences just totally even out. But then when we look at individuals, you do see that, you know, someone is more proficient with typing, someone else is more proficient with handwriting.

So in a study I did, I think from 2024, we had people fill out this historical information about their typing experience and exposure, we knew about if they had a hemiparesis or not, and so were they able to use both hands or one hand for handwriting or typing? And like I said, we did find these individual differences for some people, but there wasn't a really clear pattern in what was driving those differences? Was it that they hadn't worked with a keyboard a lot? Was it that they only had the use of one hand? And we just didn't have enough data potentially to discern any specific patterns?

Lyssa Rome We've talked a little bit about different types of discourse, written, spoken for written, typed versus handwritten. But I wanted to kind of come back to how we measure and analyze discourse, and wanted to ask about a more recent paper and have you describe a little bit about your work on discourse measurement and training clinicians to measure discourse?

Jessica Obermeyer That paper is a perceptual rating paper. We've talked a lot about discourse in this chat, and I think probably one of the first things I might have mentioned was how daunting discourse analysis can be. So researchers are aware of that, and always kind of thinking that discourse is so rich, it provides us so much information about someone's linguistic ability, but also their success with communication in a way that other levels of language don't necessarily tell us. So how can we benefit from that rich information in a way that clinicians can do. Because with discourse analysis, you know, in the clinical session, it might not take that long. You're having someone participate in 10 minutes of conversation—that is not a lot of time in your session. The time is all backlogged. The time is after the session is over, and you're trying to transcribe what they've said and then identify discourse measures that you're interested in. And another thing that makes discourse just complex and dynamic is that there's not one measure, you know, there's not a measure of word retrieval and discourse. There are lots of measures that can give you insight into word retrieval and discourse.

So this project I did with my collaborator, Marion Lehman, who also works on discourse, and especially conversation. We wanted to see if it was possible to train people to rate conversation samples from people with aphasia on linguistic measures, so measures of language ability. So there are other perceptual rating scales, but a lot of them might be looking at speech acts like initiation or presence or absence of errors. And we were really interested in if these, if perceptual ratings, could map on to the things we're doing in our labs, so you know, correct information units or the degree of informativeness, utterances that have basic structure, coherence, you know, these measures that we are spending many hours, you know, coding line by line, or even word by word, for some.

So she and I developed this training and introduced—so the paper that's published, we used research assistants in our research labs, and we exposed them to the linguistic measures that we were interested in. Had them watch some practice videos, and then told them how we had coded them. So what was the value based on our lab coding? And then we did five test samples, so there were four linguistic measures. The training lasted about three hours, and I did five test samples. And we got some really good feedback from the RAs who did the training and rating samples.

We had some promising results for especially two of the measures that we used in their training, and now we're really interested in extending that work with clinicians. So the people that were in the study before had very limited experience listening to people that had aphasia. They hadn't worked with people that had aphasia, they hadn't done extensive clinical training. We're hopeful that if we can use their feedback to fine tune the training and rating procedures and recruit some clinicians to participate, that hopefully we could get even better results and hopefully provide a tool to clinicians where they can be thinking about linguistic components of conversation in a way that's more feasible to their schedule and their workload, because we recognize how much time it takes. And I think it's, it's just a barrier to entry, even, because if someone is feeling like, "I can't do this, I don't have time to do this," then it's hard to even learn about or get started.

Lyssa Rome Yeah, I'm so happy to hear that you're that you're focused on the feasibility for clinicians who have productivity requirements, who don't necessarily have a lot of time at the end of the day to do that kind of really in depth analysis. I think it's exciting.

Jessica Obermeyer Oh, for sure, and clinicians, I think, work a lot of extra hours, but they have a whole caseload, you know, so balancing everybody's needs and being able to to provide excellent care to everybody is, is always a challenge, and hopefully, hopefully we'll, we'll be able to continue this work. We're trying to get some funding for the project because we want to be able to pay SLPs who participate in the research.

Lyssa Rome As we start to wrap up, I'm wondering what you would like clinicians who are listening to this podcast to take away from what we've talked about today, from your work. Jessica Obermeyer I think one takeaway would be for clinicians to think about incorporating handwriting and typing into their existing treatment practice. So I've talked a lot about ARCS-W. ARCS-W is not for everybody. It is a very specific treatment approach for people that have mild aphasia who want to work on discourse-level writing. But there are so many ways to have people engage with handwriting and typing that will serve them in their daily life.

So we've talked a lot about how literacy is just such a big—it's a bigger part of our lives than it was 20 years ago. People can achieve a lot of independence and autonomy if they're able to interact with reading and writing and complete it successfully. So I would really encourage clinicians to think about how they can incorporate reading and writing into their existing treatment. A study I was involved with— Liz Madden surveyed SLPs on their practices assessing and treating reading and writing, and one of the take-homes from that project was that clinicians evaluate writing more than treating it. And especially handwriting, versus typing. But I think that given the way society is moving, asking people like, "What's important for you, handwriting or typing?" and let's make that our practice.

Lyssa Rome I appreciate how person centered and flexible that advice is right. We're trying to meet people where they're at and recognizing that our treatment can be tailored to the person who's sitting in front of us. I'm curious to hear what is coming next for you. What are you excited about in your work?

Jessica Obermeyer That's actually a great segue about how we can tailor treatment, because that is one of the projects that I'm working on now, how we can think about treatment in terms of what are the things that make it work, versus things that maybe aren't essential components of the treatment? With the last study I did with ARCS-W of the things that we were really trying to understand better was: Did it matter if people hand wrote or typed? Did they have the same kind of level of generalization to the other writing modality? And in that study, it doesn't seem that they did. And I think there's really specific reasons for that, because we're working at this discourse level without repeated items. And so you might not see the same impact of that handwriting learning boost, because we're not repeating things as often.

That's one of my real interests is thinking about how we work on treatment, how we deliver treatment, how clinicians can deliver treatment. Because I am very guilty of this. Working on writing takes a long time. It takes a long time for people with aphasia to produce written discourse level text. So in the ARCS W studies, it's an hour-and-a-half treatment session where we only work on ARCS-W. But I know I recognize that that's like not most clinicians' daily life, and it doesn't mirror what therapy many people with aphasia receive. So thinking about treatment in a more component-based and mechanistic way that makes it easier for clinicians to adapt to their their practice is is one of the things I would like to flesh out in the future. And then continuing to work on this training and perceptual rating protocol. One of the things my colleagues and I would like to do is create a training that can be shared freely, where clinicians can easily get access to it, and then collect more robust data. I mean, only if we get good results, of course. If we don't, we will not be sharing it. But those are the big things I'm thinking about in the next couple of years, and then beyond that, even more.

Lyssa Rome Well, I look forward to reading more of your work and to seeing what comes next as well. Dr. Jessica Obermeyer, thanks so much for talking with us. I really appreciate it.

Jessica Obermeyer It's been a pleasure. Thank you.

Lyssa Rome And thanks also to our listeners for the references and resources mentioned in today's show. Please see our show notes. They're available on our website, www.aphasiaaccess.org. There, you can also become a member of our organization, browse our growing library of materials and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at [email protected]. Thanks again for your ongoing support of Aphasia Access. For Aphasia Access Conversations, I'm Lyssa Rome.

Resources Obermeyer, J. (2024). Using and modifying standardized restorative treatments in aphasia: Clinician perspectives. American Journal of Speech‑Language Pathology. Advance online publication. https://doi.org/10.1044/2024_AJSLP-23-00349

Obermeyer, J., Leaman, M., & Oleson, J. (2025). Feasibility and preliminary data for a training protocol and perceptual rating scale of linguistic conversation measures in aphasia. American Journal of Speech‑Language Pathology. Advance online publication. https://doi.org/10.1044/2025_AJSLP-24-00420

Obermeyer, J. A., Rogalski, Y., & Edmonds, L. A. (2021). Attentive reading with constrained summarization-written, a multi-modality discourse-level treatment for mild aphasia. Aphasiology, 35(1), 100-125.

Obermeyer, J. A., & Edmonds, L. A. (2018). Attentive reading with constrained summarization adapted to address written discourse in people with mild aphasia. American Journal of Speech‑Language Pathology, 27(1S), 392–405. https://doi.org/10.1044/2017_AJSLP-16-0200

Obermeyer, J. A., Leaman, M. C., & Edmonds, L. A. (2020). Evaluating change in the conversation of a person with mild aphasia after Attentive Reading with Constrained Summarization–Written treatment. American Journal of Speech‑Language Pathology, 29(3), 1618–1628. https://doi.org/10.1044/2020_AJSLP-19-00078

Obermeyer, J., Edmonds, L., & Morgan, J. (2024). Handwritten and typed discourse in people with aphasia: Reference data for sequential picture description and comparison of performance across modality. American Journal of Speech-Language Pathology, 33(6S), 3170-3185

This episode features Mark Harder, an individual with aphasia who has developed numerous programs to engage individuals with aphasia in returning to meaningful life activities. Mark shared his personal experience with aphasia following a stroke and heart attack, discussing his recovery journey and the role of poetry in his healing process. He described his involvement in various aphasia support initiatives, including poetry groups, conferences, and advocacy work. Mark's efforts to raise awareness and support others with aphasia have led to the creation of multiple programs and events, demonstrating his commitment to the aphasia community.

Lyssa Rome talks with Dr. Mackenzie Fama about the experience of inner speech for people with aphasia.

In this episode you will discover:

• Diversity Means Everyone - Race is just one piece. Consider how age, language, immigration status, religion, sexual orientation, and geography intersect to shape each person's experience with aphasia.
• Go Into the Community to Build Trust - Sustainable partnerships require leaving your institution and showing up consistently. Visit centers, share meals, and invest time where people gather. Trust develops gradually through authentic presence.
• Listen to Real-Life Struggles First - Before starting therapy protocols, hear what families actually face: shifted gender roles, children as language brokers, lack of community aphasia awareness, and disrupted family dynamics.
• Train Future Clinicians Differently - If you're building or revising academic programs, front-load diversity with a foundational intersectionality course in semester one, then integrate these principles across every subsequent course and clinical practicum.

If you've ever wondered how to better support multilingual families navigating aphasia, or felt uncertain about cultural considerations in your practice, this conversation will give you both the framework and the practical insights you need. Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Katie Strong, a faculty member at Central Michigan University where I lead the Strong Story Lab, and I'm a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources.

I'm today's host for an episode that tackles one of the most important conversations happening in our field right now - how do we truly serve the increasingly diverse communities that need aphasia care? We're featuring Dr. Jose Centeno, whose work is reshaping how we think about equity, social justice, and what it really means to expand our diversity umbrella. Dr. Centeno isn't just talking about these issues from an ivory tower - he's in the trenches, working directly with communities and training the next generation of clinicians to do better. Before we get into the conversation, let me tell you a bit more about our guest.

Dr. Jose Centeno is Professor in the Speech-Language Pathology Program at Rutgers University. What makes his work unique is how he bridges the worlds of clinical practice and research, focusing on an often overlooked intersection: what happens when stroke survivors who speak multiple languages need aphasia care?

Dr. Centeno is currently exploring a critical question - what barriers do Latinx families face when caring for loved ones with post-stroke aphasia, and what actually helps them navigate daily life? His newest initiative takes this work directly into the community, where he's training students to bring brain health activities to underserved older adults in Newark's community centers.

As an ASHA Fellow and frequent international speaker, Dr. Centeno has made it his mission to ensure that aphasia research and care truly serve diverse communities. His extensive work on professional committees reflects his commitment to making the field more inclusive and culturally responsive.

So let's get into the conversation.

Katie Strong: As we get started, I love hearing about how you came into doing this work, and I know when we spoke earlier you started out studying verb usage after stroke and very impairment-based sort of way of coming about things. And now you're doing such different work with that centers around equity and minoritized populations. I was hoping you could tell our listeners about the journey and what sparked that shift for you.

Jose Centeno: That's a great question. In fact, I very often start my presentations at conferences, explaining to people, explaining to the audience, how I got to where I am right now, because I did my doctoral work focused on verb morphology, because it was very interesting. It is an area that I found very, very interesting. But then I realized that the data that I collected for my doctorate, and led to different articles, was connected to social linguistics. I took several linguistics courses in the linguistics department for my doctorate, and I needed to look at the results of my doctoral work in terms of sociolinguistic theory and cognition. And that really motivated me to look at more at discourse and how the way that we talk can have an impact on that post stroke language use. So, I kept writing my papers based on my doctoral data, and I became interested in finding out how our colleagues working with adults with aphasia that are bilingual, were digesting all this literature. I thought, wait a minute. Anyway, I'm writing about theory in verb morphology, I wonder where the gaps are. What do people need? Are people reading this type of work? And I started searching the literature, and I found very little in terms of assessing strengths and limitations of clinical work with people with aphasia.

And what I found out is that our colleagues in childhood bilingualism have been doing that work. They have been doing a lot of great work trying to find out what the needs are when you work with bilingual children in educational settings. So that research served as my foundational literature to create my work. And then I adopted that to identifying where the strengths and needs working with people by new people with aphasia were by using that type of work that worked from bilingual children. And I adapted it, and I got some money to do some pilot work at the from the former school where I was. And with that money I recruited some friends that were doing research with bilingual aphasia to help me create this survey. So that led to several papers and very interesting data.

And the turning point that I always share, and I highlight was an editorial comment that I got when I when I submitted, I think, the third or fourth paper based on the survey research that I did. The assessment research. And one of the reviewers said, "you should take a look at the public health literature more in depth to explain what's going on in terms of the needs in the bilingual population with aphasia". So, I started looking at that and that opened up a huge area of interest.

Katie Strong: I love that.

Jose Centeno: Yeah, that's where I ended up, you know, from an editorial comment based on the studies of survey research. And that comment motivated me to see what the gaps were more in depth. And that was in 2015 when that paper came out. I kept working, and that data led to some special issues that I invited colleagues from different parts of the world to contribute. And then three years later, Rutgers invited me to apply for this position to start a diversity focused program at Rutgers, speech language pathology. At Rutgers I met a woman that has been my mentor in qualitative research. Pamela Rothpletz-Puglia is in nutrition, and she does qualitative, mixed methods research. So, her work combined with my interest in identifying where the needs were, led me to identify the needs in the work with people with aphasia through the caregivers using her methodology. And I'll come talk more about it, because it's related to a lot of different projects that I am pursuing right now.

Katie Strong: I love this. So, it sounds like, well, one you got a really positive experience from a reviewer, which is great news.

Jose Centeno: Well, it was! It's a good thing that you say that because when we submit articles, you get a mixed bag of reviews sometimes. But, this person was very encouraging. And some of the other reviews were not as encouraging, but this was very encouraging, and I was able to work on that article in such a way that got published and it has been cited quite a bit, and it's, I think it's the only one that has pretty much collected very in depth data in terms of this area.

Katie Strong: Yeah, well, it sounds like that really widened your lens in how you were viewing things and taking an approach to thinking about the information that you had obtained.

Jose Centeno: And it led to looking at the public health literature and actually meeting Pamela. In fact, I just saw her last week, and we met because we're collaborating on different projects. I always thank her because we met, when our Dean created an Equity Committee and she invited the two of us and somebody else to be to run that committee. And when Pamela and I talked, I said to her, "that qualitative work that you are doing can be adapted to my people with aphasia and their caregivers". And that's how we collaborated, we put a grant proposal together, we got the money, and that led to the current study.

Katie Strong: I love that, which we're going to talk about in a little bit. Okay, thank you. Yeah, I love it. Okay, well, before we get into that, you know, one of the things I was hoping you could talk about are the demographics of people living with aphasia is becoming really increasingly more diverse. And I was hoping you could talk about population trends that are driving the change or challenges and opportunities that this presents for our field.

Jose Centeno: Yeah, that is actually something that I've been very interested in after looking at the public health literature because that led to looking at the literature in cardiology, nursing, social work, psychology, in terms of diversity, particularly the census data that people in public health were using to discuss what was going on in terms of the impact of population trends in healthcare. And I realized when I started looking at those numbers that and interestingly, the Census published later. The Census was published in 2020, several years after I started digging into the public health literature. The Census published this fantastic report where they the Census Bureau, discussed how population trends were going to be very critical in 2030 in the country. In 2030 two population trends are going to merge. The country gradually has been getting older and at the same time in 2030 as the country is getting older, 2030 is going to be a turning point that demographic transition, when the population is going to be more older people than younger people. So that's why those population trends are very important for us because people are getting older, there is higher incidence for vulnerabilities, health complications. And of those health complications, neurological, cardiovascular problems, stroke and also dementia.

Katie Strong: Yes. So interesting. And maybe we can link, after we finish the conversation, I'll see if I can get the link for that 2020 census report, because I think maybe some people might be interested in checking that out a little bit more.

Jose Centeno: So yeah, definitely, yeah.

Katie Strong: Well, you know, you've talked about diversity from a multilingual, bilingual perspective, but you also, in your research, the articles I've read, you talk about expanding the diversity umbrella beyond race to consider things like sexual orientation, socioeconomic background and rural populations. Can you talk to us a little bit about what made you think about diversity in this way?

Jose Centeno: Very good question, you know, because I realized that there is more to all of us than race. When we see a client, a patient, whatever term people use in healthcare and we start working with that person there is more that person brings into the clinical setting, beyond the persons being white or African American or Chinese or Latino and Latina or whatever. All those different ethnic categories, race and ethnicity. People bring their race and ethnicity into the clinical setting, but beyond that, there is age, there is sexual orientation, there is religion, there is geographic origins, whether it's rural versus urban, there is immigration status, language barriers, all of those things. So, it makes me think, and at that time when I'm thinking about this beyond race, I'm collecting the pilot data, and a lot of the pilot data that was collected from caregivers were highlighting all of those issues that beyond race, there are many other issues. And of course, you know, our colleagues in in aphasia research have touched on some of those issues, but I think there hasn't been there. There's been emphasis on those issues but separately. There hasn't been too much emphasis in looking at all of those issues overlapping for patient-centered care, you know, bringing all those issues together and how they have an impact on that post stroke life reconfiguration. You know, when somebody is gay. Where somebody is gay, Catholic, immigrant, bilingual, you know, looking at all of those things you know. And how do we work with that? Of course, we're not experts in everything, and that leads to interprofessional collaborations, working with psychologists, social workers and so on.

So that's why my work started evolving in the direction that looks at race in a very intersectional, very interactional way to look at race interacting with all these other factors. Because for instance, I am an immigrant, but I also lived in rural and urban environments, and I have my religious and my spiritual thoughts and all of those, all of those factors I carry with me everywhere you know. So, when somebody has a stroke and has aphasia, how we can promote, facilitate recovery and work with the family in such a way that we pay attention to this ecology of factors, family person to make it all function instead of being isolated.

Katie Strong: Yeah, I love that. As you were talking, you use the term intersectionality. And you have a beautiful paper that talks about transformative intersectional Life Participation Approach for Aphasia (LPAA) intervention. And I'd love to talk about the paper, but I was hoping first you could tell us what you really mean by intersectionality in the context of aphasia care, and why is it so important to think about this framework.

Jose Centeno: Wow. It's related to looking at these factors to really work with the person with aphasia and the family, looking at all these different factors that the person with aphasia brings into the clinical setting. And these factors are part of the person's life history. It's not like these are factors that just showed up in the person's life. This person has lived like this. And all of a sudden, the person has a stroke. So there is another dimension that we need to add that there in that intersectional combined profile of a person's background. How we can for aphasia, is particularly interesting, because when you work with diverse populations, and that includes all of us. You know, because I need to highlight that sometimes people…my impression is, and I noticed this from the answers from my students, that when I asked about diversity, that they focused on minoritized populations. But in fact, all this diverse society in which we live is all of us. Diversity means all of us sharing this part, you know, sharing this world. So, this intersectionality applies to all of us, but when it comes to underrepresented groups that haven't been studied or researched, that's why I feel that it's very important to pay a lot of attention, because applying models that have been developed to work with monolingual, middle class Anglo background…it just doesn't work. You know, to apply this norm to somebody that has all of these different dimensions, it's just unfair to the person and it's something that people have to be aware of. Yeah.

Katie Strong: Yeah. And I think you know, as you're talking about that and thinking about the tenets of the Life Participation Approach, they really do support one another in thinking about people as individuals and supporting them in what their goals are and including their family. You're really thinking about this kind of energized in a way to help some clinicians who are maybe thinking, "Oh, I do, LPAA, but it's hard for me to do it in this way". You probably are already on you road to doing this, but you really need, just need to be thinking about how, how the diversity umbrella, really, you know, impacts everybody as a clinician, as a person with a stroke, as a family member.

Jose Centeno: Yeah, and, you know, what is very interesting is that COVID was a time of transition. A lot of factors were highlighted, in terms of diversity, in terms of the infection rate and the mortality was higher in individuals from minoritized backgrounds. There were a lot of issues to look at there. But you know, what's very interesting in 2020 COVID was focusing our attention on taking care of each other, taking care of ourselves, taking care of our families. The LPAA approach turned 20 years old. And that made me think, because I was thinking of at that time of disability, and it made me think of intersectionality. And I just thought it would be very helpful for us to connect this concept of intersectionality to the LPAA, because these issues that we are experiencing right now are very related to the work we do as therapists to facilitate people with aphasia, social reconnection after a stroke and life reconfiguration. So, all of this thinking happened, motivated by COVID, because people were talking about intersectionality, all the people that were getting sick. And I just thought, wait a minute, this concept of intersectionality, LPAA turning 20 years old, let's connect those two, because my caregiver study is showing me that that intersectionality is needed in the work that we're doing with people in aphasia from underrepresented backgrounds.

Katie Strong: Yeah, I'm so glad that you shared that insight as to how you came to pulling the concepts together. And the paper is lovely, and I'll make sure that we put that in the link to the show notes as well, because I know that people will, if they haven't had the chance to take a look at it, will enjoy reading it.

Jose Centeno: And just let me add a bit more about that. Aura Kagan's paper on, I forgot where it was in [ASHA] Perspectives, or one of the journals where she talks about the LPAA turning 20 years old. [And I thought], "But wait a minute, here's the paper! Here's the paper, and that I can connect with intersectionality". And at the same time, you know, I started reading more about your work and Jackie Hinckley's work and all the discourse work and narrative work because that's what I was doing at the time. So that's how several projects have emerged from that paper that I can share later on.

Katie Strong: I love it. I love it. Yeah, hold on! The suspense! We are there, right?

Jose Centeno: This is turning into a coffee chat without coffee!

Katie Strong: As I was reading your work, something that stood out to me was this idea of building sustainable community relationships in both research and clinical work with minoritized populations. You've been really successful in doing this. I was hoping you could discuss your experiences in this relationship building, and you also talk about this idea of cultural brokers.

Jose Centeno: Wow! You know this is all connected. It's part of my evolution, my journey. Because as I started collecting data in the community from for my caregiver study, I realized that community engagement to do this type of qualitative work, but also to bring our students into the community. It's very important to do that work, because I you know this is something that I learned because I was pretty much functioning within an academic and research environment and writing about equity and social justice and all these different areas regarding aphasia, but not connecting real life situations with the community. For example, like having the students there and me as an academician taking that hat off and going into the community, to have lunch, to have coffee with people in the community, at Community Centers. So those ideas came up from starting to talk with the caregivers, because I felt like I needed to be there more. Leave the classroom. Leave the institution. Where I was in the community it's not easy. I'm not going to say that happened overnight, because going into any community, going into any social context, requires time. People don't open their doors automatically and right away. You know you have to be there frequently. Talk about yourself, share experiences. So be a friend, be a partner, be a collaborator, be all of these things together, and this gradually evolved to what I am doing right now, which is I started the one particular connection in the community with a community center.

How did I do that? Well, I went all over the place by myself. Health fairs, churches, community centers. People were friendly, but there wasn't something happening in terms of a connection. But one person returned my email and said, "we have a senior program here. Why don't we meet and talk?" So, I went over to talk with them, and since then, I have already created a course to bring the students there. I started by going there frequently for lunch, and I feel very comfortable. It is a community center that has programs for children and adults in the community. They go there for computer classes, for after school programs for the children. The adults go there for English lessons or activities and they have games and so on. And it's very focused on individuals from the community. And the community in Newark is very diverse. Very diverse.

So that led to this fantastic relationship and partnership with the community. In fact, I feel like I'm going home there because I have lunch with them. There's hugs and kissed. It's like seeing friends that that you've known for a long time. But that happened gradually. Trust. Trust happens gradually, and it happens in any social context. So, I said to them, "Let's start slowly. I'll bring the students first to an orientation so they get to know the center." Then I had the opportunity to develop a course for summer. And I developed a course that involved activities in the community center and a lecture. Six weeks in the summer. So this project now that I call Brain Health a health program for older adults, is a multi-ethnic, multilingual program in which the students start by going to the center first in the spring, getting to know people there, going back there for six weeks in the summer, one morning a week, and taking a lecture related to what brain health is, and focusing that program on cognitive stimulation using reminiscence therapy. And it's done multilingually. How did that happen? Thank God at the center there are people that speak Portuguese, Spanish and English. And those people were my interpreters. They work with the students. They all got guidelines. They got the theoretical content from the lectures, and we just finished the first season that I called it. That course they ran this July, August, and the students loved it, and the community members loved it! But it was a lot of work.

Katie Strong: Yeah, of course! What a beautiful experience for everybody, and also ideas for like, how those current students who will be soon to be clinicians, thinking about how they can engage with their communities.

Jose Centeno: Right! Thank you for highlighting that, because that's exactly how I focus the course. It wasn't a clinical course, it was a prevention course, okay? And part of our professional standards is prevention of communication disorders. So, we are there doing cognitive stimulation through reminiscence activities multilingually, so we didn't leave anybody behind. And luckily, we have people that spoke those languages there that could help us translate. And my dream now the next step is to turn that Brain Health course into another course that involves people with aphasia.

Katie Strong: Oh, lovely.

Jose Centeno: Yeah, so that is being planned as we speak.

Katie Strong: I love everything about this. I love it! I know you just finished the course but I hope you have plans to write it up so that others can learn from your expertise.

Jose Centeno: Yeah, I'm already thinking about that.

Katie Strong: I don't want to put more work on you…

Jose Centeno: It's already in my attention. I might knock on your door too. We're gonna talk about that later.

Katie Strong: Let's get into the work about your caregivers and the work that you did. Why don't you tell us what that was all about.

Jose Centeno: Well, it's a study that focuses on my interest in finding out and this came from the assessment work that I did earlier when I asked clinicians working in healthcare what their areas of need were. But after meeting Pamela Rothpletz-Puglia at Rutgers, I thought, "Wait a minute, I would like to find out, from the caregivers perspective, what the challenges are, what they need, what's good, what's working, and what's not working." And later on hopefully, with some money, some grant, I can involve people with aphasia to also ask them for their needs. So, I started with the caregivers to find out in terms of the intersectionality of social determinants of health, where the challenges were in terms of living with somebody with aphasia from a Latinx background, Latino Latina, Latinx, whatever categories or labels people use these days. So, I wanted to see what this intersectionality of social determinants of health at the individual level. Living with the person at home, what happens? You know, this person, there is a disability there, but there are other things going on at home that the literature sites as being gender, religion, and all these different things happening. But from the perspective of the caregivers. And also I wanted to find out when the person goes into the community, what happens when the person with aphasia goes into the community when the person tries to go to the post office or the bank or buy groceries, what happens? Or when the person is socializing with other members of the family and goes out to family gatherings? And also, what happens at the medical appointment, the higher level of social determinants in terms of health care? I wanted to find out individual, community and health care. The questions that I asked during these interviews were; what are the challenges?, what's good?, what's working?, what's not working?, at home?, in the community?, and when you go with your spouse or your grandfather or whoever that has a stroke into the medical setting?, and that's what the interviews were about.

I learned so much, and I learned the technique from reading your literature and reading Aura Kagen's literature and other people, Jackie Hindley literature, and also Pamela's help to how to conduct those interviews, because it's a skill that you have to learn. It happens gradually. Pamela mentored me, and I learned so much from the caregivers that opened all these areas of work to go into the community, to engage community and sustainable relationships and bring the students into the community.

I learned so much and some of the things that were raised that I am already writing the pilot data up. Hopefully that paper will be out next year. All these issues such as gender shifting, I would say gender issues, because whether is the wife or the mother that had a stroke or the father that had the stroke. Their life roles before the stroke get shifted around because person has to take over, and how the children react to that. I learned so much in terms of gender, but also in terms of how people use their religions for support and resilience. Family support. I learned about the impact of not knowing the language, and the impact of not having interpreters, and the impact of not having literature in the language to understand what aphasia is or to understand what happens after stroke in general to somebody.

And something also that was very important. There are different factors that emerge from the data is the role of language brokers, young people in college that have to put their lives on hold when mom or dad have a stroke and those two parents don't speak English well in such a way that they can manage a health care appointment. So, this college student has to give up their life or some time, to take care of mom or dad at home, because they have to go to appointments. They have to go into the community, and I had two young people, college age, talk to me about that, and that had such an impact on me, because I wasn't aware of it at all. I was aware of other issues, but not the impact on us language brokers. And in terms of cultural brokers, it is these young people, or somebody that is fluent in the language can be language brokers and cultural brokers at the same time, because in the Latinx community, the family is, is everything. It's not very different from a lot of other cultures, but telling somebody when, when somebody goes into a hospital and telling family members, or whoever was there from the family to leave the room, creates a lot of stress.

I had somebody tell me that they couldn't understand her husband when he was by himself in the appointment, and she was asked to step out, and he got frustrated. He couldn't talk. So that tension, the way that the person explained that to me is something that we regularly don't know unless we actually explore that through this type of interview. So anyway, this this kind of work has opened up so many different factors to look at to create this environment, clinical environment, with all professions, social work, psychology and whoever else we need to promote the best care for patient-centered care that we can.

Katie Strong: Yeah. It's beautiful work. And if I remember correctly, during the

interviews, you were using some personal narratives or stories to be able to learn from the care partners. And I know you know, stories are certainly something you and I share a passion about. And I was just wondering if you could talk with our listeners about how stories from people with aphasia or their care partners families can help us better understand and serve diverse communities.

Jose Centeno: You know, the factors that I just went through, they are areas that we need to pay attention to that usually we don't know. Because very often, the information that we collect during the clinical intake do not consider those areas. We never talk about family dynamics. How did the stroke impact family dynamics? How does aphasia impact family dynamics? Those types of questions are important, and I'll tell you why that's important. Because when the person comes to the session with us, sometimes the language might not be the focus. They are so stressed because they cannot connect with their children as before, as prior to the stroke. In their minds, there is a there are distracted when they come into the session, because they might not want to focus on that vocabulary or sentence or picture. They want to talk about what's going on at home.

Katie Strong: Something real.

Jose Centeno: And taking some time to listen to the person to find out, "Okay, how was your day? How what's going on at home prior?" So I started thinking brainstorming, because I haven't gotten to that stage yet. Is how we can create, using this data, some kind of clinical context where there is like an ice breaker before the therapies, to find out how the person was, what happened in the last three days, before coming back to the session and then going into that and attempting to go into those issues. You know, home, the community. Because something else that I forgot to mention when I was going through the factors that were highlighted during the interviews, is the lack of awareness about aphasia in the community. And the expectations that several caregivers highlighted, the fact that people expected that problem that the difficulty with language to be something that was temporary.

Katie Strong: Yeah, not a chronic health condition.

Jose Centeno: Exactly. And, in fact, the caregivers have turned into educators, who when they go into community based on their own research, googling what aphasia is and how people in aphasia, what the struggles are. They had started educating the community and their family members, because the same thing that happens in the community can happen within the family network that are not living with this person on a day-to-day basis. So, yeah. All of this information that that you know, that has made me think on how clinically we can apply it to and also something how we can focus intervention, using the LPAA in a way that respects, that pays attention to all of these variables, or whatever variables we can or the most variables. Because we're not perfect, and there is always something missing in the intervention context, because there is so much that we have to include into it, but pay attention to the psychosocial context, based on the culture, based on the limitations, based on their life, on the disruption in the family dynamics.

Katie Strong: Yeah, yeah. It's a lot to think about.

Jose Centeno: Yeah. It's not easy. But I, you know. I think that you know these data that I collected made me think more in terms of our work, how we can go from focusing the language to being a little more psychosocially or involved. It's a skill that is not taught in these programs. My impression is that programs focus on the intervention that is very language based, and doing all this very formal intervention. It's not a formula, it's a protocol that is sometimes can be very rigid, but we have to pay attention to the fact that there are behavioral issues here that need to be addressed in order to facilitate progress.

Katie Strong: Yeah, and it just seems like it's such more. Thinking about how aphasia doesn't just impact the person who has it. And, you know, really bringing in the family into this. Okay, well, we talked about your amazing new class, but you just talked a little bit about, you know, training the new workforce. Could you highlight a few ideas about what you think, if we're training socially responsive professionals to go out and be into the workforce. I know we're coming near the end of our time together. We could probably spend a whole hour talking about this. What are some things that you might like to plant in the ears of students or clinicians or educators that are listening to the podcast?

Jose Centeno: You know this is something Katie that was part of my evolution, my growth as a clinical researcher. I thought that creating a program, and Rutgers gave us that opportunity, to be able to create a program in such a way that everybody's included in the curriculum. We created a program in which the coursework and the clinical experiences. And this happened because we started developing this room from scratch. It's not like we arrived and there was a program in place which is more difficult. I mean creating a program when you have the faculty together and you can brainstorm as to based on professional standards and ASHA's priorities and so on, how we can create a program, right? So, we started from scratch, and when I was hired as founding faculty, where the person that was the program director, we worked together, and we created the curriculum, clinically and education academically, in such a way that everybody, but everybody, was included from the first semester until the last semester. And I created a course that I teach based on the research that I've done that brings together public health intersectionality and applied to speech language pathology. So, this course that students take in the first semester, and in fact, I just gave the first lecture yesterday. We just started this semester year. So it sets the tone for the rest of the program because this course covers diversity across the board, applying it to children, adults and brings together public health, brings together linguistics, brings together sociology. All of that to understand how the intersectionality, all those different dimensions. So, the way that the I structured the course was theory, clinical principle and application theory, and then at the end we have case scenarios. So that's how I did it. And of course, you know, it was changing as the students gave me feedback and so on. But that, that is the first course, and then everybody else in their courses in acquired motor disorders, swallowing, aphasia, dementia. You know, all those courses, the adult courses I teach, but you know the people in child language and literacy. They cover diversity. Everybody covers diversity. So, in the area more relevant to our conversation here, aphasia and also dementia. In those courses, I cover social determinants of health. I expand on social determinants of health. I cover a vulnerability to stroke and dementia in underrepresented populations and so on. So going back to the question, creating a curriculum, I understand you know that not every program has the faculty or has the resources the community. But whatever we can do to acknowledge the fact that diversity is here to stay. Diversity is not going to go away. We've been diverse since the very beginning. You know, like, even if you look, if you look at any community anywhere, it's already diverse as it is. So, incorporating that content in the curriculum and try to make the connections clinically. Luckily, we were able to do that. We have a clinic director that is also focused on diversity, and we cover everything there, from gender issues, race, ethnicity, all of those, as much as we can. So, the curriculum and taking the students into the community as much as we can.

Katie Strong: Yeah, I love that. So, you're talking about front loading a course in the curriculum, where you're getting people thinking about these and then, it's supplemented and augmented in each of the courses that they're taking. But also, I'm hearing you say you can't just stay in a classroom and learn about this. You need to go out.

Jose Centeno: Exactly! It's a lot. It didn't happen overnight. A lot of this was gradual, based on students feedback. And, you know, realizing that within ourselves, we within the course, when we were teaching it, oh, I need to change this, right, to move this around, whatever. But the next step I realized is, let's go into the community.

Katie Strong: Yeah, yeah. Well how lucky those students are at Rutgers.

Jose Centeno: Thank you.

Katie Strong: Well, we're nearing the end of our time together today. Jose and I just wanted, before we wrap up, I just wanted to ask you, "what, what excites you most about where aphasia research and care could go, or what do you think might need our most attention?"

Jose Centeno: That's a great question, because I thought of it quite a bit. But I'll focus it in terms of our diverse population, where the aphasia research should be. I think my impression is that there should be more attempts to connect the theoretical aspects of language with the psychosocial aspect. In other words, and this is how I teach my aphasia class. I focus the students on the continuum of care. The person comes in after stroke. We try to understand aphasia, but we aim to promoting life reconfiguration, life readaptation, going back into the community. So, here's the person with aphasia, and this is where we're heading to facilitating functioning, effective communication in the best way we can for this person, right? So, if these are all the different models that have been proposed regarding lexicon, vocabulary and sentence production and so on. How can we connect those therapeutic approaches in a way that they are functionally usable to bring this person back? Because there is a lot of literature that I enjoy reading, but how can we bring that and translate that to intervention, particularly with people that speak other languages. Which is very difficult because there isn't a lot of literature. But at least making an attempt to recruit the students from different backgrounds, ethnic backgrounds. And this, regardless of the backgrounds, there are students studying, interested in studying other cultures. And the curriculum exposes students to ways that we that there is some literature, there is a lot but there is some literature out there to explain vocabulary sentences in other languages post stroke in people with aphasia that, you know, we can use therapeutically. I mean, this is what's been created. So, let's look at this literature and be more open-minded. It's difficult. We don't speak every language in the world, but at least try to connect through the students that speak those languages in class, or languages departments that we have on campus, how those projects can be worked on. I'm just trying to be ambitious and creative here, because there's got to be a way that we should connect those theoretical models that are pretty much English focused intervention paradigms that will facilitate social function/

Katie Strong: It's a lot a lot of work, a lot of work to be done, a lot of a lot of projects and PhD students and all of that. Amazing.

Jose Centeno: I think it's as you said, a monumental amount of work, but, but I think that there should be attempts, of course, to include some of that content in class, to encourage students attention to the fact that there is a lot of literature in aphasia that is based on English speakers, that is based on models, on monolingual middle class…whoever shows up for the research project, the participants. But those are the participants. Now, I mean those that data is not applicable to the people [who you may be treating]. So, it's a challenge, but it's something to be aware of. This is a challenge to me that, and some people have highlighted that in the aphasia literature, the fact that we need more diversity in terms of let's study other languages and let's study intervention in other populations that don't speak English.

Katie Strong: Absolutely. Well, lots of amazing food for thought, and this has been such a beautiful conversation. I so appreciate you being here today, Jose. Thank you very, very much.

Jose Centeno: Thank you, Katie. I appreciate the invitation and I hope the future is bright for this type of research and clinical work and thank you so much for this time to talk about my work.

Resources

Centeno, J. G., (2024). A call for transformative intersectional LPAA intervention for equity and social justice in ethnosocially diverse post-stroke aphasia services. Seminars in Speech and Language, 45(01): 071-083. https://doi.org/10.1055/s-0043-1777131

Centeno, J. G., & Harris, J. L. (2021). Implications of United States service evidence for growing multiethnic adult neurorehabilitation caseloads worldwide. Canadian Journal of Speech-Language Pathology and Audiology, 45(2), 77-97.

Centeno, J. G., Kiran, S., & Armstrong, E. (2020). Aphasia management in growing multiethnic populations. Aphasiology, 34(11), 1314-1318. https://doi.org/10.1080/02687038.2020.1781420

Centeno, J. G., Kiran, S., & Armstrong, E. (2020). Epilogue: harnessing the experimental and clinical resources to address service imperatives in multiethnic aphasia caseloads. Aphasiology, 34(11), 1451–1455. http://dx.doi.org/10.1080/02687038.2020.1781421

Centeno, J. G., Obler, L. K., Collins, L., Wallace, G., Fleming, V. B., & Guendouzi, J. (2023). Focusing our attention on socially-responsive professional education to serve ethnogeriatric populations with neurogenic communication disorders in the United States. American Journal of Speech-Language Pathology, 32(4), 1782–1792. https://doi.org/10.1044/2023_AJSLP-22-00325

Kagan, A. (2020). The life participation approach to aphasia: A 20-year milestone. Perspectives of the ASHA Special Interest Groups, 5(2), 370. https://doi.org/10.1044/2020_PERSP-20-00017

Vespa, J., Medina, L., & Armstrong, D. M. (2020). Demographic turning points for the United States: population projections for 2020 to 2060. Current Population Reports, P25-1144.

https://www.census.gov/library/publications/2020/demo/p25-1144.html