Episode 140: RAISING PPA assessment and treatment from the ground up: In conversation with Dr. Jeanne Gallée

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