When Language Declines Slowly: Understanding Primary Progressive Aphasia

 Primary progressive aphasia is not the same as stroke-related aphasia, and the difference matters for diagnosis, treatment, and family planning. In this episode, Dr. Davetrina Seles Gadson breaks down the complexities of PPA, how it differs from other aphasia types, and why frontotemporal dementia is often part of the conversation. Angie Cauthorn adds plain language analogies that make the distinctions clear for anyone navigating this diagnosis. PPA is progressive, which means its impact on individuals, families, and communities does not stop at diagnosis. For stroke survivors, care partners, students, and health professionals who need to understand where PPA fits in the larger aphasia picture. 
Dr. Seles unravels the complexities of PPA versus other aphasia types and describes the difference between a stroke and frontal temporal dementia.

Angie shares analogies highlighting the key differences from other forms of aphasia.

The impact of PPA on individuals, their families, and communities is ongoing. 

This episode of Brain Friends is a must-listen for survivors,  students, and health professionals. 

https://www.cognitiverecoverylab.com/seles

https://aphasia.org/stories/announcing-the-davetrina-seles-gadson-health-equity-grant-program/

Our beloved colleague, Dr. Davetrina Seles Gadson, passed away January 11, 2025. Dr. Gadson was an extraordinary speech-language pathologist and neuroscience researcher who devoted her energy to studying health disparities in aphasia recovery. She was a fierce advocate for improving services for individuals with aphasia, particularly Black Americans. Her research transformed our understanding of these health disparities and shed light on how we can address them. We were privileged to have Dr. Gadson as a cherished member of our lab community for four years, first as a postdoctoral fellow and then as an Instructor of Rehabilitation Medicine. She was still a close collaborator and friend to many of us at the time of her passing. Dr. Gadson was an incredible person—compassionate, inspiring, and full of life. Her dedication to advancing equity in aphasia recovery and her profound impact on our community will never be forgotten. We are committed to honoring her memory by continuing to push our field forward and fight for equitable services for all people with aphasia. 

Transcript

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SPEAKER_01 0:00

Welcome to Brain Friends, where two neuronerds talk all things aphasia, language recovery, culture, and community. I am Dr. Datrina Celeste Gatson, a clinical speech language pathologist and neuroscientist.

SPEAKER_00 0:13

And I am Angie Cawthorne, stroke survivor and aphasia advocate. Welcome to our show. Welcome to Brain Friends.

SPEAKER_01 0:24

We want to thank all of our listeners for downloading the podcast. We appreciate everyone listening, so please tell a friend to tell a friend that we are here. And we are.

SPEAKER_00 0:48

Just out here enjoying the sunshine on uh on this fine, fine day. What is cracking with you?

SPEAKER_01 0:54

Nothing much, man. Samo, same ol. Um excited for this episode of Brain Friends, where we are gonna talk about primary progressive aphasia.

SPEAKER_00 1:08

Okay, hot topic. Yes. Um, it's been uh, you know, we just had to hop on the mic real quick and and talk about the the differences um of the frontal lobe and and and primary progressive aphasia versus uh a different type of aphasia, but we did aphasia types, but this is gonna be a little bit different in the way that we're going to uh really just dig in on PPA today.

SPEAKER_01 1:37

Yeah, yeah. All right. But we gotta get to our icebreaker, honey, because we know the people do not play about the icebreaker.

SPEAKER_00 1:48

So about the icebreaker, um where are we going? What are we gonna do?

SPEAKER_01 1:54

So what would you title your autobiography?

SPEAKER_00 2:00

If I had an autobiography, yeah, I would name it same me new mission.

SPEAKER_01 2:12

Same me new mission.

SPEAKER_00 2:16

Yeah, because I am still me at my core. Yeah. I have there is a new me, there is uh, there is a change that's happened, there are things that are different, but at my core, I'm still me, but now I'm on a new mission. Yeah, and that mission is the advocacy of aphasia, the advocacy of stroke, and just brain health as a as a whole. So that's the new me, and it'll be about strength, resilience, and and being a champion.

SPEAKER_01 2:46

Yeah.

SPEAKER_00 2:47

And being a winner.

SPEAKER_01 2:48

I think that's something we should all think about, really. Like, what is our autobiography? I love that. What about you? Um, I would name mine the power of no.

SPEAKER_00 3:02

Explain.

SPEAKER_01 3:03

So I feel like a lot of the accomplishments that I've had in life have happened because someone told me no. And when you tell me no, it drives me even more to want to do it. And so I think that that is one space of it. But then the other space is I'm at a stage in my life to where I've I'm also learning that no is a complete sentence. That you don't have to look, honey, either I can or I can't. Okay. And I don't have to give you a reason, an excuse. Right. If I don't want to go, if I don't want to do it, like no is a complete sentence. So I would. So I think that that's one of the things that that word no helped me throughout my career and schooling, and now in this new stage, just helping me kind of like rediscover myself in a different way and be okay with it.

SPEAKER_00 4:06

And that's how you got into research because you wanted to do, you wanted to know about how these things were affecting the black community. And they told you you couldn't do that because it didn't exist. And you were like, okay. And she did it. And then here you go, and who's holding the pen?

SPEAKER_01 4:22

And who's got that pen? Exactly. Exactly. And they said no. Like, I remember wanting to do my dissertation research initially on the topic that I was able to do it on. And at first they were like, Well, you need a better reason. Not just because it's your community. That's not good enough. Uh-huh. And I think it was just that thing of no, even back as a kid, my mom would tell me if they told me no, then I'd be like, Okay, well, let me try to figure out how to do it anyway.

SPEAKER_00 4:55

Right. Okay. Which was actually considered mischievous then, but now uh it's got you on top. So it made me a doctor. Call me Dr. Celeste. Thank you very much. Thank you very much. That is too much. I love that. Yeah. All right. So, what are we talking about today?

SPEAKER_01 5:16

So, primary progressive aphasia is pretty much a hot topic right now. You know, in some of our episodes before, we've talked about how aphasia is not known by everybody. And recently, um, a while back, we know that Bruce Willis was diagnosed with primary progressive aphasia or PPA. And most recently, Wendy Williams has um her team said that she has been diagnosed with primary progressive aphasia and uh frontal temporal dementia.

SPEAKER_00 5:55

I have so many questions about it. I guess my first question would be: what does the frontal lobe do? Like, what does the frontal lobe control?

SPEAKER_01 6:06

Yeah. Well, so the frontal lobe controls a lot of things, and you know, it's going to be responsible for attention, personality changes, verbal expression, um, emotion, spontaneity, problem solving. Like that's the lobe that we go to for so many things. And then if we think about the temporal lobe, you know, you may have increased aggressive behavior. We know that the temporal lobe is our listening lobe. So an individual might have difficulty understanding spoken spoken words or attention, uh, memory loss, uh, persistent talking. So just kind of like, you know, talking with that that may be uninhibited. And so those two lobes together can create challenges, honestly.

SPEAKER_00 7:06

No, a whole avalanche of nonsense. There you go. Just not be of being misunderstood and misunderstanding. Yeah. And it sounds it's it sounds like the same um things that uh you experience with a stroke of those. So even though you may have well, I guess that would be my next question. What is the what is the difference between the onset of a of PPA, of a primary progressive aphasia versus a stroke? Like is there I know there's a difference, but in the difference of the onset, how does that affect long term? Does that make sense?

SPEAKER_01 7:54

Yeah. So when we think about a stroke, that's gonna be that acute occurrence that's happening. And so oftentimes with a stroke, the damage is also gonna be more focal, like so to whatever part of the brain lost the blood supply to cause the damage. But when we think about uh PPA that could be associated with the frontal temporal dementia, we're thinking about a progressive neurodegenerative disease. And so the changes are gonna be slow to onset, it's not just gonna happen like that. They may increase gradually, um, but the change of it's gonna be different. And then also it can be more widespread. So you might not just have that one little area that has the damage of loss of uh where the where the uh blood supply was lost with the degenerative nature that occurs with PPA, the loss can occur throughout the different lobes, which makes therapy a little bit more challenging. And recovery, because it's gonna continue to get it's gonna continue to progress versus the stroke, you're gonna have more of a recovery.

SPEAKER_00 9:17

Okay, so to make sure I understand you with a stroke because it's a sudden onset, so it's um almost like an attack or like a bruise, and that bruise will actually get better over time, um, won't be as widespread or it gets better versus PPA, it comes on slow, it's not a like a hit and a bruise, it's more like um it's a uh a pebble in the water and it just spreads out.

unknown 9:50

Yeah.

SPEAKER_00 9:53

Right, right. And it doesn't have a way to uh is so it's not like once the bleeding stopped after a stroke, the stroke is over. Versus PPA, that type of issue, it's actually getting worse, progressively worse. And so our retire, well, what's it called? Um retirement. No, to get better is our recovery track is night and day. But the fact that there is no cure for aphasia in either either realm, it's just about the therapy.

SPEAKER_01 10:28

Mm-hmm. Mm-hmm. Mm-hmm. And the other thing to make sure we di differentiate is aphasia is the symptom of what's happening in the brain. So aphasia is the symptom of the stroke. PPA is the symptom of that frontal temporal dementia, or if it's Alzheimer's or Picks disease. When we think about PPA, PPA is a result of some type of neurodegenerative disease that's occurring in the brain versus your regular aphasia is often a result of that acute onset of a change. So whether it's a stroke, traumatic brain injury, brain tumor, but it's acute, so it's not necessarily gonna continue to get worse. It you may have the ability to get better, especially because of neuroplasticity.

SPEAKER_00 11:24

So neuroplasticity may not be coming to save you in the same way with PPA.

SPEAKER_01 11:33

Right, right, because of the degenerative nature of it. So it's only going to continue to get worse, unfortunately. It's because it's progressive. Right. So this I got it.

SPEAKER_00 11:46

So when we were talking about neuroplasticity before, you were saying it's like being in traffic, and then your brain will kind of find a different way to get to the information, like a detour. What we're finding with BPA, if I understand you correctly, these roads are all washed out, and they're getting more washed out by the hour or the certain amount of time.

SPEAKER_01 12:09

It's gonna be a gradual progressive.

SPEAKER_00 12:12

And so it's I really am kind of stuck just in this water that I can't get around or this traffic. And things around me are deteriorating to the point where I can't get to the main road, where with stroke onset, I may be able to have some neuroplasticity that can build me a detour around the part that has been damaged because that part is stagnant and it's not growing more, but versus the other one is growing more, and so it's taking up more and more space, encroaching upon the good part of the brain versus a stroke onset is stagnant. Is that correct? Right. Yeah, yeah.

SPEAKER_01 12:59

So even if we think about like aphasia, even if we think about aphasia, one of the things that we're able to do in individuals that have aphasia, because again, we're talking about aphasia, you know, because PPA is a type of aphasia, the difference comes into play how you get your aphasia, if that makes sense. So if you get your aphasia because of that acute, you know, one-time incident that happened, you have the ability to use some of your other lobes and some of those other areas that are stronger to help you get better. If you get your aphasia, like a PPA, which is gonna be progressive in nature, you know, you might have something and then you don't have it. And getting it back is going, you're not, you may, you're not gonna be able to get it back because of the degenerative nature. And so that disease, the progressive nature, yeah. And which is it's in the name. It's in the name.

SPEAKER_00 14:10

It's progressing.

SPEAKER_01 14:11

Yep, it's progressing.

SPEAKER_00 14:12

Yep, yep. Are there any assessment? How do they assess that? Like, I know for my aphasia, they give us the WAB, and we've talked about the uh Western, what is it called? The Western Aphasia battery?

SPEAKER_01 14:27

Mm-hmm.

SPEAKER_00 14:27

Yes. Look at me. That's it. Honey, you know the stuff, honey. You know the stuff. So um other than the WAB, well, would they, how would they, would it would she just be take, would a person that has PPA just be taking a regular dementia test or Alzheimer's test, or would they be taking the WAB?

SPEAKER_01 14:52

So for speech language pathologists specifically, um, some may give them the Western aphasia battery, the WAB, or another test that uh clinicians may use is the Arizona battery for communication disorders of dementia. And so that type of test may help you understand what pieces are still strong from a communication perspective as a whole. Because when we think about any type of neurodegenerative disease or a disease that's going to continue to get worse, you then start to look at compensatory strategies to help the individual be as safe in their environment as they can. So whether it's using post-it notes or environmental types of safety strategies that may really involve the family more so because of the progressive nature.

SPEAKER_00 15:53

Hmm. Like if for the SLP, how would they modify their treatment plan for a person with a phasure versus a person with PPA? And I understand that it's obviously you just kind of answered it, I guess, before because it's progressive versus stagnant. Right. So that kind of tells me right there, it would seem like it would be a little different. But are there things that are uh similar and or where do they split in the way you would treat?

SPEAKER_01 16:24

Yeah, so oftentimes when you think about treating an individual that has aphasia that's not in a progressive nature, the idea and the goal is to try to get that individual back to a level of independence.

SPEAKER_00 16:37

Okay.

SPEAKER_01 16:38

Where with someone with a progressive type of aphasia, the idea is to get that person to where they're safe, where they're comfortable in that space that they're in, um, and using strategies. So where, you know, one goal might be um, I don't want you to look at this picture. I want you to just, you know, guess or use different strategies to figure out a name of something. With PPA, you're gonna just do, you're just gonna show them whatever picture is. You don't want them guessing at anything. I'm just gonna tell you whatever I want you to know. So I'm not gonna try to make you remember, don't touch the stove or turn off the stove. I'm going to make sure you have a post-it note that says don't touch the stove or unplug it or just unplug it. There you go. Exactly.

SPEAKER_00 17:34

So they're treated like they have Alzheimer's because they kind of they're on the road to Alzheimer's.

SPEAKER_01 17:41

Well, we should do an episode on dementia because you know, Alzheimer's is Alzheimer's is a different type of dementia. And so when we think about primary progressive aphasia, it doesn't necessarily occur just with dementia. It can occur with any disease that starts to deteriorate the language centers of the brain.

SPEAKER_00 18:05

Well, that doesn't sound like a good long-term outlook for a person with PPA. It sounds like that's uh because it is progressive and it's not stagnant, and it seems like that's just that long-term outlook. Well, what would that what would the long-term medically be? It's do we have is there any hope in recovery? I guess there's not. You've already answered that.

SPEAKER_01 18:32

Yeah, a lot of times with PPA and the the research is, I mean, the research that they're doing, so shout out to all of my PPA researchers. Um, I just did some reviews for the clinical aphasiology conference, and we got a lot of great submissions on uh primary progressive aphasia. I think the scientists are trying to find new ways to help family members because unfortunately a lot of the burden does fall on the family members because of the progressive nature of it. And so trying to understand, okay, well, what words in the individual's vocabulary are important? And so that's one of the major differences, too, with treatment with a primary progressive aphasia versus maybe just a regular aphasia, in that a regular aphasia, I might just be trying to get you to increase your vocabulary. So, you know, dog, pen, hat, you know, like all these other things. Right. But with a primary progressive aphasia, because of the progression of the disease, I need to make sure that the words that I'm training you on or keeping you up to speed with are words that you actually use in your vocabulary. I understand.

SPEAKER_00 19:52

Right. Because you're I I'm back on this road that's taking on water and progressive, it's like I'm just taking on water. So I just need to make sure I can stay afloat rather than getting to a better road. It's not about getting to a better road, it's about staying afloat.

SPEAKER_01 20:09

Right. So even if you think about family members going back to what we were talking about treatment, I might not just have a picture of your wife, your spouse, I'm gonna have a picture of your spouse with her name. Because I don't need you to try to constantly remember, because then that also creates frustration, especially if it's depending on what lobes or where the degenerative nature is occurring in the brain. You know, if I'm telling you, calling you Susie, and you keep telling me your name is Tabitha, then I might get upset with you because I'm like, no. But if the name is there with the picture, that extra visual stimuli takes away from me having to figure it out, which is really, really important for individuals with PPA.

SPEAKER_00 21:06

I'm gonna tell a quick um thing. My aunt had dementia with um a side of uh aphasia. She had it with a scoop.

SPEAKER_01 21:18

She had it with a side of a give me a little bit of dementia with uh side of her. Just a hit.

SPEAKER_00 21:25

Just a little, yeah, just a scoop. And I remember telling my cousin, shout out to Rennie, that I felt like she knew, even though she couldn't answer, but I didn't know what a video was. And I said, Well, she knows she's from North Carolina. And he would say, She doesn't know anything. And I'm like, if you ask her if she's from North Carolina or is she from Denver, she's going to give you a different response on the North Carolina. And I it's like I knew that she was in there, even if she wasn't there for long or couldn't progress. I I I knew I was like, no, she knows more than you know, she you know, she would you would who's this, C T and this is why I say it's not about what you know, it's about what you can prove you know.

SPEAKER_01 22:09

Yeah.

SPEAKER_00 22:10

Because if either you can name this is William Jr. or you can't. And it's we're so like, Z told you she don't know. And she did know. And you know, let's say a person thought I think T T has um aphasia, but they're telling they're telling me she has full-on dementia. Is there a test to be able to differentiate between the two?

SPEAKER_01 22:38

Well, so dementia, so you would go see a neuropsychologist. A neuropsychologist is the in the are the individuals that would diagnose dementia. Um, and again, the different types of dementia can only like as far as like your Alzheimer's or whatever, can really only be diagnosed after um death because you have to look and see the plaques and tangles of the brain. So when we think about aphasia, aphasia is the symptom of something that's happening in the brain. So whether aphasia, now an individual is starting to have difficulty with their words or showing signs of like loss of language, then that could be a sign to the neuropsychologist that maybe dementia or something else is happening, especially if there wasn't an acute stroke or a brain injury or something like that. Something that we can point to. There you go. And then the individual just all of a sudden is having trouble naming things. Another good episode that we might do uh could be on like a mild cognitive impairment, which is often something that you would hear of is you know, someone may say, Okay, okay. No, I'm not waving you off. I'm saying me, me, me. Well, because there are certain age changes that happen, like to our language. Um, meaning, you know, sometimes you might say, like, oh, I can't remember this word. And, you know, some of that stuff is normal.

SPEAKER_00 24:15

Right. I walk in the room, I don't remember where I walked in the room. There you go.

SPEAKER_01 24:19

Some of that stuff is normal with age. That's that's what we consider normal aging. But when it becomes the frequency of it, or when it starts to interrupt your activities of daily living, that's when you go to a neuropsychologist and they put you through a battery of assessments to look at your language ability. And then depending on what those results are, then you would go to a speech language pathologist that would start you on a therapy plan and test you more on what exactly the language difficulties you are having.

SPEAKER_00 24:59

Dr. Celeste, this has really been a great episode. I've learned so much.

SPEAKER_01 25:03

Thank you. I hope I explained it well. Thanks so much, Angie. I'm really glad that we were able to talk about this. And I think maybe we should do an episode on dementia and what that looks like, especially with how it intertwines with aphasia and other language difficulties.

SPEAKER_00 25:24

All right, listen, we will see you guys later. Thank you guys for listening. Oh, we have our YouTube channel. Be sure to check that out.

SPEAKER_01 25:32

Yes. Bye.

SPEAKER_00 25:34

Peace y'all.

SPEAKER_01 25:38

We hope you enjoyed this episode of Brain Friends. Please leave us a five-star review on Apple Podcasts or your favorite streaming platform. Also, make sure you subscribe to our YouTube channel.

SPEAKER_00 25:51

Brain Friends the Podcast.

unknown 25:56

Oh, extra.