Podcast – Speech & Language Therapy in Primary Progressive Aphasia

Voice Over:

The Dementia Researcher Podcast, talking careers, research, conference highlights, and so much more.

Dr Annalise Rahman-Filipiak:

Hello, and welcome to the Dementia Researcher Podcast. My name is Annalise Rahman-Filipiak. I'm a neuropsychologist and assistant professor at University of Michigan, and I am pleased to be back to host today's episode. Today, we will be talking about the role of speech and language therapy in primary progressive aphasia. Many of you will know that primary progressive aphasias or PPA are a group of language-led dementias associated with Alzheimer's disease and frontotemporal dementia. The main and leading symptom is speech and language difficulty, and the main treatment for these symptoms is speech and language therapy.

This year marks the second PPA awareness campaign, and the focus of which is referral to speech and language therapy early. So, in honour of this important awareness effort, this episode will highlight research on early diagnosis and care pathways to speech and language therapy. I am joined by three wonderful guests who specialise in this topic, Jackie, Jason, and Anna. First, Professor Jason Warren, who is a professor of neurology at University College London, and the National Hospital for Neurology and Neurosurgery. Jason is a world-leading behavioural scientist in the field of PPA.

We are also joined by Dr. Anna Volkmer, also from University College London and the National Hospital for Neurology and Neurosurgery. Anna is an associate professor and consultant speech and language therapist. And last but not least, we are joined by Dr. Jackie Kindell, another speech and language therapy researcher and lecturer, but her Manchester University. Hi, Jason, Anna, and Jackie.

Dr Anna Volkmer:

Hi.

Dr Jacqueline Kindell:

Hello.

Dr Annalise Rahman-Filipiak:

Thank you so much for joining us today. To start off, could I ask you each to introduce yourselves? I'll start with you, Jason.

Professor Jason Warren:

Yes. So, I'm Jason. I'm a clinical neurologist, and I run a clinic with a particular interest in primary progressive aphasia at the National Hospital for Neurology and Neurosurgery on Queen Square. And I'm also a brain researcher. And the particular interest of my research group is in developing new ways, new markers of diagnosis for primary progressive aphasia, and also more broadly hearing and dementia.

Dr Annalise Rahman-Filipiak:

Fantastic. Anna?

Dr Anna Volkmer:

Perfect. Thank you. My name is Anna Volkmer. I'm a speech and language therapist. I've worked for 25 years clinically as a speech and language therapist, but I'm also an academic, a researcher. And my research and my clinical work has really focused on supporting people with primary progressive aphasia and their family members, as well as people with other types of dementia. And really understanding what we can do in terms of interventions and helping them to live well for longer.

Dr Annalise Rahman-Filipiak:

Thanks for being here. And lastly, Jackie.

Dr Jacqueline Kindell:

Hi, I'm Jackie. I'm also a speech and language therapist. I've recently moved to the University of Manchester, but before that, I've kind of had the privilege of a long career specialising in dementia as a speech and language therapist. So, I've always worked in older adult mental health. So, people with dementia and memory clinics or on the wards or the community mental health team. And in that service, you would work with obviously communication, but eating, drinking, swallowing issues, all kinds of dementia. But obviously part of that and a significant part as a speech and angry therapist will be people with primary progressive aphasia or other sort of language-led dementias, really.

So, I'm interested in the whole spectrum from the earliest through to the latest stages, because people come to us with PPA, all different points within our pathway, and we have to provide the care to them at all of those different areas, really.

Dr Annalise Rahman-Filipiak:

So, glad to have you all. To kick us off, I'd like to talk about why an early diagnosis may be difficult in PPA. As we already touched on during the introduction, getting a prompt diagnosis is often an issue for people with PPA, but why is this? Jason, I'd like to start with you if possible. From a medical perspective, what is it about PPA that might make it difficult to diagnose?

Professor Jason Warren:

Yeah, so I think it's difficult probably for three main reasons really. So, first of all, it's something that strikes an incredibly complex brain function, and it's a brain function that is extremely diverse. You think about all the many ways that we are called upon to communicate in daily life, and most of those can be affected by primary progressive aphasia. So, it can come on in a bewildering variety of different ways. And it's also, those functions are really quite close to us. I mean, their language is one of the things that makes us human and defines us as individual humans. And it's sometimes really difficult to get at things that are so close to us.

I think the second major issue is that it's not well recognised by clinicians, certainly not by neurologists and by doctors, but probably not by more widely other varieties of clinicians. And I think that this is partly because we've got an image of dementia, which is at large, which basically says that dementia is memory failure of older people, and that doesn't really apply to people with primary progressive aphasia. And the third main reason is that we, even if it is suspected, don't have good tools to diagnose and measure it.

Many of the instruments that we use, the diagnostic tests, the cognitive tests that we use to diagnose dementia are really geared toward memory and other types of problems, not toward language and communication, and certainly not toward communication as we use it in everyday life, really. And even brain scanning, which is incredibly informative or can be incredibly informative, even that can lack sensitivity for picking up the diagnosis. So, it's very easy for people to either not be diagnosed or to be sent down a rabbit hole of misdiagnosis.

Dr Annalise Rahman-Filipiak:

Can I ask a follow-up question to that? So, how long on average does it take for an individual to get a diagnosis?

Professor Jason Warren:

It takes much too long. And we know this both from sort of a clinical hunch, but it's a hunch that's been now substantiated with actual surveys measurements. So, the senior postdoc in my group, Chris Hardy, has studied this in detail and has done a live survey of caregivers and partners for people with primary progressive aphasia and asked them, among many other things, to recall how long it took them to get a diagnosis. And it's several years in most cases, and in some types of primary progressive aphasia, maybe even as long as five years on average.

And that tends to be, which I'm sure we'll talk about, the semantic variant, which is the one that doesn't obviously affect the way language sounds, the way someone talks, can go disguised or unsuspected for a very long time. And if you think about someone living with uncertainty, not really being sure what's happening to them or to their loved one for five years or longer, I mean, that's not a satisfactory situation.

Dr Annalise Rahman-Filipiak:

Not at all. Thanks for giving us some range there to ground this conversation. And I'd like to turn to you. Can you explain to us then what the role of speech and language therapists is in supporting a diagnosis of PPA?

Dr Anna Volkmer:

Absolutely. I work with Professor Warren, Professor Jason Warren, actually in our diagnostic clinic at the National Hospital at Queen Square. And my role is to support the diagnostic process through assessments. So, for example, I often will become involved or separately assess. Sometimes, we jointly assess and sometimes, I separately assess people's oral motor function. We know that people with non-fluent variant primary progressive aphasia, their symptoms are led by a motor speech disorder, an apraxia, as well as an agrammatism.

So, my role would be to pick apart whether somebody's presenting with a motor speech disorder versus somebody perhaps who has a logopenic variant of primary progressive aphasia when it's more to do with word retrieval versus somebody with a semantic variant where it's looking at word meaning. So, part of my job role would be doing some language testing and some motor speech testing alongside Professor Warren and the medical team. I would also, in that conversation, be supporting the person to also understand their diagnosis if and when we get there.

We often find that some of the clients we're working with, especially the people with language difficulties, might find some of their constructs around the nomenclature. I hate that. I said that word wrong. I always stumble across that word. Well, there you go. These jargonistic words are difficult for people to understand. They're often quite abstract. They're not visible. And sometimes part of my role will be to perhaps support the person with the language difficulty and the partner to make sure they followed the diagnosis giving and then also talk about support. Perhaps that's my most important role actually in that interaction.

And we know from the research that we've done with Professor Jason Morin and in my lab in the Better Conversations Lab, where we've asked people about their experiences of having primary progressive aphasia and the support they've got afterwards and the access to speech therapy, they often have said that it's really difficult to find a route to speech therapy. So, often my job role is to make sure that people just don't drop off a cliff, that they feel supported. I think Jason might like to add to that. Is that a fair description of what I do? Do you want to refine my description?

Professor Jason Warren:

Yeah, that's a modest description of what you do, Anna. I mean, speech and language therapy, I'll say for the first time at this podcast is absolutely vital and is far underutilised for various reasons and is really the main treatment that we have for primary progressive aphasia at the moment. And some ways, that's unfortunate, of course, but in other ways, it's a major opportunity, which overall we don't make enough of.

Dr Annalise Rahman-Filipiak:

That is an incredible description of what seems like a very multifaceted role that you play. As a neuropsychologist myself, I just have to say, I appreciate the attentiveness not only to the multimodal assessment, but also to the feedback process and how that in and of itself can be therapeutic and can sort of launch families in the right direction or the wrong one. So, really interesting to hear, and I'm sure we'll circle back to this. Jason and Anna, it must be useful having support from speech and language therapy. Is there much research on who should diagnose PPA?

Professor Jason Warren:

There's not nearly enough. I mean, it's been traditionally a field dominated by neurologists, and in some ways that's understandable because neurologists have the province of language aphasia traditionally in stroke, and they're often trained to assess language in that way. And they really were responsible for, I guess, the initial recognition of primary progressive aphasia, which by the way, dates back to, well, at least the 19th century, probably before. Obviously, it was called different terms then, but there were very clear descriptions from neurologists from those times that gets periodically forgotten about by a neurologist and then rediscovered as it did about 40 years ago.

And so, I think neurologists have dominated the landscape, but I would say as a neurologist, that it really, really needs to be a team effort. And the fundamental reason for that is that neurologists are quite reductionist in their approach. It's how they're trained usually, and they like to measure things and they really like to focus on what people can't do because that's usually what they use to make a diagnosis, but you need to have a speech and language therapist to give the complimentary picture and also to be able to tell us what someone is actually doing in their daily life beyond tests, which sometimes can be the whole clue to the diagnosis.

Dr Annalise Rahman-Filipiak:

Yeah, that functional impact is so important and much more important to our patients than how they might perform on a particular test. Jackie, I'd love to bring you into the conversation here. Are speech and language therapists regularly or always involved in diagnosing PPA in the UK or even internationally?

Dr Jacqueline Kindell:

No, unfortunately not. It's a very variable picture and I think therein lies the problem. So, you kind of have these certain centres of excellence or longstanding speech and language therapy practitioners, posts where people have been for many years and then other places where there's really challenging access really. And I think in the UK, we call it a postcode lottery. So, it depends on where you live as to what you get. And I think we would all agree that's not really a good state of affairs. So, it's very historical in terms of how services have been organised or commissioned.

So, you might go to one locality and they'll have a speech therapist based with their memory clinic or with their older adult mental health team or their neurology team. And I guess that's the other issue is that in the UK, some of the diagnosis is done in psychiatry and some of it's done in neurology and some of it's done in psychiatry, then they go to neurology. So, it's not a simple pathway either, so that makes it a bit more complicated. But some places you'll have a few speech therapists and then literally next door, no speech and language therapists at all and find it very difficult to access that.

So, in the group that I'm involved with in the North of England, we've got some amazing areas with some really innovative practise, which is very heartening. Speech therapists that are very involved with looking in their memory clinic, anyone that's atypical, language seems to be the dominant thing. They go straight to the speech therapist, really clean kind of pathway. That works really well. We've got another service that have, they've taken their speech therapist and they've trained them as an advanced clinical practitioner. So, they've had extra training from their speech and language therapy post to look at scans or blood tests or whatever to do that additional diagnosis.

So, we've got some really interesting areas of innovation really. And where that's happened, I think that's because those services have kind of recognised that speech therapists have got the underlying neurology training and like you've said, that neuropsychology to be able to kind of pull it out. And it's actually part of our training. So, I think sometimes people don't realise what a speech therapist does till you get one and you kind of think, "Oh, that's what you do and that's what knowledge you've got." And I think that innovation has tended to occur in those kind of places, but no means is it uniform. And I think Anna and I would say that replicates internationally, doesn't it?

Dr Anna Volkmer:

It does. I was just going to add, because we did a survey back in 2016 of a UK-wide survey of speech therapy practise in PPA. So, I'm in the south of England, Jackie's in the north, we just alluded to that, but we also have a UK-wide group of speech therapists who specialise in PPA. And we repeated a couple of questions from that survey a couple of years ago. And where say 10 years ago, speech therapists, only 10% less than that had any kind of care pathway for people with primary progressive aphasia, and it was really, really patchy. On our survey more recently, we had 20% having care pathways.

And that's the examples that Jackie has mentioned are examples that have... We know those clinicians and they're people who are much more recent in their positions. We've also replicated that in an international basis elements of that survey. Jeanne Gallée is a speech and language pathologist in Washington and research and she worked with Jackie and I in our international speech therapy group. And we're seeing really similar patterns internationally if I'm honest. And we're finding that people aren't, as Jackie said, there's no training and that's internationally, there's reduced confidence, there's limitations in terms of commissioning, so funding opportunities.

And then we're seeing that there's barriers in terms of awareness, broader awareness of the role of what we do. So, there's a few things impacting on that data. Have I missed anything, Jackie?

Dr Jacqueline Kindell:

No, I think that's it, isn't it? I think it's just that kind of variability really, isn't it? So, we did a big listening event in our city, and it was just really interesting. Some people with PPA had had just the most amazing service, and other people had really had to work really hard, and they'd also missed out on some basic, I would say, some basic advice really, in terms of how they were managing things, about how their language might deteriorate or how their writing would be affected. They hadn't put advanced planning in terms of some of those things. So, it was really quite difficult being in that space, seeing people in quite, not a large city, but differences in experience.

And I think it's not a good thing, is it, when you've got that. So, we've got both ends, but as Anna says, it's getting better. And I guess that's what we've got to hold onto, I think. And that's why things like this are really important because by raising that awareness, I think that's how people can kind of understand. And sometimes it starts small. We've had services where people have started with half a day a week and they work at a clinic half day a week and then put, "Oh, actually we need more of that." And then the halftime post, then a full-time post, and then that services come to therapists.

So, sometimes it's not large amounts of money that can make a difference. It's small things that can then grow and can kind of show the need.

Dr Annalise Rahman-Filipiak:

That's really helpful to know. And I think you're pointing out that this really is an international issue, not only dementia care capacity broadly, but for these very, very highly specialised services for individuals with atypical presentations. In addition to this fantastic podcast, any other resources you might point out to folks who are looking to learn more about speech and language therapy or even just how they might fit into the multidisciplinary team? I'll give that to everyone broadly.

Dr Anna Volkmer:

Yeah. Well, that's a good question. The first thing that springs to my mind is in our international speech and language therapy network, we've got researchers from 25 countries worldwide now. And one of the things that we've done is recognise the need for more resources. So, we're trying to share, that's why we came together in the first place. Locally, we've done the same to share case presentations, share practise. And internationally, we wanted to do the same and actually translate some of those resources in, because there is some research. There are some studies going on. There are randomised controlled trials, one or two of speech and language therapy that are trying to influence policies.

We might be leading one at UCL, but they're in the offing. There are qualitative research studies and smaller group trials, but actually clinicians on the ground need resources and other professionals need to know what we do. So, our international group has a website where we try and share clinical resources, but as a more locally in the UK, I guess this is where the PPA Awareness Day comes in. Actually, this is what the focus is of we wanted to mention on this podcast, and that's come in because people with PPA that we've worked with have said, "Yeah, all your wonderful aim to create randomised controlled trials that will influence policy. It's all really wonderful.

However, can we do something much more basic?" So, we can see speech therapists trying to increase small amounts of money. We can see professors of neurology trying to help us live well, but can you do some work just to let everybody know that if we have PPA, we need to have a referral to speech therapy. That's it. That's the care pathway. So, out of that was born, a collaboration where we're trying to increase awareness and this is part of a research piece of work we've done as well. So, we've used lots of different participatory methods and qualitative research methods to underpin this awareness piece and work together with researchers, neurologists, as well as people with lived experience.

Dr Annalise Rahman-Filipiak:

I have lots of specific questions, but that's a really helpful start.

Professor Jason Warren:

Can I call out a couple of things? So, first of all, I'd really like to call out, we have a national PPA support group in the UK as part of Rare Dementia Support with its website. And they have a lot of resources associated with them, and they do actually take people remotely and sort of involve in our webinars and meetings, and Anna and I are involved with that. But also there will be, I think, other sources of support. For example, Association for Frontotemporal Dementia in the US has some very good things, as I'm sure you know, and there may well be other things. And the second thing I wanted to call out is that we're trying to build this resource.

So, we've just launched, I think, really exciting development, trying to do what Anna has done with the speech and language therapy community with the neurological community. So, Chris Hardy's now assembling, we think it will have over a hundred neurologists from many different countries, about 30 different countries, all of whom have an interest in PPA to try to join them all up. And I'm hoping that that will run and run. And on the back of that, we will actually generate one of the main impetus of what founding it actually is to generate publicly accessible things across countries that will be a major result. So, looking into the hopefully intermediate, shorter, intermediate term future.

Dr Annalise Rahman-Filipiak:

You just asked a question or made a comment that triggered a question in my mind about other countries. What does the diagnosis of PPA look like elsewhere? So, maybe beyond the Western world, for instance.

Professor Jason Warren:

It's a massive issue for the field. The bias that exists because of the history, the modern history of its rediscovery has been dominated by the English-speaking world. And there's a huge over-representation of English in the literature and in terms of our understanding of these diseases. And what we're starting to see now are direct comparisons between English PPA and for example, Italian speaking PPA, which we happen to have been involved with and with a group in Milan, Salvatore Mazzeo's group. And it's revealing really quite important differences between PPA and different languages and presumably in different cultures, which we are even less good at measuring.

So, I mean, it's vital that we do much more collaboration and try to look at what people are using diagnostically across languages because there are huge sways. I mean, if you do a PPA map of PPA research, it's terrifying. There are huge sways of the globe, which are just a completely incognito where we don't look at those languages. I've never seen what PPA is like in those languages and the vast majority of the world's population is there. So, we really need to break that all open. And I think there are some tantalising clues. For example, we think that there are some very unique features to PPA in Japanese, for example, which are not well understood at the moment.

And we really need to get a lot more communication going between neurologists as well as speech and language therapists internationally, but it is a huge issue for the field.

Dr Anna Volkmer:

What I would say though is the PPA Awareness Day was started in the UK last year. And last year in the process of setting up the PPO Awareness Day, we shared some of that with our international colleagues and it ended up being celebrated, let's use the word, across six countries worldwide. And the PPA Awareness Day recordings from 2025, last year's Awareness Day, which span six countries are available on the International Speech and Language Therapy PPA website. And there's six recordings from Greece, Italy, Canada, the States, England, I'm sure I've forgotten one, France. And then there was a later one done in Australia. This year, we have PPA awareness days going across 13 countries worldwide.

So, now also including Norway, we're hoping to have a South American country involved and possibly Germany and Austria. We mentioned the issue of access to speech therapy is an issue across the world and we are engaging the PPA Awareness Day internationally on the same day this year. It will be on the 10th of April. We will all be hosting webinars around about midday, except in Greece, where of course it's Greek Easter on the 10th of April. So, in Greece, they're holding their event a week early, but we're hoping it will be at midday like a fan, like a bunch of fireworks around the world at different times of midday.

But Jackie, I was wondering, we should compare notes really, locally in terms of multilingual people.

Dr Jacqueline Kindell:

I'm thinking that exact question, actually Anna. Yeah.

Dr Anna Volkmer:

I mean, in London, I still hear stories of people not being referred to speech therapy with PPA because they don't speak English as a first language or they spur multilingual. Do you hear that in the north of England as well?

Dr Jacqueline Kindell:

Yeah, I think so. Yeah. But also I think just access to dementia diagnosis more generally is different as well, isn't it? So, it's part of a broader picture, isn't it? And then how services are configured within that really, I think. And so, people when they come are often, not always, but sometimes really quite late and some of those opportunities are missed, I would

Dr Anna Volkmer:

Say. We did do a study at UCL, we asked 10 family members and people living with a diagnosis of rare dementia. So, we included non-language-led dementias about the difficulties they had accessing diagnosis and support. We had to be quite purposeful though because we ended up purposive, I think is the research term, because we had to recruit people to that study who we had already gotten to us, but they said exactly these things, these clinical experiences that Jackie and I described, they said the same.

There were things like stigma within their own communities, their own families, and also within the healthcare profession and within the healthcare community, but also between the people living with it and the way they interacted. So, it's a complicated sociopolitical situation. So, we're continuing that programme to try and raise awareness and also support access.

Dr Annalise Rahman-Filipiak:

That's fantastic. And I'm excited to hear more about it. Bringing it back down to this patient and family experience question, is there research on the best timing to start speech and language therapy beyond as early as possible? Jason, what are your thoughts?

Professor Jason Warren:

Yeah, yes, as early as possible. And in fact, where possible, we really like to involve speech and language therapy in the diagnostic pathway, and that's built into our clinic, but unfortunately it's not always feasible. So, I guess I defer to Anna and Jackie, but I guess most of the roles of speech language therapy is still in post-diagnostic support, and that should definitely be offered at the first time that we diagnose someone. And I think I won't presume to steal their thunder, but I think it's true that the ways that it can help do differ over the course of the illness, but Jackie and Anna might elaborate on that.

Dr Anna Volkmer:

Yeah, we've certainly done lots of research on time Framing. It's lots and lots of qualitative research. We've done interviews and focus groups and people with lived experience with PPA and their family members all agree that they'd like to access the services as early as possible. And to quote one of my client's wives, she said that when her husband started, she thought her husband had fallen out of love with her. And then she noticed symptoms and they went and they got a diagnosis and he got a diagnosis of PPA and she thought, "Well, I have to stay with him." And then she saw a speech and language therapist and realised that he'd always been in love with her.

It's just the way he communicated had changed and she wished she'd seen a speech therapist even before diagnosis.

Dr Annalise Rahman-Filipiak:

Jackie, I'd love to hear your thoughts. I do want to make one quick comment, Anna, about what you just said. I feel like there's a theme that's come up commonly on this podcast and others about the importance of involving lived experience in all of your research studies and really the richness of qualitative research, what that brings to compliment our quantitative study. So, thank you so much for sharing that quote and that story. I mean, very, very powerful. Jackie, I'm wondering from your perspective and the patients that you work with, we know that these conditions develop and manifest over many years, even decades.

And I can see that working with a speech and language therapist, we've talked about there's access challenges and that there would be some significant burdens both on the side of the clinical team and on the side of the patients and the families. How does that work? How does that play out with your patients?

Dr Jacqueline Kindell:

Yeah. So, I think that's an interesting question, isn't it? And I think for me, it's about configuration of dementia services more broadly for all of the team. So, sometimes people say that, "Oh, it's going to cost a lot having this speech therapist and all these sessions you're going to be doing." And you kind of go, "Well, it's not configured like that." It's not configured like that for community of psychiatric nurses visiting people with dementia or occupational therapists or the rest of the team. So, I think for me, it's about how we configure services and then how we get the right people.

And in the NHS, we have this saying, is the right people with the right skills in the right place at the right time. And that's making sure that at points of their journey, that people are going to have support for whatever their need is at that point in time, isn't it? So, I think when we're talking about people with language-led dementias, primary progressive aphasia, presuming you've been given your diagnosis at an early stage, then the post-diagnostic process is going to involve understanding of language by definition, isn't it? By absolute definition.

So, if you want to explain what semantic variant or semantic dementia, as we sometimes call it locally, you've got to really understand semantics, haven't you? You can't really explain that without understanding what that is. And if you're talking about a grammatism, well, that's actually... So, some of these things are quite techy, aren't they, in terms of understanding underlying language impairment? So, if you look across your team and you kind of think, who's got that skill is quite clearly the discipline that's been trained in linguistics, which is your speech and language therapist, isn't it? And I think that argument, it goes for all things, doesn't it really?

So, that if people need help with managing activities of daily living, they need to get an occupational therapist, don't they? But the OT's not going to be involved forever necessarily, constantly visiting, checking that you've got... They'd be involved and they'd help you out during that period, your adaptation, and then they'd just kind of back off and might be called in again in the future and speech therapy is exactly the same. So, you kind of get involved, a transition or a point where people might need help with a particular thing, whether it's a post-diagnostic thing or training the care partner around communication or an issue around eating, drinking, and swallowing.

And you'd work with them to provide the advice for adaptation at that point. And that might be... Sometimes you go and it might be one session or it might be four sessions, and then you'd kind of come away again, wouldn't you? So, you kind of dip in and dip out across the journey of dementia. But that's how we configure services more broadly, don't we? And that's kind of underpins our dementia strategy in the UK where people have to have that kind of timely support.

And the idea is that if we offer that support, then it reduces people needing additional things because things have all become unravelled and they need extra help from the health service because somebody's become dehydrated or it reduces people going into care because they can manage better. So, that's the foundation for our whole dementia strategy. And for me, these people have got language problems and the dementia strategy. So, if we want to be thoughtful about what their issues are, for me, it's a natural part of that equation really. So, I think it's different from stroke where you might have lots of intervention early on.

When I worked, it's a very long time since I've worked in stroke, but when I worked in stroke, you'd see people a number of times a week, and still people do that in inpatients. So, many appointments early on, but our appointments are spread out over the... So, actually if you added them up, it probably wouldn't be that many appointments at all, but actually it's spread over a longer period. So, it's very much like we would have dementia or other progressive neurological conditions. We kind of dip in and sort and then we back off again. That's the thing I'd say.

Dr Anna Volkmer:

Can I underpin that with some research as well? So, I just thought about this. We've mentioned qualitative research. We've mentioned patient and public involvement. I dropped in the odd RCT. We've talked about surveys. We did a health economic study that's currently under review, and we asked people with PPA and their family members across the UK about that we did what was called a discreet choice experiment, which is a health economics methodology. And basically what we found was that people don't expect continuous speech and language therapy in a leisurely fashion in their homes.

What they really want is what they said they want, they told us they prioritised above anything else, is they quite happily see a speech therapist on teletherapy even, and as long as they were a speech and language therapist who knew about PPA. So, they quite happily just have a few sessions every so often, let's say, with an expert speech therapist who knows about PPA on teletherapy. So, we're not talking about huge amounts of thousands of pounds, we're talking about a few hundred pounds, a few sessions over say several years.

Professor Jason Warren:

Can I make some points from a neurological standpoint? So, for one really, really important thing we try to get across, but which there's a long way to go on the messaging is that aphasia is totally colonised by stroke, which of course is understandable because if you looked at everybody coming along with aphasia, 99 out of a hundred will have had a stroke for that. But the problem is that if you happen to be the unlucky hundredth person that's got PPA, the models for stroke do not apply to you.

And this has not helped unfortunately by high profile messaging, which likes to term PPA aphasia, because it's nicer to say that than to say that someone has dementia, but gives very misleading impressions about prognosis, about what people's needs are at a given point in time. And this is an evolving situation in stroke, as Jackie rightly says, you have an intensive kind of early intervention model because you expect the brain's natural recovery and plasticity to kick in and help. That is not happening, at least not nearly to the same extent in PPA, and the needs are going to be evolving indefinitely really.

And with this argument about economics, I think what really we want to see, which is really difficult to implement, but we want, is for speech and language therapy, like other forms of therapy and dementia, to be both reactive and proactive so that it's flexible. And if it is that, then it quickly pays for itself. Because if you think about relatively simple interventions from a speech and language therapist that improve communication, how much money that might save in terms of wasted investigations, wasted procedures, people not getting the care they need until maybe those care needs are much escalated. Communication impacts all aspects of care. So, facilitated communication quickly pays for itself.

So, I think it's a really difficult health economic model because on the one hand, you're trying to factor in therapists' time, they're expert practitioners and all that, so they're quite expensive, but it's much harder to weigh in what the true savings are. And this is a message that we fight to get across.

Dr Annalise Rahman-Filipiak:

Those are such excellent points. And again, this theme keeps coming up about the multiple roles that speech and language therapists play, not only in directly caring for and treating the patients, but advocating for them, communicating really complicated nomenclature or concepts to patients, families, and maybe even to other providers. So, really diverse roles that all of you play. So, now let's move on and talk more about the awareness campaign. So, we talked a little bit about this, but Anna, I'd love to ask you, what made you start this PPA awareness campaign? You talked a bit about it, but what was the impetus for you?

Dr Anna Volkmer:

So, I was designing a randomised controlled trial and running a randomised controlled trial. And I mentioned earlier that during the design of that trial, people with lived experience were saying to us that this is a lovely trial. It's really important. We were looking at communication partner training, so working with couples. They said, "But how do we even access speech therapy? How do other people access speech therapy? You need to do some research on that and we'd like to help. You need to design a care pathway." So, we decided to collaborate with Discover who are charity, the only speech therapy charity.

We collaborate with Rare Dementia Support and also this year, we're collaborating with Royal College of Psychiatry and in the UK who have a register of a large percentage of our memory clinics. And we also are collaborating with the Royal College of Speech and Language Therapy. So, building a network with trusted organisations and then working with a group, a much wider group of people with PPA. Last year we co-produced a logo, our key messages. We ended up actually also co-producing a series of mini awareness campaigns. We know we need to influence the public, but we also need to influence referrals. We need to influence other speech and language therapists.

We need to influence student speech and language therapists. We need to influence several different people. So, we've been celebrating many awareness campaigns leading up to the PPA awareness day. So, we co-produced that last year and then we evaluated the impact. We know that we can't change health behaviours, but we know we can change awareness and knowledge. That's what an awareness campaign can do. So, we explored that with feedback and we did also look at our activity, how many people we were hitting. And across the six international campaigns, we had hundreds of attendees in every webinar around those six countries who participated last year.

In fact, we had over 700 registrants at the UK event and we had thousands and thousands of engagements on social media, but our feedback really showed that what the main thing that changed was people's awareness. Annalise, you said it about the breadth of our role. And that's the kind of thing that people, that's what developed, that people realised that perhaps their misconceptions around what traditional speech therapy might be, might not be the only thing we offer, and that referrals, people with lived experience were developing that expansive knowledge. So, I've kind of told you what inspired me and then how we did it, and then we need to keep doing it.

Dr Annalise Rahman-Filipiak:

Incredible. Jason, who do you think needs to know about this very, very broad role of speech and language therapy in PPA? Who else?

Professor Jason Warren:

Well, we really want everyone to know about it, but I would say from a medical perspective, we want anybody that's involved in the diagnosis of dementia to know about it. And really, obviously, well, maybe not obviously, but clearly memory clinics. And as Anna pointed out in the UK, that that landscape tends to be led mainly by old age psychiatrists. And of course, it may be geriatricians or gerontologists in other countries, et cetera, other specialties, but whoever's involved, certainly in running memory clinics, clearly neurologists need to know more about it as well, what role it has to play.

And GPs, because even though they may only have one person with PPA that they see in their practise, who knows, it's the same principle that you want the GP to be able to pick up on the one life-threatening case of headache that they see come through their door. So, you really want them to pick up that this person has unique needs and refer them appropriately and then be able to take charge of the coordination of care. So, I'd say certainly all those medics need to know about it. And I'd say with respect to neurologists, I suppose as the group that I know best, there are a couple of really key things to try and get across to them. And it's really based around current misconceptions.

I mean, one misconception that they have we have to fight is that speech and language therapy essentially assess swallowing, which is really big and important and vital part of what they do, but only one part of it. And the other kind of related perception is this sort of nihilistic view that, well, you can't really do anything. You can't give people with dementia training. So, what's really the point? And to get across that there are fundamental, basic everyday communication aids and strategies that are really going to make people's lives different, which the speech and again therapists can deliver.

So, I think it's teaching them that we have speech and language therapists who are taking interest, but it's also pointing out to them why it's actually going to be practically useful for them to refer.

Dr Annalise Rahman-Filipiak:

Well, you heard it here, people. Make sure you forward this episode to your colleagues in different disciplines. Jackie, I'd like to end with you on this question. From your perspective, do you feel there's been a change in awareness in the role of speech and language therapy, and where's that going?

Dr Jacqueline Kindell:

Yeah, I think there has. I'm positive. I think there has. I think the penny is beginning to drop that we don't just practise people. Do you know what I mean? That actually we do that broader kind of role. And I think that's absolutely crucial, isn't it? That broader kind of everyday communication role that we have. So, I think in our own profession, and I can think back, I had my first dementia placement in the '80s, so I can certainly say that things have changed since that time. And I think within our own professionals, speech and language therapists, there were some barriers within our own profession as to whether we should or shouldn't. As Jason said, it was very stroke focused.

So, I think that's changed. People have realised there's a broader group. I think what I would like to see, perhaps building on Jason's point there is that sort of local services trying to work out where some of the blocks are for people getting to speech and language therapy. Because sometimes, as Anna said there, it could be people's perceptions, but I think sometimes it's just because services are organised in a certain way and then kind of referrals give up because it's quite difficult. So, I think people that commission or organise services should... I'd like them to have an awareness of to think about.

Because if they haven't got a speech therapist that's a specialist, how are they going to get access in the main speech therapy department that's based in the hospital, the community? And why don't people get from there to there? What are the blocks along the way? And sometimes it's because that service does stroke and that service does neurology. And is PPA a neurology or is it a dementia and is it... And locally, we don't do dementia. It gets all quite complicated. And so, that's also about awareness, isn't it? Because sometimes the referral wants to refer and the speech therapist wants to take, but there's these other barriers in the middle somewhere.

And I think that's where awareness can start making you think, no, hang on, let's see if we can't work this through. And that doesn't actually take any more money to work those pathways through. It's just about looking at those basic everyday things and those referral processes, I think. So, I do feel things are changing. They're not where I want them to be, but perhaps we'll get there, get there soon. And the PPA awareness day is going to help that definitely. So, it's keep pushing, isn't it? And keep pushing it from different angles really with all these different stakeholders we've got around that can improve that kind of awareness really, I'd say.

Dr Annalise Rahman-Filipiak:

Really excellent points from all of you. Okay. If you do not know much about PPA or you do, but you want to know more, please sign up for the 2026 PPA Awareness Day on April 10th. You can find the registration link in the show notes for today's episode. But Anna, to remind us, what's the focus of this year's awareness day, and is there anything else you want to tell us before we sign off?

Dr Anna Volkmer:

I think to emphasise the focus is that people with primary progressive aphasia experience speech, language, and communication difficulties as they main and leading symptom and speech therapy early referral to speech and language therapy as early as possible is the main message. And the main message we're giving this to is are the people who do the diagnostic stuff. So, that's why we're collaborating with the Royal College of Psychiatrists in England, the Royal College of Speech, and Language Therapy. As I mentioned, Rare Dementia Support and discover a charity, speech therapy charity that work with PPA.

That's in the UK. Around the world, we're collaborating with the National Aphasia Association in the States, with Australian Aphasia Association in Australia and Speech Pathology Australia. We're collaborating with organisations in Greece, Brussels, France, Switzerland, Norway. This is a test for me, by the way, to remember all the Canada. We've got Quebec and Toronto as locations in Canada. We have events happening in Austria, as I said. Oh, goodness. I know I've missed other places, but please do sign up. And if you're in another country and you can't find the relevant link for your country, get in touch and we'll try and connect you.

Dr Annalise Rahman-Filipiak:

Thank you so much for that overview. Any final thoughts, Jason, Jackie?

Professor Jason Warren:

I'd just like to have a brief message for any medical colleagues that might be listening in, just to say that if you do see somebody coming through your clinic, your surgery with word finding difficulty, most of them won't have PPA, but they might. So, do please think about it. There are some resources that we can make available. They're public domain designed at non-expert medical audiences in terms of the sort of steps you can take to diagnose them. But in particular, think very early about your friendly local speech and language therapist.

Dr Annalise Rahman-Filipiak:

Well, thank you all so much for your time. I think we've had a really fantastic discussion here. And some take home points for me are just the importance of a very early thought about PPA on your differential list if you're a clinician and reaching out and consulting early with your speech and language therapist colleagues, because it certainly seems like there's many cases of late diagnosis and misdiagnosis that have massive implications, not only for patients and their families, but broader economic and social implications as well. We heard really compelling discussion about the many roles that speech and language therapists play in that multidisciplinary team.

So, not only in the diagnosis process, but conveying results, explaining results, and really meeting with patients and families across all stages of their disease journey or diagnostic journey. We talked about some of the important considerations for how we might expand speech and language therapy, as well as the broader sort of dementia care capacity across different cultures, across non-English speaking cultures and areas. And finally, we talked about this fantastic campaign, the PPA Awareness Day 2026, which I will be very excited to tune in for. So, I want to end by just saying thank you so much to our wonderful guests.

So, Professor Jason Warren, Dr. Anna Volkmer and Dr. Jackie Kindell for sharing your experiences and your perspectives today. As we mentioned, the links to both last year's Awareness Day resources and the signup for this year's PPA Awareness Day webinar will be included in the show notes. Thank you all for listening. I'm Annalise Rahman-Filipiak, and you've been listening to the Dementia Researcher Podcast. Everyone, thanks so much.

Dr Anna Volkmer:

Bye. Thank you.

Dr Annalise Rahman-Filipiak:

Hey, thank you.

Voice Over:

The Dementia Researcher Podcast was brought to you by University College London with generous funding from the UK National Institute for Health Research, Alzheimer's Research UK, Alzheimer's Society, Alzheimer's Association, and Race Against Dementia. Please subscribe, believe us a review, and register on our website for full access to all our great resources. Dementiaresearcher.nihr.ac.uk.