- [Announcer] The "Dementia

Researcher Podcast,"

talking careers, research,

conference highlights,

and so much more.

- Hello, and welcome to the

"Dementia Researcher Podcast."

My name is Annalise Rahma-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.

(cheerful music)

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 from Manchester University.

Hi, Jason, Anna, and Jackie.

- Hi.

- Hello, guys.

- Hello.

- 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.

- Yeah, so I'm Jason.

I'm a clinical neurologist.

And I run a clinic with

a particular interest

in primary progressive aphasia here

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 in dementia.

- Fantastic. Anna?

- 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.

- Thanks for being here.

And lastly, Jackie?

- 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 in

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 language 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,

'cause people come to us with PPA

at all different points

within our pathway.

And, you know, we have to

provide the care to them

at all of those different areas, really.

- So glad to have you all.

(cheerful music)

- 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?

- 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, 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-recognized 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,

Hence, 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.

- Can I ask a follow-up question to that?

So how long on average does

it take for an individual

to get a diagnosis?

- 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,

you may be 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.

- Not at all.

Thanks for giving us some range there

to ground this conversation.

Anna, 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?

- 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,

or a motor function.

We know that people

with non-fluent variant

primary progressive aphasia,

their symptoms are led by

a motor speech disorder

and 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 are working with,

especially the people with

language difficulties,

might find some of their

constructs around the nomenclature.

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 Warren,

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, though, you

might like to add to that.

Is that a fair description of what I do?

Do you wanna refine my description?

- Yeah, that's a modest

description of what you do, Anna.

I mean, speech and language therapy,

I'll say for the first

time in 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 in some ways, that's

unfortunate, of course,

but in other ways, it's

a major opportunity,

which, overall, we don't make enough of.

- 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?

- 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 neurologists,

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 complementary picture,

and also to be able to

tell us what someone

is actually doing in their

daily live, beyond tests,

which sometimes can be the

whole clue to the diagnosis.

- 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?

- 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, you know,

long-standing speech and

language therapy practitioners,

posts where people have

been for many years,

and then other places

where there's, you know,

really challenging access, really.

And I think, well, 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, you know,

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, you know?

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, you know,

we've got some amazing areas

with some really innovative practise,

which is very heartening.

You know, speech therapists

that are very involved

with looking, you know,

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,

they've taken their speech therapist,

and they've trained them

at as a 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,

(laughs) that's what you do.

That's what knowledge you've got."

And I think, you know,

that innovation is 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?

- It does.

I was just gonna add, 'cause

we did a survey back in 2016,

a UK-wide survey, of speech

therapy practise in PPA.

And then Jackie and I run,

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.

You know, the examples

that Jackie has mentioned

are examples that, 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 Gallee is a speech

and language pathologist

in Washington, in 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.

We are 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 are 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?

- No, I think that's it, isn't it?

I think it's just that

kind of variability,

really, isn't it?

So, you know, 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 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,

you know, about, you know,

how their language might deteriorate,

or how their writing would be affected.

They hadn't put advance planning in

in terms of some of those things.

So it was really quite

difficult being in that space,

seeing people in quite,

(chuckles) you know,

not a large city, but, you

know, differences in experience.

And I think it's not a good thing, is it,

when you've got that.

So we've got, you know, 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,

'cause by raising that

awareness, you know,

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, you know,

and they work at a clinic half day a week,

and then put all that,

actually, that, "We need more of that,"

you know, and then

that's half a, you know,

then the halftime posts,

then a full-time post,

and then that services

become two 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.

- 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.

- Well, the first thing,

that's good question,

the first thing that

springs to my mind is,

in our International Speech

and Language Therapy network,

we've got a researchers from

25 countries worldwide now.

And one of the things that we've done

is recognise the need for more resources.

So we are 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,

'cause there is some research,

there are some studies going on,

there are randomised

control trials, one or two,

on speech and language therapy,

that are trying to influence policies.

We might be leading one at UCL,

but they're, you know,

they're in their 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, you know,

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,

you know, 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 are trying to increase awareness.

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.

- I have lots of specific questions,

but that's a really helpful start.

- 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 involved in

our webinars and meetings.

And Anna and I are involved with that.

But also, there will be,

I think, other, you know,

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 we'll have over 100 neurologists

from many different countries,

about 30 different countries,

all of whom have an interest in a 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 founding it, actually,

is to generate publicly

accessible things across countries

that we will be major resource.

So looking into the,

hopefully, intermediate,

short-term, intermediate-term future.

- 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?

- It's a massive issue for the field.

The bias that exists

because of the history,

the modern history of its rediscovery,

is being dominated by the

English-speaking world.

And, you know,

there's a huge

overrepresentation 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 in 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 swathes.

I mean, if you do a PPA

map of PPA research,

it's terrifying.

There are huge swathes of the globe

which are just a completely incognito.

We don't look at those languages,

have never seen what PPA

is like in those languages.

And, you know,

the vast majority of the

world's population is there.

So we really need to break that all open.

And I think, you know, 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.

- 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 PPA 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, we're also including Norway.

We are hoping to have a South

American country involved,

and possibly Germany and Austria.

You know, 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.

And 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 are 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,

what locally, in terms

of multilingual people...

- I was just thinking that

exact question, actually, Anna.

- Yeah.

I mean, in London, I still hear stories

of people not being referred

to speech therapy with PPA

'cause they don't speak

English as a first language,

or they spoke multilingual.

Do you hear that in the

north of England as well?

- Yeah, I think so, yeah.

But also, I think,

just access to dementia

diagnosis more generally-

- Exactly.

- 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,

are really quite late.

And some of those opportunities

are missed, I would say.

- We did do a study at UCL.

We asked 10 family members

and people living with the

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, 'cause we ended up,

purposeful, I think, is the research term,

'cause we had to recruit

people to that study

who had already got to us, 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,

and within their own

communities, their own families,

and also within the healthcare profession,

and, you know, 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 are continuing that programme

to try and raise awareness

and also support access.

- 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?

- 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, you know,

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,

speech and language therapy

is still in post-diagnostic support.

And that should definitely

be offered at the first,

you know, 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.

- Yeah, we've certainly done

lots of research on timing.

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 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.

- Jackie, I'd love to hear your thoughts.

I do wanna 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,

you know, to complement

our quantitative studies.

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?

- Yeah, I mean,

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, you know,

"It's gonna cost a lot

having this speech therapist,

and, you know, all these

sessions you're gonna 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, you know, in the

NHS, we have this saying,

it's the right people,

with the right skills,

in the right place, at the right time.

And that's making sure that,

you know, at points of their journey,

that people are gonna 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, you know,

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,

you know, 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.

You know, and if you're

talking about agrammatism,

well, that's actually,

so some of these things are

quite techie, aren't they,

in terms of understanding

underlying language impairment.

So, you know, if you

look across your team,

and you kind of think,

"Who's got that skill,"

it 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, you know, if people need help

with sort of managing

activities of daily living,

they need to get an occupational

therapist, don't they?

But the OT's not gonna be

involved forever necessarily,

constantly visiting,

checking that you've got...

You know, they'd be involved,

and they'd, you know, help

you out during that period,

your adaptation, and then, you know,

they 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 at 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, you know?

And that might be,

sometimes you go, and

it might be one session,

or it might be four sessions, you know?

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, if we offer that support,

then it reduces people

needing additional things,

because things have all

become unravelled, you know,

and they need extra help

from the health service

because somebody's become

dehydrated, or, you know,

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

in the dementia strategy.

So if we want to be, you know,

if we want to be thoughtful

about what their issues are,

for me, it's just a natural, you know,

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.

You know, when I worked,

it's a very long time since

I've worked in stroke,

but when I worked in

stroke, and, you know,

you'd see people a number of times a week,

and still people do that in inpatient,

so there's 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, you know, it's

spread over a longer period.

So it's very much like we

would have with 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.

- 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

discrete 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 are talking about a few hundred pounds,

a few sessions, over, say, several years.

- Can I make some points from

a neurological standpoint?

So first, 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.

'cause if you looked at everybody

coming along with aphasia,

you know, 99 out of 100 will

have had a stroke for that.

But the problem is that if you happen

to be the unlucky 100th

person that it's got PPA,

the models for stroke do not apply to you.

And this is not helped, unfortunately,

by kind of 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, you know, 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 gonna be

evolving indefinitely, really.

And, you know, with this

argument about economics,

you know, 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 in dementia,

to be both reactive and proactive,

so that, you know, 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,

you know, maybe those care

needs are much escalated,

you know, communication

impacts all aspects of care.

So, you know,

facilitated communication

quickly pays for itself.

So I think it is a really

difficult health economic model,

because, on the one

hand, you're trying to,

you know, 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.

- 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 role

that all of you play.

So now, let's move on and talk more

about the awareness campaign.

(cheerful music)

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?

- So I was designing a

randomised controlled trial

and running a randomised controlled trial.

And I mentioned earlier

that during this design of that trial,

people with lived

experience were saying to us

that this is a lovely trial.

You know, 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?

You know, 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 Dyscover,

who are 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 need to influence the public,

but we also need to influence referrers.

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 at

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 the main thing that

changed was people's awareness.

Annalise, you said it about

the breadth of our role.

(Anna and Jacqueline laughing)

And that's the kind of thing that people,

that's what developed,

that people realised that

perhaps some their misconceptions

around what traditional

speech therapy might be

might not be the only thing we offer,

and that referrers, 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.

- Incredible.

Jason, who do you think needs

to know about this very,

very broad role of speech

and language therapy in PPA?

Who else?

- 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, you know, really, obviously,

well, maybe not obviously,

but clearly, memory clinics.

And as Anna pointed out, in the UK,

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,

you know, 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. (chuckles)

So you really want them to pick up

that this person has unique needs,

and refer them appropriately,

and then be able to kind of 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,

you are sort of, I suppose,

the group that I know best,

there are a couple of

sort of really key things

to try and sort of 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 therapy

essentially assess swallowing,

which, it is a really big and important,

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, you know, to get across

that they're a fundamental,

basic, everyday communication

aids and strategies

that are really gonna make

people's lives different,

which the speech and language

therapist can deliver.

So I think it's teaching them, you know,

that we have speech

and language therapists

who are taking interest,

but is also pointing out to

them why it's actually going

to be practically useful

for them to refer.

- Well, you heard it here, people.

Make sure you forward this episode

to your colleagues (laughs)

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?

- Yeah, I think there has.

You know, I'm positive. I think there has.

(laughs) I think the penny

is beginning to drop,

that we don't just practise

people, 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, you know,

I can think back 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 profession

as speech and language therapists,

there were some barriers

within our own profession

as to whether we should or shouldn't.

You know, as Jason says,

it was very stroke-focused.

You know, 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 kind of work out

where some of the blocks are

for people getting to

speech and language therapy,

'cause sometimes, you

know, 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 referrers give up,

'cause it's quite difficult.

So I think people that commission

or organise services should, you know,

I'd like them to have an awareness

to think about, you know,

'cause if they haven't

got a speech therapist

that's a specialist, now, 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, you know,

that service does stroke,

and that service does neurology.

And is PPA a neurology,

or is it a dementia,

and is it, you know?

And locally, we don't do dementia.

You know, it gets all quite complicated.

And so that's also about

awareness, isn't it?

'Cause sometimes the

referrer 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,

"Now, 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, you know,

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, you know,

but perhaps we'll get

there, get there soon.

And the PPA Awareness Day is

gonna 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.

- Really excellent points from all of you.

(cheerful music)

- 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 wanna tell us

before we sign off?

- I think, to emphasise

the focus, is that people

with primary progressive

aphasia experience speech,

language, and communication difficulties

as their main and leading symptom.

And early referral to

speech and language therapy,

as early as possible, is the main message.

And the main message we are giving this to

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 Dyscover, a charity,

it's a 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 is 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 are in another country,

and you can't find the

relevant link for your country,

get in touch, and we'll

try and connect you.

- Thank you so much for that overview.

Any final thoughts, Jason, Jackie?

- I'd just like to have a brief message

for any medical colleagues

who 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.

- 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,

you know, 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 wanna 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 Rahma-Filipiak.

And you've been listening

to the "Dementia Researcher Podcast."

Everyone, thanks so much.

- Bye. Thank you.

- Bye. Thank you.

(cheerful music)

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