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Speech and Language Therapy in Primary Progressive Aphasia · Dementia Researcher Vodcast

• 0:00
  - [Announcer] The "Dementia Researcher Podcast,"
• 0:02
  talking careers, research, conference highlights,
• 0:05
  and so much more.
• 0:08
  - Hello, and welcome to the "Dementia Researcher Podcast."
• 0:11
  My name is Annalise Rahma-Filipiak.
• 0:13
  I'm a neuropsychologist and assistant professor
• 0:15
  at University of Michigan.
• 0:17
  And I am pleased to be back to host today's episode.
• 0:21
  Today, we will be talking about the role of speech
• 0:23
  and language therapy in primary progressive aphasia.
• 0:26
  (cheerful music)
• 0:32
  Many of you will know that primary progressive aphasias,
• 0:35
  or PPA, are a group of language-led dementias associated
• 0:39
  with Alzheimer's disease and frontotemporal dementia.
• 0:42
  The main and leading symptom
• 0:43
  is speech and language difficulty.
• 0:45
  And the main treatment for these symptoms
• 0:47
  is speech and language therapy.
• 0:50
  This year marks the second PPA awareness campaign,
• 0:53
  and the focus of which is referral to speech
• 0:56
  and language therapy early.
• 0:58
  So in honour of this important awareness effort,
• 1:00
  this episode will highlight research on early diagnosis
• 1:04
  and care pathways to speech and language therapy.
• 1:08
  I am joined by three wonderful guests
• 1:10
  who specialise in this topic, Jackie, Jason, and Anna.
• 1:13
  First, Professor Jason Warren,
• 1:15
  who is a professor of neurology at University College London
• 1:18
  and the National Hospital for Neurology and Neurosurgery.
• 1:21
  Jason is a world-leading behavioural scientist
• 1:24
  in the field of PPA.
• 1:27
  We are also joined by Dr. Anna Volkmer,
• 1:29
  also from University College London
• 1:31
  and the National Hospital for Neurology and Neurosurgery.
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  Anna is an associate professor
• 1:36
  and consultant speech and language therapist.
• 1:39
  And last, but not least,
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  we are joined by Dr. Jackie Kindell,
• 1:43
  another speech and language therapy researcher and lecturer,
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  but from Manchester University.
• 1:49
  Hi, Jason, Anna, and Jackie.
• 1:51
  - Hi. - Hello, guys.
• 1:52
  - Hello.
• 1:53
  - Thank you so much for joining us today.
• 1:55
  To start off, could I ask you each to introduce yourselves?
• 1:59
  I'll start with you, Jason.
• 2:01
  - Yeah, so I'm Jason.
• 2:03
  I'm a clinical neurologist.
• 2:06
  And I run a clinic with a particular interest
• 2:09
  in primary progressive aphasia here
• 2:11
  at the National Hospital for Neurology and Neurosurgery
• 2:13
  on Queen Square.
• 2:15
  And I'm also a brain researcher.
• 2:18
  And the particular interest
• 2:19
  of my research group is in developing new ways,
• 2:23
  new markers of diagnosis for primary progressive aphasia,
• 2:28
  and also, more broadly, hearing in dementia.
• 2:31
  - Fantastic. Anna?
• 2:34
  - Perfect. Thank you.
• 2:35
  My name is Anna Volkmer.
• 2:37
  I'm a speech and language therapist.
• 2:40
  I've worked for 25 years clinically
• 2:42
  as a speech and language therapist,
• 2:44
  but I'm also an academic, a researcher.
• 2:47
  And my research and my clinical work has really focused
• 2:51
  on supporting people with primary progressive aphasia
• 2:54
  and their family members,
• 2:55
  as well as people with other types of dementia,
• 2:58
  and really understanding what we can do
• 2:59
  in terms of interventions
• 3:02
  and helping them to live well for longer.
• 3:05
  - Thanks for being here. And lastly, Jackie?
• 3:08
  - Hi, I'm Jackie. I'm also a speech and language therapist.
• 3:12
  I've recently moved to the University of Manchester.
• 3:15
  But before that, I've kind of had the privilege
• 3:18
  of a long career specialising in dementia
• 3:21
  as a speech and language therapist.
• 3:22
  So I've always worked in older adult mental health,
• 3:26
  so people with dementia in memory clinics or on the wards,
• 3:30
  or the community mental health team.
• 3:32
  And in that service,
• 3:34
  you would work with, obviously, communication,
• 3:36
  but eating, drinking, swallowing issues,
• 3:39
  all kinds of dementia.
• 3:40
  But obviously, part of that,
• 3:42
  and a significant part as a speech and language therapist,
• 3:44
  will be people with primary progressive aphasia
• 3:47
  or other sort of language-led dementias, really.
• 3:49
  So I'm interested in the whole spectrum,
• 3:52
  from the earliest through to the latest stages,
• 3:55
  'cause people come to us with PPA
• 3:57
  at all different points within our pathway.
• 4:01
  And, you know, we have to provide the care to them
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  at all of those different areas, really.
• 4:06
  - So glad to have you all.
• 4:07
  (cheerful music)
• 4:13
  - To kick us off, I'd like to talk
• 4:15
  about why an early diagnosis may be difficult in PPA.
• 4:19
  As we already touched on during the introduction,
• 4:21
  getting a prompt diagnosis is often an issue for people
• 4:24
  with PPA, but why is this?
• 4:27
  Jason, I'd like to start with you, if possible.
• 4:29
  From a medical perspective, what is it about PPA
• 4:33
  that might make it difficult to diagnose?
• 4:36
  - Yeah, so I think it's difficult, probably,
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  for three main reasons, really.
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  So first of all, it's something
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  that strikes an incredibly complex brain function,
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  and it's a brain function that is extremely diverse.
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  You think about all the many ways
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  that we are called upon to communicate in daily life,
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  and most of those can be affected
• 5:00
  by primary progressive aphasia.
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  So it can come on
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  in a bewildering variety of different ways.
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  And it's also, those functions are really quite close to us.
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  I mean, language is one of the things that makes us human
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  and defines us as individual humans.
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  And it's sometimes really difficult
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  to get at things that are so close to us.
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  I think the second major issue
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  is that it's not well-recognized by clinicians,
• 5:26
  certainly not by neurologists and by doctors,
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  but probably not by, more widely,
• 5:30
  other varieties of clinicians.
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  And I think that this is partly
• 5:35
  because we've got an image of dementia, which is, at large,
• 5:39
  which basically says that dementia
• 5:41
  is memory failure of older people,
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  Hence, and that doesn't really apply
• 5:46
  to people with primary progressive aphasia.
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  And the third main reason is that we,
• 5:51
  even if it is suspected,
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  don't have good tools to diagnose and measure it.
• 5:57
  Many of the instruments that we use, the diagnostic tests,
• 6:01
  the cognitive tests that we use to diagnose dementia,
• 6:03
  are really geared toward memory
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  and other types of problems,
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  not toward language and communication,
• 6:10
  and certainly not toward communication
• 6:12
  as we use it in everyday life, really.
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  And even brain scanning, which is incredibly informative,
• 6:18
  or can be incredibly informative,
• 6:21
  even that can lack sensitivity for picking up the diagnosis.
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  So it's very easy for people to either not be diagnosed
• 6:28
  or to be sent down a rabbit hole of misdiagnosis.
• 6:33
  - Can I ask a follow-up question to that?
• 6:35
  So how long on average does it take for an individual
• 6:40
  to get a diagnosis?
• 6:43
  - It takes much too long.
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  And we know this both from sort of a clinical hunch,
• 6:48
  but it's a hunch that's been now substantiated
• 6:51
  with actual surveys, measurements.
• 6:54
  So the senior postdoc in my group, Chris Hardy,
• 6:58
  has studied this in detail,
• 7:00
  and has done a live survey of caregivers and partners
• 7:05
  for people with primary progressive aphasia.
• 7:08
  And asked them, among many other things,
• 7:10
  to recall how long it took them to get a diagnosis.
• 7:12
  And it's several years in most cases.
• 7:16
  And in some types of primary progressive aphasia,
• 7:18
  you may be even as long as five years on average.
• 7:22
  And that tends to be,
• 7:24
  which I'm sure we'll talk about, the semantic variant,
• 7:27
  which is the one that doesn't obviously affect
• 7:31
  the way language sounds, the way someone talks,
• 7:34
  can go disguised or unsuspected for a very long time.
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  And if you think about someone living with uncertainty,
• 7:41
  not really being sure what's happening to them
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  or to their loved one, for five years or longer,
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  I mean, that's not a satisfactory situation.
• 7:50
  - Not at all.
• 7:51
  Thanks for giving us some range there
• 7:53
  to ground this conversation.
• 7:55
  Anna, I'd like to turn to you.
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  Can you explain to us then
• 7:58
  what the role of speech and language therapists is
• 8:01
  in supporting a diagnosis of PPA?
• 8:04
  - Absolutely.
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  I work with Professor Warren,
• 8:07
  Professor Jason Warren, actually,
• 8:09
  in our diagnostic clinic
• 8:11
  at the National Hospital at Queen Square.
• 8:14
  And my role is to support the diagnostic process
• 8:18
  through assessments.
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  So, for example, I often will become involved,
• 8:23
  or separately assess, sometimes we jointly assess,
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  and sometimes I separately assess people's,
• 8:29
  or a motor function.
• 8:31
  We know that people
• 8:32
  with non-fluent variant primary progressive aphasia,
• 8:37
  their symptoms are led by a motor speech disorder
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  and apraxia, as well as an agrammatism.
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  So my role would be to pick apart
• 8:47
  whether somebody's presenting with a motor speech disorder
• 8:51
  versus somebody perhaps who has a logopenic variant
• 8:54
  of primary progressive aphasia,
• 8:55
  when it's more to do with word retrieval,
• 8:58
  versus somebody with a semantic variant,
• 9:00
  where it's looking at word meaning.
• 9:02
  So part of my job role would be doing some language testing
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  and some motor speech testing
• 9:08
  alongside Professor Warren and the medical team.
• 9:12
  I would also, in that conversation,
• 9:15
  be supporting the person to also understand their diagnosis,
• 9:19
  if and when we get there.
• 9:21
  We often find that some of the clients we are working with,
• 9:25
  especially the people with language difficulties,
• 9:27
  might find some of their constructs around the nomenclature.
• 9:33
  I said that word wrong.
• 9:35
  I always stumble across that word. Well, there you go.
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  These jargonistic words are difficult
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  for people to understand.
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  They're often quite abstract. They're not visible.
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  And sometimes part of my role will be
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  to perhaps support the person
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  with the language difficulty and the partner
• 9:52
  to make sure they followed the diagnosis giving,
• 9:56
  and then also talk about support.
• 9:58
  Perhaps that's my most important role,
• 10:00
  actually, in that interaction.
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  And we know from the research that we've done
• 10:06
  with Professor Jason Warren,
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  and in my lab, in the Better Conversations Lab,
• 10:11
  where we've asked people about their experiences
• 10:14
  of having primary progressive aphasia,
• 10:16
  and the support they've got afterwards,
• 10:19
  and the access to speech therapy.
• 10:20
  They often have said that it's really difficult
• 10:24
  to find a route to speech therapy.
• 10:27
  So often, my job role is to make sure
• 10:29
  that people just don't drop off a cliff,
• 10:31
  that they feel supported.
• 10:33
  I think Jason, though, you might like to add to that.
• 10:36
  Is that a fair description of what I do?
• 10:38
  Do you wanna refine my description?
• 10:41
  - Yeah, that's a modest description of what you do, Anna.
• 10:43
  I mean, speech and language therapy,
• 10:45
  I'll say for the first time in this podcast,
• 10:47
  is absolutely vital,
• 10:50
  and is far underutilised for various reasons,
• 10:54
  and is really the main treatment that we have
• 10:57
  for primary progressive aphasia at the moment.
• 11:00
  And in some ways, that's unfortunate, of course,
• 11:02
  but in other ways, it's a major opportunity,
• 11:04
  which, overall, we don't make enough of.
• 11:07
  - That is an incredible description
• 11:09
  of what seems like a very multifaceted role that you play.
• 11:14
  As a neuropsychologist myself,
• 11:15
  I just have to say I appreciate the attentiveness,
• 11:18
  not only to the multimodal assessment,
• 11:21
  but also to the feedback process,
• 11:23
  and how that, in and of itself, can be therapeutic,
• 11:26
  and can sort of launch families
• 11:29
  in the right direction or the wrong one.
• 11:30
  So really interesting to hear.
• 11:32
  And I'm sure we'll circle back to this.
• 11:34
  Jason and Anna, it must be useful having support
• 11:36
  from speech and language therapy.
• 11:38
  Is there much research on who should diagnose PPA?
• 11:43
  - There's not nearly enough.
• 11:44
  I mean, it's been, traditionally,
• 11:46
  a field dominated by neurologists.
• 11:49
  And in some ways, that's understandable,
• 11:50
  because neurologists have the province of language aphasia,
• 11:55
  traditionally, in stroke.
• 11:58
  And they're often trained to assess language in that way.
• 12:02
  And they really were responsible for, I guess,
• 12:05
  the initial recognition of primary progressive aphasia,
• 12:07
  which, by the way, dates back to,
• 12:09
  well, at least the 19th century, probably before.
• 12:13
  Obviously, it was called different terms then,
• 12:15
  but there were very clear descriptions
• 12:17
  from neurologists from those times
• 12:19
  that gets periodically forgotten about by neurologists,
• 12:22
  and then rediscovered, as it did about 40 years ago.
• 12:26
  And so I think neurologists have dominated the landscape.
• 12:29
  But I would say, as a neurologist,
• 12:31
  that it really, really needs to be a team effort.
• 12:34
  And the fundamental reason for that
• 12:36
  is that neurologists are quite reductionist
• 12:39
  in their approach.
• 12:40
  It's how they're trained usually.
• 12:42
  And they like to measure things,
• 12:44
  and they really like to focus on what people can't do,
• 12:48
  because that's usually what they use to make a diagnosis.
• 12:52
  But you need to have a speech and language therapist
• 12:55
  to give the complementary picture,
• 12:58
  and also to be able to tell us what someone
• 13:00
  is actually doing in their daily live, beyond tests,
• 13:05
  which sometimes can be the whole clue to the diagnosis.
• 13:09
  - Yeah, that functional impact is so important,
• 13:12
  and much more important to our patients
• 13:13
  than how they might perform on a particular test.
• 13:17
  Jackie, I'd love to bring you into the conversation here.
• 13:20
  Are speech and language therapists regularly
• 13:23
  or always involved in diagnosing PPA in the UK
• 13:27
  or even internationally?
• 13:29
  - No, unfortunately, not.
• 13:31
  It's a very variable picture,
• 13:33
  and I think therein lies the problem.
• 13:36
  So you kind of have these certain centres of excellence,
• 13:40
  or, you know,
• 13:40
  long-standing speech and language therapy practitioners,
• 13:44
  posts where people have been for many years,
• 13:46
  and then other places where there's, you know,
• 13:48
  really challenging access, really.
• 13:51
  And I think, well, in the UK, we call it a postcode lottery,
• 13:54
  so it depends on where you live as to what you get.
• 13:57
  And I think we would all agree
• 13:59
  that's not really a good state of affairs.
• 14:02
  So it's very historical in terms of how services, you know,
• 14:06
  how services have been organised or commissioned.
• 14:10
  So you might go to one locality,
• 14:12
  and they'll have a speech therapist based
• 14:13
  with their memory clinic
• 14:15
  or with their older adult mental health team,
• 14:17
  or their neurology team.
• 14:18
  And I guess that's the other issue, is that in the UK,
• 14:21
  some of the diagnosis is done in psychiatry,
• 14:25
  and some of it's done in neurology,
• 14:26
  and some of it's done in psychiatry,
• 14:28
  then they go to neurology, you know?
• 14:30
  So it's not a simple pathway either.
• 14:34
  So that makes it a bit more complicated.
• 14:37
  But some places, you'll have a few speech therapists,
• 14:39
  and then, literally, next door,
• 14:40
  no speech and language therapists at all,
• 14:43
  and find it very difficult to access that.
• 14:46
  So in the group that I'm involved with,
• 14:49
  in the north of England, you know,
• 14:51
  we've got some amazing areas
• 14:53
  with some really innovative practise,
• 14:55
  which is very heartening.
• 14:57
  You know, speech therapists that are very involved
• 15:00
  with looking, you know, in their memory clinic,
• 15:02
  anyone that's atypical,
• 15:05
  language seems to be the dominant thing,
• 15:06
  they go straight to the speech therapist,
• 15:08
  really clean kind of pathway.
• 15:12
  That works really well.
• 15:13
  We've got another service,
• 15:15
  they've taken their speech therapist,
• 15:17
  and they've trained them
• 15:18
  at as a advanced clinical practitioner.
• 15:20
  So they've had extra training
• 15:22
  from their speech and language therapy post,
• 15:24
  to look at scans or blood tests or whatever,
• 15:27
  to do that additional diagnosis.
• 15:29
  So we've got some really interesting areas of innovation,
• 15:33
  really, and where that's happened.
• 15:34
  I think that's because those services
• 15:36
  have kind of recognised that speech therapists
• 15:39
  have got the underlying neurology training,
• 15:41
  and like you've said, that neuropsychology,
• 15:43
  to be able to kind of pull it out,
• 15:45
  and it's actually part of our training.
• 15:47
  So I think sometimes people don't realise
• 15:49
  what a speech therapist does till you get one,
• 15:52
  and you kind of think, "Oh, (laughs) that's what you do.
• 15:55
  That's what knowledge you've got."
• 15:57
  And I think, you know,
• 15:58
  that innovation is tended to occur in those kind of places,
• 16:01
  but no means is it uniform.
• 16:05
  And I think Anna and I would say
• 16:06
  that replicates internationally, doesn't it?
• 16:08
  - It does.
• 16:10
  I was just gonna add, 'cause we did a survey back in 2016,
• 16:14
  a UK-wide survey, of speech therapy practise in PPA.
• 16:17
  And then Jackie and I run,
• 16:20
  so I'm in the south of England,
• 16:21
  Jackie's in the north, we just alluded to that,
• 16:24
  but we also have a UK-wide group of speech therapists
• 16:28
  who specialise in PPA.
• 16:29
  And we repeated a couple of questions
• 16:32
  from that survey a couple of years ago.
• 16:34
  And where, say, 10 years ago, speech therapists, only 10%,
• 16:40
  less than that, had any kind of care pathway for people
• 16:43
  with primary progressive aphasia.
• 16:45
  And it was really, really patchy.
• 16:48
  On our survey, more recently,
• 16:49
  we had 20% having care pathways.
• 16:52
  You know, the examples that Jackie has mentioned
• 16:54
  are examples that, we know those clinicians,
• 16:59
  and they're people who are much more recent
• 17:02
  in their positions.
• 17:03
  We've also replicated that,
• 17:04
  in an international basis, elements of that survey.
• 17:08
  Jeanne Gallee is a speech and language pathologist
• 17:11
  in Washington, in research.
• 17:12
  And she worked with Jackie and I
• 17:14
  in our International Speech Therapy group.
• 17:16
  And we're seeing really similar patterns internationally,
• 17:19
  if I'm honest.
• 17:23
  We are finding that people aren't, as Jackie said,
• 17:26
  there's no training, and that's internationally,
• 17:29
  there's reduced confidence,
• 17:31
  there's limitations in terms of commissioning,
• 17:33
  so funding opportunities,
• 17:35
  and then we are seeing that there's barriers
• 17:37
  in terms of awareness, broader awareness,
• 17:39
  of the role of what we do.
• 17:41
  So there's a few things impacting on that data.
• 17:45
  Have I missed anything, Jackie?
• 17:47
  - No, I think that's it, isn't it?
• 17:49
  I think it's just that kind of variability,
• 17:51
  really, isn't it?
• 17:54
  So, you know, we did a big listening event in our city,
• 17:59
  and it was just really interesting.
• 18:00
  Some people with PPA had had just the most amazing service,
• 18:04
  and other people had to work really hard,
• 18:08
  and they'd also missed out on some basic,
• 18:11
  I would say, some basic advice, really,
• 18:13
  in terms of how they were managing things,
• 18:15
  you know, about, you know,
• 18:18
  how their language might deteriorate,
• 18:20
  or how their writing would be affected.
• 18:23
  They hadn't put advance planning in
• 18:25
  in terms of some of those things.
• 18:27
  So it was really quite difficult being in that space,
• 18:30
  seeing people in quite, (chuckles) you know,
• 18:32
  not a large city, but, you know, differences in experience.
• 18:37
  And I think it's not a good thing, is it,
• 18:39
  when you've got that.
• 18:40
  So we've got, you know, both ends.
• 18:42
  But as Anna says, it's getting better,
• 18:44
  and I guess that's what we've got to hold onto, I think,
• 18:46
  and that's why things like this are really important,
• 18:48
  'cause by raising that awareness, you know,
• 18:51
  I think that's how people can kind of understand.
• 18:54
  And sometimes it starts small.
• 18:55
  We've had services where people have started
• 18:57
  with half a day a week, you know,
• 18:59
  and they work at a clinic half day a week,
• 19:01
  and then put all that,
• 19:02
  actually, that, "We need more of that,"
• 19:04
  you know, and then that's half a, you know,
• 19:06
  then the halftime posts, then a full-time post,
• 19:08
  and then that services become two therapists.
• 19:11
  So sometimes it's not large amounts of money
• 19:14
  that can make a difference.
• 19:16
  It's small things that can then grow
• 19:18
  and can kind of show the need.
• 19:21
  - That's really helpful to know.
• 19:23
  And I think you're pointing out
• 19:25
  that this really is an international issue,
• 19:27
  not only dementia care capacity broadly,
• 19:30
  but for these very, very highly specialised services
• 19:35
  for individuals with atypical presentations.
• 19:40
  In addition to this fantastic podcast,
• 19:43
  any other resources you might point out
• 19:46
  to folks who are looking to learn more
• 19:49
  about speech and language therapy,
• 19:50
  or even just how they might fit
• 19:53
  into the multidisciplinary team?
• 19:55
  I'll give that to everyone broadly.
• 19:57
  - Well, the first thing, that's good question,
• 19:59
  the first thing that springs to my mind is,
• 20:01
  in our International Speech and Language Therapy network,
• 20:04
  we've got a researchers from 25 countries worldwide now.
• 20:09
  And one of the things that we've done
• 20:10
  is recognise the need for more resources.
• 20:13
  So we are trying to share,
• 20:14
  that's why we came together in the first place.
• 20:17
  Locally, we've done the same,
• 20:19
  to share case presentations, share practise.
• 20:23
  And internationally, we wanted to do the same,
• 20:25
  and actually translate some of those resources in,
• 20:28
  'cause there is some research,
• 20:30
  there are some studies going on,
• 20:32
  there are randomised control trials, one or two,
• 20:35
  on speech and language therapy,
• 20:36
  that are trying to influence policies.
• 20:39
  We might be leading one at UCL,
• 20:42
  but they're, you know, they're in their offing.
• 20:44
  There are qualitative research studies
• 20:48
  and smaller group trials.
• 20:50
  But actually, clinicians on the ground need resources,
• 20:52
  and other professionals need to know what we do.
• 20:56
  So our international group has a website
• 20:59
  where we try and share clinical resources.
• 21:02
  But as a more locally in the UK,
• 21:06
  I guess this is where the PPA Awareness Day comes in.
• 21:09
  Actually, this is what the focus is,
• 21:11
  of we wanted to mention on this podcast.
• 21:14
  And that's come in because people with PPA
• 21:18
  that we've worked with have said, "Yeah, you know,
• 21:20
  all your wonderful aim
• 21:21
  to create randomised controlled trials
• 21:24
  that will influence policy,
• 21:25
  it's all really wonderful.
• 21:27
  However, can we do something much more basic?
• 21:31
  So we can see speech therapists trying to increase,
• 21:34
  you know, small amounts of money.
• 21:35
  We can see professors of neurology trying
• 21:38
  to help us live well.
• 21:40
  But can you do some work,
• 21:42
  just to let everybody know that if we have PPA,
• 21:45
  we need to have a referral to speech therapy?"
• 21:48
  That's it. That's the care pathway.
• 21:50
  So out of that was born a collaboration
• 21:54
  where we are trying to increase awareness.
• 21:57
  This is part of a research piece of work we've done as well.
• 22:00
  So we've used lots of different participatory methods
• 22:03
  and qualitative research methods
• 22:05
  to underpin this awareness piece,
• 22:08
  and work together with researchers, neurologists,
• 22:13
  as well as people with lived experience.
• 22:14
  - I have lots of specific questions,
• 22:16
  but that's a really helpful start.
• 22:19
  - Can I call out a couple of things?
• 22:22
  So first of all, I'd really like to call out,
• 22:24
  we have a national PPA support group in the UK,
• 22:27
  as part of Rare Dementia Support, with its website.
• 22:30
  And they have a lot of resources associated with them,
• 22:33
  and they do actually take people remotely,
• 22:36
  and sort of involved in our webinars and meetings.
• 22:38
  And Anna and I are involved with that.
• 22:41
  But also, there will be, I think, other, you know,
• 22:44
  sources of support.
• 22:45
  For example, Association for Frontotemporal Dementia
• 22:47
  in the US has some very good things, as I'm sure you know.
• 22:50
  And there may well be other things.
• 22:53
  And the second thing I wanted to call out
• 22:54
  is that we're trying to build this resource.
• 22:56
  So we've just launched, I think,
• 22:58
  really exciting development,
• 23:00
  trying to do what Anna has done
• 23:02
  with the speech and language therapy community,
• 23:04
  with the neurological community.
• 23:05
  So Chris Hardy's now assembling,
• 23:09
  we think we'll have over 100 neurologists
• 23:11
  from many different countries, about 30 different countries,
• 23:15
  all of whom have an interest in a PPA,
• 23:18
  to try to join them all up.
• 23:19
  And I'm hoping that that will run and run.
• 23:21
  And on the back of that,
• 23:22
  we will actually generate one of the main impetus
• 23:26
  of founding it, actually,
• 23:27
  is to generate publicly accessible things across countries
• 23:33
  that we will be major resource.
• 23:34
  So looking into the, hopefully, intermediate,
• 23:38
  short-term, intermediate-term future.
• 23:40
  - You just asked a question or made a comment
• 23:42
  that triggered a question in my mind about other countries.
• 23:45
  What does the diagnosis of PPA look like elsewhere,
• 23:49
  so maybe beyond the Western world, for instance?
• 23:52
  - It's a massive issue for the field.
• 23:54
  The bias that exists because of the history,
• 23:57
  the modern history of its rediscovery,
• 23:58
  is being dominated by the English-speaking world.
• 24:01
  And, you know,
• 24:02
  there's a huge overrepresentation of English
• 24:05
  in the literature and in terms of our understanding
• 24:08
  of these diseases.
• 24:09
  And what we're starting to see now are direct comparisons
• 24:13
  between English PPA and, for example, Italian-speaking PPA,
• 24:16
  which we happen to have been involved with,
• 24:19
  and with a group in Milan, Salvatore Mazzeo's group.
• 24:23
  And it's revealing, really, quite important differences
• 24:26
  between PPA in different languages,
• 24:28
  and presumably in different cultures,
• 24:30
  which we are even less good at measuring.
• 24:33
  So I mean, it's vital that we do much more collaboration
• 24:36
  and try to look at what people are using diagnostically
• 24:39
  across languages, because there are huge swathes.
• 24:43
  I mean, if you do a PPA map of PPA research,
• 24:46
  it's terrifying.
• 24:47
  There are huge swathes of the globe
• 24:49
  which are just a completely incognito.
• 24:52
  We don't look at those languages,
• 24:54
  have never seen what PPA is like in those languages.
• 24:58
  And, you know,
• 24:59
  the vast majority of the world's population is there.
• 25:02
  So we really need to break that all open.
• 25:04
  And I think, you know, there are some tantalising clues.
• 25:08
  For example, we think
• 25:09
  that there are some very unique features to PPA in Japanese,
• 25:13
  for example, which are not well understood at the moment.
• 25:16
  And we really need
• 25:17
  to get a lot more communication going between neurologists
• 25:21
  as well as speech and language therapists internationally.
• 25:25
  But it is a huge issue for the field.
• 25:27
  - What I would say, though,
• 25:29
  is the PPA Awareness Day was started in the UK last year.
• 25:35
  And last year,
• 25:36
  in the process of setting up the PPA Awareness Day,
• 25:39
  we shared some of that with our international colleagues,
• 25:41
  and it ended up being celebrated,
• 25:44
  let's use the word, across six countries worldwide.
• 25:47
  And the PPA Awareness Day recordings from 2025,
• 25:52
  last year's Awareness Day, which span six countries,
• 25:56
  are available on the International Speech
• 25:59
  and Language Therapy PPA website.
• 26:01
  And there's six recordings from Greece,
• 26:03
  Italy, Canada, the States, England,
• 26:08
  I'm sure I've forgotten one, France.
• 26:10
  And then there was a later one done in Australia.
• 26:12
  This year, we have PPA Awareness Days going
• 26:15
  across 13 countries worldwide.
• 26:18
  So now, we're also including Norway.
• 26:22
  We are hoping to have a South American country involved,
• 26:24
  and possibly Germany and Austria.
• 26:31
  You know, we mentioned the issue of access
• 26:33
  to speech therapy is an issue across the world.
• 26:36
  And we are engaging the PPA Awareness Day internationally,
• 26:40
  on the same day this year, it will be on the 10th of April.
• 26:44
  And we will all be hosting webinars around about midday,
• 26:47
  except in Greece, where, of course,
• 26:49
  it's Greek Easter on the 10th of April.
• 26:53
  So in Greece, they're holding their event a week early,
• 26:56
  but we are hoping it will be at midday, like a fan,
• 26:59
  like a bunch of fireworks around the world,
• 27:02
  at different times of midday.
• 27:05
  But Jackie, I was wondering,
• 27:06
  we should compare notes, really,
• 27:08
  what locally, in terms of multilingual people...
• 27:11
  - I was just thinking that exact question, actually, Anna.
• 27:15
  - Yeah.
• 27:16
  I mean, in London, I still hear stories
• 27:19
  of people not being referred to speech therapy with PPA
• 27:21
  'cause they don't speak English as a first language,
• 27:23
  or they spoke multilingual.
• 27:25
  Do you hear that in the north of England as well?
• 27:27
  - Yeah, I think so, yeah.
• 27:29
  But also, I think,
• 27:31
  just access to dementia diagnosis more generally-
• 27:35
  - Exactly. - Is different as well,
• 27:36
  isn't it?
• 27:37
  So it's part of a broader picture, isn't it?
• 27:39
  And then how services are configured within that,
• 27:42
  really, I think.
• 27:44
  And so people, when they come, are often,
• 27:47
  not always, but sometimes, are really quite late.
• 27:51
  And some of those opportunities are missed, I would say.
• 27:56
  - We did do a study at UCL.
• 27:59
  We asked 10 family members
• 28:01
  and people living with the diagnosis of rare dementia,
• 28:04
  so we included non-language-led dementias,
• 28:08
  about the difficulties
• 28:09
  they had accessing diagnosis and support.
• 28:12
  We had to be quite purposeful, though, 'cause we ended up,
• 28:14
  purposeful, I think, is the research term,
• 28:16
  'cause we had to recruit people to that study
• 28:19
  who had already got to us, gotten to us.
• 28:23
  But they said exactly these things,
• 28:25
  these clinical experiences, that Jackie and I described,
• 28:28
  they said the same.
• 28:29
  there were things like stigma,
• 28:32
  and within their own communities, their own families,
• 28:34
  and also within the healthcare profession,
• 28:36
  and, you know, within the healthcare community,
• 28:39
  but also between the people living with it
• 28:42
  and the way they interacted.
• 28:43
  So it's a complicated sociopolitical situation.
• 28:50
  So we are continuing that programme
• 28:52
  to try and raise awareness and also support access.
• 28:56
  - That's fantastic.
• 28:57
  And I'm excited to hear more about it.
• 28:59
  Bringing it back down
• 29:00
  to this patient and family experience question,
• 29:03
  is there research on the best timing
• 29:06
  to start speech and language therapy
• 29:08
  beyond as early as possible?
• 29:10
  Jason, what are your thoughts?
• 29:12
  - Yeah, yes, as early as possible.
• 29:14
  And in fact, where possible,
• 29:18
  we really like to involve speech and language therapy
• 29:20
  in the diagnostic pathway.
• 29:21
  And that's, you know, built into our clinic,
• 29:24
  but, unfortunately, it's not always feasible.
• 29:27
  So I guess, I defer to Anna and Jackie,
• 29:30
  but I guess most of the roles,
• 29:32
  speech and language therapy
• 29:33
  is still in post-diagnostic support.
• 29:34
  And that should definitely be offered at the first,
• 29:37
  you know, time that we diagnose someone.
• 29:40
  And I think, I won't presume to steal their thunder,
• 29:46
  but I think it's true that the ways
• 29:49
  that it can help do differ over the course of the illness.
• 29:53
  But Jackie and Anna might elaborate on that.
• 29:57
  - Yeah, we've certainly done lots of research on timing.
• 30:01
  It's lots and lots of qualitative research.
• 30:03
  We've done interviews and focus groups.
• 30:05
  And people with lived experience with PPA
• 30:07
  and their family members all agree that they'd like
• 30:11
  to access the services as early as possible.
• 30:14
  And to quote one of my client's wives,
• 30:18
  she said that when her husband started,
• 30:24
  she thought her husband had fallen out of love with her,
• 30:28
  and then she noticed symptoms,
• 30:32
  and he got a diagnosis of PPA,
• 30:33
  and she thought, "Well, I have to stay with him."
• 30:36
  And then she saw a speech and language therapist
• 30:38
  and realised that he'd always been in love with her,
• 30:42
  it's just the way he communicated had changed.
• 30:45
  And she wished she'd seen a speech therapist
• 30:48
  even before diagnosis.
• 30:50
  - Jackie, I'd love to hear your thoughts.
• 30:53
  I do wanna make one quick comment, Anna,
• 30:55
  about what you just said.
• 30:56
  I feel like there's a theme that's come up commonly
• 30:58
  on this podcast and others about the importance
• 31:01
  of involving lived experience
• 31:03
  in all of your research studies,
• 31:05
  and really the richness of qualitative research,
• 31:07
  what that brings to,
• 31:09
  you know, to complement our quantitative studies.
• 31:12
  So thank you so much for sharing that quote and that story.
• 31:15
  I mean, very, very powerful.
• 31:17
  Jackie, I'm wondering,
• 31:17
  from your perspective and the patients that you work with,
• 31:20
  we know that these conditions develop
• 31:22
  and manifest over many years, even decades.
• 31:26
  And I can see that working
• 31:27
  with a speech and language therapist,
• 31:28
  we've talked about there's access challenges,
• 31:31
  and that there would be some significant burdens,
• 31:34
  both on the side of the clinical team
• 31:36
  and on the side of the patients and the families.
• 31:38
  How does that work?
• 31:40
  How does that play out with your patients?
• 31:42
  - Yeah, I mean,
• 31:44
  so I think that's an interesting question, isn't it?
• 31:47
  And I think for me,
• 31:49
  it's about configuration of dementia services more broadly
• 31:54
  for all of the team.
• 31:57
  So sometimes people say that, you know,
• 32:00
  "It's gonna cost a lot having this speech therapist,
• 32:02
  and, you know, all these sessions you're gonna be doing."
• 32:04
  And you kind of go, "Well, it's not configured like that,
• 32:09
  it's not configured like that for community
• 32:11
  of psychiatric nurses visiting people with dementia
• 32:13
  or occupational therapists, or the rest of the team."
• 32:17
  So I think, for me, it's about how we configure services,
• 32:20
  and then how we get the right people.
• 32:23
  And, you know, in the NHS, we have this saying,
• 32:26
  it's the right people, with the right skills,
• 32:29
  in the right place, at the right time.
• 32:31
  And that's making sure that,
• 32:33
  you know, at points of their journey,
• 32:35
  that people are gonna have support
• 32:38
  for whatever their need is at that point in time, isn't it?
• 32:42
  So I think when we're talking about people
• 32:44
  with language-led dementias,
• 32:45
  primary progressive aphasia, you know,
• 32:49
  presuming you've been given your diagnosis
• 32:51
  at an early stage,
• 32:53
  then the post-diagnostic process
• 32:55
  is going to involve understanding of language by definition,
• 32:59
  isn't it, by absolute definition.
• 33:01
  So if you want to explain what, you know, semantic variant,
• 33:06
  or semantic dementia, as we sometimes call it locally,
• 33:09
  you've got to really understand semantics, haven't you?
• 33:11
  You can't really explain that
• 33:12
  without understanding what that is.
• 33:15
  You know, and if you're talking about agrammatism,
• 33:18
  well, that's actually,
• 33:20
  so some of these things are quite techie, aren't they,
• 33:22
  in terms of understanding underlying language impairment.
• 33:25
  So, you know, if you look across your team,
• 33:28
  and you kind of think, "Who's got that skill,"
• 33:31
  it is quite clearly the discipline
• 33:33
  that's been trained in linguistics,
• 33:35
  which is your speech and language therapist, isn't it?
• 33:38
  And I think that argument,
• 33:40
  it goes for all things, doesn't it, really?
• 33:42
  So that, you know, if people need help
• 33:44
  with sort of managing activities of daily living,
• 33:47
  they need to get an occupational therapist, don't they?
• 33:50
  But the OT's not gonna be involved forever necessarily,
• 33:52
  constantly visiting, checking that you've got...
• 33:54
  You know, they'd be involved,
• 33:56
  and they'd, you know, help you out during that period,
• 33:59
  your adaptation, and then, you know,
• 34:01
  they just kind of back off,
• 34:02
  and might be called in again in the future.
• 34:04
  And speech therapy is exactly the same.
• 34:07
  So you kind of get involved at transition,
• 34:09
  or a point where people might need help
• 34:12
  with a particular thing,
• 34:14
  whether it's a post-diagnostic thing
• 34:15
  or training the care partner around communication,
• 34:18
  or an issue around eating, drinking, and swallowing.
• 34:20
  And you'd work with them to provide the advice
• 34:23
  for adaptation at that point, you know?
• 34:26
  And that might be,
• 34:27
  sometimes you go, and it might be one session,
• 34:29
  or it might be four sessions, you know?
• 34:30
  And then you'd kind of come away again, wouldn't you?
• 34:33
  So you kind of dip in and dip out
• 34:34
  across the journey of dementia.
• 34:36
  But that's how we configure services more broadly, don't we?
• 34:40
  And that's kind of underpins our dementia strategy
• 34:43
  in the UK,
• 34:44
  where people have to have that kind of timely support.
• 34:48
  And the idea is, if we offer that support,
• 34:50
  then it reduces people needing additional things,
• 34:54
  because things have all become unravelled, you know,
• 34:56
  and they need extra help from the health service
• 34:59
  because somebody's become dehydrated, or, you know,
• 35:01
  or it reduces people going into care
• 35:03
  because they can manage better.
• 35:06
  So that's the foundation for our whole dementia strategy.
• 35:10
  And for me, these people have got language problems
• 35:13
  in the dementia strategy.
• 35:14
  So if we want to be, you know,
• 35:16
  if we want to be thoughtful about what their issues are,
• 35:19
  for me, it's just a natural, you know,
• 35:21
  it's a natural part of that equation, really.
• 35:24
  So I think it's different from stroke,
• 35:26
  where you might have lots of intervention early on.
• 35:29
  You know, when I worked,
• 35:30
  it's a very long time since I've worked in stroke,
• 35:32
  but when I worked in stroke, and, you know,
• 35:34
  you'd see people a number of times a week,
• 35:37
  and still people do that in inpatient,
• 35:38
  so there's many appointments early on.
• 35:40
  But our appointments are spread out over the,
• 35:43
  so actually, if you added them up,
• 35:44
  it probably wouldn't be that many appointments at all.
• 35:48
  But actually, you know, it's spread over a longer period.
• 35:51
  So it's very much like we would have with dementia
• 35:53
  or other progressive neurological conditions,
• 35:56
  we kind of dip in and sort, and then we back off again.
• 35:59
  That's the thing I'd say.
• 36:01
  - Can I underpin that with some research as well?
• 36:03
  So I just thought about this.
• 36:05
  We've mentioned qualitative research,
• 36:07
  we've mentioned patient and public involvement.
• 36:09
  I dropped in the odd RCT. We've talked about surveys.
• 36:12
  We did a health economic study
• 36:14
  that's currently under review.
• 36:16
  And we asked people with PPA
• 36:18
  and their family members across the UK about that.
• 36:22
  We did what was called a discrete choice experiment,
• 36:26
  which is a health economics methodology.
• 36:28
  And basically, what we found was that people
• 36:32
  don't expect continuous speech and language therapy
• 36:36
  in a leisurely fashion, in their homes.
• 36:39
  What they really want is, what they said they want,
• 36:42
  they told us, they prioritised above anything else,
• 36:45
  is they quite happily see a speech therapist
• 36:49
  on teletherapy even,
• 36:53
  and as long as they were a speech and language therapist
• 36:55
  who knew about PPA.
• 36:58
  So they quite happily
• 36:59
  just have a few sessions every so often, let's say,
• 37:03
  with an expert speech therapist
• 37:04
  who knows about PPA on teletherapy.
• 37:06
  So we're not talking about huge amounts
• 37:08
  of thousands of pounds.
• 37:09
  We are talking about a few hundred pounds,
• 37:11
  a few sessions, over, say, several years.
• 37:14
  - Can I make some points from a neurological standpoint?
• 37:16
  So first, for one really,
• 37:18
  really important thing we try to get across,
• 37:20
  but which there's a long way to go on the messaging,
• 37:22
  is that aphasia is totally colonised by stroke,
• 37:28
  which, of course, is understandable.
• 37:30
  'cause if you looked at everybody coming along with aphasia,
• 37:33
  you know, 99 out of 100 will have had a stroke for that.
• 37:37
  But the problem is that if you happen
• 37:39
  to be the unlucky 100th person that it's got PPA,
• 37:44
  the models for stroke do not apply to you.
• 37:47
  And this is not helped, unfortunately,
• 37:49
  by kind of high-profile messaging,
• 37:51
  which likes to term PPA aphasia,
• 37:54
  because it's nicer to say that
• 37:55
  than to say that someone has dementia,
• 37:58
  but gives very misleading impressions about prognosis,
• 38:02
  about what people's needs are at a given point in time.
• 38:05
  And, you know, this is an evolving situation.
• 38:07
  In stroke, as Jackie rightly says,
• 38:09
  you have an intensive kind of early intervention model,
• 38:13
  because you expect the brain's natural recovery
• 38:15
  and plasticity to kick in and help.
• 38:19
  That is not happening,
• 38:21
  at least not nearly to the same extent, in PPA,
• 38:24
  and the needs are gonna be evolving indefinitely, really.
• 38:28
  And, you know, with this argument about economics,
• 38:32
  you know, I think what really we want to see,
• 38:34
  which is really difficult to implement,
• 38:36
  but we want,
• 38:37
  is for speech and language therapy,
• 38:39
  like other forms of therapy in dementia,
• 38:40
  to be both reactive and proactive,
• 38:44
  so that, you know, it's flexible.
• 38:45
  And if it is that, then it quickly pays for itself.
• 38:49
  Because if you think about relatively simple interventions
• 38:53
  from a speech and language therapist
• 38:54
  that improve communication,
• 38:56
  how much money that might save
• 38:58
  in terms of wasted investigations, wasted procedures,
• 39:02
  people not getting the care they need until,
• 39:04
  you know, maybe those care needs are much escalated,
• 39:08
  you know, communication impacts all aspects of care.
• 39:11
  So, you know,
• 39:11
  facilitated communication quickly pays for itself.
• 39:15
  So I think it is a really difficult health economic model,
• 39:18
  because, on the one hand, you're trying to,
• 39:20
  you know, factor in therapists' time.
• 39:22
  They're expert practitioners and all that,
• 39:24
  so they're quite expensive,
• 39:25
  but it's much harder to weigh in what the true savings are.
• 39:30
  And this is a message that we fight to get across.
• 39:33
  - Those are such excellent points.
• 39:34
  And again, this theme keeps coming up
• 39:36
  about the multiple roles
• 39:38
  that speech and language therapists play,
• 39:39
  not only in directly caring for and treating the patients,
• 39:43
  but advocating for them,
• 39:44
  communicating really complicated nomenclature
• 39:47
  or concepts to patients' families,
• 39:49
  and maybe even to other providers.
• 39:52
  So really diverse role that all of you play.
• 39:56
  So now, let's move on and talk more
• 39:57
  about the awareness campaign.
• 39:59
  (cheerful music)
• 40:05
  So we talked a little bit about this,
• 40:07
  but Anna, I'd love to ask you,
• 40:08
  what made you start this PPA awareness campaign?
• 40:12
  You talked a bit about it, but what was the impetus for you?
• 40:16
  - So I was designing a randomised controlled trial
• 40:20
  and running a randomised controlled trial.
• 40:21
  And I mentioned earlier
• 40:23
  that during this design of that trial,
• 40:27
  people with lived experience were saying to us
• 40:29
  that this is a lovely trial.
• 40:31
  You know, it's really important.
• 40:33
  We were looking at communication partner training,
• 40:35
  so working with couples.
• 40:37
  They said, "But how do we even access speech therapy?
• 40:40
  You know, how do other people access speech therapy?
• 40:42
  You need to do some research on that.
• 40:44
  And we'd like to help. You need to design a care pathway."
• 40:48
  So we decided to collaborate with Dyscover,
• 40:53
  who are the only speech therapy charity.
• 40:57
  We collaborate with Rare Dementia Support.
• 41:00
  And also, this year,
• 41:01
  we're collaborating with Royal College of Psychiatry,
• 41:04
  and in the UK, who have a register
• 41:08
  of a large percentage of our memory clinics.
• 41:10
  And we also are collaborating
• 41:12
  with the Royal College of Speech and Language Therapy.
• 41:14
  So building a network with trusted organisations,
• 41:17
  and then working with a group,
• 41:20
  a much wider group of people with PPA.
• 41:22
  Last year, we co-produced a logo, our key messages.
• 41:28
  We ended up actually also co-producing a series
• 41:30
  of mini awareness campaigns.
• 41:32
  We know need to influence the public,
• 41:35
  but we also need to influence referrers.
• 41:37
  We need to influence other speech and language therapists.
• 41:39
  We need to influence student speech and language therapists.
• 41:42
  We need to influence several different people.
• 41:45
  So we've been celebrating many awareness campaigns leading
• 41:49
  up to the PPA Awareness Day.
• 41:51
  So we co-produced that last year,
• 41:54
  and then we evaluated the impact.
• 41:56
  We know that we can't change health behaviours,
• 41:59
  but we know we can change awareness and knowledge.
• 42:02
  That's what an awareness campaign can do.
• 42:05
  So we explored that with feedback.
• 42:08
  And we did also look at our activity,
• 42:10
  how many people we were hitting.
• 42:12
  And across the six international campaigns,
• 42:15
  we had hundreds of at attendees in every webinar
• 42:20
  around those six countries who participated last year.
• 42:23
  In fact, we had over 700 registrants at the UK event.
• 42:27
  And we had thousands and thousands of engagements
• 42:29
  on social media.
• 42:30
  But our feedback really showed
• 42:32
  that the main thing that changed was people's awareness.
• 42:37
  Annalise, you said it about the breadth of our role.
• 42:39
  (Anna and Jacqueline laughing)
• 42:40
  And that's the kind of thing that people,
• 42:43
  that's what developed,
• 42:44
  that people realised that perhaps some their misconceptions
• 42:47
  around what traditional speech therapy might be
• 42:49
  might not be the only thing we offer,
• 42:51
  and that referrers, people with lived experience,
• 42:54
  were developing that expansive knowledge.
• 42:56
  So I've kind of told you what inspired me,
• 42:59
  and then how we did it, and then we need to keep doing it.
• 43:02
  - Incredible.
• 43:04
  Jason, who do you think needs to know about this very,
• 43:07
  very broad role of speech and language therapy in PPA?
• 43:11
  Who else?
• 43:12
  - Well, we really want everyone to know about it,
• 43:14
  but I would say, from a medical perspective,
• 43:17
  we want anybody that's involved
• 43:18
  in the diagnosis of dementia to know about it.
• 43:21
  And, you know, really, obviously,
• 43:23
  well, maybe not obviously, but clearly, memory clinics.
• 43:27
  And as Anna pointed out, in the UK,
• 43:30
  that landscape tends to be led mainly
• 43:33
  by old-age psychiatrists.
• 43:36
  And of course, it may be geriatricians
• 43:38
  or gerontologists in other countries,
• 43:40
  et cetera, other specialties.
• 43:41
  But whoever's involved, certainly in running memory clinics,
• 43:44
  clearly, neurologists need to know more about it as well,
• 43:46
  what role it has to play.
• 43:48
  And GPs, because even though they may only have one person
• 43:52
  with PPA that they see in their practise, who knows,
• 43:56
  you know, it's the same principle,
• 43:57
  that you want the GP to be able to pick up
• 43:59
  on the one life-threatening case of headache
• 44:02
  that they see come through their door. (chuckles)
• 44:04
  So you really want them to pick up
• 44:06
  that this person has unique needs,
• 44:07
  and refer them appropriately,
• 44:09
  and then be able to kind of take charge
• 44:11
  of the coordination of care.
• 44:13
  So I'd say,
• 44:14
  certainly, all those medics need to know about it.
• 44:16
  And I'd say, with respect to neurologists,
• 44:18
  you are sort of, I suppose, the group that I know best,
• 44:24
  there are a couple of sort of really key things
• 44:27
  to try and sort of get across to them.
• 44:29
  And it's really based around current misconceptions.
• 44:31
  I mean, one misconception that they have,
• 44:34
  we have to fight,
• 44:35
  is that speech and therapy essentially assess swallowing,
• 44:39
  which, it is a really big and important,
• 44:41
  vital part of what they do, but only one part of it.
• 44:44
  And the other kind of related perception
• 44:46
  is this sort of nihilistic view,
• 44:48
  that, well, you can't really do anything,
• 44:49
  you can't give people with dementia training.
• 44:52
  So what's really the point?
• 44:53
  And, you know, to get across that they're a fundamental,
• 44:56
  basic, everyday communication aids and strategies
• 44:59
  that are really gonna make people's lives different,
• 45:03
  which the speech and language therapist can deliver.
• 45:05
  So I think it's teaching them, you know,
• 45:08
  that we have speech and language therapists
• 45:10
  who are taking interest,
• 45:11
  but is also pointing out to them why it's actually going
• 45:13
  to be practically useful for them to refer.
• 45:17
  - Well, you heard it here, people.
• 45:18
  Make sure you forward this episode
• 45:20
  to your colleagues (laughs) in different disciplines.
• 45:23
  Jackie, I'd like to end with you on this question.
• 45:25
  From your perspective, do you feel there's been a change
• 45:27
  in awareness in the role of speech and language therapy?
• 45:30
  And where's that going?
• 45:32
  - Yeah, I think there has.
• 45:34
  You know, I'm positive. I think there has.
• 45:38
  (laughs) I think the penny is beginning to drop,
• 45:41
  that we don't just practise people, you know what I mean?
• 45:44
  That actually we do that broader kind of role.
• 45:46
  And I think that's absolutely crucial, isn't it?
• 45:50
  That broader kind of everyday communication role
• 45:53
  that we have.
• 45:55
  So I think in our own profession, and I, you know,
• 45:58
  I can think back my first dementia placement in the '80s.
• 46:02
  So I can certainly say that things have changed
• 46:05
  since that time.
• 46:06
  And I think within our own profession
• 46:08
  as speech and language therapists,
• 46:09
  there were some barriers within our own profession
• 46:12
  as to whether we should or shouldn't.
• 46:14
  You know, as Jason says, it was very stroke-focused.
• 46:19
  You know, so I think that's changed.
• 46:21
  People have realised there's a broader group.
• 46:25
  I think what I would like to see,
• 46:28
  perhaps building on Jason's point there,
• 46:30
  is that sort of local services kind of work out
• 46:34
  where some of the blocks are
• 46:36
  for people getting to speech and language therapy,
• 46:38
  'cause sometimes, you know, as Anna said there,
• 46:40
  it could be people's perceptions.
• 46:43
  But I think sometimes,
• 46:44
  it's just because services are organised in a certain way,
• 46:48
  and then kind of referrers give up,
• 46:50
  'cause it's quite difficult.
• 46:51
  So I think people that commission
• 46:53
  or organise services should, you know,
• 46:56
  I'd like them to have an awareness to think about, you know,
• 46:59
  'cause if they haven't got a speech therapist
• 47:01
  that's a specialist, now, how are they going to get access
• 47:04
  in the main speech therapy department
• 47:06
  that's based in the hospital, the community?
• 47:09
  And why don't people get from there to there?
• 47:12
  What are the blocks along the way?
• 47:13
  And sometimes it's because, you know,
• 47:15
  that service does stroke,
• 47:16
  and that service does neurology.
• 47:18
  And is PPA a neurology, or is it a dementia,
• 47:22
  and is it, you know?
• 47:23
  And locally, we don't do dementia.
• 47:25
  You know, it gets all quite complicated.
• 47:28
  And so that's also about awareness, isn't it?
• 47:30
  'Cause sometimes the referrer wants to refer,
• 47:33
  and the speech therapist wants to take,
• 47:34
  but there's these other barriers in the middle somewhere.
• 47:38
  And I think that's where awareness
• 47:40
  can start making you think,
• 47:41
  "Now, hang on, let's see if we can't work this through."
• 47:44
  And that doesn't actually take any more money
• 47:46
  to work those pathways through.
• 47:48
  It's just about, you know, about looking at those basic,
• 47:51
  everyday things and those referral processes, I think.
• 47:54
  So I do feel things are changing.
• 47:57
  They're not where I want them to be, you know,
• 48:00
  but perhaps we'll get there, get there soon.
• 48:02
  And the PPA Awareness Day is gonna help that, definitely.
• 48:06
  So it's keep pushing, isn't it?
• 48:08
  And keep pushing it from different angles, really,
• 48:10
  with all these different stakeholders we've got around
• 48:14
  that can improve that kind of awareness, really, I'd say.
• 48:18
  - Really excellent points from all of you.
• 48:20
  (cheerful music)
• 48:26
  - Okay, if you do not know much about PPA,
• 48:29
  or you do, but you want to know more,
• 48:31
  please sign up for the 2026 PPA Awareness Day on April 10th.
• 48:37
  You can find the registration link
• 48:38
  in the show notes for today's episode.
• 48:41
  But Anna, to remind us,
• 48:42
  what's the focus of this year's Awareness Day?
• 48:44
  And is there anything else you wanna tell us
• 48:46
  before we sign off?
• 48:48
  - I think, to emphasise the focus, is that people
• 48:52
  with primary progressive aphasia experience speech,
• 48:55
  language, and communication difficulties
• 48:56
  as their main and leading symptom.
• 48:58
  And early referral to speech and language therapy,
• 49:02
  as early as possible, is the main message.
• 49:06
  And the main message we are giving this to
• 49:10
  are the people who do the diagnostic stuff.
• 49:14
  So that's why we're collaborating
• 49:16
  with the Royal College of Psychiatrists in England,
• 49:18
  the Royal College of Speech and Language Therapy,
• 49:20
  as I mentioned, Rare Dementia Support,
• 49:22
  and Dyscover, a charity,
• 49:24
  it's a speech therapy charity that work with PPA.
• 49:26
  That's in the UK.
• 49:27
  Around the world, we're collaborating
• 49:29
  with the National Aphasia Association in the States,
• 49:32
  with Australian Aphasia Association in Australia
• 49:35
  and Speech Pathology Australia.
• 49:37
  We're collaborating with organisations in Greece,
• 49:40
  Brussels, France, Switzerland, Norway.
• 49:44
  This is a test for me, by the way, to remember all the,
• 49:47
  Canada, we've got Quebec,
• 49:49
  and Toronto is locations in Canada.
• 49:51
  We have events happening in Austria, as I said.
• 49:55
  Oh, goodness, I know I've missed other places,
• 49:57
  but please do sign up.
• 49:59
  And if you are in another country,
• 50:00
  and you can't find the relevant link for your country,
• 50:03
  get in touch, and we'll try and connect you.
• 50:04
  - Thank you so much for that overview.
• 50:06
  Any final thoughts, Jason, Jackie?
• 50:09
  - I'd just like to have a brief message
• 50:12
  for any medical colleagues who might be listening in,
• 50:16
  just to say that if you do see somebody coming
• 50:19
  through your clinic, your surgery,
• 50:20
  with word-finding difficulty,
• 50:22
  most of them won't have PPA,
• 50:24
  but they might, so do please think about it.
• 50:27
  There are some resources that we can make available,
• 50:30
  they're public domain,
• 50:31
  designed at non-expert medical audiences
• 50:34
  in terms of the sort of steps you can take to diagnose them.
• 50:37
  But in particular, think very early
• 50:39
  about your friendly local speech and language therapist.
• 50:42
  - Well, thank you all so much for your time.
• 50:44
  I think we've had a really fantastic discussion here.
• 50:47
  And some take-home points for me are just the importance
• 50:50
  of a very early thought about PPA on your differential list
• 50:55
  if you're a clinician,
• 50:57
  and reaching out and consulting early
• 50:58
  with your speech and language therapist colleagues,
• 51:02
  because it certainly seems like there's many cases
• 51:04
  of late diagnosis and misdiagnosis
• 51:06
  that have massive implications,
• 51:07
  not only for patients and their families,
• 51:09
  but broader economic and social implications as well.
• 51:14
  We heard really compelling discussion about the many roles
• 51:18
  that speech and language therapists play
• 51:21
  in that multidisciplinary team,
• 51:23
  so not only in the diagnosis process,
• 51:25
  but conveying results, explaining results,
• 51:29
  and really meeting with patients
• 51:30
  and families across all stages of their,
• 51:33
  you know, disease journey, or diagnostic journey.
• 51:36
  We talked about some of the important considerations
• 51:39
  for how we might expand speech and language therapy
• 51:41
  as well as the broader sort of dementia care capacity
• 51:44
  across different cultures,
• 51:46
  across non-English-speaking cultures and areas.
• 51:51
  And finally, we talked about this fantastic campaign,
• 51:54
  the PPA Awareness Day 2026,
• 51:56
  which I will be very excited to tune in for.
• 51:59
  So I wanna end by just saying thank you so much
• 52:02
  to our wonderful guests,
• 52:03
  so Professor Jason Warren, Dr. Anna Volkmer,
• 52:06
  and Dr. Jackie Kindell,
• 52:07
  for sharing your experiences and your perspectives today.
• 52:11
  As we mentioned,
• 52:11
  the links to both last year's Awareness Day resources
• 52:14
  and the signup for this year's PPA Awareness Day webinar
• 52:18
  will be included in the show notes.
• 52:20
  Thank you all for listening.
• 52:22
  I'm Annalise Rahma-Filipiak.
• 52:24
  And you've been listening
• 52:25
  to the "Dementia Researcher Podcast."
• 52:28
  Everyone, thanks so much.
• 52:30
  - Bye. Thank you.
• 52:31
  - Bye. Thank you.
• 52:32
  (cheerful music)
• 52:33
  - [Announcer] The "Dementia Researcher Podcast"
• 52:35
  was brought to you by University College London,
• 52:37
  with generous funding
• 52:38
  from the UK National Institute for Health Research,
• 52:41
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• 52:43
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• 52:46
  and Race Against Dementia.
• 52:48
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• 52:50
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• 52:52
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• 52:54
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