Aphasia Awareness Month Q&A: Myths, Carer Support, Recovery, and the Future

Aphasia Awareness Month Q&A: Myths, Carer Support, Recovery, and the Future

During Aphasia Awareness Month, the podcast hosts a Q&A on aphasia—an often overlooked language disorder affecting speaking, understanding, reading, and writing, commonly after stroke or brain injury—with more than 350,000 people living with it in the UK. Guest Ann Hirons shares a carer’s perspective, discussing how aphasia is treated as a secondary condition, its “quiet crisis” impact on identity and family life, and the need to avoid carer burnout by creating therapy-free zones. The episode debunks the myth that impaired speech means impaired intellect, offers practical tips for everyday interactions (patience, simple questions, don’t finish sentences, use writing/pointing), and explores living with slowed communication and fatigue. It addresses the post-NHS-therapy “cliff edge,” benefits of peer groups, realistic recovery through practice and small steps, and roles for AI tools and creative outlets like film, art, and music supported by neuroplasticity.

00:00 Aphasia Awareness Intro
01:49 Why Aphasia Is Overlooked
03:53 Carer Burnout Balance
06:11 Everyday Anxiety And Support
09:20 Myths About Intelligence
11:36 Simple Communication Tips
13:41 Invisible Prison Advice
16:16 Aphasia Fatigue Reality
17:47 After Therapy Ends
19:08 Recovery Expectations
21:45 AI And Future Tools
23:10 Creativity And Neuroplasticity
25:53 Closing And Resources

https://www.sayaphasia.org

Transcript

Q&A session

Speaker 5: [00:00:00] Welcome to the podcast, and thank you for joining us during Aphasia Awareness Month. Throughout June, we're raising awareness of aphasia, a language disorder that affects a person's ability to speak, understand, read, and write, often following a stroke or brain injury. More than 350,000 people in the UK are living with aphasia, yet most people have never heard of it.

For this special Q&A episode, we'll be answering questions from listeners about life with aphasia, the challenges it can bring, and the support that makes a difference. We'll also try to debunk some of the myths and prejudices that surround aphasia. Joining me today is Ann Hirons. Ann brings a carer's perspective, having supported a loved one living with aphasia.

She understands firsthand the impact aphasia can have, [00:01:00] not only on the individual, but also on family members, friends, and those who provide daily support. Together, we'll explore your questions, share experiences, and discuss the realities of navigating communication, relationships, and recovery after aphasia.

We'll also talk about the importance of awareness, understanding, and creating communities where people with aphasia can continue to participate and thrive. Whether you're living with aphasia, caring for someone who is, working in healthcare, or simply wanting to learn more, we're delighted you've joined us.

This is our Aphasia Awareness Month Q&A special with Ann Hirons

audioJonathanHirons11082365960: so the public awareness of aphasias is quite low and, and compared to other conditions. Um, do you think it's, do you think it's seen as a [00:02:00] secondary condition rather than a primary?

@Rob: Yes, absolutely. I think it is, um, considered a secondary medical condition rather than a sort of primary illness. . We found doing these podcasts that aphasia is almost always treated as the side effect of something else, a stroke, brain injury, or a tumor or something. Because the medical world understandably focuses on saving the life and fixing the physical body first, and the hidden communication barrier gets swept under the carpet.

People understand what a stroke is, but they don't see the long-term isolation that follows when the words don't come back

because aphasia doesn't kill you, do you think it gets pushed back to the back of the queue with [00:03:00] the public and the policymakers?

audioRobert'siPad21082365960: It's a very harsh truth, but yes, I think it is true. Aphasia doesn't kill your body, obviously, but it can, of course, completely dismantle your life, your career, your identity. Because it's an in- an invisible disability and it isn't terminal, it lacks the political urgency that drives those sort of massive funding pots.

Emma Rich, who, as Jon is part of our podcast team, she came up with a beautiful phrase, I think, to cover this. She said, "We," that is people with aphasia, "We are left alive, but without the tools to participate in living. It's a quiet crisis." Pretty good, that

aphasia doesn't just happen to one person, it impacts the whole family. How [00:04:00] can care partners find a balance between aggressively supporting their loved one's recovery, like using flashcards, while avoiding severe burnout? Now, you might know a bit about this, Ann.

audioJonathanHirons11082365960: I don't think I've had as difficult a time with Jon as, uh, o- other people may have had with aphasia. Jon is known as one of the higher functioning, people with aphasia, aphasics.

It started out by being quite difficult, difficult 'cause I think we were both quite anxious about it a lot of the time and, uh, it took us a while to actually go out and, uh, and, uh, be amongst people and to, discover that there was a world outside the house, I remember going to the movies, which was quite nice, Jon's speech came back quite quickly but for other people, I can imagine how, time-consuming and how much time must be given to [00:05:00] the, the person with aphasia. And it's not just the physical side of it. It's, it's the, um, the mental strain as well.

For the unfortunate people who, who can't get their words out, um, quickly enough.

It must be even more difficult for their, their families to try and understand what it is they're trying to say. Or n- uh, suddenly not being able to hold a proper conversation with the, the person you're married to or that you're living with.

audioRobert'siPad21082365960: One of the things that it says here that carers want so badly to fix things, and you told us this is true in your case, that they can easily turn into full-time therapists, which can change the sort of dynamic of the relationship. And you have to build it, and it's recommended that you build in sort of therapy-free [00:06:00] zones. Sometimes you just need to sit on the sofa, watch the telly and don't feel the pressure to all the time do the flashcards kind does that ring a bell with you? 

audioJonathanHirons11082365960: I understand the, the therapist's role because initially, um, that's what I did, was to try and take over and to, to help him along in, in that way.

Jon and I were talking about this, um, this morning he, uh, gets along quite well and does things on his own and, uh, you know, seems quite confident in doing everything.

He was saying to me that he doesn't feel that confident, and if I wasn't here, he would still feel anxious about doing, um, other things. He would still feel that he can't express himself properly or that he w-wouldn't be able to read something off a menu. We had that, uh, uh, experience last [00:07:00] weekend when we went out to, to a restaurant.

I could see that he'd, he was having trouble reading something off the menu. But he got around it quickly. I didn't step in to, to help 'cause I never do now. Um, but he, he did get over that quite quickly and quite easily. And so it's easy for me to forget that he does still have some problems with it, and he does feel anxious about, um, um, doing things and saying things and having conversations with other people.

I think for, from my experience of Jon it's difficult, I think, to join in with conversations

audioRobert'siPad21082365960: う he can't come back quickly enough with, with a response or, um, a joke or, or, or whatever.

audioJonathanHirons11082365960: But he, has to think about it and form the words in his head before he actually comes out and says something. So I can understand that might be something [00:08:00] difficult for him to get over. But he does seem to manage quite well. Although he does say he would find it difficult if I weren't there to assist.

Yeah.

Mm-hmm I'm sure he would. I never think we've been doing this podcast now quite a long time, and I never really feel I make any kind of accommodation to his aphasia. Is he still there? Is he listening to any of this?

in the corner.

audioRobert'siPad21082365960: 'Cause I just think he's fine. But of course he isn't, quite right.

audioJonathanHirons11082365960: Yeah

audioRobert'siPad21082365960: And it's important to remember that, isn't it?

audioJonathanHirons11082365960: Yes and no, actually.

audioRobert'siPad21082365960: Oh, 

audioJonathanHirons11082365960: The thing is that I think if you keep remembering it, then he, it excludes him from

things, um, as well. But, um, if... Well, I don't make any accommodation for it anymore anyway.

I [00:09:00] sometimes I find myself being quite cruel about it, too, which is... But then we do have a laugh did have a bit of a laugh about something because I, I couldn't understand what he was saying and I got completely the wrong end of the stick and so it, y- you know, we do have some conversations like that,

what's the biggest, what's the biggest myth about aphasia that we can, bust through this, , Aphasia Month in June?

audioRobert'siPad21082365960: I suppose the biggest myth is that a speech impediment equals an intellect impediment. People look at you and assume that because your language is broken, that your mind is broken too. That must be incredibly frustrating. People with aphasia, just because they can't always speak as fluently and as they could, obviously, or perhaps not hardly at all, but [00:10:00] doesn't mean that the intelligence, the memory, the humor, and the emotions, they're still all there.

They're all completely intact. It's just the bridge to express them that is broken

So I suppose the question then becomes, how do you explain to people the difference between losing the ability to speak versus losing the ability to think? How can you get people to understand that intellect is still completely un- intact 

audioJonathanHirons11082365960: I think the way to think about this is if you were in a foreign country, and you've just dropped in there with no with no warning, and you don't speak the language. You know what you're talking about, and you know where you want to go, you know what you wanted to eat, for example, but you can't tell anybody about it because you haven't got the language to give it to them.[00:11:00] 

So some- so having aphasia is very like that because it's all going on in your head,

but it doesn't come out of your mouth. And it's a bit like a filing cabinet. You've got all the files inside the filing cabinet but the but the handles have dropped off. So you can't o- so you can't open, you can't open the drawer

audioRobert'siPad21082365960: Yeah, it's brilliant I completely understand that

audioJonathanHirons11082365960: So I think there's a and I'm sure anybody with aphasia would would would would know what I'm talking about is that you've-- it's all there in your head,

audioRobert'siPad21082365960: So if a stranger in a shop or a cafe or pub or something encounters someone struggling with aphasia, what are the two or three simple non-patronizing things that they can do right there and then to make that interaction easier? , 

audioJonathanHirons11082365960: I think the first thing is you've gotta give them time. They've [00:12:00] got to give you time if you're the person with aphasia. Uh, and, and, and don't try-- I think most people with aphasia will get slightly fed up with people finishing their sentences which is probably the most annoying thing.

audioRobert'siPad21082365960: Is that like same with people with a stammer? Don't finish their sentence 

audioJonathanHirons11082365960: Exactly that, yeah. And they know what they want to say, and they just need a bit of time to do it. So the first thing i- is to take your time. Ask them the question, and let them answer the question in their own time. The second thing is try and keep it normal and simple.

Don't have multiple questions in one sentence. Because people do this, "Do you want I d- do y- do you want coffee? Do you want... What coffee do you want? Do you want coffee with this? Do you want do you want s- sugar in it or do you want..." You don't want all of that.

You want to say, "Do you want coffee?"

audioRobert'siPad21082365960: Okay

audioJonathanHirons11082365960: And they can say, "Yes, I do." And then you can say, "Is there any particular [00:13:00] kind coffee you would like?" And then they can answer the question, rather than putting it all in one,

one long sentence, which most people obviously can cope with. But with aphasia, you can't answer a question quickly enough

audioRobert'siPad21082365960: Right

audioJonathanHirons11082365960: So that, that's number two. And number three is probably using communication in a different way. Rather than just speech, you can you can write things down, you can point at stuff. The usual thing that you would do with someone who's got other disabilities. You, you'd use other means for them to, um, to communicate.

So I think, all in all, patience is the answer

audioRobert'siPad21082365960: Jon you yourself have described aphasia as feeling like being in an invisible prison. A very telling phrase, the invisible prison. Now, what is the one thing you wish someone had told you maybe in those [00:14:00] first few months when you woke up, as it were, and first discovered you were in that prison?

audioJonathanHirons11082365960: I think the main thing is not to try and Carry on wi- with what you were doing before you s- before it, it happened. Because it, everything's changed as you realize. And so you can't really compare yourself to what you used to. You have to try and do things that you can do, and try and do them as well as you can.

As ... Because aphasia isn't a straight line is not the you ... a zi- a bit of a zigzag, really. You have to go around and you have to organize yourself into what you can do and what you can what you can what you can what you can aim to to do. You get small victories, is the way of talking about it.

And then you rebuild your life with the with what you can do. For example, [00:15:00] I, in my previous life I could do presentations and I could read scripts on a presentation. So I can't do that anymore, and that's one of the things that I've lost, and probably regret losing. But I've replaced it with other things that I can do.

So I think it's a question of readjusting to your condition and trying to make the best of it. And people do improve. It's, it is now known that people do improve over time. And a lot of it is to do with with practice and and ... practice is the short answer. Do, to do what you can do and keep doing it until it gets better.

And speech is probably one of the things that most people try and improve upon. When I had my, my b- bleed on my brain, I couldn't r- really speak at all, and it took about, I don't know, six [00:16:00] months before I could get more fluent. And what you f- what you forget, what you lo- what you lose is the i- immediacy of communication.

So you can't answer questions quickly because it's still being processed in your head and not coming out of your mouth. And I think that's the most ... and as you get as you get as you go through the day, you'll find that you get more tired and time and words f- just move disappear And that,

audioRobert'siPad21082365960: fatigue, is that the

audioJonathanHirons11082365960: that, that's a very good phrase.

Apha- aphasia fatigue is exactly the thing. And everybody gets it. Many people-- We've all got different versions of aphasia, as we've said in previous podcasts. But one thing that they all agree on, what people with aphasia agree on is fatigue

audioRobert'siPad21082365960: Yeah. And what can you do when that fatigue hits? Are there little [00:17:00] tricks or things, you just have to step away,

audioJonathanHirons11082365960: Yeah, ju- I, it

audioRobert'siPad21082365960: and have a rest

audioJonathanHirons11082365960: Have a rest. Yeah, exactly. It tends to hit ju- at the end of the day, so you go to bed, is the answer, and then you, i- in the morning you're you're back up again, as it were. And there's no answer to the question, actually. There's nothing you can do.

You just have to you have to go with it, as it were. But it c- it does come back as you get s- as you, you get more as you get stronger, as it were. You it does help. But there's a dip at the end of the day where you've been do- particularly if you've been doing something that's quite strenuous as far as your brain's concerned.

You you'll get a tiredness which you can't really shake off until the next day. Yeah

audioRobert'siPad21082365960: . Many survivors talk about hitting a cliff edge when official NHS speech therapy comes to an end. Where should people turn next? How vital are [00:18:00] peer-led charities like Say Aphasia during this, what must be a very scary transition?

audioJonathanHirons11082365960: That's true. The cliff edge i- is pretty daunting,. My experience is that I went to a group near me to to find out what was-- this is at very early on, to find out what I could find out, what was happening with other people with aphasia.

And I went to a group which was very illuminating, and it's because of it, it's started my journey about making the film and doing the podcast. But the interesting thing is that you- you're amongst people who've actually got the same thing as, that you've got. So you're all on the same level.

If they don't speak or they can't respond so quickly, it doesn't matter because everybody's in the same level. I would say to anybody that's coming into this, is to say that going to a group is a very good thing because it, it makes people-- A, gets you [00:19:00] out, a- and about, as it were, and also you're talking to people who are not judging you, is the truth about that

audioRobert'siPad21082365960: so is it possible to fully recover from aphasia, or is the goal more about learning how to accept and live a rich and full life alongside it?

audioJonathanHirons11082365960: Yeah, I think the answer is n- it's probably 100% is not achievable for all sorts of reasons. But as we've said in the p- in the past and in this particular podcast, you do what you can do to improve. And and it m- may take you a long time to do it, but you can improve. And I was talking to somebody the other day in America, and he's had a, he had a phase...

sorry, he had a stroke nine years ago, and he speaks quite well now, but he's still doing he's still doing f- sp- he's [00:20:00] still doing speech therapy

Every week for s- for nine m- for nine years. And I asked him what do you talk about?" 'Cause there's a...

When you d- when you do the when you start with speech therapy, obviously they're trying to get you to understand words and so on and so forth. He's beyond that bit, but he still goes for the speech therapy because it helps him improve his own speech by by, a, by using it, not within the family but outside the family with someone who's not in his family.

And and this has helped him, and he's, he said, and I think this is what you have to do. You have to small, little small steps as it were towards getting as much of 100% as you possibly can

audioRobert'siPad21082365960: So he's still ... You can, you don't hit a brick wall, as it were or a plateau beyond which you can't rise above or whatever metaphor I'm

audioJonathanHirons11082365960: Yeah, there was. Yeah. There was, there, there is, there was a school of [00:21:00] thought at some point that said that there was a plateau. And I read that myself when I was researching this, when it's all started. That there is a point where you can't get any better, but I think

disproved

audioRobert'siPad21082365960: incrementally

audioJonathanHirons11082365960: Incrementally. That's a good po- that's a good way of

audioRobert'siPad21082365960: Though I think what we're saying is 100% recovery is probably not possible. You

audioJonathanHirons11082365960: Are highly unlikely, shall we

audioRobert'siPad21082365960: Don't break your heart over trying to

audioJonathanHirons11082365960: Exactly. 

audioRobert'siPad21082365960: Just live with what you can do sort

audioJonathanHirons11082365960: Yeah, and do what you can.

audioRobert'siPad21082365960: Improve a lot,

audioJonathanHirons11082365960: people do get better. And they get better than, better results perhaps than they may have been told in the past.

And then the last one is...

audioRobert'siPad21082365960: future horizons, AI, tech, and creative therapies. Now, we've seen incredible advancements in technology recently. All kinds of stuff, AI-driven speech tools, all that kind of [00:22:00] thing. How do you see AI changing the landscape for aphasia survivors over the next few years, say?

audioJonathanHirons11082365960: I think AI is going to be a game changer actually because we've had pr-predict, predictive text. They can play with p-p-p-play around with people's voices. They can do stuff online. The most incredible thing to me is that they can do tr-translations in another language, on the hoof as it were, and that's incredible.

So these are things that are gonna happen, or are happening shall we say. So it's gonna do-- it's gonna help people with aphasia, there's no doubt about that. With word finding and we, as you and I know we had a a session on this with Abby Roper when she talked about AI in detail and how it affects people with aphasia.

So I, I think AI is in this sense is a good thing. Not good in all ways, but it's good in this particular sense

audioRobert'siPad21082365960: [00:23:00] Yeah, that's a good episode too. People should really

audioJonathanHirons11082365960: Yes, it's on, on, on our... Yes, it's on our podcast list, and you should listen to Abby Roper 'cause that's really good

audioRobert'siPad21082365960: So beyond AI, beyond traditional speech therapy, your film, Tip of My Tongue, is a testament to creativity. What role do creative outlets like filmmaking, music or art play in rewiring the brain and recovering your identity?

audioJonathanHirons11082365960: The answer to that is that, that because of speech art doesn't require speech, doesn't require words. So I think that's a great outlet for people who can't s- can't express themselves in any other way. And art is... And it's very popular, I know, with people with aphasia 'cause it's a way of getting people to understand what's what they're thinking, what they're...

What's happening to them. [00:24:00] Music is very popular with people with aphasia. Some people, not me, but some people who can't speak but can sp- can sing. And singing anyway is a good way of of helping the brain to lighten the load as it were because it gives you endorphins and all that sort of stuff.

audioRobert'siPad21082365960: We should all be in a choir,

audioJonathanHirons11082365960: we should all be in choir. It's very good. It's... Yes it's a very uplifting experience, and you don't have to be great singers to do it. But being together and making a good noise, a gl- a joyful noise i- is something to beho- behold. So I think that's, I think that's that's a good thing for people with aphasia to find other outlets.

Y- what's the word that you came up with, Rob?

audioRobert'siPad21082365960: Neural plasticity I think is the phrase you wa- want- wanted me to say. So that is where the brain, it's this capacity of the brain, isn't it, to [00:25:00] constantly rewire itself.

When you learn anything new, if you didn't drive a car, you learn how to drive a car, you make new pathways through the brain, new neural pathways to give you the skills to drive, to implant them in your brain, so to speak. And that's going on all the time. So that's a big ray of hope, isn't it, I suppose for anyone with aphasia.

A bit of your brain's gone down the pan, so to speak, died, but the rest can rewire itself. You can go round the problem as it were. Find circuits rewiring

audioJonathanHirons11082365960: Yeah, I think that's true. Yeah. And it's been proven many times. As I say, with art and music and I suppose something-- any visual art, should we say, where you don't have to, use words

Speaker 4: Thank you for listening. If you've enjoyed this episode, please share it with others and help [00:26:00] spread the word about aphasia. Together, we can build greater understanding and support for everyone affected by this often overlooked and misunderstood condition. Until next time, thanks for listening

Speaker 6: Thank you for listening to this on the tip of My Tongue podcast. We hope you found it helpful and informative. Now, if you want more help and information about strokes and Aphasia, please go to stroke.org.uk. Say Aphasia. That's SAY [00:27:00] Aphasia or one word.org or the Aphasia page of NHS uk.

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