Reimagining Creativity After Stroke with Dr. Jess Johansson

Creativity, Hope, and Life After Stroke: Supporting People with Aphasia Beyond Rehab

Hosts Rob Edwards and Jonathan Hirons introduce their “On the Tip of My Tongue” podcast, a follow-up to Jonathan’s film about aphasia, a brain-injury condition often caused by stroke that affects language in speaking, writing, reading, and texting; they note 350,000 people in the UK have aphasia yet public awareness is low compared with Parkinson’s. Guest Dr. Jess Johansson, a senior stroke researcher at the University of Leeds/Bradford Institute of Health Research, discusses her 13 years in stroke research and a planned NIHR fellowship application to integrate creative approaches into stroke care and extend support after services end. She describes using crafts like vision boards in stroke groups to promote relaxation, hope, and meaningful activity, emphasizing neuroplasticity and recovery beyond assumed plateaus. The conversation covers fragmented care, the value of groups and social connection, inclusion of people living alone or from deprived backgrounds, shifting away from deficit-focused models, engaging GPs, and raising aphasia awareness through public-facing art exhibitions.

00:00 Creativity After Stroke
00:25 Podcast Intro And Aphasia
01:22 Meet Dr Jess Johansson
02:00 Creative Care Fellowship Plan
03:28 Why Creativity Helps
05:04 Whole Person Recovery
07:16 Research With Stroke Groups
10:12 Access And Inequality
12:01 Living Alone And Support
13:28 Mental Health Adjustment
15:50 Recovery Beyond Plateau
19:43 GPs And Deficit Model
23:01 Raising Aphasia Awareness
25:47 Closing Thoughts And Thanks
26:42 Resources And Community

http://www.linkedin.com/in/dr-jess-johansson-091923383/

Transcript

S4 E5 - Dr Jessica Johansson 
 

Speaker: [00:00:00] Those are the type of things that just allowed them to feel really happy, but also quite relaxed doing it. So whatever they'd produced that day, they would still have enjoyed or found some benefit in that process, and I think that's really important. And I think it'd be good if more professionals were talking to people about creativity and emotional support after stroke in the sense of what that's actually doing to the brain, not just the product at the end 

Speaker 2: Hi, and welcome everybody, and we hope you enjoy this podcast called On the Tip of My Tongue. Now I'm Rob Edwards.  

Speaker 3: And I'm Jonathan Hirons.  

Speaker 2: And this podcast is a follow up to a film which Jonathan made about Aphasia. So what is Aphasia? Well, it's a condition caused by some kind of injury to the brain, which is often could be a stroke or could be just falling off a bike and it affects your ability of. 

To use language in all its forms, speaking, writing, [00:01:00] reading, sending texts, whatever. 350,000 people in the UK suffer from a debilitating condition called Aphasia. Fewer than half this number suffer from Parkinson's, and yet most people have heard of Parkinson's. Whilst almost nobody has heard of Aphasia. 

Jess Johansson: Hi, I'm Dr. Jess Johansson So I'm a senior researcher at the University of Leeds, and I spend a lot of the time at the Bradford Institute of Health Research as well. So I have worked in stroke research for 13 years now, and I'm very passionate about supporting people in life after stroke. I've always had an interest in the emotional aspects of stroke and then more recently, very passionate about weaving into creativity into stroke recovery as well  

Jon: thanks for coming on the Tip of my Tongue podcast. It's great to have you with us. Tell me a bit more about you're doing at the moment[00:02:00]  

Jess Johansson: Definitely. So at the moment, I'm actually putting together an application. So it's for the National Institute for Health Research, and it's to go for a big fellowship. So that will be, if I'm awarded this, it will be five years of funding. And I'm really interested to focus on using creative approaches within stroke care systems. 

So taking quite like a wide-scale approach to this so that people- so that this can be integrated into systems not only when people are within the systems that exist, but so that people have something that they can reach out to or do in terms of something creative once the other care stops. 

Because I think it's really important from the people I've met over the years. I've met many stroke survivors in one-to-one situations and interviews that I've done and also at groups, and people are always wanting to find new things to do, um, that are meaningful to them. And I think I would love to do [00:03:00] something that allows people to be able to access that stuff. 

Jon: One of the things that we do on the podcast is obviously talk about other people's experiences. And one of, one, one of the things we haven't really delved into, is the creative side. We've had a couple of people on had a musician on, and somebody does some does singing. 

But but obviously this is something that you major on, don't you, with what you, with your work? 

I just find it really fascinating, um, in terms of the creative aspects of things, in terms of how that can support the brain. Because I think a lot of people think that to engage with creative activities, whether that's arts or music or singing or dancing or whatever those things are, I think people sometimes think, "That's not for me because I'm not creative." 

It's very fascinating how that can actually help in terms of the brain which is very important, as you'll know, after stroke. So we can support the brain to actually build new [00:04:00] pathways and doing things that we love and looking and thinking about things that we want from the future, even if that's a different future from what people might have imagined before the stroke. 

Arts is a way of doing that, and people can actually feel quite relaxed in the process. Like yesterday, when I went to a local stroke group and did some crafts with them, they all created what we call a vision board. So it was just everything they love, things that make them happy little quotes about what they want from life or things like, "Believe in yourself, keep going." 

Those are the type of things that just allowed them to feel really happy but also quite relaxed doing it. So whatever they'd produced that day, they would still have enjoyed or found some benefit in that process, and I think that's really important. And I think it'd be good if more professionals were talking to people about creativity and emotional support after stroke in the sense of what that's actually doing to the brain, not just the product at the end. 

So [00:05:00] people don't have to be good at these things. It's just about giving something a go. 

I think as you say, medical profession, they talk about the nuts and bolts of things, don't they? But they didn't talk about the person and the person, 

what they're feeling and their reactions. 

And obviously that's something that you're trying to bring to the fore, isn't it, really, with 

Jess Johansson: definitely. So I think the way that stroke care is, and probably a lot of other conditions, I think it can just be a little bit fragmented at times because obviously people will see physiotherapists for movement and occupational therapist for some of the day-to-day activities. They might see a speech and language therapist. 

They might see a psychologist if the service has one. But then obviously that care stops, and then people do want to find a sense of themselves. I'm sure you'll know this from your own experience, but other people as well talk about wanting to feel like safe in their identity again or a new identity. 

They want to feel like there's hope. That's a powerful word that came through from [00:06:00] an event that I recently went to when we talked about what people want after stroke and other conditions. And I think seeing someone as a whole person in that recovery is really important because obviously it's a major life change that requires adjustment. 

But also those impacts that have happened to the brain, depending on how that's affected a person, will impact them in different ways. And I think if someone can be seen as a whole and supported to do something that they like doing, not just something that they've been told to do without the enjoyment. 

A lot of the things to do with exercise, it's great, it's really good, but people will want to be doing things that are enjoyable as well, and not just doing things for the sake of doing it 

Jon: We've talked about, we, in our podcast, we talked about the the cliff that after, after the, after the service is finished, what do you do next? I think groups have their, a very great part in all of this. 

People who get gr- get together with groups, it helps them with their emotional side, [00:07:00] doesn't it? Because they can, they're talking to people with the same problem, 

Jess Johansson: Yeah, 

Jon: and not talking to someone who's, your GP or whatever, who does know what the problem, but they've got other things they want to talk about. 

So you get involved in groups a lot, do you in, in your work or is this some... Yeah 

Jess Johansson: I do. So I actually... So I've worked in stroke research, as I said, for 13 years, and I've always been very passionate about making sure that people who've had a stroke or their family members are very much at the heart of what we do. So I did my PhD research on the family members and friends of people who've had a stroke. 

I spent a lot of time, uh, with carers of stroke survivors back then. But more recently, I've made a lot of connections with the local groups near to me as part of... It was a project called Adapt, so it was focused on supporting people to stand and move more regularly after stroke. So not just in a bout of, like, a single activity in a day, but actually just small movements through the day. 

Um, so we did a huge study [00:08:00] called Recreate for-- w-which was focused on that first, and then Adapt was focused on actually looking at different types of people and who-- what, um, support different types of people might need. So people who are determined or passive or fearful or had other things going on. And then, um, Mark Chapple, who used to run the Say Aphasia group in Skipton, he drew a lot of artwork for the project, and we used that as part of some workshops, and we showcased that in an exhibition. 

So that was an amazing project. So I made a lot of links with local groups, and a lot of the people from those groups were part of that project, and that's received a lot of attention to then be, like, showca-showcased elsewhere. So it's been brilliant for different audiences to know about aphasia as well, 'cause Mark himself has aphasia. 

So even seeing the artwork promotes a conversation. They've met him. Um, he's been able to express things in artwork that he might not be able to express [00:09:00] verbally. And, um, just being able to make people aware of some of those things in different audiences has been amazing. So the general public saw that at the exhibition space because it was in Bradford. 

Um, and then we showed that work again with a lot of health professionals across West Yorkshire and then more recently at the University of Leeds. So that was a mix of researchers people from, uh, voluntary sector, artists people from policy backgrounds. So it was really good and we did a bit of a conversation where I asked Mark some questions at the start of the day as part of the lived experience, and it was amazing. 

I feel like my links with groups has been really powerful for just making those relationships. And then people have been part of the research, but they've really been part of it in a way that they've benefited as well. Like, that's been brilliant for Mark and the people who are involved. 

And then when I go to groups, I do try to, um, do things that are beneficial for the people as well. Like yesterday when I did the crafts, like, they really loved that. [00:10:00] So that's good for me to see from a research perspective, but I like people to take something from it and not just feel like we are Researchers going into a group and expecting to sort of pick their brains but not give anything back. 

Jon: . One of the things occurs to me about groups is how close you are to the group. If you're in a, a large, large county as you are, and down where I am down here it can be literally 50 miles between one place and another. 

Do you see groups as being something that can be, more, uh, available for people, , in all parts of the country?.  

Jess Johansson: So I think that would be the ideal, and I think that's partly what even if I didn't achieve that, for example, within the work I'm proposing, like the idea of like a longer-term plan of things being available would be brilliant because I was part of this, uh, Bradford was a city of culture in twenty twenty-five, and I was part of, um, some of the work. 

So there was a team of people doing a [00:11:00] lot of arts and creativity within Bradford, and then I sat on the steering group for the Bradford twenty twenty-five work. So I was with other researchers, people from public health, people from arts, people from all sorts of different backgrounds. We came together to bring our perspectives, and there's been a cr-incredible amount of work that's been done. 

So that's not specifically in stroke, but it just shows the power of people coming together and creating something quite special within even Bradford alone. 

So bringing people together in groups. It wouldn't be just for people who love arts as such. I'd love to see opportunities for people after stroke to just feel like they can come together and focus on things that they love and meaningful activities. If that was offered more, especially to people from more deprived backgrounds,  

Jon: There is that, there is that side of it, isn't it? You haven't got, you haven't got the money to go, the bus fa- bus fare or whatever it is to go to, a group. That, that can get ... That's tricky, isn't it, this is a question I always ask, which I d- [00:12:00] never really get the answer to. 

, If you have aphasia and you live on your own, that's gotta be much harder than having someone around you all the time, is a- any research been done into people who are, who are singletons, rather than in, in couples 

Jess Johansson: There will be a lot of research out there. I've interviewed a lot of people who've had a stroke over the years, and one of the projects I worked on many years ago before I did my PhD was about life after stroke, and I did interview some people that lived on their own, and then other people with their, they might have been carers or so they could have been spouses or daughters, sons other people, friends and everything. And you do notice different obviously, like you say, they have different experiences, and they might not have as much access to support. For example, like the people with family members close by or within the same household are there to do more with them. 

I have met people at groups that have said they do live [00:13:00] on their own, which is nice to see that they've come to that group, and they do benefit obviously from that social connection. I think that's really powerful for humans in general, like we need that. We need social connection to be able to thrive. 

But I do think more needs to be done in terms of people who are on their own because it is a very different experience to have to try get round everything that you have to navigate. I think it, yeah, it's a lot for people. 

Jon: There's a mental health problem there, 

isn't there?  

Jess Johansson: Yeah 

Jon: with a lot of pe- I know a lot of people who have strokes and et cetera do have problems with their with their mental health. Is that something that will-- it comes into your studies? 

Jess Johansson: Yeah. So I've got a psychology background, so I've always been really interested in psychological adjustment after stroke. The work that I did ages ago did look at life after stroke in general, and some of the themes that came from that were about [00:14:00] the emotional aspects. 

So not only adjusting to the actual event, but also like the day-to-day emotions came through. So people talking about how you manage just the fluctuations in emotion, which might have been caused more by the actual area of the stroke in the brain. And then obviously the adjustment as in it's a lot to adjust to. 

And I'm-- I think it's really important for that to be recognized that it is an adjustment regardless of how bad the stroke's been or what help you've got. I think that's why I'm quite interested in something like creativity or other emotional support because I do value psychologists. I've had chats with psychologists recently, and there's a definite place for that. 

But not everybody actually needs a psychologist. They need someone to care, and they might need lower level support. And there's... And psychologists say that themselves. It's not, that's not me going against psychology because I've got a psychology background. It's massively important for people to be recognized as it's normal to feel that because if it's a huge life-changing event and it has a [00:15:00] ripple effect on families, friends, everybody it's not something that can just be neglected in terms of emotional support. 

And that will change as people change in general in life over, over the time post-stroke. People might have different needs emotionally, and they'll want to be able to do different things that support them in terms of how they feel as they adjust. Because again, at first they might be in so much shock they might not want to be thinking of these things. 

But that's why I'd love for things to be available to people if, for when they do want more support. 

Speaker 7: You're listening to On the Tip of My Tongue, a podcast dedicated to raising awareness about aphasia. If you're enjoying the podcast and finding it helpful, please subscribe to it by clicking on the Support the Show link in the description. Thank you 

Jon: Another question for you really. In your opinion, do you think people improve, post-stroke  

Jess Johansson: so I'd noticed just from [00:16:00] my own experiences of interviewing people, so it must be hundreds of people that I've interviewed because I've done a lot of, we call it qualitative work. So we will go interview people about their lives and that, and then we'll draw themes from that and bring that together as part of our research. 

But I've noticed in a lot of those people that I've met over the years that they'd improved more than they'd been told. So they might have been like one year post-stroke or beyond, and they'd said "We were told in hospital that it might not recover," or he or she might not recover more than what they were at three months. 

And they had-- and it's being more recognized now that we c- that people can recover beyond what was said. So even in the national clinical guidelines for stroke, it's recognized in terms of neuroplasticity, so the brain's ability to adapt which is good to see actually because I think it was quite demotivating and an almost lacking hope for people to be told that because they don't know how to 

Jon: Yeah 

Jess Johansson: navigate necessarily at that point anyway and their families. So it's a lot to hear that someone might not [00:17:00] recover when it's quite an unknown anyway. So I think it's really positive that's now been recognized even in terms of the evidence. I really like that's acknowledged and a lot of the stuff in the guidance is about the physical recovery, so like repetitions of activity. 

But I also think it's really important to think about neuroplasticity in terms of things like arts and just meaningful activities, whether it's arts or not, but the power of that for the brain, and that's been recognized in research that goes beyond stroke as well. So Daisy Fancourt does a lot of work about the science of arts, and it's, yeah, it's good to see people banging the drum for the sort of the evidence side of it as well, so that people don't just think it's a nice to have, whether it's meaningful activity, arts or whatever. 

They're all things that are important for the brain.  

Jon: Just hasn't been sort of t-tacked on, "oh, you've got a stroke, so why don't you do some art?" 

Jess Johansson: Yeah, exactly. Or even just any activity that you love, like it shouldn't be seen as... I don't know, I almost think if people realize the power of it for the brain and for the recovery, [00:18:00] because a lot of people are obviously really motivated. 

They want to get better. So if they could even see some of those things that they love doing, even if it's different through that lens, it can be helpful even for their family members as well. It gives them hope to know that what they support someone with, and they could get involved. There's some activities that people might do that are different and their families might get into something that they never tried before as well. 

Jon: And it's in a positive rather than a da- negative way. Yeah. Talking about timing. I, I think I was given, or I've read that there was a, a plateau that you expect to get a plateau. 

Obviously I talk to people as well, and people do get better, so it's interesting to hear that, um, that the guidelines are changing as well. 

Jess Johansson: I think it did come from a place of sometimes I think health professionals were trying to tread a careful line. That's what... 'Cause I've done a lot of work with staff as well, like in the wards. I've observed a lot in different wards across the country. 

I've done interviews with staff, and you get the [00:19:00] impression that they don't want to give false hope, but it is a little bit of a balance because you don't want to give no hope either. So it's it is a delicate balance and I think when you meet people, so the people who go to stroke groups tend to be, some people are five or 10 years post-stroke, and it's lovely to see them when they say, "I'm still doing things now that I never thought I'd do." 

It's so good to hear. And then they spur each other on. That's what the, like the Skipton group for example, comes to mind, the Say Aphasia group. It- they are so supportive of each other. It's unreal. It's nice to see, 

Jon: My experience of groups, it's quite limited, but the one that I was involved in it was a great community. They were a community in, in the real sense of the word. 

GPs is a question. I'm sure GPs, uh, uh, we know that they've got plenty of other things to do. Is it a problem-- Can it be a problem for GPs not to keep up with the sort of thing you're talking about? As we were talking about, the plateau business, and so on and so forth. 

How [00:20:00] do we get to, um, GPs in a way that they can quickly understand what, what the, uh, the changes have been over with people in strokes, et cetera? , Is there a, an easy way of getting to GPs, in your opinion 

Jess Johansson: And I think it'd actually be fascinating to include GPs actually, now you say it. 'Cause I think often I think about, if I was thinking about the stroke care pathway, I might be thinking of the acute setting where people go and have had the stroke and the rehab and then the community. 

But I actually think GPs is a really good population of people to consider. And I wonder if I've been looking at a lot of this work as I've been putting this application together. And a lot of things are written in the medical model of deficits. Looking at reducing anxiety, reducing depression, and I think that's the case whether you've had a stroke or not. 

If you go see a GP, that's what the focus is. But I think it would be great to shift the narrative towards,, supporting people [00:21:00] to... for what they want to become, not just get rid of those symptoms. If you supported people to move towards a life that they want, they would then be helped to overcome anxiety. 

And you might use some of the same things. Like, even if someone needed medication, for example, they might well still get medication, but at least you'd be able to focus on what they want to be doing and the hope of a life after that, not just, "Let's get rid of these symptoms." And I think that's... Even when I've looked at the psychological guidance for stroke, it's very much written in a way of reducing deficits,  

Jon: so it's, it's negative rather than positive i- in that sense. 

Jess Johansson: And it came out strongly on the day that we did at the University of Leeds a few weeks ago when we did that event where we talked about longer term conditions, and it was about creativity. But this came into it. People were talking about the deficit model across conditions and not just stroke. 

But moving away from that, 'cause the key themes of that day were, like, connection, hope, positivity, possibility. So it's [00:22:00] not always what people did as in trying to dream of things that are not possible but just actual possibility to do new things that they might have not thought about but are possible right now or in the future. 

So I would love for more professionals to even receive guidelines at that, 'cause I think they often follow what they've been given guideline-wise. So I'd love to have a framework or guidance or something that shifts that narrative 

Jon: I think the problem with GPs, and this is only from my own personal opinion, is that they've g- they haven't got the time 

Jess Johansson: Exactly. 

Jon: to have those discussions each patient 'cause I, I don't know how much time they give each, patient, but it must be minutes, 

Jess Johansson: Probably 10 minutes max I'd 

Jon: I feel for them in some ways because they don't have the time I've a- actually asked my local practice if they, if I could do a talk about, uh, aphasia, and they said, "What a great idea." But, you know, a year on nothing's happened, obviously not gonna press, press it too much, but obviously they have other [00:23:00] things on their minds other 

One thing we talked about yesterday was that aphasia is not, life-threatening. I mean, and, and most strokes can be obviously, but, but somebody with aphasia, it's not life threa- threatening, so therefore it becomes a secondary problem rather than a, a major prob- the major problem's the stroke, the secondary problem is the aphasia. 

Jess Johansson: And I think as well that will come down to how the whole of the healthcare system is. So like you say, it'll focus on emergency medicine, which quite rightly it needs to at that point. But that's where I think we need something else and maybe not just rely on the healthcare system to provide some of this support I've been talking about. 

Because if we could link even with, like, the voluntary sector or some more creative ways of being it wouldn't rely solely on the medical system. So it's not that you'd want to replace that 'cause you need obviously acute medicine and you need people to make sure people are safe in terms of what's happened after a stroke. 

But like you say, aphasia is ... it needs more attention for the wider population to know about it. And I [00:24:00] think it was quite interesting, you know, when we did the art exhibition, we left a feedback box. So people who had visited actually wrote in there saying, "You've taught me about aphasia. I never knew." And it was so powerful to think that 

'cause Mark had some artwork that came to life. You held like an a- your phone over it on this app, came to life. It's, it, he was speaking on the video thing about aphasia. And some people, it might be the first time they'd heard about aphasia, but it's just so powerful that they then knew what it was. 

So I think just public awareness as well, 

Jon: Yeah 

Jess Johansson: of stroke in general. And it's interesting because when we did a stand at the hospital last week, people seemed to be aware of the FAST campaign, 'cause it's on the adverts. So it just shows that's seeped into people's minds, more 

Jon: So we need another, we're talking about aphasia specifically. I know you talk about strokes, but we want something similar going for aphasia, which is like 

FAST. It's back to 

we need more groups around the [00:25:00] country, 

Jess Johansson: And awareness in general. 

Jon: What we're all trying to do 

Jess Johansson: I don't even know the best way sometimes, because I think posters as well, people become blind to posters.  

Jon: It's a bit old school, isn't it? But m- maybe it has to be like that 

you can't have an online campaign for 

Jess Johansson: I think in-person stuff, it-- like, when we did a stand at the hospital last week, it was really good promoting some of our work. And I think human connection is good again, because if people were stood in public spaces and talking about something, even if people who have aphasia themselves were there, it's, it just allows people to realize so that they understand what it's like for those people. 

Jon: Obviously that's one of the things that we'll bang on about, when we haven't lost our our intelligence. We've just lost a few words along the way, 

so anything else you want to tell me about , your work? 

Jess Johansson: I just really want to see more hope and possibility for people, and for people to be supported and [00:26:00] included, like I said, with people who might not normally access support, whether that is one-to-one or in groups. I would just love for more people to have that opportunity, and that's what I'm working towards. 

It'll be the whole of this year actually. So I'm making a lot of connections across the country with academics or with people who work in these settings and obviously stroke survivors and carers. That's my mission to do 

Jon: , I wish you all the best and luck with that. I'm not... You don't need luck. You need-- I, I'm sure what you do will be fantastic thanks for coming onto the podcast. It was great to talk to you. And we will obviously keep in touch. 

Jess Johansson: Definitely. Thank you. Thank you very much. 

Jon: Bye. 

Speaker 8: 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 [00:27:00] stroke.org.uk. Say Aphasia, that's S-A-Y Aphasia, all one word, .org or the Aphasia page of nhs.uk. 

Speaker 5: You know, Jonathan and I talk a lot on this podcast about the impact of Aphasia. But the conversation doesn't have to end here. If you are a carer, someone who is the voice for a loved one every single day, we've built a space on our website just for you. It's full of resources to help you navigate those tough moments. 

And for the professionals out there, therapists and clinicians who are doing the vital work of rehabilitation, we have a dedicated page for you too. With materials you can use in your own practice. The website is tip of my tongue film.com. Take a look, explore the new pages, and please [00:28:00] send us a message. 

Tell us what you need or what your experience has been. We are building this community together and your voice is the most important part of it. 

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