Podcast – Reimagining Dementia with XR & Digital Therapeutics

Voice Over

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

Byron Creese

Hello and welcome to the Dementia Researcher Podcast. Today we are exploring XR, spatial computing and digital approaches to understanding life beyond memory in dementia. My name is Dr. Byron Creese, I'm a senior lecturer in psychology at Brunell University of London, and I'm delighted to be hosting today's show. Extended reality, spatial computing and sensor-based systems are moving from gaming, creative practise, and industry into health and care settings. These tools allow researchers to study how people interact with environments, objects, and routines in a more natural and responsive way than traditional clinic rooms. With us today are three people working at the forefront of this area. We've got David De Jong-Bambagioni, who works with healthcare organisations to tackle efficiency challenges and bring insights from gaming, spatial computing and XR into clinical practise. Dr. Emilie Brotherhood, who explores psychophysiological responses captured through sensor platforms and investigates health spatial computing can support digital markers, and assessment for people with non-memory led dementias. And Alice Wroe, XR lead at the Atlantic Institute where she supports a global fellowship, and explores how extended realities can advance social equity and what it means to be human in digital spaces. Hello everyone.

It's great to have you with us. To start us off, can I ask each of you to introduce yourselves? Let's start with Emilie.

Emilie Brotherhood

Hi, thank you. So I'm Emilie. I'm a senior research fellow in Neuropsychology, and I'm based at the Institute of Neurology, Queen Square University College of London.

Byron Creese

Thank you. And Alice?

Alice Wroe

Hello. I'm delighted to be here. Yeah, my name's Alice Wroe, and I'm the extended realities lead at the Atlantic Institute. And so we think about how emerging technologies can enable our community of fellows, and our partners to be on the front foot with emerging technologies. So it's not something that happens to us, but it's something that we can kind of engage with to think about how we can build fairer, more inclusive societies using this sort of emerging tech. David is a fellow actually.

Byron Creese

Nicely to David. Yeah.

Brilliant. So you're teeing up David.

David De Jong-Bambagioni

Yeah, so David De Jong-Bambagioni from the Netherlands and I'm a social entrepreneur in the Netherlands, and we work with XR to improve process in hospital care, and dementia care, psychiatric care. So very broad, but we use the technology, how can we improve healthcare yesterday.

Byron Creese

Brilliant. Thank you all. So I've actually work in dementia care, but much more on, I guess more typical psychology background. So this is really exciting for me. Let's get going. So let's begin with your individual work. David, could you tell us about the work you're doing with extended reality and spatial computing, and what you're trying to understand or change through it?

David De Jong-Bambagioni

Yeah, so my company, they're health and facing in the Netherlands, we work on , educational technology and MedTech and medical technology. And what we do with the part is change the way we train nurses, caregivers, give them information in a different way. We use 360 video for that. And what we do is like empathy VR, so you can experience how it is to go through the four phases of dementia, or how it is to have a psychosis, just to step in somebody else's shoes to empathise with the other person. We also do virtual excursion. So if you are living with dementia, or laying in the hospital and you can travel around anymore, we have beautiful beaches, forests, even train stations. Some people like to be on a train station. And also we do social skills training, so improve the way you interact with medical staff, patients, that kind of stuff. And also like movements, so like body movement in 360 and with a med tech, what we do is we optimise processes around medical devices. Think about track and tracing like your Apple Air tag that you know, where your bag is, where your bike, but then in a medical setting, in a hospital, we do warehouse management. So where are all these devices? It's a big challenge, like where are the medical devices and dashboarding with AI agents. So that's like smart assistance that can help you to find the right medical device. So you go to a patient, what does the patient need? And in that way you find the right medical device, and the information part for the carrier like is done with augmented reality. So you can see the medical device in the space. So if you want to troubleshoot, then you can see the medical device in front of you on your desk and then you can say, oh, how does this button work? Or that kind of thing. So that's what we do with XR.

Byron Creese

Great, thank you. And Emilie, your research spans spatial computing, digital signals and psychophysiology. So could you briefly describe what projects you've worked with in this area? What questions are you hoping to answer?

Emilie Brotherhood

Yeah, sure. So my PhD was looking at the sort of in the digital signal space in a more dementia care context. So Byron kind of aligning with your work. And that was really about using kind of infrared cameras to pick up signals, like changes in pupil responses as people listen to familiar and unfamiliar music, and those populations and people with different types of Alzheimer's disease. And that was really to answer research questions like how can we augment and improve personalised interventions in dementia care? But while that was going on, I was also collecting pilot data that was looking at innovative ways that we could use extended reality in the field of dementia assessments. So moving sort of from a care to actually diagnostic capacity. And this would particularly address things like how we detect changes in competitive domains aside from the memory challenges that we tend to see in more typical forms of Alzheimer's disease are moving towards detecting subtle behaviour and social personality changes in the, for example, the ability to exhibit empathy that are often observed in people with frontotemporal dementia.

Byron Creese

Great, thank you. So you're working in, I guess the less common dementias then. So taking in FTD as well as Alzheimer's. Great. Alice, you approach XR from a creative and equity centred perspective, could you share what you are working on at the moment and how you think extended realities will help people and society?

Alice Wroe

Yeah, and it's so brilliant to hear David and Emilie's work because with extended realities, the vast majority of this tech is used for military, and for gaming and it's just like mega dominated. It's then when you hear about work like this, it's just twinkling for this new kind of thoughtful future with this technology, that's so exciting. Yeah, so I work, as I've mentioned at the Atlantic Institute and we believe that this type of technology is gonna change the way that we all navigate our futures in terms of our work lives, our professional lives, and we wanna make sure that our fellows, our partners, our community at large are people that feel confident and safe to be critical to champion this tech, to kind of creating it, collaborate through it. So we put a real strategic focus on this particular area, and so we've been working in three main areas. So we're thinking about co-presence, how can our global and growing community be together whilst we're physically apart? We've been thinking about how can this technology lift the equity work of the fellows? So projects like Emilie's and David's, it just kind of sings to our hymn sheet. It's about taking people that may not ordinarily have access to this sort of tech, bring their expertise and just lift it into their work and raise their equity work. And then the third one is around thought leadership. So this tech space is so often dominated by the same voices with the same kind of backgrounds. And we actually think that through interdisciplinary engagement, that is how we're gonna make progress, social beautiful progress in this space. So it's bringing fellows together, our partners together, our communities together to gather around this technology and dream with it fundamentally. And so we are raising the tech literacy as well. And so finally, I'll just give you one example of an actual piece that we're working on. So one of our fellows at the moment is creating a piece with our lab in Oxford, in Rhodes house. We've got a brilliant XR specialist, Richard Smith, and they're making a 360 film about climate anxiety called "Living in Water" in collaboration with the equity initiative in Southeast Asia. So we're thinking about climate anxiety globally, and how it lives differently depending on where you are. And so we're making work like that, but for me it's the tech literacy and the raising of who is in the room talking about this stuff that really makes me sing.

Byron Creese

That's great. Thank you. Such enthusiasm from all three of you. Can I ask about your backgrounds. Are you a health scientist, psychologist who've moved into tech? Or are you tech people who've moved into applying your skills to healthcare?

Emilie Brotherhood

I've lived in academia for a decade as a neuropsychology researcher. That's very much where I've stayed.

 

Yeah.

David De Jong-Bambagioni

By origin, I'm a social worker, so I rolled into this technology.

Byron Creese

Oh great.

Alice Wroe

Oh, I love that. Rolled into technology. There's an artist called Stephanie Dinkins who works a lot in tech, and she calls herself an accidental technologist, which is what I relate to as well. So my background was in creative direction and then I was kind of picked out of it by an amazing CEO of a spatial computing company, Magic Leap. And he just knew that if you get people whose background isn't tech, actually, that's where you can kind of dream the biggest things when you bring them together with tech people. And we all kind of merge and become one. So I ascribe to the accidental technologists.

Byron Creese

Let's move on then to, I guess talk about that tech, XR, an immersive environment. So extended reality would include things like virtual reality, augmented reality, and mixed reality. And these tools can produce naturalistic, and responsive environments for assessment and support. I mean, that's as far as my understanding would go. So what I need is for you to help me out a bit. So perhaps Alice, can I start with you? For those unfamiliar, can I ask you to tell us the difference between extended reality, virtual reality, augmented and mixed reality?

Alice Wroe

It would be my pleasure, Byron. So fundamentally, XR is this kind of big umbrella term that encompasses a load of different immersive technologies. So please don't feel intimidated by that term. If it seems interchangeable, or there's lots of different things, it's because there are loads of words that kind of mean similar things. So VR as you said, virtual reality as if you put a headset on, all you will see is the digital world in front of you. So if you're wearing a virtual reality headset, you might actually just like walk into a chair, or like stub your toe 'cause all you can see is that virtual world. And then you've got augmented reality, and mixed reality where the digital and the physical worlds come together as one. So actually as you put those sort of headsets on or you kind of bring them up using your phone, you'll see your world around you, but you'll have digital content that is kind of engaging with quite poetically that the worlds that you have around you. So I think those are the two big ones to understand. Some people call it spatial computing or the metaverse, the embodied internet, all these different terms. But fundamentally it's everything that like bursts out of your screen and into your environment in different ways.

Byron Creese

Great. And David then, how do you see XR helping clinicians understand the day-to-day challenges and other things that might be missed in clinics, specifically as it pertains to dementia would be really interesting?

 

 

David De Jong-Bambagioni

Because of what we do is like... So what we do is community driven VR. So together with like clinicians, we try to figure out what are the challenges clinicians are facing in the day-to-day clinic that they could miss. And then you just like, you kind of create like a sandbox, like a safe space where people can experiment. So like for example, we have one training, and it's regarding seeing the difference between a delirium or like symptoms of dementia. So we try to like simulate environments where like you can make decisions and choices that maybe you would not do in a clinical setting to like empathise, look at the... Like how do you communicate, what is the workflow, what are the processes, how can we optimise those to train in a safe environment? And what I said before, I think the empathy part, like the empathy trainings we create I think are very powerful, even though you're a clinician, even though you study the subject or a certain disease, like the moment a patient's sitting in front of you , how do you know how their world is? How do they view you sitting on the other side of the table, you know, with the white coat effect, of course. So stepping in the other person's shoes and experience from the other way is really helpful. So, and that's the kind of sense we try to optimise the day-to-day clinic to, you know, step in somebody else's shoes and just get out of your own bubble.

Byron Creese

Yeah. Does it extend as well to, like the room I'm sitting in right now is work you can see 'cause it's really bland.

Alice Wroe

I thought that was just your taste, Byron, minimal man.

David De Jong-Bambagioni

Your virtual backgrounds, we thought you're in a metaverse.

Byron Creese

Yeah. But so would it extend to like doctors, or other healthcare professionals consulting in a very sterile environment, does it extend to helping them understand how someone operates in the real world at home? So almost simulating if you were to go, and watch someone in their own house and draw insights that way.

David De Jong-Bambagioni

Yeah, yeah, exactly. Yeah.

Byron Creese

Oh, brilliant. And Emilie, how does spatial computing use these realities then and what do they offer when measuring subtle changes in how people interact with their surroundings?

Emilie Brotherhood

So it's really interesting, David to, you know, hear about your work using VR as a, or XR as a vehicle for empathy because this is exactly the reason for a very different motivation. But it's exactly the reason I want to incorporate it in my research in the pilot data we collected. And that's because in the diagnostic criteria for a particular type of this sort of frontotemporal dementia that I'm interested in, one of the diagnostic criteria is a mark change in empathy. And for a clinician and for a caregiver, that can be incredibly obvious when you're sitting in the room and a carer is relaying a story, for example, about how some, you know, they injure themselves. And it was so strange the reaction of the patient because they thought it was hilarious, which obviously isn't a normal response and very different usually from hopefully what their kind of pre dementia empathic response would be. So I'm taking sort of the same, a principle that VR could be used for empathy and trying to use that in an assessment capacity. But the beauty of these, all of these environments and in a virtual world is that for a researcher and scientist, I want to be able to standardise that experience and exposure, and create a virtual environment that would be almost impossible to replicate in a standardised way in any clinical setting, unless you had at your disposal these technologies.

Byron Creese

Are you designing the technologies Emilie, or someone else?

That is somebody else.

So you're deploying them?

Emilie Brotherhood

Yeah, so it would be sort of co-developing and perhaps we move on this later, but you know, the kind of co-design process with people with lived experiences, so central in order to kind of hear the stories of what sounded like an empathy change for their loved one from a carer's perspective, you know, those kind of, we use for the pilot work that we've done, they have helped develop and develop the story that then when we've collaborated with engineers, and computer scientists to develop these virtual worlds, they're the stories that we've taken. And then really I'm looking at the kind of clinical angles of how good this assessment could be.

Byron Creese

Yeah, yeah. So co-design is a part of the front end of it. So the sort of, yeah. Okay. Yeah. And then so you are involved in that and then Alice, and I think David, I'll bring you in on this as well. I guess that leads in nicely to how we ensure that these various tools are shaped by the people that they're supposed to serve. Emilie's just given an example there, is there anything that further back in the process, I dunno what the tech term is for earlier in the development that...

Alice Wroe

Yeah.

That we need to think about?

I mean, I think Emilie is just completely nailed it in that, that is how... If we are gonna create meaningful experiences that will create impactful change, they have to be designed by the people that they seek to serve, and kind of have that lived experience embedded into it. We have a fellow, Miriam Hernandez that has written a really brilliant paper on community led storytelling in VR because even more so than other media, virtual reality, you know, it takes everything and particularly 360 films, it can be extremely exposing. And so the risk to... There's all sorts of risks in terms of telling other people's stories using this technology. And so I think that absolutely what Emilie said is the way forward and the only way actually to create these ethical kind of pieces. In terms of, I think your question around the actual of technical development of it, I mean that is always a win if you can bring people into the process as much as possible. So Richard Smith, the Excel specialist that we have at the lab, well when he's doing 360 filming, he is always explaining to the community exactly this is what the camera's doing, this is why I'm putting it here, do you want to, you know, press this button, where do you want to place the camera? It's about always asking those questions. And then certain people might just rise to the occasion, and want to do more training themselves and we would love to support 'em to do that. But it's about bringing people in, and demystifying this process that can often feel exceptionally kind of dense and just kind of making clear, this is what we're doing, this is why we're doing it, how do you wanna do it differently or with us.

Byron Creese

And David, have you got some examples from your work to add?

David De Jong-Bambagioni

Yeah, no, I would say, this is a bit weird saying that XR tech... XR is not about the tech, it's about the people. So, and that's like, we started already with... We talked about gaming. So even in gaming, if you don't make a game for the gamers, still not gonna play the game. So if you don't make experiences or XR applications that like really solve real world problems for clinicians or people living with dementia, then you're doing the wrong thing, I think. So I would say like... And it never starts with the tech, so that's I think also the big challenge in the field we're in. So like there every few months now, luckily new spatial computers and headsets are coming out, which is amazing, but never start, like, I never start with a tech. In general, when we have co-creation sessions, we never bring the tech in the space, we bring pencils, we draw, we start in a creative setting to understand like what is it, like, peel off the onion, what is the real challenge you're facing? And then maybe the tech can be a solution. So sometimes we do a session, and then the XR is not a solution and something completely out. So never start with the tech, start with like the problem, the challenge that people are facing and then you can build up towards XR. So I think that's how you should look at this technology.

Byron Creese

And so in the... So thinking about dementia specifically, then it's sort of the... If we're extending what you said into dementia, you'd be thinking about what problems are people with dementia facing? What do they tell us that they need? And then is this type of tech a solution?

Or even carers

Alice Wroe

Right.

I've seen an amazing piece in terms of the people that are living with, caring for, and exactly what both Emilie and David said, that XR is an empathy machine. You know, if you can experience something of what it might be like to live with dementia through the headset, you can then care from a completely different angle than you would if you're living with your own kind of biases, frustrations, overwhelm. It can kind of take you into a different space to love and care for somebody that has dementia as well.

Byron Creese

That's a great point, yeah. I think we never mustn't forget carers. Do people like it this technology, people with dementia, carers, what's the uptake like?

David De Jong-Bambagioni

Yeah, so the experience of caregivers, like we have a lot of like, so these 360 experience, we have like very emotional sessions sometimes with family members that as Alice said, like you're in your day-to-day, you're caring for your partner, you have to get your kids from school at four, you know, there's a lot going on in your life. And then like you get to the , especially caregivers, a lot of burden on caregivers and things in global north and the south. And we're facing in the global north a specific challenge with ageing population. And so there's a lot of burden on caregivers and like sometimes we forget, so like, but to understand like a grandson, so my grandmother has dementia, doesn't really understand what that is. And when we give them this experience, like they're really like that in a sense. Like to understand like, what is it then? And of course it's not perfect, you know, I'm not gonna say our training is perfect, but we try to get as close to reality as possible. And people living with dementia, like, yeah, surprisingly, like there's like... Some people like to watch , some people don't like it, some people like to read newspapers, so it's not for everybody, but the people who are into it. I had like 102 year old ladies that like were in a rollercoaster and said like, give me another spin. But the thing is like if I give a first demo to somebody, I would never give a rollercoaster experience as it's like really can make you really sick. But she always went with her kids to a theme park, but now being in a wheelchair, half paralysed, living with dementia, like, I can't go anymore. So for her it was like, it was perfect. So it's not for everybody, but I think sometimes people are very hesitant to offer XR to people living with dementia. And of course there's like some design principles and you have to do an ethical way. So like, I'm not saying like give them any experience, but people are open to it, they really love it and they like the renascence, like going back in their childhood for example, had one lady base jump in VR, so base jumping and like afterwards, like if you looked at experience, the gaming experience, like we said, wow, I don't know. But then the things she came out, so like to... With my husband when we were together, we'd go on a holiday to this island. We saw people jump out there. So like she started about her husband, her family, her past. So it's like, it's also this reminiscence therapy, like it brings like emotions up that like are so hidden, but a moment you're like, you have an embodied experience like you're sharing that and then yeah, these memories pop up and then you have really beautiful experiences. And then nurse is saying like normally she never speaks, and now she has this whole conversation of 20 minutes about her past, so yeah.

Alice Wroe

And that's... I think David's touched on something beautiful there because so often people think with this technology it isolates us, it takes us away from each other. It's all about being on your own with a computer screen. But like David, you lit up when you talked about what she said, the story she was telling, it's a conversation starter doesn't quite do it justice, but it enables people to tap into something that a part of themselves that they want to share, which is really special.

So I think David, what you were saying just now, I think reminds us as well that we shouldn't ever forget those basic person centred principles that we, you know, we're all used to whatever part of research or dementia care we're into, it's really important. The content you deliver is relevant to the person. I mean that be fair.

David De Jong-Bambagioni

Yeah. That's for sure. And especially in, I think especially in the technology space, I think it's very important. It doesn't matter if it's XR or it's smartphones, whatever it is.

Byron Creese

And Emilie, how do your participants like the technology or perhaps more interestingly or as relevant, have you had any experiences where people just hate it and what have you done then, and?

Emilie Brotherhood

So, no, it's a great question and I think it... You know, we had, as with every research approach, we went through a very stringent ethical review, rightly so. It was, you know, our protocol for this essentially what was a feasibility in pilot study in this area, 'cause it was very novel, was, you know, obviously very heavily scrutinised and you know, a lot of... We answered lots of the ethics committees queries, which really centred around an interesting philosophical discussion around the almost philosophical in itself of immersing people, you know, vulnerable older adults who perhaps potentially are unsure of what reality is, or unscented in reality as it is. How ethical is that to centre somebody in essentially something that we all know is virtual or essentially fake. And so I think it was for our populations that we were interested in, it was really... It was very important that we kind of emphasise that this isn't the type of confusion that tends to be seen in these patients. It's not really challenges with memory, it was more to do with these kind of behavioural changes, which many of these individuals don't have a lot of insight into having and that's why this tool is so important. So we were able to sort of navigate that ethical process, which obviously had to be, you know, completely rightly done. And when we sort of got to the other side, and started looking and collecting the data, you know, people tolerated it really well. We made sure we had pre and post kind of sickness simulation questionnaires to establish how they were feeling, if they were dizzy, if they, you know, had any kind of adverse physical effects and we were videoing the whole interaction, so we could really hear obviously, and I was observing the whole time and we had lots of kind of safeguarding things in place if anyone did struggle or were distressed by the environment. But we didn't in my experience, no we didn't encounter any of those, which was encouraging.

Byron Creese

Yeah, that's great. But you obviously went through a really thorough process to ensure that the technology would suitable for people, and that obviously operating in sort of proper ethical frameworks.

Emilie Brotherhood

Of course.

Byron Creese

Which is good, yeah. Or important. So I guess, yes, thinking about ethics, thinking about research, then there's probably a lot of researchers listening, they might be thinking this is great, this is super interesting. I'm not a coder or a tech designer, or have a computing background at all, how do I begin? How would you answer that question? What advice would you have? Alice?

Alice Wroe

Yeah, I mean it links back, doesn't it to what we're talking about earlier in terms of how we all came into this space with the accidental technologist thing. The brilliant thing about the Atlantic Fellowship for me is the interdisciplinary nest of it. You bring together poets, doctors, activists, community leaders. And when I spoke earlier about raising that tech literacy, all I'm really saying is about raising the confidence, so that when you are in a space that is discussing this type of technology, you feel able to bring your own real life expertise, your own lived experience into that space to have an opinion. So for me, I think what I would say to people that are interested in this space is trust your interest and start being interested and talking about it, and having opinions on things and researching and thinking. And then in terms of if you actually want to create a piece, then there's all sorts of quite interesting grants where you can be paired with somebody with a more kind of tech technical specialism as Emilie was mentioning. And there are loads of brilliant technologists who are excited to collaborate with organisation, and institutes and bring those expertise into the technical space. So for me it's around confidence, and it's not actually only for the benefit of that person, this is for the benefit, without sounding too overblown of humanity, like technology is how we are all moving forward in terms of navigating our lives. It is absolutely imperative that we are all invested, and all feel able to be part of it. So it's a kind of political act I think. So if you feel interested or completely scared about where the world is going with tech, listen, pay attention and bring your beliefs and what you have expertise in to that table.

Byron Creese

So that applies not just to end users of the technology people...

Alice Wroe

No.

Byron Creese

With mentoring carers, but actually as researchers, people who...

Alice Wroe

Absolutely, yeah...

Byron Creese

Moving into that.

Alice Wroe

I mean, to be honest, like exactly what Emilie has done, you know, like Emilie was saying, her background has been in academia the whole way through and she works with teams to kind of lift up her work into this space. Like that's what we should all be doing with tech. It's like thinking about how we can weave it into our own lives so that we can build just kind technology that creates just kind futures fundamentally. So I think Emilie's a great example as is David actually, in terms of social workers. So what a brilliant group of people you have here in terms of showcasing, you don't need to go to kind of MIT and have a hundred degrees, you bring what you have and it meets you where you are and that's vital.

Byron Creese

So on that then, David and Emilie, can I ask how you ended up in this field then from your respective earlier disciplines, perhaps David.

 

 

David De Jong-Bambagioni

So in 2013, my brother and I, especially my brother, he backed the Oculus DK1. So was like long time ago, and he started to make YouTube videos with that. And I can tell you the first experience I had was like in a little rollercoaster with a ball rolling behind me. And then you... So anyway, not great experiences in the beginning. And in the beginning I didn't think it would revolutionise healthcare in a different way. But then exposed therapy came from the U.S. and then I did... During my bachelor's, I did some research like, oh, and then it clicked for me when I saw the effect of it was really simple with like 3D spider on a table. It was like really simple, but effect it had on people how realistic it was for somebody with a phobia and how you could trick somebody with a spider not having a real spider. So that really clicked for me. And then yeah, it kind of snowballed from there. And everything I did in my social work career, every time I linked it on VR, what can the stack do? How can we change? And then in 2018 when the Oculus Go came, so it's like a standalone headset. That was a moment I was like, oh, now we can implement this in healthcare and have it in a scalable way before you were connected to computer and cables, and it's great for research and really like point solutions, but like scalable, training people, taking people. That was a moment I was like, okay, now we can do it at scale. So yeah, and he has a very successful YouTube channel now where he reviews VR headsets and XR experiences. So yeah, so it came in from the gaming entertainment side and now we're here.

Byron Creese

Great. That's amazing. Emilie.

Emilie Brotherhood

So my, I mean to all credit to the PI I've worked with for many years, so professor at UCL, this was really a grant that I joined as a junior researcher. And this pilot, this was sort of more the very kind of... As part of a programme grant, this was the kind of high risk but high impact bit which was a bit lot more exploratory. And so that's... I mean, I was very lucky to have joined somebody who had the vision to incorporate this, but this was a number of years ago. And I think for us, while the pilot data was really exciting, the kind of barriers at the time was that it wasn't going to be as accessible as, you know, the tech kind of almost hadn't caught up to the idea of, oh this has to be deployable in clinical settings. And you know, at UCL we were very lucky to have a very high resourced virtual reality environment that just wasn't going to be accessible in clinical context. So it kind of you know... And then other research projects came up and I continued in a sort of digital signals avenue, but then I was reinvigorated by this actually, Alice to say about, you know, be a part of the story is from lived experience of a close family member who they didn't have FTD but after stroke had exhibited like these March behavioural changes that were very similar and luckily for that family member that was transient. But for me it was very frustrating that even at that point and knowing that this, you know, this is kind of down to a neurological change, There was no standardised assessment that could show a clinician or that they could track if he was getting better, or he was getting worse or that, that was different to what was expected and that he had been his whole life prior. And I think for me it really... That lived experience kind of reinvigorated the interest and made me wanna pick this back up and extend that pilot work. And that's kind of why I am talking about this again now after all these years.

 

 

Byron Creese

Fantastic, thank you. I think that you've all spoken constantly about keeping the human experience central, without, I don't want to sound too cynical, but you could envisage a way, a scenario in a particular situation where it might be really tempting to just pop a headset on someone and leave them to it. And as the technology becomes more advanced, it might be easy to lose sight of the person at the centre. So to all of you, where do we really need to be careful and reflective as we develop and deploy these technologies? Perhaps I'll start with Alice.

Alice Wroe

Yeah, absolutely, everywhere. We need to be keeping our eyes open at all points. With this technology, with all emerging technology, there is exceptional potential, which we have beautifully revelled in today. But there is as critical risk, there is so much risk with this technologies. It's also a kind of perpetuation of the world we live in. Like technology is not this separate thing happening over there. The biases, the prejudices, the kind of entrenched racism, sexism, homophobia that kind of lives through our society is replicated in lots of these digital spaces. So it's about recognising that we are at a really exciting moment, especially when you think about kind of artificial intelligence and immersive environments and kind of the co-presence that I mentioned. But we are also at a tipping point where we've got an opportunity here not to perpetuate the pains and the harms of the past, and the present into the future. And actually I'm fearful, definitely fearful that, that is exactly what we're doing. That they're baked into the new systems that are gonna kind of affect all of our futures. So I think it's vital that we talk about this more widely than just in tech spaces at this tipping point that we are in. So that we can be very deliberate about the spaces, about the data, about the kind of ways in which we are deciding to commune with each other in these new spaces. Because deliberation, we have to be deliberate, or we're just gonna end up with an even worse situation than we have now.

Byron Creese

Thank you. And then Emilie and David, just specifics about your areas where you are most reflective and careful in your particular cases. Emilie.

Emilie Brotherhood

I think it always comes down to patient safety and I know that's sort of a kind of nuts and bolts answer, but to speak to any other parts I'd just be repeating Alice's very sentiments, which I really echo strongly. So for me in a clinical research setting, it has to be about that kind of more...

Sure.

You know, a very kind of pragmatic answer to keep it short...

Byron Creese

No, that is, yeah, important though. And David, anything specific from your area?

David De Jong-Bambagioni

I think most have been said, but I think especially like incorporating because like this technology is like, I don't wanna say it's a global north technology, but it is like predominantly in a certain field, certain people, can all think who those kinds of people are. And I think like the challenges we've been facing now that have happened a hundred years ago, which like inequalities we're still facing, I think with technology, for me being in the space, looking around who's in the space, being in the tech space with XR, like seeing like the digital literacy, like if we don't design the right way and we don't incorporate the global south, I think we're gonna have a big challenge of like in a hundred years from now, looking back at this time that we didn't incorporate the global south or certain people with certain backgrounds to make this an inclusive technology. And then a hundred years from now, we'll just like try to solve the problems that we start here. So like looking at the past, looking into future, then that's something that I think we should be really aware of.

Byron Creese

Thank you. Thank you very much. Really important point everyone. So we're almost out of time, but before we finish, I'd like to end on something a bit fun. A lot of what we've talked about today would've seemed like science fiction just a few years ago. So I'd like you to tell me, if you could bring one thing from science fiction into reality, what would it be? David.

David De Jong-Bambagioni

Something from science into reality. I feel like we could have a time machine.

Byron Creese

Time machine...

Would be great.

Alice.

Alice Wroe

Oh, I've seen it happen too many times. People are looking through science fiction and making it real. So I would just say I would like those tech bros to start reading rather than the other science fiction that they seem too well versed in.

Byron Creese

And Emilie.

Emilie Brotherhood

I'd go for the Star Trek universal translator and if I could extend it to animals as well, I think that would just...

Byron Creese

Oh.

Fascinating.

Alice Wroe

That's so nice.

Byron Creese

So if you're listening to this, we'd love to hear your own science fiction wishes. You can add that to the comments. I'd really like to thank David, Emilie, and Alice so much for joining me today. And thank you very much for listening. You can find out more information and links to resources at our website, which is DementiaResearcher.NIHR.AC.UK, and do also visit our community app where we continue these conversations and share new events, blogs, and podcasts. So my name is Byron, and you've been listening to the Dementia Researcher podcast and from all of our guests, goodbye.

Voice Over

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