Latest / Dementia Researcher Vodcast / Reimagining Dementia with XR and Digital Therapeutics

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Reimagining Dementia with XR and Digital Therapeutics · Dementia Researcher Vodcast

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  The Dementia Researcher podcast,
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  talking careers, research, conference highlights,
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  and so much more.
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  - Hello and welcome to the Dementia Researcher Podcast.
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  Today we are exploring XR, spatial computing
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  and digital approaches to understanding life
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  beyond memory in dementia.
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  My name is Dr. Byron Creese,
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  I'm a senior lecturer in psychology
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  at Brunell University of London,
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  and I'm delighted to be hosting today's show.
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  Extended reality, spatial computing
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  and sensor-based systems are moving from gaming,
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  creative practise, and industry into health
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  and care settings.
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  These tools allow researchers
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  to study how people interact with environments, objects,
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  and routines in a more natural and responsive way
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  than traditional clinic rooms.
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  With us today are three people working at the forefront
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  of this area.
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  We've got David De Jong-Bambagioni,
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  who works with healthcare organisations
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  to tackle efficiency challenges and bring insights
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  from gaming, spatial computing
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  and XR into clinical practise.
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  Dr. Emilie Brotherhood,
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  who explores psychophysiological responses captured
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  through sensor platforms
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  and investigates health spatial computing
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  can support digital markers, and assessment for people
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  with non-memory led dementias.
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  And Alice Wroe, XR lead at the Atlantic Institute
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  where she supports a global fellowship,
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  and explores how extended realities
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  can advance social equity
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  and what it means to be human in digital spaces.
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  Hello everyone.
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  - Hi. - It's great
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  to have you with us.
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  To start us off, can I ask each of you
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  to introduce yourselves?
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  Let's start with Emilie.
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  - Hi, thank you. So I'm Emilie.
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  I'm a senior research fellow in Neuropsychology,
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  and I'm based at the Institute of Neurology,
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  Queen Square University College of London.
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  - Thank you. And Alice?
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  - Hello. I'm delighted to be here.
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  Yeah, my name's Alice Wroe,
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  and I'm the extended realities lead
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  at the Atlantic Institute.
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  And so we think about how emerging technologies
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  can enable our community of fellows,
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  and our partners to be on the front foot
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  with emerging technologies.
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  So it's not something that happens to us,
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  but it's something that we can kind of engage with
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  to think about how we can build fairer,
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  more inclusive societies using this sort of emerging tech.
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  David is a fellow actually.
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  - Ah, okay. - Nicely to David. Yeah.
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  - Brilliant. So you're teeing up David.
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  - Yeah, so David De Jong-Bambagioni from the Netherlands
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  and I'm a social entrepreneur in the Netherlands,
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  and we work with XR to improve process in hospital care,
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  and dementia care, psychiatric care.
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  So very broad, but we use the technology,
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  how can we improve healthcare yesterday.
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  - Brilliant. Thank you all.
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  So I've actually work in dementia care,
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  but much more on, I guess more
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  typical psychology background.
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  So this is really exciting for me.
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  Let's get going.
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  (bright music)
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  So let's begin with your individual work.
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  David, could you tell us about the work you're doing
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  with extended reality and spatial computing,
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  and what you're trying to understand or change through it?
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  - Yeah, so my company,
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  they're health and facing in the Netherlands,
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  we work on (indistinct), educational technology
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  and MedTech and medical technology.
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  And what we do with the (indistinct) part
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  is change the way we train nurses, caregivers,
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  give them information in a different way.
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  We use 360 video for that.
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  And what we do is like empathy VR, so you can experience
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  how it is to go through the four phases of dementia,
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  or how it is to have a psychosis,
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  just to step in somebody else's shoes
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  to empathise with the other person.
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  We also do virtual excursion.
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  So if you are living with dementia,
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  or laying in the hospital and you can travel around anymore,
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  we have beautiful beaches, forests, even train stations.
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  Some people like to be on a train station.
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  And also we do social skills training,
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  so improve the way you interact with medical staff,
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  patients, that kind of stuff.
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  And also like movements, so like body movement in 360
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  and with a med tech, what we do is we optimise processes
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  around medical devices.
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  Think about track and tracing like your Apple Air tag
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  that you know, where your bag is,
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  where your bike, but then in a medical setting,
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  in a hospital, we do warehouse management.
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  So where are all these devices?
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  It's a big challenge, like where are the medical devices
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  and dashboarding with AI agents.
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  So that's like smart assistance that can help you
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  to find the right medical device.
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  So you go to a patient, what does the patient need?
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  And in that way you find the right medical device,
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  and the information part for the carrier like is done
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  with augmented reality.
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  So you can see the medical device in the space.
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  So if you want to troubleshoot,
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  then you can see the medical device in front of you
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  on your desk and then you can say,
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  oh, how does this button work?
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  Or that kind of thing.
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  So that's what we do with XR.
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  - Great, thank you.
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  And Emilie, your research spans spatial computing,
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  digital signals and psychophysiology.
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  So could you briefly describe
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  what projects you've worked with in this area?
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  What questions are you hoping to answer?
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  - Yeah, sure.
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  So my PhD was looking
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  at the sort of in the digital signal space
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  in a more dementia care context.
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  So Byron kind of aligning with your work.
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  And that was really about using kind of infrared cameras
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  to pick up signals, like changes in pupil responses
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  as people listen to familiar and unfamiliar music,
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  and those populations and people
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  with different types of Alzheimer's disease.
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  And that was really to answer research questions
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  like how can we augment
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  and improve personalised (indistinct) interventions
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  in dementia care?
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  But while that was going on,
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  I was also collecting pilot data
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  that was looking at innovative ways
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  that we could use extended reality
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  in the field of dementia assessments.
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  So moving sort of from a care
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  to actually diagnostic capacity.
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  And this would particularly address things
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  like how we detect changes
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  in competitive domains aside from the memory challenges
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  that we tend to see in more typical forms
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  of Alzheimer's disease are moving towards detecting subtle
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  behaviour and social personality changes
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  in the, for example, the ability to exhibit empathy
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  that are often observed in people
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  with frontotemporal dementia.
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  - Great, thank you.
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  So you're working in,
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  I guess the less common dementias then.
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  So taking in FTD as well as Alzheimer's. Great.
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  Alice, you approach XR from a creative
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  and equity centred perspective,
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  could you share what you are working on at the moment
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  and how you think extended realities
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  will help people and society?
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  - Yeah, and it's so brilliant
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  to hear David and Emilie's work
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  because with extended realities,
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  the vast majority of this tech is used for military,
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  and for gaming and it's just like mega dominated.
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  It's then when you hear about work like this,
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  it's just twinkling for this new kind of thoughtful future
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  with this technology, that's so exciting.
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  Yeah, so I work, as I've mentioned at the Atlantic Institute
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  and we believe that this type of technology is gonna change
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  the way that we all navigate our futures
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  in terms of our work lives, our professional lives,
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  and we wanna make sure that our fellows, our partners,
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  our community at large are people that feel confident
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  and safe to be critical to champion this tech,
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  to kind of creating it, collaborate through it.
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  So we put a real strategic focus on this particular area,
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  and so we've been working in three main areas.
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  So we're thinking about co-presence,
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  how can our global and growing community be together
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  whilst we're physically apart?
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  We've been thinking about how can this technology lift
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  the equity work of the fellows?
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  So projects like Emilie's and David's,
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  it just kind of sings to our hymn sheet.
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  It's about taking people that may not ordinarily have access
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  to this sort of tech, bring their expertise
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  and just lift it into their work
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  and raise their equity work.
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  And then the third one is around thought leadership.
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  So this tech space is so often dominated by the same voices
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  with the same kind of backgrounds.
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  And we actually think that through interdisciplinary
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  engagement, that is how we're gonna make progress,
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  social beautiful progress in this space.
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  So it's bringing fellows together, our partners together,
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  our communities together to gather around this technology
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  and dream with it fundamentally.
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  And so we are raising the tech literacy as well.
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  And so finally, I'll just give you one example
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  of an actual piece that we're working on.
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  So one of our fellows at the moment is creating a piece
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  with our lab in Oxford, in Rhodes house.
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  We've got a brilliant XR specialist, Richard Smith,
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  and they're making a 360 film about climate anxiety
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  called "Living in Water" in collaboration
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  with the equity initiative in Southeast Asia.
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  So we're thinking about climate anxiety globally,
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  and how it lives differently depending on where you are.
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  And so we're making work like that,
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  but for me it's the tech literacy and the raising
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  of who is in the room talking about this stuff
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  that really makes me sing.
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  - That's great. Thank you.
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  Such enthusiasm from all three of you.
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  Can I ask about your backgrounds.
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  Are you a health scientist,
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  psychologist who've moved into tech?
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  Or are you tech people who've moved
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  into applying your skills to healthcare?
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  - I've lived in academia for a decade
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  as a neuropsychology researcher.
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  That's very much where I've stayed.
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  - Yeah.
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  - By origin, I'm a social worker,
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  so I rolled into this technology.
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  - Oh great. - Oh, I love that.
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  Rolled into technology.
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  There's an artist called Stephanie Dinkins
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  who works a lot in tech,
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  and she calls herself an accidental technologist,
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  which is what I relate to as well.
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  So my background was in creative direction
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  and then I was kind of picked out of it by an amazing CEO
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  of a spatial computing company, Magic Leap.
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  And he just knew that if you get people whose background
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  isn't tech, actually, that's where you can kind of dream
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  the biggest things when you bring them together
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  with tech people.
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  And we all kind of merge and become one.
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  So I ascribe to the accidental technologists.
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  - Let's move on then to, I guess talk about that tech,
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  XR, an immersive environment.
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  So extended reality would include things
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  like virtual reality, augmented reality, and mixed reality.
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  And these tools can produce naturalistic,
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  and responsive environments for assessment and support.
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  I mean, that's as far as my understanding would go.
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  So what I need is for you to help me out a bit.
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  So perhaps Alice, can I start with you?
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  For those unfamiliar, can I ask you to tell us
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  the difference between extended reality,
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  virtual reality, augmented and mixed reality?
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  - It would be my pleasure, Byron.
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  So fundamentally, XR is this kind of big umbrella term
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  that encompasses a load of different immersive technologies.
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  So please don't feel intimidated by that term.
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  If it seems interchangeable,
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  or there's lots of different things,
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  it's because there are loads of words
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  that kind of mean similar things.
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  So VR as you said, virtual reality
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  as if you put a headset on,
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  all you will see is the digital world in front of you.
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  So if you're wearing a virtual reality headset,
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  you might actually just like walk into a chair,
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  or like stub your toe 'cause all you can see
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  is that virtual world.
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  And then you've got augmented reality,
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  and mixed reality where the digital
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  and the physical worlds come together as one.
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  So actually as you put those sort of headsets on
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  or you kind of bring them up using your phone,
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  you'll see your world around you,
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  but you'll have digital content that is kind of engaging
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  with quite poetically that the worlds
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  that you have around you.
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  So I think those are the two big ones to understand.
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  Some people call it spatial computing
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  or the metaverse, the embodied internet,
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  all these different terms.
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  But fundamentally it's everything
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  that like bursts out of your screen
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  and into your environment in different ways.
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  - Great. And David then,
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  how do you see XR helping clinicians understand
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  the day-to-day challenges and other things
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  that might be missed in clinics, specifically as it pertains
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  to dementia would be really interesting?
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  - Because of what we do is like...
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  So what we do is community driven VR.
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  So together with like clinicians,
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  we try to figure out what are the challenges clinicians
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  are facing in the day-to-day clinic that they could miss.
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  And then you just like, you kind of create like a sandbox,
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  like a safe space where people can experiment.
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  So like for example, we have one training,
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  and it's regarding seeing the difference between a delirium
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  or like symptoms of dementia.
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  So we try to like simulate environments
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  where like you can make decisions and choices
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  that maybe you would not do in a clinical setting
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  to like empathise, look at the...
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  Like how do you communicate, what is the workflow,
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  what are the processes, how can we optimise those to train
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  in a safe environment?
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  And what I said before, I think the empathy part,
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  like the empathy trainings we create
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  I think are very powerful, even though you're a clinician,
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  even though you study the subject or a certain disease,
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  like the moment a patient's sitting in front of you ,
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  how do you know how their world is?
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  How do they view you sitting on the other side of the table,
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  you know, with the white coat effect, of course.
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  So stepping in the other person's shoes
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  and experience from the other way is really helpful.
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  So, and that's the kind of sense we try to optimise
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  the day-to-day clinic to, you know,
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  step in somebody else's shoes and
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  just get out of your own bubble.
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  - Yeah. Does it extend as well
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  to, like the room I'm sitting in right now
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  is work you can see 'cause it's really bland.
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  - I thought that was just your taste, Byron, minimal man.
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  - Your virtual backgrounds,
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  we thought you're in a metaverse.
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  - Yeah. But so would it extend to like doctors,
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  or other healthcare professionals consulting
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  in a very sterile environment,
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  does it extend to helping them understand
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  how someone operates in the real world at home?
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  So almost simulating if you were to go,
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  and watch someone in their own house
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  and draw insights that way.
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  - Yeah, yeah, exactly. Yeah. - Oh, brilliant.
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  And Emilie, how does spatial computing use these realities
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  then and what do they offer when measuring subtle changes
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  in how people interact with their surroundings?
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  - So it's really interesting, David
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  to, you know, hear about your work using VR as a, or XR
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  as a vehicle for empathy because this is exactly the reason
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  for a very different motivation.
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  But it's exactly the reason I want to incorporate it
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  in my research in the pilot data we collected.
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  And that's because in the diagnostic criteria
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  for a particular type
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  of this sort of frontotemporal dementia that I'm interested
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  in, one of the diagnostic criteria
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  is a mark change in empathy.
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  And for a clinician and for a caregiver,
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  that can be incredibly obvious when you're sitting
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  in the room and a carer is relaying a story, for example,
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  about how some, you know, they injure themselves.
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  And it was so strange the reaction of the patient
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  because they thought it was hilarious,
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  which obviously isn't a normal response
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  and very different usually from hopefully
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  what their kind of pre dementia empathic response would be.
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  So I'm taking sort of the same,
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  a principle that VR could be used for empathy
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  and trying to use that in an assessment capacity.
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  But the beauty of these, all of these environments
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  and in a virtual world is that for a researcher
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  and scientist, I want to be able to standardise
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  that experience and exposure,
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  and create a virtual environment
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  that would be almost impossible to replicate
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  in a standardised way in any clinical setting,
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  unless you had at your disposal these technologies.
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  - Are you designing the technologies Emilie,
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  or someone else?
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  - That is somebody else. - So you're deploying them?
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  - Yeah, so it would be sort of co-developing
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  and perhaps we move on this later,
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  but you know, the kind of co-design process with people
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  with lived experiences, so central in order
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  to kind of hear the stories
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  of what sounded like an empathy change for their loved one
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  from a carer's perspective, you know,
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  those kind of, we use for the pilot work that we've done,
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  they have helped develop and develop the story
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  that then when we've collaborated with engineers,
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  and computer scientists to develop these virtual worlds,
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  they're the stories that we've taken.
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  And then really I'm looking at the kind of clinical angles
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  of how good this assessment could be.
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  - Yeah, yeah. So co-design is a part of the front end of it.
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  So the sort of, yeah. Okay. Yeah.
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  And then so you are involved in that and then Alice,
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  and I think David, I'll bring you in on this as well.
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  I guess that leads in nicely to how we ensure
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  that these various tools are shaped by the people
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  that they're supposed to serve.
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  Emilie's just given an example there,
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  is there anything that further back in the process,
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  I dunno what the tech term is for earlier in the development
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  that... - Yeah.
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  - That we need
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  to think about? - I mean, I think Emilie
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  is just completely nailed it in that, that is how...
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  If we are gonna create meaningful experiences
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  that will create impactful change, they have to be designed
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  by the people that they seek to serve,
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  and kind of have that lived experience embedded into it.
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  We have a fellow, Miriam Hernandez
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  that has written a really brilliant paper
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  on community led storytelling in VR
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  because even more so than other media, virtual reality,
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  you know, it takes everything and particularly 360 films,
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  it can be extremely exposing.
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  And so the risk to...
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  There's all sorts of risks
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  in terms of telling other people's stories
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  using this technology.
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  And so I think that absolutely what Emilie said
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  is the way forward and the only way actually
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  to create these ethical kind of pieces.
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  In terms of, I think your question around the actual
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  of technical development of it,
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  I mean that is always a win if you can bring people
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  into the process as much as possible.
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  So Richard Smith, the Excel specialist
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  that we have at the lab, well when he's doing 360 filming,
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  he is always explaining to the community
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  exactly this is what the camera's doing,
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  this is why I'm putting it here,
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  do you want to, you know, press this button,
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  where do you want to place the camera?
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  It's about always asking those questions.
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  And then certain people might just rise to the occasion,
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  and want to do more training themselves
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  and we would love to support 'em to do that.
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  But it's about bringing people in,
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  and demystifying this process
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  that can often feel exceptionally kind of dense
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  and just kind of making clear, this is what we're doing,
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  this is why we're doing it,
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  how do you wanna do it differently or with us.
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  - And David, have you got some examples from your work
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  to add? - Yeah, no, I would say,
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  this is a bit weird saying that XR tech...
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  XR is not about the tech, it's about the people.
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  So, and that's like, we started already with...
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  We talked about gaming.
• 18:43
  So even in gaming, if you don't make a game for the gamers,
• 18:47
  still not gonna play the game.
• 18:49
  So if you don't make experiences or XR applications
• 18:53
  that like really solve real world problems for clinicians
• 18:56
  or people living with dementia,
• 18:59
  then you're doing the wrong thing, I think.
• 19:02
  So I would say like...
• 19:03
  And it never starts with the tech,
• 19:05
  so that's I think also the big challenge
• 19:06
  in the field we're in.
• 19:08
  So like there every few months now,
• 19:10
  luckily new spatial computers
• 19:12
  and headsets are coming out, which is amazing,
• 19:15
  but never start, like, I never start with a tech.
• 19:18
  In general, when we have co-creation sessions,
• 19:21
  we never bring the tech in the space,
• 19:22
  we bring pencils, we draw, we start in a creative setting
• 19:27
  to understand like what is it, like, peel off the onion,
• 19:30
  what is the real challenge you're facing?
• 19:32
  And then maybe the tech can be a solution.
• 19:34
  So sometimes we do a session,
• 19:36
  and then the XR is not a solution
• 19:38
  and something completely out.
• 19:39
  So never start with the tech, start with like the problem,
• 19:43
  the challenge that people are facing
• 19:44
  and then you can build up towards XR.
• 19:47
  So I think that's how you should look at this technology.
• 19:51
  - And so in the...
• 19:52
  So thinking about dementia specifically,
• 19:54
  then it's sort of the...
• 19:57
  If we're extending what you said into dementia,
• 20:01
  you'd be thinking about what problems are people
• 20:03
  with dementia facing?
• 20:04
  What do they tell us that they need?
• 20:07
  And then is this type of tech a solution?
• 20:12
  - Or even carers, Byron. - Right.
• 20:14
  - I've seen an amazing piece in terms of the people
• 20:17
  that are living with, caring for,
• 20:19
  and exactly what both Emilie and David said,
• 20:21
  that XR is an empathy machine.
• 20:23
  You know, if you can experience something
• 20:26
  of what it might be like to live with dementia
• 20:28
  through the headset, you can then care
• 20:30
  from a completely different angle than you would
• 20:34
  if you're living with your own kind of biases,
• 20:36
  frustrations, overwhelm.
• 20:38
  It can kind of take you into a different space
• 20:39
  to love and care for somebody that has dementia as well.
• 20:43
  - That's a great point, yeah.
• 20:44
  I think we never mustn't forget carers.
• 20:47
  Do people like it this technology,
• 20:50
  people with dementia, carers, what's the uptake like?
• 20:53
  - Yeah, so the experience of caregivers,
• 20:55
  like we have a lot of like, so these 360 experience,
• 20:58
  we have like very emotional sessions sometimes
• 21:02
  with family members that as Alice said,
• 21:05
  like you're in your day-to-day,
• 21:06
  you're caring for your partner,
• 21:07
  you have to get your kids from school at four,
• 21:09
  you know, there's a lot going on in your life.
• 21:12
  And then like you get to the (indistinct),
• 21:13
  especially caregivers, a lot of burden on caregivers
• 21:15
  and things in global north and the south.
• 21:17
  And we're facing in the global north a specific challenge
• 21:20
  with ageing population.
• 21:22
  And so there's a lot of burden on caregivers
• 21:24
  and like sometimes we forget, so like,
• 21:26
  but to understand like a grandson,
• 21:28
  so my grandmother has dementia,
• 21:30
  doesn't really understand what that is.
• 21:32
  And when we give them this experience,
• 21:33
  like they're really like that in a sense.
• 21:38
  Like to understand like, what is it then?
• 21:39
  And of course it's not perfect, you know,
• 21:41
  I'm not gonna say our training is perfect,
• 21:43
  but we try to get as close to reality as possible.
• 21:46
  And people living with dementia, like, yeah, surprisingly,
• 21:48
  like there's like...
• 21:50
  Some people like to watch (indistinct),
• 21:51
  some people don't like it,
• 21:52
  some people like to read newspapers,
• 21:53
  so it's not for everybody, but the people who are into it.
• 21:58
  I had like 102 year old ladies
• 22:01
  that like were in a rollercoaster
• 22:03
  and said like, give me another spin.
• 22:06
  But the thing is like if I give a first demo to somebody,
• 22:09
  I would never give a rollercoaster experience
• 22:11
  as it's like really can make you really sick.
• 22:13
  But she always went with her kids to a theme park,
• 22:17
  but now being in a wheelchair, half paralysed,
• 22:19
  living with dementia, like, I can't go anymore.
• 22:21
  So for her it was like, it was perfect.
• 22:23
  So it's not for everybody,
• 22:24
  but I think sometimes people are very hesitant
• 22:26
  to offer XR to people living with dementia.
• 22:31
  And of course there's like some design principles
• 22:33
  and you have to do an ethical way.
• 22:34
  So like, I'm not saying like give them any experience,
• 22:37
  but people are open to it,
• 22:38
  they really love it and they like the renascence,
• 22:42
  like going back in their childhood for example,
• 22:45
  had one lady base jump in VR, so base jumping
• 22:50
  and like afterwards, like if you looked at experience,
• 22:52
  the gaming experience, like we said, wow, I don't know.
• 22:55
  But then the things she came out, so like to...
• 22:57
  With my husband when we were together,
• 23:00
  we'd go on a holiday to this island.
• 23:01
  We saw people jump out there.
• 23:02
  So like she started about her husband, her family, her past.
• 23:06
  So it's like, it's also this reminiscence therapy,
• 23:09
  like it brings like emotions up that like are so hidden,
• 23:12
  but a moment you're like, you have an embodied experience
• 23:15
  like you're sharing that and then yeah,
• 23:17
  these memories pop up
• 23:18
  and then you have really beautiful experiences.
• 23:20
  And then nurse is saying like normally she never speaks,
• 23:22
  and now she has this whole conversation
• 23:23
  of 20 minutes about her past,
• 23:26
  so yeah. - And that's...
• 23:27
  I think David's touched on something beautiful there
• 23:29
  because so often people think
• 23:30
  with this technology it isolates us,
• 23:32
  it takes us away from each other.
• 23:34
  It's all about being on your own with a computer screen.
• 23:36
  But like David, you lit up when you talked about
• 23:38
  what she said, the story she was telling,
• 23:40
  it's a conversation starter doesn't quite do it justice,
• 23:44
  but it enables people to tap into something
• 23:46
  that a part of themselves that they want to share,
• 23:49
  which is really special.
• 23:52
  (bright music)
• 23:56
  - So I think David, what you were saying just now,
• 23:59
  I think reminds us as well that we shouldn't ever forget
• 24:01
  those basic person centred principles
• 24:04
  that we, you know, we're all used to
• 24:06
  whatever part of research or dementia care we're into,
• 24:09
  it's really important.
• 24:11
  The content you deliver is relevant to the person.
• 24:15
  I mean that be fair.
• 24:17
  - Yeah. That's for sure.
• 24:18
  And especially in, I think especially
• 24:20
  in the technology space, I think it's very important.
• 24:23
  It doesn't matter if it's XR or it's smartphones,
• 24:25
  whatever it is.
• 24:27
  - And Emilie, how do your participants like the technology
• 24:32
  or perhaps more interestingly or as relevant,
• 24:35
  have you had any experiences where people just hate it
• 24:37
  and what have you done then, and?
• 24:41
  - So, no, it's a great question
• 24:42
  and I think it...
• 24:43
  You know, we had, as with every research approach,
• 24:47
  we went through a very stringent ethical review, rightly so.
• 24:51
  It was, you know, our protocol for this essentially
• 24:55
  what was a feasibility in pilot study in this area,
• 24:57
  'cause it was very novel, was, you know,
• 24:59
  obviously very heavily scrutinised
• 25:01
  and you know, a lot of...
• 25:03
  We answered lots of the ethics committees queries,
• 25:07
  which really centred around an interesting philosophical
• 25:09
  discussion around the almost philosophical in itself
• 25:12
  of immersing people, you know, vulnerable older adults
• 25:15
  who perhaps potentially are unsure of what reality is,
• 25:20
  or unscented in reality as it is.
• 25:22
  How ethical is that to centre somebody
• 25:25
  in essentially something that we all know is virtual
• 25:27
  or essentially fake.
• 25:29
  And so I think it was for our populations
• 25:31
  that we were interested in, it was really...
• 25:34
  It was very important that we kind of emphasise
• 25:36
  that this isn't the type of confusion
• 25:38
  that tends to be seen in these patients.
• 25:40
  It's not really challenges with memory,
• 25:43
  it was more to do with these kind of behavioural changes,
• 25:46
  which many of these individuals don't have a lot of insight
• 25:49
  into having and that's why this tool is so important.
• 25:52
  So we were able to sort of navigate that ethical process,
• 25:56
  which obviously had to be, you know,
• 25:57
  completely rightly done.
• 25:59
  And when we sort of got to the other side,
• 26:00
  and started looking and collecting the data,
• 26:04
  you know, people tolerated it really well.
• 26:06
  We made sure we had pre and post kind of sickness simulation
• 26:09
  questionnaires to establish how they were feeling,
• 26:12
  if they were dizzy, if they, you know,
• 26:14
  had any kind of adverse physical effects
• 26:17
  and we were videoing the whole interaction,
• 26:19
  so we could really hear obviously,
• 26:21
  and I was observing the whole time
• 26:22
  and we had lots of kind of safeguarding things in place
• 26:24
  if anyone did struggle or were distressed
• 26:28
  by the environment.
• 26:30
  But we didn't in my experience,
• 26:32
  no we didn't encounter any of those, which was encouraging.
• 26:36
  - Yeah, that's great.
• 26:37
  But you obviously went through a really thorough process
• 26:39
  to ensure that the technology would suitable for people,
• 26:44
  and that obviously operating
• 26:46
  in sort of proper
• 26:48
  ethical frameworks. - Of course.
• 26:50
  - Which is good, yeah. Or important.
• 26:54
  So I guess, yes, thinking about ethics,
• 26:57
  thinking about research,
• 26:59
  then there's probably a lot of researchers listening,
• 27:02
  they might be thinking this is great,
• 27:04
  this is super interesting.
• 27:06
  I'm not a coder or a tech designer,
• 27:09
  or have a computing background at all,
• 27:11
  how do I begin?
• 27:14
  How would you answer that question?
• 27:15
  What advice would you have? Alice?
• 27:18
  - Yeah, I mean it links back, doesn't it
• 27:19
  to what we're talking about earlier
• 27:20
  in terms of how we all came into this space
• 27:22
  with the accidental technologist thing.
• 27:25
  The brilliant thing about the Atlantic Fellowship for me
• 27:28
  is the interdisciplinary nest of it.
• 27:30
  You bring together poets, doctors,
• 27:32
  activists, community leaders.
• 27:34
  And when I spoke earlier about raising that tech literacy,
• 27:37
  all I'm really saying is about raising the confidence,
• 27:39
  so that when you are in a space
• 27:41
  that is discussing this type of technology,
• 27:43
  you feel able to bring your own real life expertise,
• 27:47
  your own lived experience into that space
• 27:49
  to have an opinion.
• 27:51
  So for me, I think what I would say to people
• 27:54
  that are interested in this space is trust your interest
• 27:57
  and start being interested and talking about it,
• 28:00
  and having opinions on things and researching and thinking.
• 28:03
  And then in terms of if you actually want to create a piece,
• 28:07
  then there's all sorts of quite interesting grants
• 28:10
  where you can be paired with somebody
• 28:12
  with a more kind of tech technical specialism
• 28:15
  as Emilie was mentioning.
• 28:16
  And there are loads of brilliant technologists
• 28:19
  who are excited to collaborate with organisation,
• 28:21
  and institutes and bring those expertise
• 28:23
  into the technical space.
• 28:25
  So for me it's around confidence,
• 28:26
  and it's not actually only for the benefit of that person,
• 28:29
  this is for the benefit, without sounding too overblown
• 28:31
  of humanity, like technology
• 28:33
  is how we are all moving forward
• 28:35
  in terms of navigating our lives.
• 28:36
  It is absolutely imperative that we are all invested,
• 28:39
  and all feel able to be part of it.
• 28:41
  So it's a kind of political act I think.
• 28:43
  So if you feel interested or completely scared
• 28:46
  about where the world is going with tech,
• 28:49
  listen, pay attention and bring your beliefs
• 28:51
  and what you have expertise in to that table.
• 28:55
  - So that applies not just to end users
• 28:58
  of the technology people... - No.
• 29:00
  - With mentoring carers,
• 29:00
  but actually as researchers, people who...
• 29:03
  - Absolutely, yeah... - Moving into that.
• 29:04
  - I mean, to be honest,
• 29:05
  like exactly what Emilie has done, you know,
• 29:07
  like Emilie was saying, her background has been in academia
• 29:09
  the whole way through and she works with teams
• 29:11
  to kind of lift up her work into this space.
• 29:13
  Like that's what we should all be doing with tech.
• 29:15
  It's like thinking about how we can weave it
• 29:17
  into our own lives so that we can build just kind technology
• 29:21
  that creates just kind futures fundamentally.
• 29:23
  So I think Emilie's a great example as is David actually,
• 29:25
  in terms of social workers.
• 29:27
  So what a brilliant group of people you have here
• 29:29
  in terms of showcasing, you don't need to go to kind of MIT
• 29:33
  and have a hundred degrees, you bring what you have
• 29:35
  and it meets you where you are and that's vital.
• 29:38
  - So on that then, David and Emilie,
• 29:40
  can I ask how you ended up in this field then
• 29:44
  from your respective earlier disciplines,
• 29:49
  perhaps David.
• 29:50
  - So in 2013, my brother and I, especially my brother,
• 29:55
  he backed the Oculus DK1.
• 29:57
  So was like long time ago,
• 30:00
  and he started to make YouTube videos with that.
• 30:02
  And I can tell you the first experience
• 30:04
  I had was like in a little rollercoaster
• 30:06
  with a ball rolling behind me.
• 30:08
  And then you...
• 30:10
  So anyway, not great experiences in the beginning.
• 30:12
  And in the beginning I didn't think it would revolutionise
• 30:15
  healthcare in a different way.
• 30:16
  But then exposed therapy came from the U.S.
• 30:20
  and then I did...
• 30:21
  During my bachelor's, I did some research like, oh,
• 30:24
  and then it clicked for me when I saw the effect
• 30:26
  of it was really simple with like 3D spider on a table.
• 30:30
  It was like really simple, but effect it had on people
• 30:32
  how realistic it was for somebody with a phobia
• 30:34
  and how you could trick somebody
• 30:35
  with a spider not having a real spider.
• 30:38
  So that really clicked for me.
• 30:40
  And then yeah, it kind of snowballed from there.
• 30:42
  And everything I did in my social work career,
• 30:44
  every time I linked it on VR, what can the stack do?
• 30:47
  How can we change?
• 30:48
  And then in 2018 when the Oculus Go came,
• 30:51
  so it's like a standalone headset.
• 30:54
  That was a moment I was like, oh, now we can implement this
• 30:57
  in healthcare and have it in a scalable way
• 31:00
  before you were connected to computer and cables,
• 31:02
  and it's great for research and really like point solutions,
• 31:07
  but like scalable, training people, taking people.
• 31:10
  That was a moment I was like, okay,
• 31:11
  now we can do it at scale.
• 31:13
  So yeah, and he has a very successful YouTube channel now
• 31:16
  where he reviews VR headsets and XR experiences.
• 31:20
  So yeah, so it came in from the gaming entertainment side
• 31:24
  and now we're here.
• 31:25
  - Great. That's amazing. Emilie.
• 31:29
  - So my, I mean to all credit to the PI I've worked with
• 31:32
  for many years, so professor (indistinct) at UCL,
• 31:35
  this was really a grant that I joined
• 31:36
  as a junior researcher.
• 31:38
  And this pilot, this was sort of more the very kind of...
• 31:42
  As part of a programme grant, this was the kind of high risk
• 31:45
  but high impact bit which was a bit lot more exploratory.
• 31:48
  And so that's...
• 31:49
  I mean, I was very lucky to have joined somebody
• 31:52
  who had the vision to incorporate this,
• 31:54
  but this was a number of years ago.
• 31:56
  And I think for us,
• 31:57
  while the pilot data was really exciting,
• 31:59
  the kind of barriers at the time
• 32:01
  was that it wasn't going to be as accessible as, you know,
• 32:04
  the tech kind of almost hadn't caught up to the idea
• 32:06
  of, oh this has to be deployable in clinical settings.
• 32:09
  And you know, at UCL we were very lucky
• 32:12
  to have a very high resourced virtual reality environment
• 32:15
  that just wasn't going to be accessible in clinical context.
• 32:20
  So it kind of you know...
• 32:22
  And then other research projects came up
• 32:25
  and I continued in a sort of digital signals avenue,
• 32:28
  but then I was reinvigorated by this actually, Alice
• 32:31
  to say about, you know, be a part of the story
• 32:33
  is from lived experience of a close family member
• 32:36
  who they didn't have FTD but after stroke had exhibited
• 32:41
  like these March behavioural changes that were very similar
• 32:44
  and luckily for that family member that was transient.
• 32:47
  But for me it was very frustrating that even at that point
• 32:50
  and knowing that this, you know,
• 32:52
  this is kind of down to a neurological change,
• 32:55
  There was no standardised assessment that could show
• 32:59
  a clinician or that they could track
• 33:02
  if he was getting better, or he was getting worse
• 33:04
  or that, that was different to what was expected
• 33:06
  and that he had been his whole life prior.
• 33:09
  And I think for me it really...
• 33:10
  That lived experience kind of reinvigorated the interest
• 33:13
  and made me wanna pick this back up
• 33:15
  and extend that pilot work.
• 33:17
  And that's kind of why I am talking about this again now
• 33:20
  after all these years.
• 33:22
  - Fantastic, thank you.
• 33:25
  I think that you've all spoken constantly about keeping
• 33:33
  the human experience central,
• 33:38
  without, I don't want to sound too cynical,
• 33:40
  but you could envisage a way,
• 33:42
  a scenario in a particular situation
• 33:45
  where it might be really tempting to just pop a headset
• 33:47
  on someone and leave them to it.
• 33:50
  And as the technology becomes more advanced,
• 33:53
  it might be easy to lose sight of the person at the centre.
• 33:57
  So to all of you, where do we really need to be careful
• 34:01
  and reflective as we develop and deploy these technologies?
• 34:05
  Perhaps I'll start with Alice.
• 34:07
  - Yeah, absolutely, everywhere.
• 34:11
  We need to be keeping our eyes open at all points.
• 34:14
  With this technology, with all emerging technology,
• 34:16
  there is exceptional potential,
• 34:18
  which we have beautifully revelled in today.
• 34:20
  But there is as critical risk,
• 34:25
  there is so much risk with this technologies.
• 34:30
  It's also a kind of perpetuation of the world we live in.
• 34:33
  Like technology is not this separate thing
• 34:35
  happening over there.
• 34:36
  The biases, the prejudices, the kind of entrenched racism,
• 34:41
  sexism, homophobia that kind of lives through our society
• 34:46
  is replicated in lots of these digital spaces.
• 34:49
  So it's about recognising that we are
• 34:51
  at a really exciting moment, especially when you think
• 34:54
  about kind of artificial intelligence
• 34:55
  and immersive environments and kind of the co-presence
• 34:58
  that I mentioned.
• 34:58
  But we are also at a tipping point
• 35:00
  where we've got an opportunity here not to perpetuate
• 35:03
  the pains and the harms of the past,
• 35:04
  and the present into the future.
• 35:06
  And actually I'm fearful, definitely fearful
• 35:08
  that, that is exactly what we're doing.
• 35:09
  That they're baked into the new systems
• 35:12
  that are gonna kind of affect all of our futures.
• 35:14
  So I think it's vital that we talk about this more widely
• 35:17
  than just in tech spaces at this tipping point
• 35:19
  that we are in.
• 35:20
  So that we can be very deliberate about the spaces,
• 35:23
  about the data, about the kind of ways
• 35:26
  in which we are deciding to commune with each other
• 35:29
  in these new spaces.
• 35:30
  Because deliberation, we have to be deliberate,
• 35:32
  or we're just gonna end up with an even worse situation
• 35:35
  than we have now.
• 35:36
  - Thank you. And then Emilie and David,
• 35:40
  just specifics about your areas
• 35:43
  where you are most reflective and careful
• 35:46
  in your particular cases. Emilie.
• 35:49
  - I think it always comes down to patient safety
• 35:51
  and I know that's sort of a kind of nuts and bolts answer,
• 35:53
  but to speak to any other parts
• 35:56
  I'd just be repeating Alice's very sentiments,
• 35:59
  which I really echo strongly.
• 36:00
  So for me in a clinical research setting,
• 36:03
  it has to be
• 36:04
  about that kind of more... - Sure.
• 36:05
  - You know, a very kind of pragmatic answer
• 36:07
  to keep it short... - No, that is, yeah,
• 36:08
  important though.
• 36:09
  And David, anything specific from your area?
• 36:14
  - I think most have been said,
• 36:15
  but I think especially like incorporating
• 36:17
  because like this technology is like,
• 36:19
  I don't wanna say it's a global north technology,
• 36:22
  but it is like predominantly in a certain field,
• 36:25
  certain people, can all think
• 36:27
  who those kinds of people are.
• 36:29
  And I think like the challenges we've been facing now
• 36:34
  that have happened a hundred years ago,
• 36:36
  which like inequalities we're still facing,
• 36:40
  I think with technology, for me being in the space,
• 36:42
  looking around who's in the space, being in the tech space
• 36:45
  with XR, like seeing like the digital literacy,
• 36:48
  like if we don't design the right way
• 36:50
  and we don't incorporate the global south,
• 36:52
  I think we're gonna have a big challenge
• 36:54
  of like in a hundred years from now,
• 36:56
  looking back at this time that we didn't incorporate
• 36:58
  the global south or certain people with certain backgrounds
• 37:01
  to make this an inclusive technology.
• 37:03
  And then a hundred years from now,
• 37:05
  we'll just like try to solve the problems
• 37:09
  that we start here.
• 37:09
  So like looking at the past, looking into future,
• 37:12
  then that's something
• 37:13
  that I think we should be really aware of.
• 37:16
  - Thank you. Thank you very much.
• 37:18
  Really important point everyone.
• 37:20
  (bright music)
• 37:26
  So we're almost out of time, but before we finish,
• 37:29
  I'd like to end on something a bit fun.
• 37:32
  A lot of what we've talked about today
• 37:33
  would've seemed like science fiction just a few years ago.
• 37:36
  So I'd like you to tell me,
• 37:37
  if you could bring one thing from science fiction
• 37:40
  into reality, what would it be?
• 37:42
  David. - Something from science
• 37:44
  into reality.
• 37:46
  I feel like we could have a time machine.
• 37:48
  - Time machine... - Would be great.
• 37:50
  - Alice.
• 37:51
  - Oh, I've seen it happen too many times.
• 37:54
  People are looking through science fiction
• 37:56
  and making it real.
• 37:57
  So I would just say I would like those tech bros
• 38:00
  to start reading (indistinct)
• 38:01
  rather than the other science fiction
• 38:03
  that they seem too well versed in.
• 38:06
  - And Emilie.
• 38:08
  - I'd go for the Star Trek universal translator
• 38:11
  and if I could extend it to animals as well,
• 38:13
  I think that would just... - Oh.
• 38:15
  - Fascinating. - That's so nice.
• 38:17
  - So if you're listening to this,
• 38:19
  we'd love to hear your own science fiction wishes.
• 38:21
  You can add that to the comments.
• 38:24
  I'd really like to thank David, Emilie,
• 38:25
  and Alice so much for joining me today.
• 38:27
  And thank you very much for listening.
• 38:28
  You can find out more information
• 38:30
  and links to resources at our website,
• 38:32
  which is DementiaResearcher.NIHR.AC.UK,
• 38:36
  and do also visit our community app
• 38:38
  where we continue these conversations
• 38:39
  and share new events, blogs, and podcasts.
• 38:42
  So my name is Byron,
• 38:44
  and you've been listening to the Dementia Researcher podcast
• 38:47
  and from all of our guests, goodbye.
• 38:53
  - [Narrator] The Dementia Researcher Podcast was brought
• 38:54
  to you by University College London with generous funding
• 38:58
  from the UK National Institute for Health Research,
• 39:01
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• 39:02
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• 39:06
  and Race Against Dementia.
• 39:08
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• 39:09
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• 39:12
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• 39:14
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