Podcast – Alzheimer Europe Conference Roundup 2023

Voice Over:

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

Adam Smith:

Hello, and welcome to the Dementia Researcher Podcast. I’m Adam Smith and it’s my pleasure to be hosting this show, which comes to you from Helsinki in Finland, home of the Moomins, saunas, and this year’s 33rd Alzheimer Europe Conference. As ever in these conference highlight shows, I’m joined by researchers who are going to share their event highlights to provide a snapshot of what’s being talked about across the week. We hope this will help those who couldn’t be here and those who have access to the online platform and are just looking for sessions that they haven’t missed that sound great. But that’s enough from me, let’s meet the guests. With me today is Dr. Victoria Shepherd, Dr. Danielle Jones, Dr. Monica Leverton, and Caroline Bartle. Hello everybody. Let’s start with some quick introductions and I’m going to go around the table starting with Danielle. Danielle, why don’t you introduce yourself?

Dr Danielle Jones:

Hello, everybody. I am Dr. Danielle Jones. I’m an associate professor at the Centre for Applied Dementia Studies at the University of Bradford. My main roles there are to teach on our master’s in advanced dementia studies programmes, and I’m also a researcher, so I’m a conversation analyst and interested in medical communication. I’ll talk more about my highlights.

Adam Smith:

Brilliant. Thank you for coming and first time on the podcast as well.

Dr Danielle Jones:

First time on the podcast, yes.

Adam Smith:

Perfect. I always like dragging new people in, but not everybody’s new. Caroline, why don’t you go next?

Caroline Bartle:

Yeah, I’m Caroline. I’ve come all the way from New Zealand, but actually I’m from UK. I’m founder of Three Spirit, which was a training consultancy. Over 10 years we trained over 100,000 staff, developed over 500 programmes, and did a lot of work in dementia care. I moved to New Zealand a year ago, but I’ve been on my doctorate studies for a very long time at Sterling, and my research interest is in workforce development, but looking at how we learn in the flow of work rather than sort of learning in more sort of traditional forms of training because it’s really interesting when you get into it, you see actually there’s very strong evidence to say that training has very limited impact. I’m looking at how we work with tools and how we learn in the flow of work.

So, in New Zealand, my job is I’m a dementia project specialist and it’s a large, aged care provider across Australia and New Zealand. And my role is to support research, the model of care, education, and dementia design. So, the first thing I did when I got there was, I was on an airplane every week and I did 32 dementia environment audits. And it was a very interesting way of learning about the organisation and very exciting to be in the air across mountains.

Adam Smith:

That’s a big move. Well, thanks for joining us. And you didn’t add as well that… What you did tell me earlier off-air is that you listen to the podcast all the time.

Caroline Bartle:

Oh, yes. It’s a great way to learn.

Adam Smith:

I like that we get listeners on the show. Thanks, Caroline. Victoria.

Dr Victoria Shepherd:

Hi. I’m Vicki Shepherds. I’m from Cardiff University. I’m a senior research fellow, a nurse by professional background. And in Cardiff I kind of have a mixed role, I guess. So involved in clinical trials and lots of other types of studies, a lot of them in care homes for older people, but also lead programme research looking at inclusivity research with a particular focus on people who might not be able to provide their own consent to take part, which might include people living with dementia.

Adam Smith:

Perfect, thank you very much. And last but not least, another newcomer to the podcast I think, Monica?

Dr Monica Leverton:

Yes, new, and terrified. I’m Dr. Monica Leverton. I’m a researcher at King’s College London, as you can tell. Oh, no one can see my notes branded. I’m in the NIHR policy Institute for Health and Social Care workforce.

Adam Smith:

That’s the new, brand-new policy?

Dr Monica Leverton:

Yes, and our title is H Group.

Adam Smith:

That’s a good, okay.

Dr Monica Leverton:

Most of my work is dementia, dementia care workforce, using creative methods, so ethnography, anything to do with visual animations, illustrations and how that can enhance and increase accessibility, particularly for people living with dementia and research. And also, the care workforce who maybe aren’t so used to being involved in research. We’ve just had a really great co-production workshop using illustration with those groups. And I also chair the home care research forum, which is what some people might have heard of me from.

Adam Smith:

That’s got a name. What’s it? Remind me, Butterworth?

Dr Monica Leverton:

No, that’s the other one.

Adam Smith:

Oh, the other.

Dr Monica Leverton:

That’s not my one.

Adam Smith:

Sorry.

Dr Monica Leverton:

There was that one.

Adam Smith:

All the forums are available.

Dr Monica Leverton:

We have many forums we cater for. No, that’s the care home one, Butterworth. I’ll plug in into that as well. The Margaret Butterworth care home forum-

Adam Smith:

But that is yours as well, right?

Dr Monica Leverton:

No, it’s not.

Adam Smith:

No, sorry.

Dr Monica Leverton:

Mine is just what it says on the tin, the Home Care Research Forum.

Adam Smith:

And is that particularly around domiciliary care?

Dr Monica Leverton:

Yes.

Adam Smith:

Which is, we know we’ve talked about this on the podcast before, really under researched area is domiciliary care.

Dr Monica Leverton:

Yeah, and there’s a really small pool of researchers that look into home care research and we’re all kind of connected in some ways and it’s quite nice to kind of have the key people who do similar things. But we’re branching out and especially connecting home care providers with researchers has really come on in the last couple of years. Lots of different forums and groups for that.

Adam Smith:

Awesome. Well thank you very much all of you for joining us. Let’s get to the highlights. Okay, we’re back and we’re going to get to the highlights. But actually, before we get to the highlights, I’m going to give anybody a chance who’d like to talk about, because I think all of you have been presenting some of your own work this week or posters or some of you have. Who’d like to go first in sharing what they’ve been talking about? Victoria.

Dr Victoria Shepherd:

So, I was presenting today some of the work I do around inclusivity and research and the challenge of involving people who might not be able to provide their own consent to take part. And thinking about the kind of ethical challenges, but also the kind of methodological practical challenges that researchers encounter. So, I was presenting the work I do called The Consult Programme and giving a kind of overview of some of the innovations we’ve developed through that that can support people to be included in research where they might not be able to provide their own consent. And that includes an include framework we’ve developed to help researcher design studies to be inclusive of people that fall into that group. And then also interventions to support families making decisions as consultees and legal representatives and how we can support them through that process. And then more recent work, looking at how we might encourage people to express their views in advance about their kind of research wishes. So, the same idea that we have around advanced care planning, but thinking about people’s research wishes. So advanced research planning.

Adam Smith:

And that’s already a thing in Australia, isn’t it particularly?

Dr Victoria Shepherd:

Australia, you’re right. Already have a form of that. Canada America, some forms of that, but not necessarily widely taken up. And so, the work I’m doing is looking at whether it’s feasible, acceptable in the UK. And learning, part of that will be learning from international experiences. So, I’ve got a Churchill Fellowship, I’ll be travelling to Australia and Canada next year.

Adam Smith:

Oh, that’s cool. We might get you back to talk about Churchill Fellowships. I think that’s one of the… Churchill Fellowships are one of the… It’s a brilliant programme and I don’t think dementia researchers know enough about it or even know it exists and that they’d be eligible to apply and could make use of that.

Dr Victoria Shepherd:

Exactly. And there are really exciting opportunities.

Adam Smith:

They are. So, what we’re going to do is we’ll make sure in the show notes we put a link to the work you’ve done on that because I think we’ve shared it on the website recently on your guidance. And we’ll put one to the Churchill Fellowships as well. Monica, you’ve been presenting too.

Dr Monica Leverton:

Yes, we’ve had two posters from the same study. So, it’s the dementia champions study that I’m the principal investigator Robert Kings, which is almost coming to an end. So, it’s due to end in December, so it was quite a good time to come here. So, they were quite different, the posters. So, one was about the use of illustration in the project and how that enhanced co-production. So, I can say a bit about that to start. So, it was essentially just talking about the process of how we worked with an illustrator who joined us in the workshop. So, the workshop had people living with dementia, home care staff, including managers, care workers and some family carers.

So, we started the dementia champions project learning about the role across health and social care nationally and internationally. The workshop was really to reign in on how that could apply to home care specifically in the UK. So, we had a room of people who either had lived or working experience in home care and rather than us as the research teams of taking minutes and making our notes, the illustrator visually scribed the workshop and that was live. So, everyone in the workshop could see the illustration as it was being developed and say, oh, actually I don’t think I meant to say that you didn’t quite capture what I meant there. So, they had a chance to kind of add in and feedback.

And so, these really nice-looking scribes were produced. And then at the end he went away with all of the notes and produced this model of a dementia champion. So, a large figure of what a dementia champion looks like, not physically, but in terms of their role and tasks, their skills, and values. And then our key question, which has been how to support dementia champions in the long term. So that’s been a great elicitation tool that we now take to our last phase of interviews with home care workers where we’re asking, is this role wanted in home care and could it work? What are the barriers? Rather than just saying an abstract role to them, we can actually show them, and we work through the illustration.

So, the poster was essentially a giant blown up version of that illustration and we have really nice feedback on that and lots of people engaging. The second day, yesterday we had another poster which was more academic maybe. So, it was very visually pleasing still I think, the colours are nice. But yeah, it needed to take longer to look at it and work it out. But that was theory of change framework, working out the mechanisms of action to make the dementia champion role work. I won’t say too much about that because I could just go on.

Adam Smith:

Well, I imagine that’s something you’ve got to publish as well, right? I mean implementation is such a hot topic right now because I think particularly in qualitative research, people are starting to feel the frustration of developing awesome interventions that you build up the evidence base to show it works, you publish and then move on because your next grants got to be about something else. And there are a few individuals who cling to that somehow and it ends up taking up a little bit less time than before and somehow cling to it to try and make it work, but it’s kind of a little bit soul-destroying when that happens.

Dr Monica Leverton:

Feels pet peeve academia for me. So, I think anything that I work on, it’s to have impact in practise.

Adam Smith:

Well, I think we’ve certainly got some blogs and things talking about the potential ways to take an intervention and make it into the mainstream. Anna Volk talked about that for us before as well, but I’d love to know more, so you’ll have to come back and tell us more about that. Great. See, we’ve already got two amazing conference highlights already. I’m going to come to Danielle first.

Dr Danielle Jones:

Two presentations.

Adam Smith:

Two oral presentations.

Dr Danielle Jones:

Yeah, I didn’t give them both. So, both of them were based on a project that I’ve just led that looks at how we’re interested in how clinicians communicate dementia risk to patients in different settings. So, the first presentation was on the work package that looked at how primary care GPs communicate dementia risk. Well, if, when and how they do that. So, exploring, we interviewed 11 GPs about their knowledge and experience of dementia risk factors and whether they communicate them to patient.

Adam Smith:

How did you find those GPs?

Dr Danielle Jones:

They’re very difficult. It was a very difficult task to recruit GPs.

Adam Smith:

Also as well, do you only then get people who are confident that they’re going to come out well?

Dr Danielle Jones:

Yeah. So, one of the, I guess not limitations of the study, but one thing to consider is that all the GPs or half of the GPs were part of our dementia education programmes or alumni of our dementia education programme.

Adam Smith:

So, you’d expect them to do pretty well.

Dr Danielle Jones:

So, they were interested in it. They have an elevated knowledge you would expect. So, we do caveat our findings in that these are people that have a specialist knowledge in dementia. They’re not every day GPs, but still given that when it came to GPs awareness, there was nobody that was aware or mentioned that TBI was a risk factor for dementia. So, none of the GPS mentioned that when we asked what are the modifiable risk factors for dementia?

And then only one of them knew about the associations between hearing loss and less education. So, they knew more about cardiovascular risk factors rather than the other aspects of risk. So, Andrea [inaudible 00:13:51] Depaver was the researcher on that project, and she presented that on Tuesday. And then yesterday afternoon, the day just moulded into one, yesterday afternoon.

Adam Smith:

Day two.

Dr Danielle Jones:

Day two, whatever that was. I presented the second part of that project, which was looking at how psychiatrists communicate dementia risk to people that are being diagnosed with mild cognitive impairment in the memory clinic. So really the secondary prevention of people that are already identified as being at risk. But it’s suggested that if you offer people at that stage risk advice or mitigation advice that they can avoid or delay the onset of dementia.

Adam Smith:

So, making some of those particularly vascular dementias. I know we talked before about lifestyle changes and things that might delay some of the onset.

Dr Danielle Jones:

The modifiable factors. So, we really wanted to look at how that’s done and if there are successful ways of giving that risk communication as part of the bigger jigsaw of how we get people to modify their lifestyle risk factors, if the evidence is telling us that we can delay our chances of getting dementia by about 40%. How are clinicians responsible for communicating how patients and people generally can do that. And whether it is… So, I showed yesterday that quite often the techniques that clinicians use is resisted by patients. So, they’re already going out of a clinical consultation thinking that they don’t really need to change their behaviour or sceptical about what they need to do. So yeah, just really tying in with advice about how clinicians could possibly communicate dementia risks so that patients already in the consultation are on board with the strategies they need to put into place.

Adam Smith:

There’s already a theme emerging here isn’t there from all of your work, which is you’ve all discovered something that could be improved upon. And the challenge now is actually, obviously you’ve produced your toolkit, which is there and available, but of course just because you put it online doesn’t mean anybody will actually download. And you’ve got your intervention and yours, you’ve got some advice that’s into training. You need somebody to pass that along to now, don’t you? To say, there you go,

Dr Danielle Jones:

Have it.

Adam Smith:

I’ve done this now, that isn’t just a publication. Caroline, have you made some discoveries that you need to? What have you been presenting on this week?

Caroline Bartle:

So, I’ve had a poster here this week and I think it’s my first proper poster. But it’s evolved through many years actually of work and very related to implementation science because it’s all about my frustration of taking research over the years and then trying to teach that to different groups and then monitoring the impact as a social enterprise. We were looking all the time at the changes that were happening in organisations or not happening. So, as I got into the theory and the research, I started to understand that there’s this whole body of work around workforce development that’s all about the activities and systems within organisations that required a slightly different approach. So, then the pandemic happened, and I got really interested in technology. So, my poster title is, how do Digitally Mediated Practises Influence Epistemic Practise? Loads of people walking past my poster because they probably thought, what does that mean?

But essentially my poster was looking at four main themes, so organisational learning. So, I’m really interested in how technology can enable us as organisations to work with each other and to have an impact in our society. So, there’s a kind of moral responsibility. Also, around epistemic practise. So, looking at how we learn in the flow of work and how we work together with the tools that we work with. Having blended learning, so looking at all different technologies including VR, digital care plans, how all of those things intersect. And then a big part of it is around data and how we use data because a lot of the data that we use currently is derived from compliance regulations and there are a lot of problems with that because it’s quite limiting in terms of data that we collect. And it’s about velocity and the variety of data, not the volume of data. So, lots of really interesting stuff around how those different technologies intersect to enable us to make change in organisation, which is all about implementation science, it’s taking the research and actually being able to make a difference with it.

Adam Smith:

There we go. There’s definitely a theme there. And technology actually has been a hot topic this week. There’s been multiple sessions on data and technology. But thank you very much everybody for sharing, all your work sounds amazing. Do send me your links and we’ll include them in the show notes. But for now, let’s get to the highlights. Great. Okay, so we’re back and now we’re going to get round to the real highlights, which is what everybody’s here to talk about. I’m going to come back to Monica, first of all. Monica, share your first highlight with us.

Dr Monica Leverton:

I don’t know which one to start with. I think I’m going to start with my sort of favourite overall message. So, it was actually today’s session. So, it was the kind of quick there were 12 speakers in one session, and it was about psychosocial interventions, and it was actually the 12th speaker, so I paid attention.

Adam Smith:

Well done.

Dr Monica Leverton:

It was Stuart Dougal, I hope I’m saying that right, Dougal, Dougle who’s from the Scottish Dementia Working Group. And actually funnily, he was talking about the use of animation. So, I think my ears pricked up at that point. But part of his five-minute talk was about his journey and sharing his journey and he ended with a slide that had his five key points, which he really tries to live by, and I wrote those down. And so, the five things that he’s found really help him to deal with living with dementia is to, one, have a focus. Two, have a routine. Three, keep motivating yourself. Four, keep trying things that you’re struggling with. And five, live your life. And I just thought that was a really powerful message. And everyone in the audience really seemed to. People were asking him, can you put your slides back up? I want to take a photo. Can we use those five points?

Adam Smith:

I agree. And I mean they’re good messages, but even if you’re not somebody living with the disease as well. I mean they’re good things to live by. Did anybody else go to that session?

No.

Caroline Bartle:

No, I found the oral sessions quite difficult maybe because they were very quick and fast. I always wanted more from them.

Dr Monica Leverton:

It was better for my attention span. It’s like I like a quick summary.

Adam Smith:

Yeah, I have to say I’m with you on that. I kind of like five minutes speaker particularly then I think it stops presenters doing that, we’ve talked about this, that kind of safe space you start with, which is a slide reminding everybody what dementia is, how many people, the symptoms that there’s no cure. And I think when you’ve got five minutes, you don’t waste time on that. You get straight into it.

Dr Monica Leverton:

The elevator pitches.

Adam Smith:

Yeah, I completely agree. Thank you very much. Victoria, why don’t you share your first.

Dr Victoria Shepherd:

So, I’m very interested in inclusivity and also public involvement. And what came out throughout the whole conference I think was those two, the intersection between those two themes. So how we can improve inclusivity and research through public involvement and how we need to be inclusive in our public involvement activities. And that was a really strong message for me kind of throughout the conference. And particularly today, day three, there was a whole session on patient and public involvement research that spoke to those themes very strongly. And I quite like quite a few of you all the speakers, but one of the messages I took away from the first speaker who’s Dr. Sarah Griffiss at UCL.

Adam Smith:

It was written podcasts, books for us before.

Dr Victoria Shepherd:

Exactly, exactly. She was talking about her lived experience group who has supported her pridem project or their pridem project and has also done some work around evaluating how that lived experience group had contributed and what they took away from it. And there were really strong quotes from that that I think will probably stay with me. And one of them was from one of the lived experience groups who spoke about how actually contributing to a co-production project was very different. And they said that normally we’re just quotes in the paper. And that really struck me that I’m as guilty as everyone I think of using quotes from people. And this was actually then bringing to life the fact that yes, being included as a quote is nice, but actually true co-production is even more meaningful in terms of involvement. And I think that will stay with me. I think from the conference,

Adam Smith:

I still think co-production is one of those areas that’s just going to continue to develop and it kind of seems to redefine itself regularly as we think of things that we didn’t imagine the first time around. So, the first co-production studies were a bit more like public engagement and then they’ve gotten better and better and better and then we continue to learn in that process, don’t we?

Dr Victoria Shepherd:

And part of what Sarah and the team did was to ask themselves at the end, was this co-production and to reflect on the definitions of that, but also how it had felt as a group and what they took away from that, which I think again is a really good message for people.

Adam Smith:

It’s really hard to get right, but when it does get right, I think it’s what you get out it’s really powerful. Thank you. Did anybody else see anything on co-production or PPI?

Dr Danielle Jones:

I went to the same session and found it equally as kind of inspirational about co-production. And I think the message I took away at the end of it was that I guess the future is when we stop seeing people with dementia as involved in our research, but as researchers on an equal level, that’s when we won’t need the debates about co-production or involvement because it’ll come naturally to us as researchers that people with dementia are part of our research team as researchers within their own right. So, I think that was a really powerful message to us to stop seeing people with dementia as an add-on.

But we hear it all the time, nothing about us without us, but it’s so true that we wouldn’t be here if people didn’t have the disease and they are the experts. So, I found that session really quite powerful in how people have applied that and the learning they’ve taken from it. So, I also think it’s really important, and Sarah did this really well, is reflecting on what the challenges are. The financing of people living with dementia in research and the bureaucracy surrounding how we pay them for their involvement and those difficulties reflecting for other people, how they overcame those challenges, which is really the really important issue is for if we’re all aspiring to engage people with dementia meaningfully in our research, there are obstacles that we’ve got to face as researchers and they’re real.

Adam Smith:

Do you think there’d be any value? I mean or is it easy enough that you should just be able to say, well the research brings the research skills and the person with dementia brings the lived experience and you work together? Or is there something here to be saying? Well, to be able to understand each other’s perspectives as well it would help if the person living with dementia had had some basic introduction to some of the research principles on how research works and the methodology. In a way that’s training both because they’ll help you to understand what it’s like to live with dementia and you can explain to them how research works in that way. And I think those training to create this kind of research ready cohort of people who’ve got some of those knowledge and skills could really benefit core production, I think.

Dr Danielle Jones:

Yeah, I think so. And also, Sarah spoke around kind of adjusting the power differentials and I think that kind of idea helps towards that.

Adam Smith:

Yeah, because not feeling quite so looked down upon like, oh yeah, well it’s got to be like this because that’s how it works. And I can see that, well hopefully that doesn’t creep in because you see how it might.

Dr Monica Leverton:

I think on the first day as well and I can’t remember her name, but it was a woman who was part of one of the Dementia Working Groups, someone with lived experience, and she said people often make the assumption that people with dementia can’t learn anymore.

Adam Smith:

Is that Pia or Lelo? I think it might’ve been Pia Knudsen possibly. Anyway, yeah.

Dr Monica Leverton:

And that was her point. She was like, we can learn, we can learn new things, involve us.

Adam Smith:

Yeah.

Dr Danielle Jones:

We’re doing a project at Bradford at the minute that’s looking to evaluate the involvement of people living with dementia in designing a master’s level dementia education module, which we’ve designed from scratch with 24 people living with dementia in the research team and we’re evaluating that. But one of the things that we were really keen to do at the start of that project is to give people with dementia the tools that they needed in order to be able to design education curriculum. So, teach them how to create learning outcomes, for example, teach them how to be educators. So, they’re teaching with us as well. And I think the same could be applied to research and I think there are things out there, advice for people with dementia on research skills absolutely different [inaudible 00:27:20].

Adam Smith:

Available to book, available for a very small entrance fee sometime in the near future. Thank you. Let’s move on to the next highlight. So, Monica, you’ve shared your first. Victoria, I’m going to come to Caroline next.

Caroline Bartle:

So, I was really interested in the dementia design because I’ve been teaching it for about 10 years. And then since I’ve taken on this new role, I’ve been auditing. So, I really liked the talk by the lead on my notes here, Dr. Kevin Charis from France. And he was exploring the homeostatic value of space to prevent maladaptive behaviours. I have had an issue with the language a lot with the sessions here and I have thought that they are very non-inclusive.

Adam Smith:

Inaccessible.

Caroline Bartle:

And even as an experienced professional and closet academic, I still find it very difficult. And that title is just the same. So, his work was looking at basically understanding the environmental triggers and that the way that the building is actually designed can cause the problem. And so, it’s looking at sort of environment person fits. And he used an analogy, which I’ve heard used before, but not in this way where he describes being on an aeroplane and actually the experience of being on an aeroplane where you’re told to sit in a particular place, you’re restrained, you can only have your meals at a certain time.

And so, you respond in a way. And those responses include pacing, agitation, anxiety, potential arguments. So, his point was this is a normal behaviour. But when we look at it in context of a dementia environment, it’s called BPSD. And what was really interesting because I read the paper later, was he was talking about actually the stress that’s caused. Stress can impact our HPA access which axis, which then impacts our hippocampus, so it causes cognitive problems, stress. And then he went on to talk about actually the way that buildings are designed could be iatrogenic in a way, they could be harmful. So, there’s been a lot of work, as we all know around dementia design. And that paper really was insisting that architecture is much more than just a place.

Adam Smith:

I can get that. I think the challenge with this is that that’s great, but they’re not about to demolish thousands of care homes and rebuild them, are they? And I think what would be interesting is how you can adapt what you already have to learn to make sure that you’re taking on board the lessons we’ve learned from design.

Caroline Bartle:

And one of the things that we are doing at the moment is working with architects to think about how we can build design flexibly because we’ve got lots of different cohorts of different people coming through. We’ve got potential threats in the future. In New Zealand we’ve got concerns around weather, we’ve got potential pandemics alongside very diverse populations, so we need to build flexible buildings. So, technology plays a role in that.

Adam Smith:

I think also as well, I can see how that would, when you buy a new built house and they give you a list, don’t they, of the things, I don’t know, I’ve never bought a new house, but I know that they say, how would you like your kitchen and what work surfaces do you want in your bathroom? If you move into a nursing home, it’s like, there you go, there’s your room. I guess there might be some options on colour. And you can see how future design is so smart now that flexibly being able to move walls and space and change colours in a different way to make people feel like they’ve had a say in how they live is important. As well as then the stuff that they put in it, which we’ve talked about on the podcast before. I’m going to move on to the next highlight. I’m going to come to Danielle now.

Dr Danielle Jones:

So, I think my little highlight with my personal interest in dementia prevention has been on the amount of prevention research across the whole conference.

Adam Smith:

There’s been loads.

Dr Danielle Jones:

Yes, there was a plenary, and then I think every parallel session there was something on prevention or risk reduction. And one talk that stood out, particularly for me, I’m just looking at my notes, is Sophie Fraser who is the educational lead at Brain Health Scotland. And she was talking really about the importance of taking a real-life course approach to dementia risk reduction. So, we shouldn’t be thinking about it when we are having problems later in life, but we should be thinking about how we look across a life course and focus on children and how they understand how to improve their brain health and adopt really healthy lifestyle behaviours throughout the course of their life.

And her title of her project was, Reach for the Stars, the My Amazing Brain Schools Programme. And it just stood out for me because one is she was so enthusiastic, she was a brilliant presenter, which always helps, but they’re going into schools and really promoting the connection between the stars in the sky and the brain connections in your head and thinking about all the ways that you can improve your brain. And Stars stands for S is spend time with friends, friends, and hobbies. T is taken into healthy foods. A is active and healthy. R is rest and relaxation. And S is safety, so brain safety.

Adam Smith:

And I think I’ve seen that online. I think you can actually go to their website, there’s a website for it.

Dr Danielle Jones:

You can download yeah. So, I’m actually going to go try get into my daughter’s school and do a star session. And they were calling out for people to do it and they evaluate it within the sessions as well.

Adam Smith:

Brilliant.

Dr Danielle Jones:

So, it’s really a good concept, I think.

Adam Smith:

Some of those health campaigns are tricky, aren’t they? Because in a way the same things that will benefit from that campaign would also help other aspects of, they’re going to touch on another life light. You talked about diet there and lifestyle, but this one went in there talking about the brain and they’ll have another one that’ll go in there that talks about some of the same things but for a different reason. And it feels like sometimes a bit of a duplication and effort that’s a bit more of a holistic approach to embedding brain health in with other things could benefit. Because we all know how successful things like the five a day campaign was, which cost a lot of money, but it’s the one we all remember and if you could tack, but that’s brilliant. Thank you so much.

And so, prevention’s been hot. I think for my takeaways, there are some three big hot topics that have come out of this. The fingers programme has been talked about a lot across multiple sessions. Prevention and technology have definitely been hot topics as well. And then there’s been this underlying theme that the conferences had made, rightly so made an important focus on is just how much their European Working Group for Carers and European Working Group of People Living with Dementia have been involved in the programming of the entire event. And not just in deciding what sessions, what will happen, but then have actually gotten practically involved in delivering plenaries, chairing, and hosting sessions, leading some of their own work. There is no other conference like this that has that level of engagement of people. They might, conferences sure have people living with dementia give the opening talk, but not actually kind of hand over a good portion of the programme to say that they could do that.

Caroline Bartle:

But it’s Chris’ last year, isn’t it? Which is quite sad.

Adam Smith:

Chris Roberts, who was on the Highlights podcast last year, he’s been on a couple of times before as well. I guess he’s coming to the end of his term.

Caroline Bartle:

I asked him what he was going to do, he said he’s going to do absolutely nothing.

Adam Smith:

I don’t think he’ll live up to that promise because I know Chris, he can’t say no.

Caroline Bartle:

He’ll be a big heart [inaudible 00:35:36].

Adam Smith:

As Chris Roberts, he’s just kind of we’re talking to him about hosting a new podcast series with the Dem Com Arch fellows so he’s not going to be doing nothing. So, I’ve made some notes here. The European Working Group People with Dementia and the Carers European Working Group has done lots across the week as we said. Chris Roberts has been amazing. There’s also been some new people. In fact-

Caroline Bartle:

Margarite, she was brilliant.

Adam Smith:

I was going to go 15 of the members of the Working Group gave keynotes including Kevin Quaid, Pia Knudsen, Věra Ryšavá, and-

Caroline Bartle:

Yeah, Margarite was amazing. She was the one that I, she said some amazing one-liners like my diagnosis was really, really difficult, but my doctor wasn’t at fault. She was frightened, my doctor was frightened when she gave the diagnosis.

Adam Smith:

The opening plenary actually involved was it four or five of the people living with dementia taking to the stage. And that was a big room with a thousand in-person. People are registered taking to the big stage to talk about their passions and their experience and their disease, which was inspiring. I’ve been recording this week some interviews with seven of those people. So, you’ll check out a YouTube channel. They’ll be coming on there soon in a collaboration with Alzheimer Europe to be able to talk about their experiences and being involved in presenting at the conference. So do check out and wait for those. I’m conscious of time, so I’m going to go back to you all for another quick highlight before we come back. I’ll come back to you, Caroline, you go first this time.

Caroline Bartle:

Okay, so just really quickly. There was a project called Recage, which was a really interesting title given what it was about. It was about the viability of special care units, and it was from researchers from Italy, Greece, and Netherlands. And it was really interesting because there’s lots of problems with special care units. There are problems with the retention of staff because high emotional labour. Problems with the environment that we’ve already talked about. And then we know that there’s lots of research around the poor quality of life that people have, both staff and residents in special care units.

So, this research was basically looking at all these different aspects, including the cost-effectiveness of special care units and patient quality, life measure, which is about whether it reduces or extends life expectancy and basically it reduces life expectancy. So, there’s lots around human rights led by people living with dementia. Actually, Kate Swafer does a lot of work I know on special care units. And Recage actually stands for respectful caring for agitated elderly. But I just thought the term Recage was wholly inappropriate given what it was about, but very interesting research, particularly that it’s not cost-effective.

Adam Smith:

And we know that there’s been that terrible kind of backslide into using anti-psychotic medications during the pandemic, hasn’t there?

Caroline Bartle:

Yeah, it went up during.

Adam Smith:

More appropriate now than ever. Thank you, Caroline. Danielle.

Dr Danielle Jones:

Can I mention two very briefly?

Adam Smith:

Yeah, of course.

Dr Danielle Jones:

It’s a poster. I’ll mention my favourite poster. And you were talking earlier about how you had a title that I think maybe people often walked past. The one that I think engaged quite a lot of people today was the one of Barbie. So, there’s a big poster of Barbie. Maybe you can show it on your website. Big poster of Barbie and it caught everybody’s eye and stopped to look at it. And that was somebody, and I don’t know his name, so maybe I shouldn’t-

Dr Monica Leverton:

It was an Irish study. It was the HSC, we’re in collaboration with them.

Dr Danielle Jones:

And it was about diagnosing dementia, so how to communicate a diagnosis of dementia. But the post didn’t have much information about the project, but it had a QR code, which it seems to be a theme of the conference, the QR code on every…

Adam Smith:

Wait, so what was the relevance to Barbie?

Dr Danielle Jones:

Pretty much nothing I don’t think. It was just to get people stopping.

Dr Monica Leverton:

It said scan the QR code to find out how we would tell Barbie if she was diagnosed with dementia.

Dr Danielle Jones:

Because she’s 80. What’s her? Is she 83 or something?

Adam Smith:

So, this was clickbait.

Dr Danielle Jones:

Absolutely.

Adam Smith:

Very effective.

Dr Danielle Jones:

And it worked and people stopped. So, if the goal is to stop people, to engage them in a discussion about your research a poster is a win-win. Like the poster stopped people in their tracks because it is-

Adam Smith:

That’s very effective.

Dr Danielle Jones:

Very effective. So, it made me think about how I would design a poster.

Adam Smith:

So that’s given your ideas for next time.

Dr Danielle Jones:

In the future. Yeah, very.

Adam Smith:

What was your other one?

Dr Danielle Jones:

My other one was on the theme of dementia prevention again. And I don’t think we can go without, if anybody was in the dementia prevention sessions, acknowledging the work of Maastricht University, they nearly presented every single thing. I think everybody from Maastricht University was present at this conference. But the study that stood out the most for me, and I’m really bad at pronouncing names, so I apologise to this person. It’s Jerome Barinsma from Maastricht and he spoke about the Leethy study and his work within the Leethy study was to get the perspectives of lifestyle related behaviour change for dementia risk reduction, which was a qualitative interview to study of the general population in the Netherlands about how they want to engage with risk reduction advice. And some of the things he said were really interesting.

And it comes back to the point of if we’re doing intervention studies, how do the public want us to be telling them about how to reduce their risks. If we want them to enact change and all be healthier, to make their brains healthier, how do people want to know about it? And some of the interesting findings for him were that people were a bit ambivalent about the changes they could make, but they were almost waiting for a wake-up call. So, they wanted something to happen in life. There was significant health problem for them to then think, oh, I need to do something about it. And that they had a bit of an all or nothing approach so that they would change everything unhealthy they were doing about their life rather than just chipping away at the little bits.

Adam Smith:

[inaudible 00:42:10] really.

Dr Danielle Jones:

But it’s really interesting that if we’re designing interventions to change the general population’s unhealthy habits, how do they want to know and how can we best design our intervention?

Adam Smith:

Well, and also as well fact, we talk about person-centred care all the time. We should be talking about person-centred change in that way as well, where there will be some people that just they can’t do little incremental changes. They need to go all in. It’s like the people who like the high fasting, low calorie diets who that’s the only thing that works for them. And then there are other people who like Weight Watchers where they just knock a few calories off. I can see that being working. And lots of those people are also Interdem members.

And we should say inter Interdem’s very present during the conference. So many awesome early career researchers from Interdem have been presenting work from their PhD projects, many of whom were on the podcast last year as well. I saw Gianna Cole give a great presentation. I saw Sarah Bartles was there as well. We’ve had Shale Depo who were on the podcast before. Who else? Elise Parkinson gave a great talk on drink, and she did a podcast with us a few weeks ago on hydration and that was her poster too. Anyway, that’s enough. I’m just making, there’s so many people we can mention. I’ll come to you now, Monica.

Dr Monica Leverton:

I was just going to also quickly mention just poster quality because I think it’s underappreciated how long it takes to make a poster, the effort to think about how to visually summarise your research, print them, and then travel out here to Finland with them. So just to acknowledge all of the posters.

Caroline Bartle:

From New Zealand.

Adam Smith:

Yeah.

Dr Monica Leverton:

Prize winner.

Adam Smith:

Not just the foldy kind. Yeah, I agree.

Dr Monica Leverton:

One of my other highlights was about, and I think that’s the great thing about these international conferences, that there was quite a lot of research about ethnicity and culture in research. And one of my highlights was Dr. Jennifer Lim, who’s University of Wolverhampton. And she was doing sort of ethnographic study as a Chinese person trying to access the Chinese community to do, I think it was called the think brain intervention or something like that with Chinese communities in the UK. To talk about dementia, to understand it, to get their perspectives on accessing care and treatment.

And what kind of struck me the most actually specifically with Jennifer’s talk, was the lack of consistent terminology to even just say the word dementia. And we heard that as well today in the closing session, that there’s not a word for dementia in lots of languages. And I just think that it is just so interesting thing to think about that it causes a problem with diagnosis, with understanding, even with research that there might be lots of people to talk to about their experience, but they don’t know the word dementia. They don’t know that that’s what they have. I think someone was saying in their language, dementia actually just means madness. But Jennifer was talking about how when she was working with people living with dementia in Chinese communities, they said to her that they didn’t want to use the term dementia as the kind of clinically accepted term. They had a completely different term that they preferred, but that has no translation in the English language. So, I just found that really interesting.

Adam Smith:

That is interesting. And when you talk about the inequalities and reaching diverse people for participation, they’ve had a session with LGBTQ plus session specifically, and that which I think is the first time I’ve seen that here at this conference as well, to talk about how we can better engage with communities. Which we’ve also, we did a recruitment show on the podcast two shows ago I think was the one on recruitment. And we’re going to revisit that topic as well to talk about involving more diverse communities in study participation and in study delivery. Victoria.

Dr Victoria Shepherd:

So, I guess my other message was picking up on the idea that people with lived experience are very heavily involved in designing the programme and then also co-presenting in some of the sessions. So as well, the public involvement session today, day three, hearing the kind of co-presenter talking about their own experiences was very powerful. One of the sessions was presented by Anna Smith from Alzheimer Society together with Michael Booze, bringing that kind of lived experience perspective. And a lot about how he spoke about what research had offered to him that he described how having a diagnosis of dementia was like someone had turned off a light, but actually becoming involved as a contributor with lived experience had brought back some of that light to his experience. And he also spoke about how public involvement to researchers who might be concerned that actually their voice will take over the research.

He described an analogy that public involvement is like a satnav idea that it’s a voice guiding you that can help you navigate as a researcher, doesn’t take over, but helps steer the project. And I thought that analogy was really helpful. And also speaking about how actually because the research offers hope to people and that actually they can be that kind of cheerleader for you as researchers as well. So, when you encounter difficulties or not funding or all those kinds of challenges that you come across, actually they can help motivate you and kind of cheer you on because they’re really wanting research to bring more hope in the future. So, I thought that, again, was a very powerful message. And also think about one of the other contributors as well, spoke about how actually the learning from being involved in projects as a public involvement contributor had actually helped them develop their learning as well and spoke about how it had been catnip to the brain, helped in keeping their brain active because they were learning as they contributed as well. So yeah, all those kinds of messages were quite strong.

Adam Smith:

I agree. I mean, I think one of the challenges we always have with these podcasts is there is so much we could sit here and talk about. We’ve only gone around the table once for sure, twice for your research. But what we’ll do is why don’t we just, are there any, let’s fire out some names of people. We don’t have to talk about their talks, but who are the names of the people you’ve seen here present, who you would suggest if you’ve got access to the online platform, go, and have a look. So, Tiffany James.

Dr Danielle Jones:

Yes, plug Tiffany James, Harriet Damnets King.

Adam Smith:

Yeah, go have a look at Tiffany James’s work. We talked about Elise earlier. Pascal Heinz. Oh, Victoria Tishler, where we’ve spoken to the work on arts. Anybody else?

Caroline Bartle:

Zina Aldridge because she did [inaudible 00:48:48].

Adam Smith:

Zina. Yeah, that was-

Caroline Bartle:

She had a very powerful presentation about end of life, the experiences of care staff.

Adam Smith:

There was also, did Zina also present on the moral compass?

Caroline Bartle:

Yes, that was what it was about. And how moral courage can impact moral distress. So, the more courage you have can minimise the moral distress that you have, and that’s quite important. We want to retain our workforces. That’s really important that we understand that stuff.

Adam Smith:

Absolutely. Esther Gurins, who was on the podcast, Pascal Heinz I think have mentioned. Briany Waters had a poster, which was interesting too.

Caroline Bartle:

And the people that won the awards last night, it’s well worth mentioning them as well.

Adam Smith:

They were not diversity, what were they?

Caroline Bartle:

Yeah, it was Anti-Stigma Awards.

Adam Smith:

Anti-Stigma Awards.

Caroline Bartle:

And Touchstone one.

Adam Smith:

That’s one of the projects from Leeds, the Touchstone one. But there were others.

Caroline Bartle:

She’s been going there 10 years, I think.

Adam Smith:

Now I’m going to say also Nicholas [inaudible 00:49:53] who’s a neurologist talked about nutrition, and they said that there’s been lots of research done on healthy dietary patterns for risk reduction. But none of these have ever really looked at chrono nutrition and precision nutrition as avenues that need more to look at times of day when you eat and how and when and how that should change according to that, which I thought was fascinating and a hot topic at the moment as well. We’ve had some stuff on environment as well, on air pollution, although I don’t think there was anything new, but there were lots that just add to continue to justify why air pollution’s been added to the list of official risk factors. Anybody else?

Dr Monica Leverton:

I got Nicholas Villain.

Adam Smith:

Villain.

Dr Monica Leverton:

Nicholas Villain.

Adam Smith:

Nicholas villain.

Dr Monica Leverton:

He gave the keynote this morning. Another hot topic was about drug trails and the efficacy and safety of the new drug trials.

Adam Smith:

Yeah, that’s [inaudible 00:50:58].

Dr Monica Leverton:

That was really interesting.

Adam Smith:

Do you know what, not as much talk about in the [inaudible 00:51:00] as you might have been expected or blood biomarkers. There’s been some talk about the position and there was something about, I think there was one of the breakout sessions was on preparedness for delivery. Although interestingly, the very last session of today, preparedness for delivery in terms of how you should prioritise. People thought that was the least thing that should be prioritised if funding came about. There are lots of people that would disagree with that right now with the need for more scanning equipment and stuff like that.

Dr Monica Leverton:

But he gave a really nice critical view of it. So, it showed the more personal perspectives of people when it came to the risks of being involved in those droughts. So, it’s worth the listen, I think.

Adam Smith:

Brilliant.

Dr Danielle Jones:

Harriet Dennis King also gave a really good talk about biomarkers, and that’s a huge European trial. Very difficult topic that was really well summarised.

Adam Smith:

And some good cases for why you need to combine digital, make that transition over that we’re stuck on our paper biomarkers to the digital biomarkers alongside the biological ones that we can upload.

Dr Danielle Jones:

Just playing with my head there.

Adam Smith:

Victoria, Caroline. Last chance to think of plugs.

Caroline Bartle:

I really liked the presentation by Eileen Harkers Murphy, which she talked about trauma-informed approach. We need a lot more of that in dementia care because it’s evolved in mental health over many years, but it’s still relatively new in dementia care.

Dr Victoria Shepherd:

And Dr. Meg Wyatt from the University of West London talking about arts-based approaches as an inclusive methodology, particularly for people with more advanced dementia are really liked.

Dr Danielle Jones:

And this isn’t a person, but I think it’s really important to bring in the Finnish saying of sisu, which don’t know if anyone’s heard it. I went on a walking tour the first morning and sisu is the finished term for courage, bravery, to really go at something. And I think even if people haven’t known the term, that’s sort of been the story of the conference, especially with how involved people living with dementia are and that opening ceremony, just how emotive that was and how dedicated people really are. And that takes a lot of sisu.

Adam Smith:

That’s a great way to finish. And one person who would say that who told me I learned that phrase for the first time today was from Petri Lampinen, who is one of the European Working Group members who is Finnish. I interviewed him this week and he also gave a talk in English despite being Finnish, which was incredible. So yes, do have a look, look him up. Petri is an incredible person. Thank you so much. I’m afraid that really is all we’ve got time for today. I’d like to thank my brilliant guests, Dr. Victoria Shepherd, Dr. Danielle Jones, Dr. Monica Leverton, and Caroline Bartle. We’ll be back in two weeks’ time when we’re going to be joined by Professor Nick Fox, Professor Sir John Hardy and Dr. Kathman Reed to talk about Lecanemab, Donanemab and Amyloid, which we’ve said needs some more discussion. And there’s going to be some big news in that podcast as well. So, a little bit of the Easter egg. So, make sure you come back in two weeks’ time to hear that. But for now, I’m Adam Smith and you’ve been listening to the Dementia Researcher Podcast.

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. Dementia researcher.nihr.ac.uk.

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