Podcast – AAIC 2023 – Day Three

Voice Over:

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

Adam Smith:

Hello, and thank you for joining us for day three of the AIC Highlights Podcasts. Sharing a snapshot of some of our best bits from the day’s presentations. I’m Adam Smith, and I’m delighted to be hosting this week’s shows. And today, I’m joined by three brilliant new guests. It’s a pleasure to welcome Dr. Jayashree Dasgupta, Samita Kirve, and Sarah Gregory.

Hello, everybody.

Samita Kirve:

Hi.

Dr Jayashree Dasgupta:

Hello.

Adam Smith:

Enthusiastic, and not nervous at all unlike yesterday’s, everybody here is smiling and confident. Thank you very much for all finding time to join us, and it’s easier for all of us because I know unlike previous days, you are all watching online at home like I am, aren’t you? So, we don’t have the same issue of rushing back to our hotels to try and connect to Wi-Fi, so thank you again. Let’s do some proper introductions though. Jayashree, why don’t you go first?

Dr Jayashree Dasgupta:

Thanks a lot, Adam. I’m a neuropsychologist. And currently, I’m an Atlantic Fellow for Equity in brain health at the Global Brain Health Institute at Trinity College Dublin. And I’m also the co-founder and project director of Samvedna Care in India, which is an organization that provides services for people living with dementia and mental health issues. So, that’s about me.

Adam Smith:

And of course, you, this is your third appearance on the podcast now. Almost in as many months, you were on the GBHI special and then you gave your highlights from the satellite symposium, so welcome back. Thanks again.

Dr Jayashree Dasgupta:

Thanks a lot.

Adam Smith:

Samita, why don’t you go next?

Samita Kirve:

Hi. Yeah. And thank you, Adam, for inviting me. I’m delighted to be here. So, my background is occupational therapist. I’m a senior occupational therapist and senior lecturer at Oxford Brooks University. And yeah, I’ve been working with people with dementia for a long time. I’ve been OT for the last 27 years now. So, yeah, my background is I’ve got my master’s degree from University of Bradford, and I’m starting my PhD in dementia study. So, I’m really enjoying this conference. Thank you.

Adam Smith:

That’s really exciting. And doing a PhD of course is a massive undertaking. How do you feel about that?

Samita Kirve:

Oh, I’m really excited. I’m looking forward to it. My topic is mainly about identifying gaps in dementia curriculum across higher education institutions in the UK because I believe that I think, if we teach our students how to care for people with dementia, they’ll be really excellent practitioners. So, I’m taking a step backward and creating that workforce who can provide person-centered dementia care.

Adam Smith:

I couldn’t agree more. It’s important, and so under looked as well. There are so few occupational therapy dementia researchers, I think. I can only think of a small number of people in that space compared to other areas. Well, thank you very much for joining us. And Sarah, but welcome back. Has it been a year since you were with us last? Do you always pop up on our AIC Highlight shows?

Sarah Gregory:

Yep, I come once a year.

Adam Smith:

Your annual contribution. Well, introduce yourselves to those that haven’t been listening for all of a year, and I’m sure things have moved on.

Sarah Gregory:

Yep. So, I’m now a postdoctoral research fellow rather than a predoctoral, so handed in my PhD and have my fiber and handed in my corrections, so that’s super exciting since last year. So, I work in the Edinburgh Dementia Prevention team at the University of Edinburgh. And so, my work focuses on understanding more about modifiable risk factors for Alzheimer’s disease. And I’m particularly interested in diet and stress and steroid hormones.

Adam Smith:

Wow, congratulations. You must be so happy.

Sarah Gregory:

Yes. So happy. Doing it part-time is an interesting process. But yeah, it’s nice to have actually handed it in now and just get to focus on one job rather than a job and a PhD.

Adam Smith:

I think we could do a podcast all about just doing that PhD. And I think maybe Samita might want to catch up with you afterwards-

Sarah Gregory:

Yeah, sure.

Adam Smith:

… how you managed to do that. Well, congratulations. That’s brilliant news. Okay. Anyway, that’s enough of that. Let’s get on with today’s highlights.

So, actually before we get into your highlights, I’m going to give you all a chance to talk to your own posters because I think you’ve all had a poster presentation this week. I’m going to do this in reverse order. I’m going to go back to Sarah first. Tell us about your presentation.

Sarah Gregory:

So, I have three posters that are online. I was supposed to be there in person, but I had to unfortunately put it out until the last minute. So, I’m not going to go through all of them, but I’m just going to highlight there’s two that are about patient and public involvement. And I know that that was the real focus of the podcast talk yesterday. So, I’m the student chair in the research participant peer. So, we’ve been really passionate about getting much more participant involvement talked about at AIC. So, one is talking about involving participants in the results analysis stage and how we’ve approached that. And then, the second is about co-production in our younger adults’ brain health studies. We’re looking at people aged 18 to 39, and we’re right at the start, so it’s all about how we’re co-producing it. And both of those are co-authored by research partners as well. So, yeah, I’ll highlight those two. There’s another one about diet and brain health that you can find with my surname on the online portal.

Adam Smith:

Great. Actually, for all the posters, anybody who’s not aware, if you go to the post section of the online platform and just type in the surname or Sarah Gregory, all your posters all pop up. The first one you mentioned there on… second one on co-production is interesting because I think there’s a lack of understanding about the difference between patient and public involvement in co-production. And I don’t think that gets talked about enough because so many people say that they do co-production, but actually, what they really do is patient and public involvement. What do you see? How do you go about co-production that’s different to PPI?

Sarah Gregory:

I suppose it is more involvement than involvement if that makes sense. I’m not sure that’s the best way to describe it. But trying to starting even earlier, trying to get our stakeholders involved in as much as possible, so we’re writing surveys at the moment and actually getting them to help us work out what the questions might look like, involving them on authors on literally all of the outputs we have, so the posters, but also, our peer reviewed manuscripts actually including in that stage. And when we get to the point of applying for grants, bringing in representatives there as well. So, more like a member of the research team. And obviously, reimbursing for time a little bit more at that level where we can as well.

Adam Smith:

So, rather than seeking feedback on something you’re already doing or getting input to something you’ve already made, it’s involving that from the outset. Well, that’s really exciting. Thank you, Sarah. So, have a look at those. What are yours about, Samita?

Samita Kirve:

Okay. So, mine is about investigating nursing students’ knowledge of Alzheimer’s disease. And this is the study I did at my last university, University of Bedfordshire. So, we collected a lot of data using Alzheimer’s Disease Knowledge Scale. So, this particular study is already published in singular people. So, I was going to present this in person, but like Sarah, I couldn’t go, so I presented this virtually. And the results are really impressive. And I think it was really stimulating for me in terms of understanding the nursing students’ knowledge. And I’m doing the same study now in Czech Republic with University of West Bohemia. And the plan is to compare those studies and maybe another couple of publications following that. So, I was really happy to have this opportunity at AIC to present that through poster.

Adam Smith:

That’s great. So, how well-informed were the nurses?

Samita Kirve:

It’s very interesting because they were informed more about how to look after people in terms of diagnosis management, but they didn’t understand the course of the disease. It’s more about I think the traditional nursing, how it is offered, so looking after people but really not understanding how the disease is progressed. So, they lack knowledge about that particular area. And the cohort that we evaluated or rather I evaluated, were 30-year nursing students with some kind of care experience. So, some of them were care assistants. Some of them were already kind of working in care homes. So, it was really interesting for me to see that although they had that knowledge, they still couldn’t explain that through the ADKS. I did a recent study at Oxford Brooks University with our OT students, and we didn’t use a particular scale, but we did qualitative study. So, I collected data, and then, we are going to evaluate that. So, that’s the next step. Looking at the OT students now, how much they get to know during their curriculum.

Adam Smith:

I suppose the challenge with addressing that question at the student stage is I guess, nursing education probably focuses so broadly on the generalist side of things, that when it looks at people living with dementia, or it’ll look more broadly in the elderly care and probably doesn’t get into the fundamentals of what causes the diseases in the first place. And so, deciding where to target education at what career stage or what point somebody’s decided to specialize, I suppose is the tricky bit of that.

Samita Kirve:

Yeah. It is quite tricky. And I think one of the recommendations from my study is to include a lot of virtual simulations, lots of role plays, case studies. And I think, when I was looking at the curriculum, the nursing curriculum, they just had one kind of module on dementia. It wasn’t even called dementia module, it was the long-term condition’s module, and dementia is just one part of it. So, you can imagine in the three years program, they just had this one part about people with dementia. So, my recommendation was to introduce something like a spiral curriculum, where they start knowing about dementia in the first year. They go through a little bit more about depths of dementia in second year and third year. They will be able to confidently look after people with dementia. So, I have recommended to introduce spiral curriculum. So, let’s see. I mean, I’ve had few-

Adam Smith:

Well, it’s good to self-.

Samita Kirve:

… feedback. Hopefully, they will change it.

Adam Smith:

I mean, because Health Education England has those tiered dementia training modules down there that all staff have to do. And then, all NHS have to do that kind of basic introduction, and then, gradually increase if you’re working. If you’re an old edge psychiatrist, you do more of that. I’ve got a funny feeling that Jayashree will be the perfect person to help you with develop that module if you wanted to because that’s a key component of the GBHI program, which we’ve talked about on the podcast recently. And I imagine you’ve recently had to go through.

Dr Jayashree Dasgupta:

Absolutely, yes. I think the whole focus on training is something that we are really looking at quite a bit, and that’s actually something that I’ve got a poster on as well, so I can talk about that a bit later.

Adam Smith:

Great. Well, why don’t you tell us about that?

Dr Jayashree Dasgupta:

Okay. So, one of the posters that I have is on a caregiver enablement training that we’ve developed for caregivers in India to basically upskill them and help them understand how to provide home-based care. And we’ve piloted this now with 10 families to see how this training program, how does it impact their daily lives, how does it reduce their caregiver burden. And it was quite interesting because all these families showed a reduction in caregiver experience, caregiver burden with the training that we provide them.

And the qualitative data showed that they felt that they were able to provide better care because they were given more information about dementia. They were given more tailored information about how to deal with challenging behaviors, how to manage things like issues around bathing, feeding, toileting, things that are often not addressed in a clinic when you just meet a physician. They have a diagnosis that they’re given medication. There isn’t really that much time that they spend with a professional to understand how to provide care at home. And home care is the prevalent model of dementia care in India and many low middle income countries. So, that’s something. The training aspect of it is again something that I’m really, really interested in.

Adam Smith:

That’s brilliant. And you can see how that’s got so much potential as well to be adapted. I mean, you’d think that the UK would be better at this, but I don’t really think it is. I think that that’s exactly the kind of program that would be so useful to so many carers even here as well as in low middle income countries. How did you deliver the training? Was this electronically delivered or was it physical?

Dr Jayashree Dasgupta:

So, we had different models. Some of the specialists went home and delivered the modules, some were hybrid. There was an initial assessment done at the home and then the specialist connected online. So, we are trying to see what works better and compare that because my sense is that if we use technology and deliver things in a hybrid model, it might provide people with access. It saves on a lot of logistic issues and challenges.

Adam Smith:

I can completely see that. In fact, one of the highlights that I’m going to talk about is a poster by Dr. Aida Suarez-Gonzalez that talks about an electronic training module for people with PCA, to help them understand about adaptations they can make to lifestyle to help them cope. In fact, I might as well just do this now. And one of the issues there is compliance with completing it. We’ve done podcasts on this before. Particularly, with any kind of digital intervention, compliance always seems to struggle. I mean, even with the best patient or public involvement or co-designed to make something really easy and usable, compliance with a using it in the way that you intend is always a struggle. But that sounds like a brilliant program. I’d love for you to come back and talk about that some more as things progress.

We recorded a podcast yesterday, which will be coming out in September about the work in Norwich about hydration and the importance of drinking and how strategies that people have developed to help ensure that resident in care homes continue to take onboard fluids, and what counts and what doesn’t count and how to do it. You can see how things like that would find the way. They wouldn’t know that stronger flavored things might help you to continue to drink as you get older. And no, you shouldn’t use sippy cups because they might not create spills, but they do have all kinds of other problems.

It’s fascinating. Thank you very much for sharing that. Do you remember your poster numbers? Should we check that out, or just go look for Jayashree Dasgupta on the platform?

Samita, looks like you might remember. You’re waving. Go ahead. What’s your poster number, Samita-

Samita Kirve:

75810.

Adam Smith:

75810. Jayash? Sarah, do you remember yours? No.

Sarah Gregory:

Not that prepared.

Adam Smith:

Jayashree? No. Okay. Just go look. Go look for them. They sound really fascinating. Right. Well, let’s move on to the highlights.

So, as you’ve all got to talk about your research, I’m going to pick up on the first highlight of something that I’ve seen today. And this was something that justified a press release. And this was news that new opioid use in older adults with dementia is associated with significant risk of death, including an 11-fold increase in the first two weeks. This was a study that was done in Denmark. The researchers followed study participants for 180 days after their first opioid prescription. They followed a group of older adults with dementia who did not receive an opioid prescription and compared the risk of death between the two groups. 10,474 or 33% of study participants died within 180 days after initiating their first opioid prescription compared to 3,980, which is only 6.4% of those who didn’t have the opioid prescription. I mean, that’s a huge difference. After adjusting for potential differences between the groups, the researchers found that it was an 11-fold increase in mortality risk for those that were given an opioid prescription.

The greatest risk came in the first 14 days where mortality of opioids increased 11-fold. Among those who used fentanyl patches as their first prescription, 64% died within the first 180 days compared to 6.4% in the unexposed. This was Christina Jensen-Dahm from neurology department at Dementia Research Center in Copenhagen University.

That is surprising. I don’t get a sense. I’m not quite sure whether there were other factors that came into this because of course, you might not only be prescribed opioids for various purposes, not just because she had dementia, but when you combine dementia with this, whether those other comorbidities came in to increase that factor. Do you get a sense?

Sarah, I’m guessing you are probably closer to the UK system having spent time in memory clinics and things, how are opioids used in the UK in that population?

Sarah Gregory:

I have no idea, actually. I saw the tweet about this, and I thought it was such an interesting finding that I really want to learn more about. I know that we had obviously spent a lot of time in the UK looking at the psychotropic medications in dementia patients, but opioids, I have absolutely no idea how commonly they are used.

Adam Smith:

Yeah, I agree. I mean, there’s been a lot of focus on reducing antipsychotics, hasn’t there? But I think what this clearly suggests is that there’s a need to look at that particular prescribing practice. We need to get somebody on the show maybe to talk about that. Well, that’s my first highlight, so go look at that. That’s online today. Sarah, I’m going to stick with you. Why don’t you give us your first highlight of the conference?

Sarah Gregory:

Yep. So, my first highlight is I’m going to recommend everyone listening to this who did not see it to check out one of the plenaries today. So, it was Professor Adesola Ogunniyi who’s at the University of Ibadan in Nigeria. And he gave this amazing whistle-stop tour of the epidemiology of dementia in Africa. And I don’t know how he packed so much information into a half an hour talk.

So, he covered what is known so far about dementia epidemiology in Africa, what some of the key problems to tackle are and really nice looking into the future, what’s that looking like? So, some of the really interesting things that stood out is how wide the variation in what the prevalence might be is between different studies. So, it varied from about 2% to over 40% depending on studies. And some of that it is different countries reporting different prevalence rates.

But also, he really highlighted the importance of how dementia is being measured. So, there was a study which reported from the same country, but two very different measurements of dementia had been used. So, two different ways to kind of categorize it. One was from the 1066 and that seemed to have a more accurate prevalence of dementia, and I can’t remember what the other one was. So, actually, these studies are applying lots of different methodologies, so it’s quite hard to get a grasp on what the prevalence actually is in a lot of African countries. But from what is known outside disease is certainly the most common, but vascular disease accounts for quite a lot more than we might expect in western countries.

And in a lot of the risk studies that have been done, age is far and away the biggest risk factor that’s both studied and also driving disease with ApoE e4 really interestingly, either not being studied or not contributing anywhere near as much. So, there was kind of a study that looked to the Yoruba population. And actually, there wasn’t any additional risk for being a heterozygote there was for being a homozygote, but it was quite small, particularly compared to Tunisian populations or African American populations in the US and definitely lower than Caucasian. So, it really highlighted what is known, but also, the huge gaps in the knowledge base. He spoke a lot about stigma. And then, he just spoke a lot about lots of the really large initiatives that are now underway. So, kind of funding that is actually now in place for studies to happen in Africa with African leaders that I think is going to make it really exciting to see what results are coming out over the next few years.

Adam Smith:

I think that acceptance that the dementia prevalence is growing in that sub-Saharan African population is finally bringing funding to that part of the world, isn’t it? And you can understand that there’s an issue in measuring prevalence. When I remember seeing an EDI talk from last year where there are some African countries that don’t even acknowledge that dementia is a disease or that the Alzheimer’s exists. Of course, the clinicians in the hospitals will know. But if they’re not actually, if that public health message isn’t going out, nobody’s going to come. What difficult. Well, that sounds fascinating. Thank you, Sarah. Did anybody else see that? Anybody else got any comments on that particular talk? Carry on, Samita.

Samita Kirve:

Yeah. So, I watched that as well, and I agree with Sarah. I think it’s really fascinating to see how things are changing. There was another talk. Again, I think end of life care in rural and herbal settings where there was research about, again, same thing how the definition of rural versus urban in Africa is so different than different countries. And I think the presenter showed a map where how different parts of Africa have got really huge populations of people with dementia. So, there are things happening, but I think they still need a lot of support in terms of resources and awareness.

Adam Smith:

So, this session overall was called dementia care in lower middle-income countries, I think. Is that the one with Adelina Comas-Herrera chaired that session? Brilliant. Jayashree, I think you were going to add to it as well.

Dr Jayashree Dasgupta:

Yeah. I was just going to say that unfortunately, I didn’t see this particular session. I mean, there’s so much going on. I think I missed this one, so I’m definitely going to catch up on that later. But there were parallels to what you were talking about with another session that I thought was really interesting, and that was actually a session on… It was a perspective session on opportunities and challenges to promote equity in dementia diagnosis and care in the current landscape of advance, but less accessible diagnostic tools and treatment options. And Dr. Lorena Nachi spoke about some of the work that other GBHI colleagues have been doing in Africa and raised some of the ethical issues around risk assessment and how you communicate this. So, I thought that was quite interesting, touched upon the whole importance of understanding health literacy and what that means in terms of the kind of research that we conduct in these areas. So, I just wanted to make that as a comment, which I thought was quite related to what you were talking about as well.

Adam Smith:

That’s one of the great things about the AIC is it really is that global community, isn’t it? Where you do get to see talks from researchers in parts of the world where you wouldn’t see them at anything else. So, it’s great that this conference covers those things.

Samita, why don’t you tell us about one of your highlights?

Samita Kirve:

Okay. So, I think that there are a couple of highlights, but I’ll possibly talk about this one, which was really fascinating for me. It’s about using humanoid mobile robots and variable sensors to improve quality of life and address worker shortage.

So, there was this study done by Dr. Arshia Khan. She’s a professor and director at the University of Minnesota. And it was very interesting because they also showed some of the videos of how robots were doing different kinds of group and individual therapy sessions with people with dementia in care homes.

So, I’ll talk a little bit about what those robots are. So, these are kind of very dedicated autonomous robots, and they are fed with different programs. So, they mainly talk about four domains, emotional aspects, physical aspects, cognitive aspects, and social aspects. So, each robot is kind of fed with that particular program, so they would be offering different types of therapies to people, in terms of group therapy or one-to-one therapy. And they did a study with 16 robots across eight nursing homes, and then they collected data from those nursing homes.

And one of the really key things that they got from nursing home residents that… They really liked robots, although there was this not human connection, but they liked it because they felt that these robots are not going to judge them. I find that really interesting what they said. So, these robots are not going to judge them. And they’re not going to tell them, “Okay, do this, do that.” So, this is a very learning point for me because I do a lot of training for carers and families and formal carers, and I feel like this is coming really very promptly. And Dr. Khan was explaining that elaborately, that how people with dementia take human carers in that kind of perspective, and that’s why they like these robots.

So, in terms of cognitive domain, they said the robots actually do reminiscence therapy, and they showed a video about robots doing that, which was very interesting. Physically, I felt it was quite straightforward because I think personally, I feel being an occupational therapist, putting a program of physical therapy into robot is not very difficult. So, the robot was teaching, “Okay, do different exercises and different things.” So, that worked out really well. The other interesting aspect-

Adam Smith:

I need to stop you there and ask… I’ve got questions before you carry on. So, wait a second. Did they show you a picture because when you say a robot-

Samita Kirve:

They showed a video.

Adam Smith:

… because I’ve got a robot vacuum cleaner, wonders around the house cleaning up after me. Is this a humanoid shaped robot with arms, legs, face, the whole thing? It actually moves. I’m doing this for people watching on YouTube. If you’re not watching on YouTube, you should go watch. We’ve got everybody’s faces you get to see. So, it actually moves its arms and legs.

Samita Kirve:

Yes, it does. Of course-

Adam Smith:

To deliver this.

Samita Kirve:

… it does look like a robo.

Adam Smith:

Does it strut up and down?

Samita Kirve:

Yeah, yeah. The robo was-

Adam Smith:

Does it walk up and down?

Samita Kirve:

Yeah. One of the robo actually sitting at a table, showing all the exercises. Yeah. And what I really found fascinating… I mean, this is the next level suggestion from me really to make those robots a bit more like… giving them more human features because they still look like robo, the white head, white arms, white legs. So, why not modify them and give them-

Adam Smith:

I’m going to go out on a limb here, and say I disagree with this. I think this is fundamentally wrong. This is straight out of an Isaac Asimov book where you replace a human with a robot because you just don’t have enough people, or you can’t be bothered to. This is a job for a person. This is not a job for a robot. I mean, fine if you can, I don’t care. I disagree with you. I mean-

Samita Kirve:

I agree with you, Adam. And I’m coming to that point. So, that’s going to be my critical analysis of the study.

Adam Smith:

I mean, it may be great if you’re in… I don’t know. I mean, I can see that there could be a use case for this in rural Africa where you can’t send a person. But then again, are you going to send a robot then? No, of course, you’re not.

Samita Kirve:

This is in the US.

Adam Smith:

I can’t see a place and time where you would really need this. I mean, if you’re really that desperate, surely this just goes back to the days if you’re in a nursing home, you’d wheel out the big telly with the video attached to it and just put a cassette in the recorder and play the cassette for people. What are they getting from this robot that you couldn’t get from putting a DVD in a player? Because I’m assuming it doesn’t have. If it does, in which case this is really scary. Does it have ChatGPT, AI in it where it can actually answer questions then it gets the answers on the answers?

Samita Kirve:

Okay. I’ll come to that point. So, the next domain is about social and emotional interaction, where robots were telling jokes. And the jokes were very lame jokes, nothing very specific, but robot was asking things. “Do you want me to tell another joke?” And that robot would follow some instructions. So, definitely the program must be fed accordingly. I’m sure there must be some limitations, but what I found from this presentation, the limitations were not discussed. So, for me, that’s my critical analysis for this particular presentation that I would like to know what the kind of limitations are and whether this is… I know possibly they did it in just one place. And if we have to adopt that kind of program, then, we definitely need to do a little bit more digging around ethics and different things.

Adam Smith:

I’m a big fan of artificial intelligence and new technologies and things like that, but I can also see how this has potentially got some real risk factors. I mean, fine, you’re still going to need a person there to supervise because if one of your people in the audience, one of your trainee starts doing something and struggles or gets out of breath or isn’t quite doing it right in a way that could injure themselves, you’ve got this potential that they might hurt themselves, and it’s because a person would’ve been able to identify, and also as well, a person would be able to… Don’t we talk about dementia so much about this person-centered care, and the idea that training and occupational therapy should also be person-centered. You can’t just chuckle a bunch of people in a room and say… I mean, fine. This isn’t saying a robot can only teach a group of people that it can’t do somebody one on one. I don’t know.

Samita Kirve:

Yeah. That’s interesting-

Adam Smith:

I’m talking myself out of this now. I can see having a robot that’s dedicated to that to wandering around a nursing home with a hundred residents doing one-to-one sessions is something that will be quite hard to perhaps employ a person. But I’m still [inaudible 00:31:54]-

Samita Kirve:

Well, in the video I could see there are people around robot, so I was assuming maybe they are the kind of coordinators or the carers who are supervising robot and who are supervising the group of people.

Adam Smith:

But in that case, why not just get the person to do it, right? I’ve got a feeling my responses to this might be controversial. Sorry, anybody. I’m sure it’s a wonderful study-

Samita Kirve:

That’s fine.

Adam Smith:

… it sounds really interesting. I’d love to see what the plans are for potentially rolling that out on scale. Jayashree, I’m going to come to you next to pick up yours. Come on. Give me something I can say I dislike.

Dr Jayashree Dasgupta:

Well, I don’t know, but I think the highlight session that I was going to talk about was really the perspective session on lecanemab and the appropriate use recommendations.

Adam Smith:

Let’s do it.

Dr Jayashree Dasgupta:

So, yeah. I think that’s a fairly safe zone there.

Adam Smith:

Let’s get into lecanemab. It’s going to come up all week I think in every show now. Let’s do it. Go for it.

Dr Jayashree Dasgupta:

Well, I thought the entire session was really interesting because of the way that it was… It was such a lot of discussion about really taking it from these clinical trials into how we actually prescribe this, and what are the recommendations and the guidelines. And I thought the whole discussion around the risk factors and what we should do go forwards, what do we need to think about was really what stood out as a highlight for me.

In particular, I really enjoyed Dr. Gil Rabinovici’s presentation. And he was talking about how we have to look at what it is that we really need to build if we’re going to start using these sorts of treatments. And he highlighted something. I wasn’t really aware of that because lecanemab, I think these kinds of interventions are while to come into low- and middle-income context definitely, so I was looking at it from that perspective of really trying to understand where they are in high income countries and contexts. But he mentioned that the ApoE testing is not a routine part of clinical assessment. And he highlighted how important that is actually when you’re prescribing and that’s something which I wasn’t really aware of prior to this.

And he also raised another interesting issue around resources for genetic counseling, and who does this, what do you tell people? What do you tell families? And as an ethics researcher, I just thought this was really interesting and fascinating because obviously, when you do this testing, there are implications for the other family members as well. So, what information do you provide and share to whom? Where’s the guidance on that? Who does this if you take these kinds of interventions to scale, where are the guidelines for that? Do we have research that’s looking at this kind of areas? I just thought that was really fascinating.

And I also thought there was another thing that he showed which I thought was really interesting and that was like a visual aid to facilitate risk communication to families. And I just thought that was really interesting because it’s important to think about how you convey the scientific information to families when you sit down and discuss, do you want to take this treatment up? I thought that was really interesting. So, that was really a highlight for me.

Adam Smith:

I completely agree, and that actually ties in nicely with the… I watched the ECI sponsored symposium, which is at the very end of the day that… I didn’t catch his surname, but there was a person called Alessandro who was from Italy, and Craig Richie gave a talk on that as well. And they were talking about the addressing. So, there was no research presented in this as such. There were more opinions about addressing the challenges in this new Alzheimer’s disease space where we might have disease modifying therapies. And then, there’s this push for early diagnosis, and what were the barriers to early diagnosis, which I thought was particularly interesting because in all likelihood, we know that even with lecanemab, and the drugs we have now that the earlier you give them, the better, in fact probably before symptoms even manifest themselves. But how are you practically going to do that, and how do you define the disease and decide then to whom to give that.

And then, they went on to talk a little bit about some of the emerging solutions. They really nicely broke the barriers down into this kind of four areas. There was patient related barriers, which he picked up on there, thinking that symptoms were a normal part of aging, which is course why we know people don’t go to the doctors in the first place, that they might hide the symptoms and not disclose them to other people or compensate in other ways or that there was stigma and fear attached to it, which is another reason why people don’t go to the doctor. So, they picked up on resource barriers. So, even though we know we now have a reliably proven set of blood-based biomarker testing that they’re not used. So, the need for a definitive agreement about which biomarkers you’re going to use, which nobody can agree on, there isn’t agreement on that right now anyway.

Access to PET and MRI, of course, which isn’t a routine part of diagnosis in normal clinical practice, not consistently anyway, certainly not in our country in the UK. And then, limited treatment options. They also talked about setting physician barriers. So, physicians are really struggling. I know I’ve talked to my boss who’s written a piece recently that talks about… It’s just really difficult to diagnose somebody now, particularly if you encourage younger people to come in at the first sign of symptoms and you just… You can understand why mild cognitive impairment is used, even though I know lots of people don’t like it’s because the truth is you just don’t know. It’s too early to tell whether what somebody has is due to normal aging or something else or is actually Alzheimer’s. And of course, if you haven’t got access to those other biomarkers at the moment, or even if you did, just because amyloids there doesn’t necessarily mean it’s… Yeah.

So, anyway, this was a really interesting talk. They talked about the barriers. They talked about availability of MRI, and then, some of the strategies and the key strategies that they were picking up on is increased awareness amongst people and particularly healthcare professionals. Which kind of talks to what you were saying earlier, Samita, about. And this isn’t just psychiatrists and neurologists being aware, it’s GPs, it’s practice nurses, dentists and opticians, anybody who might be in that space.

Adoption of biomarker testing, definitely, and it’s great. We’ve talked about this earlier this week because the UK has got this big fund grant call open at the moment to test exactly which biomarkers we should use, and how do you practically implement them in the healthcare system. And then they talked about design and ideal processes to detect. So, again, looking at algorithms that can bring in all those other different factors to try and spot those early symptoms, but putting them into use. So, it was a really interesting session, but thank you, Jayash. Were there any final thoughts from that one? Were there any big takeaways?

Dr Jayashree Dasgupta:

I think they were really trying to highlight the facts, looking at the risks and the recommendations, but also talking about the benefits that this would have because there was a lot of focus which was on the risks initially. I mean, I think the takeaway was that we need more data, we need more research. And right now, these are recommendations with caution because we don’t have the data and the research, so we just need to wait.

Adam Smith:

So, that’s great. So, that sounds like a really interesting session to go look at. And the one I mentioned was from ECI, which is at the end of the day. Do you remember the name of that one?

Dr Jayashree Dasgupta:

I think it was a perspective session, lecanemab appropriate use and recommendations.

Adam Smith:

Brilliant. Thank you. I think we’ve only got time now for one more round because I prattled on for too long. Sarah, I’m going to come back to you.

Sarah Gregory:

So, I’m going to highlight a poster because I always love the posters at AIC. So, this was an author, the lead author is Juliana Tavares. So, she’s from the German Center for Neurodegenerative Diseases. And the poster was looking at the EAT-Lancet diet. So, that’s a diet that has come out relatively recently from the Lancet group, which is a diet that is aimed to both be beneficial for health but also good for planetary health as well. So, I think it’s a really interesting diet to get more data on.

So, this particular poster was looking at associations with cognitive function, brain structures, and ecological sustainability in a German cohort. Yeah, it was really cool. They had quite a wide age range of 30 to 95, but the mean age was like 56, so midlife population. And it was a really large cohort, over 7,000 with cognitive data and 5,000 of MRI data.

So, they looked at how well their cohort was eating to the recommended intakes that EAT-Lancet gives for 14 food groups. And vegetables looked like they were quite a lot below and red meat and sweetness were above. But generally, all the others looked like they were kind of hitting the recommended range, which I think in and of itself is relatively impressive having looked at different diet schools. They found that the higher EAT-Lancet schools or kind of more adherence to the EAT-Lancet recommendations were associated with better cognitive function globally, an executive function, verbal memory, and total memory. But they didn’t see anything with brain volumetric measures.

And then interestingly, they did as probably would be expected, saw this association between higher EAT-Lancet diet schools, lower greenhouse gas emissions and lower land use. So, it is clearly doing something for cognitive health and clear environmental benefits, but probably still not sure what the actual mechanisms of this are because there was no association at this time point at least in this kind of midlife population was the brain volumetric measures.

Adam Smith:

No. And clearly, it’s a bit of a stretch to connect those two. But I love that they made the effort, right? To look at that from an environmental perspective. That’s great. Sorry. Did you say that that was just focused on a single country? It wasn’t in other countries or globally or anything.

Sarah Gregory:

Yes. It’s in the Rhineland Study, which I think is just in Germany.

Adam Smith:

Great. I’d love to see that spread out. That sounds really interesting because there’s so many diet studies that aren’t there that picking up on which ones are valuable, I think is interesting. Thank you, Sarah. Samita, I’m going to come back to you.

Samita Kirve:

Okay. So, I’m also going to talk about a poster. So, this has particularly got my attention. And this is something because I’m starting my PhD, I’m quite keen to know in terms of ethical considerations. So, this is about ethical considerations for action research involving groups with potential cognitive impairment. And this possibly was a project between different countries, so I’ve seen some universities from Australia and then UK. And this is presented by Daniel Kelly. What I really liked, I mean, to start with the topic is interesting, but the way the poster is presented is really nice. It’s like chicken and egg. So, you’ll see chicken, egg, chicken, egg. So where do you start, and where do you end? Because it’s like a chicken and egg story. So, what they are trying to say here is it’s really important for people with cognitive impairment to have a voice and to contribute to any research project.

And this is something I think you might have heard already, Adam, about this, but I keep hearing about whether we really need ethics approvals. We have a really long process. We have several forms to fill in, and when you’re involving people with dementia and different cognitive impairments, it’s really hard for them to fill in all these forms and follow these processes. And that’s one of the reasons people really don’t want to participate in most of the research projects. And this is kind of an ongoing battle. Where do we start, and how do we do this?

So, this poster I really liked for that reason because it’s raising that discussion again. And what they’re saying is we need that research paradigm shift in terms of how we involve these people in research projects because this is about them. But if we can’t involve them, if we keep following all these different processes, it’s really going to be hard to get their voice in the research project. So, one of the suggestions is how we collaborate, how do we think creatively.

Adam Smith:

I think ethics panels do an amazing job. I mean, the variety of work that they’re asked to look at and give opinions on, Jayashree, as an ethicist. I’m sure you can have an opinion on this. But also as well, I think sometimes, trying to protect people can get in the way of what the people… Actually, they’re trying to protect want. And I think having more experts with lived experience involved in ethics panel. It’s great for ethics panels to say you’ve got to have patience and public involvement, which they mostly, I’d say do now. But I think equally, you could have some patient and public involvement in the ethics panels of people with lived experience, who are in a much better place to judge whether a study is practically deliverable or not.

If you are on an ethics panel and you’ve got a way of doing that, I’d love to hear more about that. But I think it’s something that could be looked at. Jayashree, do you have a view on that?

Dr Jayashree Dasgupta:

You know, I completely agree with what you’re saying. It’s a difficult kind of situation to see. Some of these things are so difficult to implement, but they’re safeguards that are required as well. I mean, I’d love to know if someone has anything to add to this further.

I think another thing that we’ve experienced at least working in an LMIC context is the whole process of participating in research itself is so new for people that even when they don’t have dementia, even if you’re working with a normal population, when you’re talking about the whole process of gathering ethics in participating in research, it is very novel. So, that’s again something which I’m very interested in looking at. I haven’t yet done that. I think there’s a lot of scope for work that can help ethics committees streamline these processes, keeping in mind the voices of people with various illnesses as well as the different contexts in which these research studies have to be conducted.

Adam Smith:

I agree. Sarah, you’ve brushed up a few against view ethics panels in your time.

Sarah Gregory:

I also have the pleasure of sitting onto-

Adam Smith:

And do you know what? I thought you did. I thought you did. I didn’t want to pick on you just in case.

Sarah Gregory:

Yeah. So, I’m the vice chair of NHS Ethics Committee, but I’m also a member of the Samaritans Ethics Committee. And on the Samaritans Ethics Committee, they do have lived experience representatives sat on it, and it’s amazing. And I think it makes it much better. But I guess, the ease that they have is that they look within a specific kind of research area, so it’s possible to recruit for, whereas the NHS Ethics Committee, so this is obviously for UK. We have lay members, and obviously, the expert members could also have their own health conditions that they are PPI number four as they come in. But actually, like you said, you see so many things. It would be impossible to have PPI for everyone, but it is something that I think about with quite a lot of applications when I think we just don’t understand the experience of these participants to know if that PPI that’s been done by this research group is good enough. And I think, yeah, there could definitely be a way to do it better.

Adam Smith:

I think maybe having a pool of people that you could draw upon to say, “Can we draw you in to look at that?” Thank you very much, Samita. That’s fascinating. Jayashree, you had another poster I think you were going to talk about.

Dr Jayashree Dasgupta:

No. I was actually just going to talk about the plenary. That was something [inaudible 00:48:47]-

Adam Smith:

Oh yeah, of course.

Dr Jayashree Dasgupta:

… I mean, I just thought that was really fascinating. Professor Marcel Solems plenary on the aphasic dementia of Alzheimer’s disease. I was really interested in the data that he was presenting. And one of the things that really stood out for me was he made a statement mentioning that they’re now trying to show the evidence that early language related issues could be a biomarker for Alzheimer’s disease. I mean, think of what that would mean for scalable assessment. He actually said then that would be a really scalable kind of biomarker assessment, which I think that it was just really fascinating to hear that from him and think potential future, because particularly when you’re looking at low- and middle-income context, language assessments seem to be something that might be potentially scalable. And if there is an evidence-based to show that there is a pathway to do that, then, I’d be very interested to see where that research goes.

Adam Smith:

That does sound interesting. So, have a look at the plenary. Do you know I have that? Many, many years ago, we had somebody on the podcast come and talk about how they’d used Amazon Echo devices as a home help tool fundamentally, but that did get me to think at the time that I wonder if a home echo could be programmed to analyze your vocal interactions to spot stress. So, it could say, “Hey, you sound a bit stressed.” I know you see this on Blade Runner, the computer. We would probably be able to do this. It feels like between AI and the devices we have in our homes, things like that can’t be too far away where they could potentially identify changes in the language that you’ve used or something maybe every Monday morning, and it’d ask you to read something out or tell it a story, and then, over time, it could say, “I could see that being practical.”

Of course, not everybody in low middle countries is going to have a smart device in their home, but it sounds brilliant. Thank you so much. Do you know what? I know you’ve all got at least one more highlight to say, but as ever, we really have run over time. I had one on hearing loss. I’m going to read this really quickly then we’re not going to talk about it.

Hearing loss in dementia and all that [inaudible 00:51:20]. Previous studies have suggested that hearing loss may contribute to cognitive decline, but there haven’t been any randomized controlled trials to measure the impact or effectiveness of hearing aids in reducing the risk. This achieved study launched in 2017, followed a thousand adults from age 70 to 84, and found that there was no significant difference in cognitive decline between participants who used the hearing aids and those who didn’t overall. However, in the group at higher risk of dementia, those who wore hearing aids had a 48% less chance of cognitive decline after three years compared to those who didn’t.

I didn’t see the detail as to what they defined as a higher dementia risk group. I don’t think they really got into ApoE. Maybe they did, but they identified this higher risk group, and if they used hearing aids, they were beneficial, but they weren’t. Overall, the study highlights the importance of hearing aids for individuals at risk of experiencing dementia and suggest that hearing loss may have a positive impact on cognitive health, which I think as we said, we knew, but this is a trial kind of to some extent proving what everybody thought was the case already.

I think that’s all we’ve got time for today. I’d usually ask you what you’re looking forward to tomorrow, but we really, really have overrun. Was there anything else that anybody really must get into the show?

Samita Kirve:

I’m looking forward to a particular one, which is about hormones and dementia. So, how hormones are really contributing to memory impairment. And that’s something I’m really keen on because at our university, we’ve recently launched a menopause support group and different things.

Adam Smith:

I think we talked about menopause earlier on in the week as well, and I’ve certainly seen a couple of posters looking at the impact of menopause on cognitive decline.

This has been brilliant. Thank you ever so much. As ever, really, super fascinating to have everybody’s views and great that you’ve all been to so many different sessions.

Of course, the platform is going to be available for at least another month, I think, after the conference, so if you’re there in person, you can go away and hopefully, catch up on some of these sessions later, or if you’re watching online, have a look.

Thank you very much again, everybody.

Today, I’ve been joined by the brilliant Dr. Jayashree Dasgupta, Samita Kirve, and Sarah Gregory, soon to be Dr. Sarah Gregory from Edinburgh. It’s been brilliant. Thank you ever so much.

Samita Kirve:

Thank you so much, Adam, for having us. Thank you.

Adam Smith:

You’ll find profiles of all of my brilliant guests and information on the conference. And for more information if you use Twitter, just search #AIC23 for those that aren’t attending. You’ll see that there are lots of photographs, posters, and summaries of sessions, so have a look on Twitter and do check out our website to read up more about our brilliant guests.

I’ll be back tomorrow with three more guests for our final show in this week’s AIC Highlights, so stick with me one more day, I promise, and then we’ll have a two-week break before you get any more podcasts. I’m very conscious. We’ve swamped you recently.

I’m Adam Smith, and you’ve been listening to the Dementia Researcher Podcast.

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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. Dementiaresearchernihl.ac.uk.

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