Podcast – AAIC 2020 – Day Three

Voice Over:

Welcome to the NIHR Dementia Researcher Podcast, brought to you by dementiaresearcher.nihr.ac.uk in association with Alzheimer’s Research UK and Alzheimer’s Society, supporting early career dementia researchers across the world.

Adam Smith:

Hello. I am Adam Smith and I am delighted to be hosting this podcast for the NIHR Dementia Researcher website. Once again, I am joined by three special guests who have all been immersed in the third day of the Alzheimer’s Association International Virtual Conference. As with the last two days, the focus for our chat today will be what we’ve seen and heard from the conference, so that we might highlight something that you’ve missed or inspire you to go take a look at.

Adam Smith:

I’m going to cut straight to the chase. Please allow me to introduce our three panellists. We have Danielle Wilson from Imperial College London, Doctor Leo Chouliaras from Cambridge University and Peterborough Hospitals NHS Foundation Trust. It is a Foundation Trust, right Leo?

Dr Leonidas Chouliaras:

Yeah.

Adam Smith:

Yeah, fantastic. And Doctor Anna Volkmer, who you will all know, is a speech and language therapist and academic from UCL. Hello, and thank you everybody for being here today.

Adam Smith:

Anna, I’m going to come to you first time because that’s… well, two fold. First of all, people will now know that we’re not the same person because we are actually in a podcast at the same time. You and I talk all the time, but we’ve never actually been in a podcast together before, I realise.

Dr Anna Volkmer:

I’m glad that we can now differentiate between us, yeah. That’s really significant.

Adam Smith:

And the first time I’ve gotten to introduce you as Doctor. Congratulations.

Dr Anna Volkmer:

Thank you very much. I’m going with evil Doctor Volkmer. I think it works well with my surname.

Adam Smith:

It does. You’d be a character with some minions, I imagine.

Dr Anna Volkmer:

Yeah. I was going for a Bond villain. And I’d like some henchmen, but you know.

Adam Smith:

Isn’t that what the children are for? Are the children your henchmen?

Dr Anna Volkmer:

Yeah, precisely. That’s right.

Adam Smith:

How does it feel? I feel like we’ve been on this journey with you over the last couple of years that you’ve been writing for us, and podcasting, and doing all your blogs and webinars and things.

Dr Anna Volkmer:

Yeah, I’m glad you say that. Yeah, no. It feels great. It’s a bit of a relief really, to get all the thesis stuff out of the way. But it’s also exciting to get onto the next stages. Everybody always said to me, “Your PhD is almost your gateway to being able to apply for lots more research funding.” Now I feel like the world’s opening up in lots of ways, which is exciting.

Adam Smith:

Well, exciting that you at least are perceiving it that way, because I think also as well, we’ve done blogs and podcasts on this, that it can also be the most scary of times too, when you’re starting to go, “Oh my God, what am I going to do now?”

Dr Anna Volkmer:

That’s true. To be fair, I think that’s very true for most people. I think I’m a very lucky person in lots of ways because I came to this with a career already. Actually, I’ve always got that to fall back on, and I found it really reassuring, and actually really helpful in keeping me quite calm. Whereas lots of my friends and colleagues around me, when they were overwhelmed, it was all consuming. I think also probably, things like having kids as well, that reminds you that you can be beavering away on your thesis and actually, if a child comes and chats at you, that has to be more important.

Adam Smith:

Keeping you grounded.

Dr Anna Volkmer:

Yes.

Adam Smith:

Well done, and congratulations again. It’s fantastic. You’re going to have to give me a new update for your bio on our website that still says you’re a student.

Dr Anna Volkmer:

Of course.

Adam Smith:

Danielle, I have to say, I was deliberately a little bit vague when I introduced you at the start there, because the last time we spoke, you were looking after clinical trials at Oxford. But now I saw your email’s changed and you’re at Imperial now. What are you up to these days?

Danielle Wilson:

Yeah. Yeah. Thanks, Adam. Yeah, as you say, I was within Oxford for the past couple of years leading the Oxford Radiology Research Unit, and also working across the university as well, to try and embed AI technology largely within radiology actually, within the NHS. I’m actually back in London at Imperial, five weeks into the new job. I am leading the Care Research Centre as the Commercialisation and Centre Manager at the UK Dementia Research Institute.

Danielle Wilson:

We focus on developing new ways to help people live well with dementia using technology. We might use movement sensors, ECG, other equipment within the home to try and prevent, predict, and to try and perhaps manage that environment so that people can live longer and much more successfully within their own home. That was what I was really interested in, listening out for at this conference.

Adam Smith:

Fantastic. And actually, I didn’t realise you were working for the DRI. In a past episode, we have had… is it Dave Sharp?

Danielle Wilson:

Yep. Yep. He is the director of the centre.

Adam Smith:

We have had Dave Sharp, for anybody trolling through our back catalogue, in the session where we talked about the Alzheimer’s Society’s Summit, Care Summit. I think Dave Sharp did a talk for us about what work is going on in the DRI on care. That’s fascinating. Thank you very much, and congratulations on the new job.

Danielle Wilson:

Yeah, thank you.

Adam Smith:

Leo, it’s a while since we’ve seen you. And of course, as a jobbing clinician, I imagine you’ve had a bit of a busy few months.

Dr Leonidas Chouliaras:

Yeah, exactly. It’s been very busy. I normally work half-time for the university doing research related to Lewy Body Dementia and the epigenetic involvement of DNA methylation in Lewy Body Dementia and Alzheimer’s disease. But I also normally work half-time for the NHS as an all-day psychiatrist. And actually, the last few months since the university has been closed, I’ve been working full-time in an inpatient psychiatric ward looking after people with dementia with all sorts of other psychiatric problems. It’s been a busy few months really.

Adam Smith:

Well, although good, it sounds like that’s the best for you. I think it’s good that they didn’t try to scoop up all the psychiatrists and put them elsewhere.

Dr Leonidas Chouliaras:

I think people still get psychiatrically unwell, so it’s very wise to have psychiatrists doing that and not looking after people with chest infections.

Adam Smith:

Absolutely. Thank you again all of you, for joining us today. The focus for day 3 of the AAIC was the Clinical Manifestations and Drug Development. That will be what we’ll talk about today.

Adam Smith:

Before I come to each of you to discuss your own highlights, I just want to pick up on a couple of what were the headline talks for the day. The one that caught the most attention on social media was Nick Fox from UCL’s session on Early Onset Dementia. Anna, did you even get a mention in his… I know Ida did who obviously has done podcasts for us before.

Dr Anna Volkmer:

Yeah, Ida did, but I didn’t quite make it. I didn’t quite make the cut. He did email me and a few members of the team in anticipation of his talk and asked for advice. But one of the things, I guess I’m in a privileged position because I work with Professor Fox so as he was talking I basically knew everybody he was referencing and I really enjoyed…it’s really nice to actually hear someone you’re walking with talk, but then also hear them talking about the team as well so it was a real pleasure. I really enjoyed it.

Dr Anna Volkmer:

If I go through what he talked about and then that might be quite helpful for us to then chat about. He basically talked about early-onset dementia in terms of Alzheimer’s, so early onset Alzheimer’s and spoke about how this accounts for quite a large proportion of all the early-onset Alzheimer’s, early-onset dementia, I’m sorry. And the fact that these generally non-memory led Alzheimer’s and therefore can be really difficult to diagnose. And then he went through the kind of forming types. So he talked a bit about, he did talk a bit about the memory led, early-onset type but also talked a lot about the logopenic variant so the language led variant where people present with real preserved social façade but often difficulties in repetition and word retrieval because of the problems with the phonological buffer. He talked about the executive difficulties some people might present with and often associated with the Presenilin 1 variant. And then the visual variant so the PCA, Posterior Cortical Atrophy, and how those…He talked a bit about how with PCA people often end up with multiple trips to their opticians before they then get maybe guided towards even psychiatry with a functional diagnosis before. And I think that often happens with the language led variant as well, the logopenic, that they often get diagnosed with a functional difficulty or an anxiety issue, or even depression before they actually are able to identify that these young onset dementia are actually Alzheimer’s.

Dr Anna Volkmer:

And then he spoke a little bit more about things like age of onset and what these same genes overlap with like cortical basal syndrome. A little bit about the genetics of it essentially saying that it is a little bit more likely that it’s associated with a genetic form if it’s early-onset, but it’s still very rare that it is genetic. And he talked a little bit about mortality and life expectancy essentially saying that people with the early-onset Alzheimer’s live an average of kind of 11 years whereas people with the later-onset live an average of, I think he said 9 years. And then he really came back to actually the more day-to-day stuff is about living with it and talking about the impact on social isolation and on social isolation he came back to COVID and one of the things that Aida Suarez Gonzalez has done in our team at the Rare Dementia Support Group is she’s published and collated a lot of work around what’s been done to support the people with the rare dementia in particular who are living with CoVid. Well, during CoVid sorry, they haven’t got CoVid themselves, but during CoVid and what’s been done in terms of care.

Dr Anna Volkmer:

And then he also pointed out the fantastic work being done by the Rare Dementia Support which I’m also part of. So the rare Dementia support at UCL is an organization led by Professor Seb Crutch and they have built a support group for all of the rare dementia including PCA, PPA, early-onset Alzheimer’s and a Carer’s group and behavioural variant and they do fantastic work in hosting support sessions and support kind of talks and networking sessions and also actually being constantly on the phone to people. They have fantastic phone, I feel like I’m in an advert now, but people can phone up from all over the country and even beyond and we’ve actually…What I’ve found quite interesting at the minute, we’ve actually found that we’ve had more calls, way more calls at the moment during the CoVid period to those lines and particularly…

Dr Anna Volkmer:

So, from my experience what happens in that team is that the team members take the calls and they direct the ones specifically where its related to language or swallowing, which is what I do as a speech therapist, they direct them to me. But I’ve had an overwhelming number of people wanting to talk about communication because they feel so isolated and that is something that Professor Fox touched on.

Dr Anna Volkmer:

But it was a really, really accessible talk and it was the second time he’s given a plenary talk at AAIC so I think it was a great honour for him to do that a second time, but it was great.

Dr Anna Volkmer:

I’m a fan.

Adam Smith:

It was I think, yeah people were raving about it on social media and I completely agree. I think he was clear, concise, accessible. When the video started to play I was a little bit unsure because I’m not always a big fan, I have to admit, I think they can be a little bit uncomfortable particularly if technology doesn’t work in watching those. They really, I think they really did add to it. They were useful in the place where they were inserted. So yeah, well done, Nick.

Adam Smith:

Danielle and Leo did you have anything to add to Anna’s fantastic summary?

Dr Leonidas Chouliaras:

Yeah, I really liked it, as Anna said. She made a very good summary. I also really liked that he started his presentation thanking all of the members of his team for all of their work but also he made a very good mention on all of the people and their families who have been taking part in the trials and the studies which I think is very important to acknowledge.

Adam Smith:

There are a few people that did it, I am recalling Shane Ludlow’s plenary from last year when he collected his award, he did very much the same. Kind of making sure that everybody got the right credit throughout it wasn’t just a token gesture of, “Oh and here are the other people in my lab at the start.” I think that’s…it shows a lack of ego there which, I think is fantastic.

Adam Smith:

Thank you very much Anna for providing that wonderful summary. And Leo, I’m going to come to you next. Did you, you attended the Mechanisms of Neurovascular Dysfunction and Interaction with AD, AD Pathology, which Costantino Ladecola led. And I think salt was discussed in there, as I butchered that name.

Dr Leonidas Chouliaras:

Yes exactly. It was a really fascinating talk by Costantino Ladecola from Cornell University in the United States and he actually has been doing this kind of work for several years so he gave a very comprehensive summary of quite a lot of work they have done in the field. Essentially, it comes back to a lot of the clinical work we do. Except in clinics we diagnose people in memory clinics about 70 or 80% of the people get a diagnose of Alzheimer’s disease but when we do actually do the neuro pathological studies we see that the number is lower and most of the people actually have mixed pathologies: Alzheimer’s and vascular disease as well. And starting from the point his group has been trying to understand a little bit more about the contribution of cerebral vascular disease and Alzheimer’s disease and how the different pathologies interact and he had very good material in his presentation. He explained exactly how the cerebral vascular system in the brain works and about its own auto-regulation mechanisms. That the brain needs to ensure that it regulates the blood flow and how this goes wrong in Alzheimer’s disease and in dementia with the different types of cells that are involved in the system and he said that it’s widely believed that [inaudible 00:16:15] pathologists contribute to [inaudible 00:16:18] dysfunction and dementia. He also showed very good data about how Alzheimer’s disease pathology actually affects the cerebral vascular system and then through that causing dementia. And we do know very well that hypertension is a risk factor for Alzheimer’s disease and he tried to explain the mechanism of that but also how salt is involved, as you said, through a series of experiments.

Dr Leonidas Chouliaras:

The work mainly is in live mouse models, but they have a lot of high profile publications and they actually saw that normally the brain has their own vascular regulation system and what happens in Alzheimer’s disease, there is a failure of this whole cerebral vascular system. That’s through oxidative stress and they identify the particular type of cell [inaudible 00:17:10] that are involved in the process. And that it seems [inaudible 00:17:16] and our pathology as well as hypertension activate those paravascular [inaudible 00:17:22] cells and they cause dysfunction in all levels. And then through that the brain is depleted of the nutrients and the blood flow and then we have the clinical symptoms of dementia.

Dr Leonidas Chouliaras:

And then he went on to talk about the salt and how that is causing dysfunction. Obviously salt can increase hypertension and that can be a problem, but it seems that salt also has an independent mechanism of how they cause damage in the blood vessels in the brain. And it seems that salt directly affects the epithelial cells in the brain and through that, through inflammation, it affects the function of the blood vessels.

Dr Leonidas Chouliaras:

What I thought was very interesting was that they then went on to find out more about how salt interacts with the epithelial cells looking at the specific inflammatory factors quite refined work. And they actually then came to the conclusion that salt directly affects [inaudible 00:18:21] and in mine that had the cerebral vascular damage, when they gave them an [inaudible 00:18:27] treatment they still managed to rescue their cognitive function meaning that it’s not just blood vessel damage, but also blood vessel damage associated with [inaudible 00:18:39]. And essentially gave back the message that through studying the cerebral vascular disease and blood vessels in the brain we can find modifiable risk factors to reduce the risk of getting dementia, but also open new therapeutic targets trying to ensure that the cerebral vascular system in the brain is working very finely.

Dr Leonidas Chouliaras:

So I thought it was a very good talk and very good data. As I said it was in mainly mouse models so I think we need to see how that can translate to humans, but overall very high quality of work and as I said, work over several years. I think the message is we do need to reduce salt intake and also manage the modifiable risk factors that we know very well, hypertension, and in general showing that healthy lifestyle can reduce our risk of getting dementia and that there are particular mechanisms behind that.

Adam Smith:

A really good summary. Thank you, Leo.

Adam Smith:

Did anybody else manage to get to that session as well?

Dr Anna Volkmer:

Yeah.

Adam Smith:

Anna.

Dr Anna Volkmer:

Sorry I went to that session as well and I really enjoyed it, I found it really accessible. I thought the visuals that he used to explain the mechanism as a non-medical person, I found that really, really helpful, it made it really clear. And when he went into the information on dietary so I found it quite fascinating because he also explained something about dietary salt collecting in the guts and causing something, was it IL17, to be released which in turn impacts on cerebral vascular function. Is that right, Leo?

Dr Leonidas Chouliaras:

Yeah, exactly. So it seems that the inflammation and the signals already start from the gut and then signal the damage response to the brain so it was very, very interesting.

Dr Anna Volkmer:

Yeah, fascinating how you know that kind of…It’s not just in the brain but also in the gut. We don’t think about all those different levels, but equally that idea that we’ve always talked about high dietary salt being bad for you, but actually why and how, I thought that was really valuable. Made it very, very accessible.

Adam Smith:

It is. I completely agree and as you say, another modifiable risk factor to add to the list. It’s a point at a change of lifestyle, generally isn’t it. Because I think whether that’s reducing salt, getting the right about of sleep, the right diet, keeping your brain active, taking more exercise. These are all the same things that we’re told if we want to avoid strokes and diabetes and heart disease and things like this. So, it’s kind of no surprise that this is a factor, however understanding why it’s a factor is important so it can be looked at further.

Adam Smith:

Thank you Leo and Anna for summarising that. So let’s talk more generally about the stuff we’ve seen and heard.

Adam Smith:

Danielle, you’ve been quiet. Let’s come to you first of all. So what did you see and hear yesterday that caught your eye?

Danielle Wilson:

Yeah, sure.

Danielle Wilson:

So, my previous work within dementia has been around clinical trials, recruiting patients into trials and running really big prevention studies. And only being within the DRI for the [inaudible 00:22:07] I wanted to go and see what was happening within technology and I really focused my attention there. So, something that caught my eye was a presentation by Professor Ipsit on how at the University of Harvard where she outlined mapping behavioural symptoms within dementia using passive radio sensing. And how the digital phenotyping makes this work possible. And by that she defined that as moment-by-moment quantification of the individual level of the [inaudible 00:22:47] phenotype in [inaudible 00:22:48]. So using data for personal digital devices to enable us to study perhaps how people move around their homes and what that then says about what might be happening clinically.

Danielle Wilson:

So he used quite a good example of a patient with a depressed mood for example and being able to use voice analysis, perhaps using an Alexa device or your mobile phone to be able to track that. But also using atticrophy, which is the study of movement, to perhaps track sleep, appetite, or psycho motor symptoms and he then applied that to dementia. So could we, perhaps, manage, track, agitation or the other end, apathy.

Danielle Wilson:

So, his group have been working with MIT Massachusetts, its geo technology, to monitor this movement and behaviour and using A.I. to then map these movements. And what I really liked about his presentation was his use of the technology which is still fairly experimental, and then using it to try and help clinicians facilitate earlier intervention. And they have been able to demonstrate that change of movement or old patterns of movements could be used to adjust medication or behaviour or interventions. And they’ve used it CoVid patients as well living in an assisted facility where they were able to manage breathing rate of those that were diagnosed with CoVid and the changes between day one for example versus day four. And obviously not having to have very close contact to be able to do that so I really like the evolution and the quick nature that that could be used within CoVid patients so I found that really interesting.

Danielle Wilson:

There were a couple of other presentations that caught my eye, do you want me to summarise those as well?

Adam Smith:

Yeah please do. Jump in.

Danielle Wilson:

So one was work being led by Professor Al Landford at UCL and was presented by Myra Bellow [inaudible 00:25:02] and it was an eye compass as they call it. It was preliminary work really to get the views of clinicians. So if this was a dashboard, a tablet, or an app that could actually track a patient’s progression using individualised markers. So the clinician can call this up, they can compare it to the previous trajectory, trajectory of other people with the same diagnosis and it would also show progression over time. So I thought that was a really neat piece of work that could actually help use some of the technology that we’re talking about to then translate that into the clinic where it becomes really useful for clinicians treating patients with dementia and Alzheimer’s, but other diseases as well which need tracking overtime.

Danielle Wilson:

And there were two other things that really caught my eye, digital bio-markers. And this was presented by Professor [inaudible 00:26:04] Dodge from Oregon Centre Ageing and Technology. And she described the digital bio-marker as using participants as their own universe, which actually I really quite liked. And using these digital bio-markers within clinical trials. So she has gone even further, so can we use technology such as movement of mice[s] for example in clinical trials as the outcome measures. Because actually [inaudible 00:26:39] on the NIC or my CSS levels have gone up or down by a couple standard deviations might not mean much to that patient in their own home, yet if they’re sleeping better or if they forget to take their medication as regularly that will have the biggest impact. So it’s trying to use technology that we might see in people’s homes in a meaningful way for those patients and their families to then translate that into outcomes for clinical trials. And I thought marrying up all of those things was incredibly interesting and a really emerging area I think, of kind of watch this base. And also the emphasis on using technology doesn’t mean getting rid of the human in healthcare but it means we can provide additional information or can actually support clinicians to make perhaps better or more personalised decisions and then help those people with dementia and their families live longer in their own homes. So I really like that combination of taking it from the home, into clinical trials and into the clinic as well.

Danielle Wilson:

And then the last presentation was from Adam Hampshire at Imperial, so as part of the DRI, with [inaudible 00:28:04] and they outlined results from the Protect Study using cognitract which is a battery of assessments. Which is actually an online battery. They’ve used it on ten thousand people without dementia participants that were over 50 years of age to see if it could track progress over time. To see if people would actually do it from the comfort of their own homes and actually is it cost effective as well. And they were able to demonstrate all of those things actually. It is cost effective, you can track change over time, and it is quite sensitive to change which could therefore mark advantages for clinical trials. Can we ask people to do things from the comfort of their own home, are they sensitive to that change and actually are they cost effective. So I thought that was a really interesting presentation as well and ties into the work that we do within the DRI at the care research and technology centre so it was good to see that within all of the other things that were being done while [inaudible 00:29:16]. So I found those really interesting and I would definitely give them a watch if you haven’t already.

Adam Smith:

Thanks, Danielle. I think we’re really starting to scratch the surface with technology. I think there’s still a lot of concerns about the reliability of its use and concerns about ethics of the data and things like that but between that combination of…I saw an interesting [inaudible 00:29:43] yesterday somewhere which, is probably somewhere at my fingertips around smart phone ownership in elderly populations in the US was something like 80% and there were more people with smart watches then you’d actually imagine. In Florida, I think it was, over 50% of over 55 had the smart watch or something like that. That combination of smart watch with your smart home devices actually starting to understand what kind of questions do you ask and how often you ask them.

Adam Smith:

Has anybody of yet…I love my sci-fi, but if you’ve seen that Adastra Movie recently and then the more recent Blade Runner film where they had these computer A.I.s that asked you questions and then listened to how you answered them to decide if there was some kind of intervention needed. So you can imagine your smart home asking you some questions every morning when you wake up and combining with your smart phones and wearable. And if that’s what it takes in order to predict that you’ve got an issue in your thirties and forties to act on those modifiable risk factors then it might seem a bit sci-fi, but let’s…I’m all up for that, I love technology, I’m a techno-positive rather than a techno-phoebe.

Adam Smith:

Between asking each of you I’m going to pick up on something I heard as well [inaudible 00:31:11]. So the one I’m going to mention, first of all I’m kicking myself because having asked everybody to make sure you knew who gave the talk I didn’t write the note down myself. So this was the talk on use of AXS05 which is a drug intervention for use in agitation. There’s lot of data in the talk which I recommend you go back and look but the main takeaway from this was that over this five week trial of what they call advanced one trial, this particular drug treatment had a 30% reduction on the CMA eye scale and agitation. Its recommended that this might be only a short-term use but 30% after and you started to see the benefits after about a week or two, I think it was. So that seems like I know right now, particularly on today’s sessions, there will be a lot of discussion around agitation and how to manage that through cognitive behavioural therapy and other non-drug interventions. But I think when…I think most people would agree that sometimes a short-term drug might have its place and if that is the case having one that’s the right drug and that’s effective rather than relying on the old-fashioned antipsychotics is important and X05 looks like it may have some potential, so do go have a look at that talk.

Adam Smith:

Who am I going to come to next? Anna, what did you see?

Dr Anna Volkmer:

I looked at quite a few different and diverse things but I just wanted to pick up on a poster that links with what yourself and Danielle mentioned. It was a poster by a guy called Alexander [inaudible 00:33:01] in the department of speech, music and hearing at KTH [inaudible 00:33:07] Royal Institute of Technology. I’m not sure exactly where that is, but he was essentially describing the idea of early diagnosis of dementia through audio recordings. So using like, so you get somebody to do like a description of a picture. Something we often use in speech therapy and neuro psychology is a cookie theft picture and then recording it and using the google automatic speech recognition module and actually using that to look at things like accuracy, precision, specificity, and recall and using that as an early detector for dementia symptoms. And I know that’s something that I’ve discussed with many people previously, this idea of like using your mobile device to pick up on conversation actually rather than…because we know that things like picture descriptions or answering specific questions has got some validity, but actually in language we think that conversation carries a lot more information about how people are managing cognitively and functionally and so…But the problem, of course, with that is then, this isn’t in the poster this is more my reflection, is that difference is that actually if you’re recording using your Alexa or your phone conversations you’re actually recording people who aren’t there. Sorry, who haven’t consented. And I think that’s often a problem with some of these devices and the ideas around technology is how do we get over consent? Because it’s one thing for example, Danielle described that example where people are looking at senses and you can kind of monitor where you’re walking. I looked at another poster and they were talking about a GPS monitor. But then there’s another thing where you’re capturing more in their environment which is, audio or video, something else but would provide so much more useful information. That’s what I’m really looking forward to in the future. Is how we get over that hurdle and capture more of that.

Dr Anna Volkmer:

The other thing, I looked at lots of posters because I think they had a lot more…probably because of the therapist in me. Many of the intervention and the therapy stuff is more in the poster section and there was a really nice poster I looked at which links to a talk actually that I did. One of the webinars that I did, Adam, on remote therapy; delivering things through the computer. And the poster was called “The Virtual Interface for Dementia Management in CoVid-19 Era and Beyond” and it was presented by someone called Paul Agoss from the University of Toronto. And she had done a kind of systematic review of the literature on delivering remote assessments or doing remote assessments like the Mocker, and the MMSE, and the Boston Naming Test and looked at…and basically demonstrated that they were equally valid. In the review it was demonstrated whether they’re done remotely, by video technology, or in person.

Dr Anna Volkmer:

But then she also addressed, and I think this is quite nice because this is real. What happens in reality in clinical context is the research says, Yeah you can do all this stuff, but actually there’s always barriers. And she took some of the barriers from the literature and kind of addressed them with information from the literature. And I think often, we say yeah you can do everything remotely via video technology, but actually she was raising that there’s really limited access to technology, there’s always technical interference, as we’ve experienced today. There’s always issues of privacy and security and there can be kind of issues in terms of people’s actual knowledge and awareness of technology and she presented a list of ideas and solutions which I thought was just really neat to make it…bringing the literature into the functional, kind of real domain.

Dr Anna Volkmer:

The last poster I wanted to mention was something I always think is really…I see this all too often. It’s a poster by somebody…So the poster is called a Case of Amyotrophic Lateral sclerosis so ALS or MND as we call it in the UK, with a frontal temporal dementia manifested as naming and sentence comprehension disorder by [inaudible 00:37:49] from Beijing, China. Essentially what he’s saying in this poster is that normally it’s very rare for MND to be associated with the frontal temporal dementia, but it does happen. And he was saying it happens more often with the behavioural variant, but then presented this example of somebody who, he hasn’t said this, but essentially I would interpret this person having potentially more of a non-fluent variant of [inaudible 00:38:22] because they described this person as having problems with sentence comprehension. And I actually think this is more common than we realize, from my clinical observations. So clinically these are the people who often get sent to me because they’ll have been diagnosed with something a little while ago. So they’ll be diagnosed with the Frontal Temporal dementia often a non-fluent variant and as time goes on they develop more and more [inaudible 00:38:52] symptoms so symptoms that impact on their swallowing and their speech. And then ultimately swallowing is one of the highest risk issues, you know people developing chest infections and often it is really difficult of poorly managed because it’s not as well recognized and there’s very little research in this area. And I’ve had patients who’ve bounced around where their speech therapist say, “Well I don’t know why this is happening because it shouldn’t be happening.” And medical professionals are saying, I don’t know why this is happening either but actually I’m really glad they presented this because I know it’s rare, but it’s really useful to have these case studies and I think what would have been a really nice conclusion is to say how they managed it. But again that intervention is still neat.

Adam Smith:

Thanks, Anna. Interesting. Does anybody have any other points to pick up on Anna’s…I think you definitely went looking for the things that you’re specialist area there. That’s why nobody else can call in because we’re all like Anna is the expert on these things.

Adam Smith:

Picking up on a couple more that I went to. I saw a talk from [inaudible 00:40:03] Gordon from the Banner institute, I went in search of this because this was talking about gene match and how they use gene match to enrol to the generation study which was stopped early.

Adam Smith:

Main takeaways from this for me, no real surprises but they had quite a high uptake of people who were interested as a result of being on the register, but that drops down the longer you’ve been on it. As somebody who’s had a hand in joint dementia research in the UK , knowing that the new registrants are the most active and motivated is no real surprise, but it sounds like gene match has some real potential. And I don’t think we’ve got quite that same system in the UK yet. Certainly not open, [inaudible 00:40:54] Collected is part of protect and prevent and things like this but they’re not as open and as accessible as gene match is. Maybe that’s something to look out for JDR in the UK in the future.

Adam Smith:

Clive Ballard, of course, I hope I’m not stealing your thunder here Leo, are you going to talk about Clive still?

Dr Leonidas Chouliaras:

I was about to talk about that.

Adam Smith:

Then I will skip Clive Ballard’s talk, I don’t want to steal your thunder. We also saw Biogen were back in the auditorium presenting no new data from engage and emerge other than to keep this in the spot light clearly which biogen are keen for us to do and everybody is always very interested in what biogen have got to say, but they were quite up front in saying that there was no new data being presented. That the Emerge trial was the successful one and Engage didn’t reach its end point and that work continues.

Adam Smith:

Anna though, just picking up in your speech in language therapy. There was a talk from somebody in Cambridge that you might want to go look at that tested out the reliability of Google’s auto-translate service in people with dementia were found at a 35-65% accuracy. But again, I didn’t make note of the name.

Dr Anna Volkmer:

That’s all right I’ll look it up. I think that’s quite common that a lot of these automatic speech recognition systems. They find it difficult to cater to the accent but also any speech or language errors so they become less and less accurate.

Adam Smith:

The last point I will make before I come to you Leo was there have been a few presentations thinking about the impact of CoVid-19.

Adam Smith:

So Hugo Gertz gave a presentation that explored that CoVid interrupted many trials and as a result they would be missing lots of data and they were looking at how they could create a modelling platform to essentially, hopefully, reliably fill in the gaps. I’ve got to say, I don’t think I fully understood this so I would recommend if people are interested in how you might fill in the gaps from your studies that were interrupted by CoVid you might want to go watch that talk by Hugo.

Adam Smith:

Also, Cath Mummary [inaudible 00:43:24] introduced a professional interest area talk and I think later this week, through the PIAs over the coming weeks. They’re going to be looking at how trial sites have been affected by CoVid-19, as well.

Adam Smith:

[inaudible 00:43:42] gave an argument that there would need to be more online engagement and more use of online cognitive testing because of the impact of CoVid and peoples’ hesitancy to visit healthcare settings and nervousness around that so this might be the drive that we finally need to move towards more home-based diagnosis rather than clinical settings. Which has been in the background for quite some time. The last piece from CoVid as well was a press release from AAIC that there’s been an announcement from Alzheimer’s Association of a new research study to globally track and understand the long term impact of exposure to the Novel Corona virus on the brain which I know that’s been something getting talked about a little bit at UCL as well so it’ll be interesting to see the details of that study. That press release is online and I’ve tweeted about that as well so I think if you’re interested in the details of that study that they’re just kicking off I would suggest you go find it on social media.

Adam Smith:

Leo. That’s my romp through the headlines that I’ve written down. My notes are all in the bin now. Please tell us what were your highlights from yesterday?

Dr Leonidas Chouliaras:

Wonderful and fascinating talks yesterday. I attended a session called “Re-purposing Drugs Targeting [inaudible 00:45:12] Inflammatory Mechanisms” there were quite a few good talks there.

Dr Leonidas Chouliaras:

Howard Feelit [inaudible 00:45:17] from the ADDF, the drug discovery foundation, presented some studies are doing concenolithic[inaudible 00:45:26] therapy so compounds targeting cellular [inaudible 00:45:30] is an alternative way of trying to Macular Degeneration. There was an excellent talk on microglia cells in Alzheimer’s disease by [inaudible 00:45:40]. He’s from a company in Germany but he gave a very good explanation of the different types of microglia. And that some might be protective, some of them harmful and some others we don’t really know. So it’s not just all microglia, all the same. And what was the take-home message for me from that one was that actually mouse models of Alzheimer’s disease, their microglia is different from microglia in human brains and I think that’s an important message, and for any sort of translation or aspect of that.

Dr Leonidas Chouliaras:

And then it was Clive Ballard from [inaudible 00:46:19] University here in the UK and how they used public level of [inaudible 00:46:24] data to find drug targets, repurpose drug targets for Alzheimer’s disease. They started from, they created the transcriptomic signature of Alzheimer’s disease which is public level of the data. Then they used connectivity maps of different compounds tested in cancer cell lines and they found which ones would be relevant for this transcriptomic signature and then tested those and came up with about 20 compounds that are of interest and now they do more work on that and also [inaudible 00:46:57] and how those have led to some clinical trials so that was interesting.

Dr Leonidas Chouliaras:

And there is ongoing work on the GLP1 analogs and how those might be a good target and some data coming out. So some hope that there are still trials, there are still targets going on.

Dr Leonidas Chouliaras:

And there was a lot of other sessions from dementia with Lee Bodies yesterday. There were sessions from biomarkers looking at EZ, a lady from [inaudible 00:47:30] talking a lot about EZ work and [inaudible 00:47:34] dementia. Gene Leverans from the United States on the DRB [inaudible 00:47:41] studying the US trying to understand more about people with Lewy Body Dementia. As well as some new [inaudible 00:47:50] CSF to measure alpha synuclein so people nowadays use acids that they used for proteins to measure alpha synuclein in the CSF anyway so hopefully we will come up with body markers for Lewy Body Dementia as well soon. As well as using FPG type in the singular [inaudible 00:48:11] island sign on the FDZ to help distinguish Lewy Body Dementia from other neurodegenerative diseases. So, I just thought those were very interesting talks on Lewy Body Dementia as well as some on the neuropsychiatry and behavioural neurology talks again on Lewy Body Dementia. Parit [inaudible 00:48:34] from the Mayo Clinic presented how perhaps males with DLB are different from females with DLB, presenting with slightly different symptoms which again is very interesting.

Dr Leonidas Chouliaras:

Frederick Blang from [inaudible 00:48:47] presenting data on perhaps some new, different autonomic symptoms in DLB that we often overlook in clinical practice around sweating and more [inaudible 00:49:01] and tears associated with 34 hour autonomic dysfunction.

Dr Leonidas Chouliaras:

So I thought that was all very interesting things going on. Some posters as well I visited but the posters were actually from different days. From Cambridge here, James Throw gave a very fascinating talk on demand about the knowledge of the metric system involvement in progressive super or nuclear policy and it was actually very interesting to see the work they do in their group. They see people in their clinics, they scan their brains using seven Tesla MRI scans focusing on the local cecalis[inaudible 00:49:38] and then they also look into the neuropathology when those people donate their brains and actually they have a plan for those studies. They have used them for clinical studies. They are using automoxidive and progressive super or nuclear palsy to investigate some of the symptoms so overall very comprehensive approach targeting the neuro [inaudible 00:49:58] system in progressive or nuclear [inaudible 00:50:00].

Adam Smith:

Fantastic. Thank you, Leo. I have absolutely failed to keep this anything like to time. But it’s so hard because I think there’s so much going on and everyone’s been to so many fascinating talks that everybody wants to share. And I think this hopefully will still be useful. Because of course, particularly for an ISTAART member I think all the talks in the content from the conference is going to be available over the next month so please, I hope the podcast has inspired you to go look something up. Last chance now, put your hand up, nobody else can see this but if you have a talk to plug yourself that you’d like to mention or a poster that you’d like to highlight that you’re presenting.

Adam Smith:

Okay, let’s go to Danielle was first. Danielle…

Danielle Wilson:

Yeah I’m not presenting this year but I hope that we will have a bigger presence next year actually. It was something you said, Adam, about CoVid and it really is kind of two sides of the coin being the loss that everyone suffered, you know the funding, the experiments that have lost data, etc. But I think it’s also the opportunity that it presents to really push forward the use of the remote assessing patients and how we do that and how we do that quickly. And how we assist our older populations to be able to do that quickly so I just wanted to loop back into that because I think it’s really bottom.

Adam Smith:

I agree. Thank you, Danielle.

Adam Smith:

Leo?

Dr Leonidas Chouliaras:

Yeah also, I’m not presenting something this year but I wanted to mention my colleagues from Cambridge who actually are presenting a lot of new data on the prevent dementia study from here in the UK. A lot of the imaging data is now coming in so how different are people who have a family history of dementia compared to people who don’t have that and the [inaudible 00:51:55]…

Adam Smith:

So their names, anybody specifically we should go look for?

Dr Leonidas Chouliaras:

Yeah. Elijah Mak, Andre Lowe, and Maria-Eleni Dounavi and Lee Su as well. If people search on the Abstracts prevent dementia study those will come up. Very interesting data coming out.

Adam Smith:

Fantastic. Thank you, Leo.

Adam Smith:

I also am co-author on a poster that’s being presented today by Professor Yun-Hee Jeon from Sydney University where I have a collaboration with them on use of registers and this looks at comparing the different study recruitment registers from three different places in the US and Australia, and the Netherlands and the UK as well so please do go give that a look.

Adam Smith:

The last study, I didn’t mention, but I saw a great presentation on a trial bus. Which this is a huge trailer, imagine those kind of imaging trailers that we see for breast screening and things that get towed around to various places. They created one of those as a clinical trial sight to particularly take to people where there were huge populations of people, but half an hour from a trial sight. Half an hour really didn’t seem too long, but half an hour was apparently too far. It looks amazing, the first couple of slides they’re sharing it and all and then the last three slides they’re telling you what a nightmare it is between staffing with no one near it and having to travel miles and not being able to keep anything in it and finding places to park it and getting it level and then the costs of moving it from place to place. It sounds horrifically complicated but they were still keen having spent $400,000 just on making it to make sure it paid for itself. So have a look, I thought it was a great idea at first for Scotland and by the end I would talk myself out of it.

Adam Smith:

Thank you very much to our panellists: Leo, Danielle, and Anna. I think the big takeaways from today are: Tech is good. We should embrace technology. Everybody should go watch Nick Fox’s talk which is available online now. There’s hopefully a potentially exciting new drug for use in agitation but only where absolutely necessary and we should all be taking in less salt.

Adam Smith:

Thank you very much everybody again. We’ll be back tomorrow with discussing Day 4. Please remember to like, subscribe and leave a review of the podcast through the website or wherever you get your podcasts. Tomorrow I will be joined by Riona McArdle, Esther Wiskerke and Dr Byron Creese to discuss what I think is the Care Day, which is today of course. We’re all going to be rushing off now and looking at those.

Adam Smith:

Thanks very much everybody!

Dr Anna Volkmer:

Thank you.

Danielle Wilson:

Thank you.

Dr Leonidas Chouliaras:

Thank you.

Adam Smith:

Enjoy the rest of the conference and thanks again!

Voice Over:

Brought to you by DementiaResearcher.nihr.ac.uk in association with Alzheimer’s Research UK and Alzheimer’s society. Supporting early career dementia researchers across the world.

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