Podcast – Alzheimer’s Society Conference 2019 – Day Two

Voice Over:

Welcome to the Dementia Researcher Podcast, brought to you by dementiaresearcher.nihr.ac.uk, a network for early career researchers.

Dr Aoife Kiely:

I’m Dr Aoife Kiely, and today I’m hosting this special podcast recording from day two of the Alzheimer’s Society Conference in London. By now, I’m sure you’ve already listened to our podcast from yesterday, so you will know that we have recordings on both days of the conference as a two part special, sharing all the news from the conference, sharing what we’ve heard, and discussing the talks with a couple of our presenters and delegates.

Dr Aoife Kiely:

Today I’m joined by three fantastic panellists who have all been attending and speaking at the conference. We have Ruby Allie Straighten, Dr. Charlie Arbor, and Dr. Claire Lancaster. Can we start with a quick round the table of introductions and perhaps you can tell us a little bit about yourselves and your work. Ruby, if you’d like to start.

Ruby Ali-Strayton:

So, I’m Ruby. I am a Research Network volunteer. I have been since October of last year. I’m also a carer. My mom was diagnosed with Alzheimer’s nearly four years ago, now. So, that is my interest in being at the conference. And so I came last year off my own back and a research network volunteer basically approached me, so that’s how I got involved with the Research Network. Outside, professionally, I’m actually a journalist but here obviously my main focuses is care and the Research Network.

Dr Aoife Kiely:

Excellent.

Dr Charlie Arbor:

My name’s Charlie Arbor, I work at University College London at the Institute of Neurology. The work that I do is based around STEM cells and understanding the basic biology of Alzheimer’s disease. And this is the first time I’ve been to the Alzheimer’s Society Annual Conference. I was recently awarded some funding from the Alzheimer’s Society, so it’s great to be here and really be more of a part of the society, which is great.

Dr Claire Lancaster:

And I’m Claire Lancaster from the University of Oxford. I’m a psychologist and I work at the Big Data Institute at the moment, which is a new health centre that’s been opened up, and I work on the development of new smartphone based cognitive assessments, which specifically target early detection of Alzheimer’s disease. And this was my first time at the conference as well, but we launched a game-changer study in September, which Alzheimer’s Society have been great in supporting, so it was really nice to meet everybody and talk about it here.

Dr Aoife Kiely:

Excellent, and a special welcome to our first timers at the conference. That’s great. Okay, so let’s get started talking about what you thought of the conference today. Ruby, did you have sessions or speakers that you heard today that particularly interested you?

Ruby Ali-Strayton:

So this morning session was very interesting. There was a speaker called Lenny Shallcross who was from the world Dementia Council. I don’t know if you heard him, but he was a very impassioned speaker and he basically gave us all a global perspective to dementia, and he came up with some interesting statistics as well, such as funding. I know dementia hasn’t had much funding, but that has been improving over the past few years. So he gave an interesting statistic, which was that in the US funding has increased from 500 million to 2.3 billion over the last five years, and I think that will probably be the same here and across the countries, across the world.

Ruby Ali-Strayton:

So he was actually a very, very good speaker. So, that was interesting. I went to a parallel session, which was caring for family groups basically, as well. And that was addressing the issue of family carers. And it’s quite interesting at the conference, my perspective tends to be coming from an Asian background, it’s interesting to hear people from minority speaking and especially from a research perspective as well.

Ruby Ali-Strayton:

I went to some other things and… Sorry, I’m trying to look at my… So for me it’s quite important that, especially in terms of research, that it’s reflective of the UK population. So those are things that interest me. So there was some things I saw today that I thought we’re going in the right direction.

Dr Aoife Kiely:

Awesome.

Dr Charlie Arbor:

Something that really, really stuck with me as well from today, but also yesterday, is some of the statistics that came from that same talk, from the World Dementia Council. So it really struck me that only two thirds of dementia is currently diagnosed. But that’s just talking in developed countries. And then when it goes to the less developed countries, it drops to 10% or 10-15%. So thinking of dementia as a challenge outside of just the UK, the US, I think is really important too.

Dr Aoife Kiely:

Yeah. And I think that’s such an important issue that sometimes the statistics lose that when they say that 5 million people in the world have dementia, whatever figures come out, because we tend to forget that there’s differences in cultural and medical practices in different countries. So diagnosis rates are lower and different, and then if you’re not involving people from different communities in your research, you’re getting such a biased image as well and something that might only help one group of people and not everyone.

Ruby Ali-Strayton:

I think that’s it really. I think the danger is that basically you will end up having models and everything based on just this really small section of the population. So to me it’s really important and fundamental that research and researchers make sure, as far as they possibly can, to be reflective of the UK population because obviously that’s the population that will be served in the future. And I know in some parts it’s difficult because I live in Norfolk, which are 95% white, but other areas that’s not the case. So it’s interesting.

Ruby Ali-Strayton:

I imagine it’s a bit of a challenge, isn’t it, for researchers, especially if they live in places like Norfolk. I just wonder how you address it, that challenge.

Dr Aoife Kiely:

Claire, your research is really interesting from that point of view, thinking about game-changer. Would you like to talk a bit about that?

Dr Claire Lancaster:

So game-changer is what we call our citizen science project in that we’ve really reached out to the UK population to say please take part in this study for a few minutes a day every day for a month. And one of the reasons we went forward with gamechanger is that we wanted to get a more representative population, because we’d collected data from the Prevent Dementia Research Program and [crosstalk 00:07:41] well, you might have taken part in the smartphone aspect of the study, but we just noticed we were getting a very certain demographic taking part and you need to be able to get an understanding of how people vary just at a population level, so you might see age differences, or socio-demographic differences, or just bad day differences.

Dr Aoife Kiely:

Thinking again about the events of today, Charlie, I know you gave an excellent talk earlier today. Your face is just like, what? About your STEM cell research for Alzheimer’s disease. This is obviously a really complex topic that you communicated really well and you got some great questions from the audience and interaction after it. Would you have any tips for other biomedical researchers who are working on such complex areas on how to communicate that to a more lay audience?

Dr Charlie Arbor:

I think for me the first thing to do is to get the slides just right, because you don’t want to put too much information into your slides and you don’t want too many messages over the course of, today it was a 12 minute talk, so you don’t want to try and get all of your research across. You need to get the main messages that you think are the most important from your one or two projects. So not having busy slides, having one or two main points that you want to get across.

Dr Charlie Arbor:

But one thing that I found difficult and had to work out, was the vocabulary, the words that you use. And I think something that has been a topic of the conferences, some of the words you use might be quite distressing to patients. So they’re not suffers, they’re people living with dementia. And I think that’s an important thing to keep in mind when you’re preparing for the talk. And mutations might not be the most sensitive word to use, gene changes or something. So just practising the words that you’re using.

Dr Charlie Arbor:

And I was lucky enough to have a couple of run-throughs with a patient support group quite recently, as well, so I think practising to people that aren’t in science, getting your head around what you need to say in a simple way, and I think just practice. I think that’s it.

Dr Aoife Kiely:

That’s excellent. Because I think another tip for researchers, particularly if you’re communicating to a lay audience, is there are the DEEP guidelines. So that’s D-E-E-P. If you just Google that, they are a group of people affected by dementia who’ve put together guidelines on which words they find appropriate and not, because we did have, unfortunately, an occasion this morning while Health Secretary Matt Hancock, who was speaking, he repeatedly used the term suffer and a lady living with dementia in the audience was quite upset by that. And she called him out on it, which I thought it was excellent. And he took the point and after the talk he did go up to her and apologise for that.

Dr Aoife Kiely:

But it’s just an example of how people, maybe, outside the community, just make assumptions and use words without thinking about it, so it is an important area. So thinking about your STEM cells, I think a lot of our audience found that really exciting and something that they mightn’t have heard of before. What’s next for your research?

Dr Charlie Arbor:

So I’ve recently been awarded funding from the Alzheimer’s Society and some of the work I was talking about today was how different gene changes and mutations in the genes associated with familial Alzheimer’s disease can have different effects on how amyloid beta is produced and how different fragments and species of amyloid can be produced going forward.

Dr Charlie Arbor:

I’m really excited to learn some new techniques to make, not just the neurons, the main brain cells, but also some of the support cells and the immune cells that are found in the brain and really understand, coming from a cell biology background, how different cell types can interact at a whole cell level, which is quite an important level. I think there’s lots that’s been done very biochemically with individual proteins. There’s lots of MRI and whole brain things, but I think we really need to understand how the three main brain cell types interact and I’m quite excited to get stuck into that project now.

Dr Aoife Kiely:

Excellent. With Alzheimer’s Society funding.

Dr Charlie Arbor:

Absolutely.

Dr Aoife Kiely:

Good on us. So Claire, you were talking a minute ago about your game-changer research and using smartphones to transform how we go about early detection of Alzheimer’s disease. So in yesterday’s session we, at the conference, we had a lot of talk about care and technology and a lot more about the potential uses for technology across the board in relation to dementia. What do you see as the future for research undertaken in this way?

Dr Claire Lancaster:

That’s a really interesting question. So, I think the power of technology to really help with care is just brilliant because everyday technologies have such power to interact with people. And so one of the things we’re thinking about is what we can do to help the caregiver and what we can do to help the individual living with dementia and thinking about how we can cross the bridge of connecting technology.

Dr Claire Lancaster:

The other thing that I think is really progressing in terms of using technology for dementia is passive monitoring. So I’m involved in the Radar-AD Project, which is an innovative medicines initiative. And we’re looking at whether we can use activity that people don’t necessarily contribute, but that we can monitor, to help get an idea of people’s symptoms progressing.

Dr Claire Lancaster:

So for example, using things like GPS and physical activity and how often you turn on your phone to contact somebody as a marker of social interaction. So I think there’s some really cool work to be done.

Dr Aoife Kiely:

That’s really interesting.

Ruby Ali-Strayton:

It was interesting because yesterday there was somebody in the morning gave a talk about tech and I think he said, it only costs 100 quid, whatever. And it was interesting because I was speaking to some researchers last night and they were saying for the people that they know and have been involved with, that is actually unaffordable. So it brings up an interesting issue in terms of affordability. And tech obviously is brilliant and there’s so much you can do with it and there’s so much that you will be able to do with it, but also there’s that again, how much of the population will be able to afford that. I’m not suggesting that you shouldn’t go down that route, but it does bring up that issue, doesn’t it, of affordability.

Dr Aoife Kiely:

Yeah. It’s, it’s definitely a factor in introducing new technologies. But I think you see all levels of different tech that’s coming out. I was talking to one group, I don’t know if you saw them upstairs with that smart table that projects different images that people with dementia can interact with and it’s a reminiscence tool and an engagement tool and so on, and I was blown away. I thought it was amazing and I was like. “How much is this?” And he said, “The cheapest would be about 5,000.” It’s such a wonderful thing. Maybe for a care home, but I think that’s something that a lot of on the other end of the scale, like tech that we’re seeing is stuff that you really can weave into the home, like the How Do I? app, it’s just an app on your phone and stickers on your equipment and so on. So I think there is a move to take into account those issues. But it’s very important.

Dr Aoife Kiely:

So Ruby, just to ask you a little bit more about your role with the Research Network. I know you officially only got started October and started this year. Can you tell us a bit more about what the role involves and how you interact with grant applications and dissemination opportunities, and so on?

Ruby Ali-Strayton:

So the role essentially is appraising grants. So the grants that you would apply to the Alzheimer’s Society for, I look at. So be nice to me. But it’s appraising the grants and I think looking at it from the perspective, how useful the practical application of the research. Because ultimately if you go down the path of research and it doesn’t have a practical application, or a proper application, in the end it, it’s redundant. So that’s the idea of someone like me, who is a carer, is able to look at them.

Ruby Ali-Strayton:

I don’t look at the science of it, I just look at how useful it will be to me and everybody, basically, in my position. So that, it’s mainly what I do. The Research Network has about, I think over 300 volunteers.

Dr Aoife Kiely:

317.

Ruby Ali-Strayton:

317, thank you very much. And there are a variety of people. So there are carers, there are people living with dementia, former carers, so they’re all on different journeys and different paths as well. So it’s different levels of input. Some people are monitors, so they get more involved with the researchers and the research. But interestingly, I went to something, I think earlier today it was, where someone was explaining one of sessions, how they, in as part of their study, they had people involved from the Research Network from the very start.

Ruby Ali-Strayton:

So they actually really, really influenced the research as it went along. And they guided the research team as they went along, which was absolutely brilliant. I’m not that aware of how research tends to work, but I would have thought that really is the way forward, especially in this arena of obviously dementia and Alzheimer’s research. I don’t know what you guys think of that.

Dr Claire Lancaster:

I don’t have any experience with the research network directly, but we’ve had public involvement with the app and with the game-changer study in these kind of iterative rounds, and I think it’s been really important for helping us get so many people involved and stay involved.

Dr Charlie Arbor:

I think it’s really quite unique to have the Research Network volunteers and the input from people living with dementia and people caring for people with dementia. And it’s really important to have that sense check, I think, to someone working in basic biology. If someone says, “Yeah, great, but so what? And what does this mean for the people living with dementia and things?” I think it’s a really valuable dialogue to have and I think it’s so important. I think it’s 20 years being celebrated this year for the Research Network volunteer.

Ruby Ali-Strayton:

Yeah, that’d right.

Dr Charlie Arbor:

[inaudible 00:19:49] and as just personal experience, the volunteers even offer feedback before you submit your application. So I submitted my application, I got feedback and personal anecdotes. For example, I was looking at brain immunity and someone said, “My wife was suffering with the disease and she was on anti-inflammatory drugs for her rheumatoid arthritis, or something like that, and suddenly her dementia and her symptoms worsened. And I think it’s really important to look at immunity in the brain.” And that really helped sculpt my proposal and things, which was great.

Dr Aoife Kiely:

That’s really good. And also for the listener, I would like to point out this, after Charlie said suffering, his face absolutely crumpled and he was really angry with himself after him just making the excellent point earlier. So just to flag that.

Dr Charlie Arbor:

I blame the microphone [crosstalk 00:20:44].

Dr Aoife Kiely:

Yeah. Exactly. And just looking back on today, or even the whole conference, is there anything else that you’d like to mention that you particularly liked or found interesting?

Ruby Ali-Strayton:

For me, the interesting bit for the conference is speaking to other people about their own experiences, not just the experience of living with the dementia and the personal stories, but also the researchers as well. So it’s been good for me, because last night we had the Research Network dinner and it was nice to see Research Network volunteers and researchers all sitting with each other. So I thought that it’s a good way to bridge those two things. So for me that’s, although, obviously the parallel sessions and listening to speakers coming in is always going to be interesting, for me it’s those personal stories I think I take away with me.

Dr Charlie Arbor:

I think meeting Richard, from Richard and Judy yesterday, was one of those huge highlights for me, and being basically [crosstalk 00:21:57] at the overall the cricket round, as a big cricket fan, it’s been a fantastic venue. [crosstalk 00:22:02]. I’ll be back here for the World Cup next week, which I’m quite excited about.

Dr Charlie Arbor:

But another highlight, I went to a session yesterday on women with dementia and it was a fantastic session. I got picked on slightly as one of only three men in the audience.

Dr Aoife Kiely:

That’s fair.

Dr Charlie Arbor:

It’s fascinating. Two thirds of people living with dementia are women, but also two thirds of carers are women, and these are things that aren’t considered at all. So I think there’s a lot of work to be done there. So I think that was a fantastic session too.

Ruby Ali-Strayton:

Could I just say in response to that there were about, every session, I think, virtually I wanted to go to, so there were a lot of good sessions. So for me, that was one that I really wanted to go to.

Dr Aoife Kiely:

It’s tough to decide [crosstalk 00:22:49] so many parallels.

Ruby Ali-Strayton:

It is, actually.

Dr Claire Lancaster:

One session I really enjoyed was this morning, the building inclusive societies for people living with dementia. I thought that was just wonderful and I came away with so many things I wanted to get involved with and just simple actions you can take to really help people in the community. I think that was a really nice session because I normally go to a lot more biomedical, psychology conferences. So actually having take home actions I think is-

Dr Aoife Kiely:

And what actions do you think you pick up from it?

Dr Claire Lancaster:

So I think there was the Joe Cox Loneliness Commission and I can’t remember what the weekend was called, get together, or-

Ruby Ali-Strayton:

Yeah, it’s her get together on June the 21st through the 23rd, which is her birthday. I think that’s [crosstalk 00:23:41].

Dr Claire Lancaster:

I thought that sounded a really nice idea.

Dr Aoife Kiely:

It’s great to come away from those sessions with concrete actions that you can do or changes in your perception. Because often we have researchers that say to us before they got involved in Alzheimer’s Society, they might never have actually met anyone living with or affected by dementia. So being at events like this can often change their own perception, even if they’ve been working in the field for years and years. So yeah, that’s really great to hear, guys.

Ruby Ali-Strayton:

For you, you obviously, your academics, and go to a lot of conferences, so this must seem quite unusual because there are so many people who, basically non-academics living with dementia.

Dr Charlie Arbor:

I think it’s totally unique and really refreshing to have the policymakers, the patients, the carers, everyone in the same room. And I think it’s a completely different perspective and being the first time that I’ve come to it, it’s been brilliant and really eye opening. So, it’s rewarding, to say the least.

Dr Claire Lancaster:

Yeah, agreed. It’s like a completely different take and one that I don’t get exposed to very often. So I’ve really enjoyed it.

Dr Aoife Kiely:

So I think we’re going to be able to put your Twitter handles in the contact notes for the podcast. So, if any listeners would like to get in touch with our panellists, they can, and follow up on any of the conversations that we’ve had today. But right now, it’s time to end today’s podcast recording and I’d like very much to thank our wonderful panellists, Ruby, Charlie, and Claire.

Dr Aoife Kiely:

If you’d like to see more reflections of the conference, check out the hashtag #ASAC19. The team will be writing up blogs for our supporters and followers that you may find interesting too. We have profiles on all of today’s panellists on our website, including, as I mentioned, details of their Twitter accounts, and all that remains now is for me to remind you to subscribe, rate, and review the podcast through SoundCloud and iTunes, or wherever you get your podcasts. And please tell your friends and colleagues about the podcast. And don’t forget to complete our survey to be in with the chance of winning those headphones. Details are on our website and Twitter feeds. Thank you.

Voice Over:

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