Podcast – Alzheimer Europe Conference Highlights 2024 – Part One

Voice Over:

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

Dr Megan Rose Readman:

Hello and welcome to the Dementia Researcher podcast. In this show, we're going to bring you all the news and highlights from the first 24 hours at the Alzheimer's Europe Conference. I am Dr. Megan Rose Readman, and I'm an NIHR and Alzheimer's Society-funded DEM-COMM fellow at the University of Liverpool. It's been a pleasure to guest-host the first of our two-show special here at the Alzheimer's Europe Conference in beautiful Geneva. This year's conference theme is new Horizons and Innovations. So let me introduce our brilliant guests and they can tell us if they've nailed the theme. Joining me today is Dr. Fiona Carragher from the Alzheimer's Society, Dr. Andy Northcott from the University of West London, and Dr. Sébastien Libert, our brilliant conference host Alzheimer's Europe. Why don't you all introduce yourselves to us and tell us why this conference has made it into your super busy schedules.

Dr Andy Northcott:

So, it's always in my schedule. This is the highlight of my research here. It's like the getaway and figuring out where we're going and kind of which European city I get to go to next. But it feels a bit like a big school reunion in a way. You get to see all the people that you've not seen for a year and talk about where your research is going and feel jealous about everyone's new funding and things like that. So yeah, wouldn't miss it.

Dr Fiona Carragher:

So, Megan, I'm the Chief Policy research Officer at Alzheimer's Society. So, my role covers all the world of research and innovation and all the world of policy and influencing, and this is one of the best conferences that bring that all together. So, it's fantastic, like you say, to meet colleagues, many of which we've funded, like you, Megan, but others across Europe to meet our sister organisations and to see how we can really collaborate, learn, and share to see how we can move things forward.

Dr Sébastien Libert:

So, I'm Sébastien and I'm public involvement officer for Alzheimer Europe and it's a pleasure to be here also to support my colleagues who have been organising this conference and also participate in the work that has been done here with the Europeans working here and I'm always looking forward to it. I used to join the conference as a PhD student a few years back and now I'm joining here as a staff working with Alzheimer Europe. So, it's a great experience.

Dr Megan Rose Readman:

So now we know why you're all here and we're very glad to be here. We wondered whether you could share some of your highlights from the first 24 hours of the conference. So, whoever wants to kick off.

Dr Andy Northcott:

Do you mind if I go first?

Dr Sébastien Libert:

All good [inaudible 00:02:46].

Dr Andy Northcott:

I think my highlight so far has been that it feels like things are moving forward. You sometimes come and it feels that it's repetition from the year before or things are the same, but I think particularly the panels on technology, I always try to go to, even though it has nothing to do with my research, I just find it really interesting and there's been a big leap from, there was a lot of years of technology was about surveillance and monitoring and watching people living with dementia. Whereas this year there's loads of stuff about using AI to improve diagnostics and improve treatment and ways of having way more person-centred uses of technology for people living with dementia. So, it's less surveillance and invasive technologies and more how to improve quality of life. So, it's been really positive to see that.

Dr Megan Rose Readman:

Yeah, for sure. Is there one specific sort of innovation that springs to mind that you think is really potentially promising?

Dr Andy Northcott:

I don't want to leave anyone out because they're all doing... So the one yesterday afternoon, it was really sort of multipronged in the different approaches and there was a couple of papers that went totally over my head in the way that they wanted to start looking at diagnostic tools and using AI to treat amyloid and I didn't understand it but it sounded fascinating. And to actually be there where people are talking about real improvements and step forwards was great. And then there was some really fun ones where people have been able to move on, have you all seen those little robot seals they used to have and robot companions? And they used to be quite fun to look at but a bit basic. And now they've got these AI-powered robots that aren't really designed for surveillance, so to monitor anyone or for checking still in the house, they were just fun.

They were tools to improve quality of life and for people to play with and they had machine learning to work on that. So, I can't remember the names of any of the presenters, so if they're watching, I apologise. But their work was great and the only person whose name I do remember is Chris Fox because I know him. But he did a really good job of summarising it all at the end and putting it into sort of the context of the NHS in the UK and how it could work and how people with dementia and carers are actually more open to AI tools and technology than they used to be. So yeah, it was a really good session.

Dr Megan Rose Readman:

Yeah, definitely. It sounds really interesting, and I know the Alzheimer's Society is currently, they've got quite a lot of new technologies that they're investing in, so it's definitely the way forward. So, it's really exciting to see. So, I was wondering, Fiona, if you had any thoughts about technologies? Is it something on the Alzheimer's Society radar?

Dr Fiona Carragher:

Yeah. When the Alzheimer's Society is thinking about how we want to galvanise and work with others to end the devastation caused by dementia, we're working on three big, broad fronts. The first is around prevention and risk reduction, so you know that we funded the Lancet Commission, we know there's a lot of work going on in that area. The second is about better diagnosis, earlier, accurate, and also breakthrough treatments, that whole kind of piece around that real hope for the future. But the third area is important now and we believe will remain important all the way through, is around high-quality personalised care and there's a huge opportunity for technology to enable that to happen and that's one of the elements that we're focusing on as an organisation. So tomorrow I will be hosting a session about the Longitude Prize, which is a global technology prize worth 4.4 million pounds that we've brought other funders to the table like the government through Innovate UK where we've been looking for amazing entrepreneurs and innovators and academic teams across the world to come together and start to develop new technologies, particularly using AI and machine learning to enable people to live independently for as long as possible in their own home. That is the goal that so many have.

So, we launched the prize about 18 months ago. We had nearly 180 teams from 28 different countries working on it. We then funded 24 semi-finalists who each got 80,000 and now there will be five finalists who each get 300,000 pounds and a year to scale up, to prototype, to build the evidence for impact of their technologies. And then in February 2026, and I can't wait for this, we will get a one-million-pound prize for them. So, it's a really exciting, not just about that technology, but the fact that we had 180 teams across the world working on it. That was the exciting bit.

Dr Megan Rose Readman:

Do you think hopefully we might be able to hear from them at the next Alzheimer's Europe?

Dr Fiona Carragher:

So, we're going to hear tomorrow from the five finalists, and wouldn't it be wonderful if in the 2026 event that we will hear from the finalists, would be fantastic.

Dr Megan Rose Readman:

Exactly.

Dr Fiona Carragher:

And this approach of using challenge prizes is quite a different approach for funding. It is quite different from a traditional research grant that we give. That's been what we've done for 30 odd years at Alzheimer's Society. But this is very much about innovation and really kind of trying to catalyse entrepreneurs and innovators working in that space.

Dr Megan Rose Readman:

Yeah, definitely. And obviously, Sébastien, the theme of the conference is new horizons in innovation, so obviously technology innovations. Was that something really important to you or do you have any sort of reflections on the role of technology advancements?

Dr Sébastien Libert:

Yeah, and I think what's interesting with the Alzheimer's Euro Conference that we heard in the past day or well is that you can see that you have an emphasis on innovation and new technologies, how they can help. You're also keeping parallel a focus on what people want, people with dementia or we have the European Carers Working Group now. So, we have different perspective that are really down to earth relating to what people confront in their daily life in term of challenges and really having those dialoguing with the technologies and innovation and try to figure out when you can really be helpful with those technologies. I think that's what's interesting with this kind of forum of discussion.

Dr Fiona Carragher:

And I think that's interesting about the work that we've done with the Longitude Prize because unlike the technologies that you've talked about that are almost like left in a drawer because they're not things that have been co-created or co-designed with people with dementia. That was the thing that we put at the heart of the programme, so people like Trevor Solomon who are on your European Working Group are on the lived experience panel making decisions on which technologies we're going to invest in and also helping to really be that kind of pull factor and say, "These are the things that we need, these are the things that you need to focus on."

Dr Megan Rose Readman:

I think thinking wider away from technology, that's one thing I've taken away so far from this conference is you really try to make sure the voice of people living with dementia and people caring for people living with dementia, it's everywhere. The start, we had the opening and straight away it was all eyes on people living with dementia and people caring. It set the tone, really got everyone thinking about, we can have all these innovations, but what actually matters to the people? So, Fiona, what would you say your highlight is from the conference so far?

Dr Fiona Carragher:

So, I think a link to that actually are two things. The first is because I came in late last night, we had a big Alzheimer's Society conference yesterday. Walking through the door this morning and so many of our lived experience ambassadors and people who work with Alzheimer's Society are here because they work also with Alzheimer's Europe, so Chris and Jayne Roberts, Trevor Solomon, it's fabulous to see them here. That was my first reflection is you do feel like you're coming to a family of people that are really all on the same track to try and make things so much better in the future. And then my second highlight so far has been in the session which was around advancing treatments and breakthroughs and that was very much around this tipping point that we're at in 2024 with the first ever drugs that have been shown to slow progression of Alzheimer's disease and heard brilliantly from a number of speakers including Cath Mummery from Queen's Square in London talking about, "Scientifically this is fantastic, we can all feel and see this step forward, but actually that with my policy hat on, I'm going, 'This is really tricky now. How do we get this? How do we get the health system ready? How do we think about the new drugs as a catalyst for whole system change?'" Which is significant.

But within that session, going back to your point about the voice of the lived experience being so strong, there was an amazing speech by a man from Norway called Jan [inaudible 00:11:51] who had been diagnosed with early onset Alzheimer's at the age of 45. He had a family of five children. There was so much to connect with the audience on and provided real hope for us, but equally then sang to the whole audience, You'll Never Walk Alone because he's a massive Liverpool fan. I don't think there was anybody in the audience that wasn't touched by that. But the piece that struck me was that he lives in Norway, which is one of the most well-funded, if not the well-funded health systems in the world, with a population of 5 million, a very wealthy country. And yet he was describing having got a diagnosis and literally being left to cope alone. So I found that really striking and I think that's why conferences like this are so important because how can we then, because if Norway with the economy that they have are really struggling, what does that mean for other economies across Europe but equally other economies across the world and how do we properly make dementia the priority it needs to be?

Dr Megan Rose Readman:

Yeah, definitely in the opening yesterday we did a little [inaudible 00:13:10] where we all said where we were from and the representation across Europe is absolutely fantastic and definitely something that, like you're saying, everybody can bring into the conversation from their unique geographical perspectives, which definitely is a benefit consider. What about you Sébastien? What would you say is your highlight so far?

Dr Sébastien Libert:

I'm reflecting on your words about the importance of policy and also raising awareness. I think that's really what struck me as well is you need to make dementia a priority, but how to convince policymakers to do so. We had a talk with the WHO this morning, sorry, the global Dementia strategy that was presented and I think that's really showing how we need to work with policymakers on those matters. Also, we can convince people to that this is a win-win situation. I'm thinking about the presentation from last evening was about dementia-friendly environments and the like. And each time I'm seeing that I'm thinking, "Okay, that's also relevant to other people across society and therefore we can really convince that this is a win-win situation for everyone." So universal design and the like. And I think that's really what I want to emphasise as well, and I've found interesting in the presentation.

Dr Megan Rose Readman:

So, we've all had really busy full-packed conferences so far. So, what are you going to go to next?

Dr Andy Northcott:

I'm not sure what I'm going to go to next. I've had that thing of everything I've wanted to go to has clashed and moved around. So I know there was meant to be a fantastic session this morning on inclusion for the LGBTQ community and it coincided with the session on minority communities that I was at and it was desperately trying to be in two places at once, but I had that thing where I got sat in the middle and then there was loads of people so it's like, I'm in the panel for the session now. So yeah, I'm going to hopefully try and find some more things on inclusion and equality for this afternoon. That's my plan.

Dr Fiona Carragher:

That's actually where I'm heading. So, there's a really good session now on inequalities. I'm really interested in that; we're doing a lot of work at Alzheimer's Society across all of our impact activities. So not just our research and policy but also in our services. And we are out at the moment or just starting through the grants process of our Centre of Excellence for Inequalities, which we hope to announce in the new year. So that's a 2-million-pound centre that we'll be establishing. So that's where I'm kind of off to and like you, had a lot of great stuff, you have FOMO, like a lot of stuff on social media about the amazing sessions. So yeah, too much going on unfortunately here. [inaudible 00:15:58] you are doing such a job.

Dr Sébastien Libert:

That's good to hear. So, I'm planning to go to presentations that are on community support, psychosocial intervention. I'm really looking forward to those the next day.

Dr Megan Rose Readman:

Fantastic. So, would anyone else like to share another highlight?

Dr Andy Northcott:

Do you mind if I go again?

Dr Megan Rose Readman:

Yeah.

Dr Andy Northcott:

So a highlight for me has been something I wasn't really expecting to see at the conference, so it's a bit of self-serving promotion, but I'm part of a team at the Geller Institute of Aiding in Memory and we've just won a big NIHR grant looking at access to services for the UK Caribbean and African communities and reasons that they may not be accessing services, how to better shape services for cultural specific needs. And there's been a sort of running theme through the conference where each panel I've been to, it's been something that's come up and it's brilliant because it has been and still is to an extent, quite an under-researched area. And then yes, unfortunately it's mostly been in the quick presentations where it's been five minutes and you wanted to go, "Keep going, keep going, I really want to hear more on this."

But there's been several steps on that and it feels like, again, we're talking about the developments with the tech and with everything else that everything feels that it's sort of a tipping point of things are, they're not improving yet, but we've identified where the improvements can be and we're getting there and it's been really good to see, a really nice surprise, because it was not something I was expecting until I saw the programme book on yesterday afternoon and sat there going, "What should I go...? Oh, I have to go to that, I have to go at that."

Dr Megan Rose Readman:

Yeah, definitely. There's been a lot of times where I've been sat like, "Oh, there's five sessions that I want to go to. Where do you go?" Any extra highlights, Fiona?

Dr Fiona Carragher:

I think two things that come together. The first is the power of stories. So, in the session I went to this morning, the story of Carol Jennings was told, and for those who don't know the story of Carol Jennings, she was this extraordinary woman who, working with Alzheimer's Society, she'd been kind of a volunteer for us. She was really tenacious and recognised that many people in her family, many of her uncles and her father had early onset Alzheimer's like in their forties and fifties. So, she wrote to Dr. John Hardy, this is going back early nineties before he became a professor and Sir John Hardy and said, "You have to look at my family because there's definitely something in my family." And through her absolute tenacity, they started to investigate this very complex family story. But actually, from there they found the gene that has underpinned the amyloid hypothesis and Carol from there on spent her entire life alongside her wonderful husband Stuart being enormous advocates for the power of patient participation and really being part of public involvement in research.

Unfortunately, the breakthroughs that have come from that original research, which essentially led to Lecanemab and Donanemab, that's what's underpinned it, came too late for Carol. Carol passed away earlier this year and both Carol and Stuart are, and Stuart remains a Vice President of Alzheimer's Society, which is I suppose our highest honour that we have for people that have just done extraordinary things. And Carol Jennings with Stuart's permission, we've named one of our, our most senior fellowship, the Carol Jennings Fellowship, and the reason the power of stories and links to my second point, which is about early career researchers. So, the reason I couldn't come yesterday was that we had our big Alzheimer's staff conference, staff, and volunteers conference we're at the [inaudible 00:19:55] hundreds and hundreds of staff and volunteers.

And the first recipient of the Carol Jennings Fellowship gave a beautiful, powerful, hopeful keynote speech. So, this is Dr. Johanna Jackson from Imperial. And that's really struck me because a lot of what I'm seeing here are amazing early career researchers, people that we fund, like you, Megan for the NIHR DEM-COMM, there's many others there that we feel that our role is to make you feel really part of the family, feel as connected as Carol to people like Carol so that you feel supported to spend your career dedicated into this cause. So those are the two things, the power of the story, the power of the individual, someone like Carol, but actually what enormous hope we've got from these really extraordinary PhD students, young people here as well.

Dr Megan Rose Readman:

Yeah, definitely. And I think for me personally, it was my first Alzheimer's Europe conference, I've come in and it's such a friendly environment, everyone's been so lovely. And it does feel like you are walking into this extended family having never been before, which is fantastic and massive. [inaudible 00:21:08] to the organisation, is there any extra highlights that you'll take away?

Dr Sébastien Libert:

There was something about the importance of small things, small changes in the life of people with dementia that I think could really make a difference. I think there was a presentation by Trevor Solomon, we were speaking about him earlier, very touching story about how his wife got diagnosed with dementia and then Sainsbury's local head or director helped her to stay in her job for as long as possible and that this adaptation that was made for her really helped herself in feeling involved, but also husband as well who could really support more the different challenges of caring and the daily life of this really played a positive role for that family. And I think that's really a touching story that I'm keeping with me from the conference.

Dr Megan Rose Readman:

Does anybody else have anything?

Dr Andy Northcott:

Yeah, I'd just add to what you were saying about the new technologies are great, but it's not just the technology of having the better diagnostics, the new drugs, it's having the policy change, we need the integrated care, especially in the UK it's so fractured that it's not good enough just to diagnose someone and then the treatments might mean they live longer independently, but without the support, without the health and social care setups. And then to think that's the UK and we're still just about a relatively wealthy country, 15 years of trying not to be, but we're still just about there, but we're looking at people from across Europe and not every European country is equal and globally. So, when these drugs do come out, these new diagnostic technologies, how are they going to be shared? Norway's very wealthy, so they might not have a problem, but it might be different in Southern Europe or other parts of the world. And it's thinking along those lines of how we equally stop, I think you called it the devastation of dementia and it's the global issue of how we access that.

Dr Fiona Carragher:

Cath Mummery talked about that in that session as well, saying that particularly when it thinks about access to clinical trials, we know that for so very long it isn't equal, certainly in the UK and certainly across Europe in terms of who is actually becoming part of those clinical trials. And that's really important when you think about understanding the results and understanding the difference between different populations as well. And that's one of the reasons that we've invested in the first ever dementia research nurse’s programme. We have an amazing dementia research nurse at Alzheimer's Society called Laura [inaudible 00:23:46] who works alongside Cath Mummery and we're going to have a research nurse based in each of the new clinical trials settings with an absolute focus on getting more people from diverse backgrounds involved in trials, because that's exactly what's going to be needed for the future.

Dr Megan Rose Readman:

So, if you were to go home now, what do you think your take home would be from the conference?

Dr Andy Northcott:

I'm going home with a smile on my face this time, which doesn't always happen. Sometimes I feel like we're just treading water and sometimes there's the innovations, but I think the tech thing we can all... There's a step in directions which for so long we didn't have. So, it just feels miraculous that we have that on the horizon and that things can start developing. And then there's just been, I've really liked the focus of a lot of the papers. So, I talked about the tech panel and the other ones I've gone to over the last 24 hours have been around minority communities and there's been some really insightful things moving away from that kind of broad ethnic minority, we called it BAME in the UK. I like focusing on the issues on really specific communities and what could be missing. I'm going to make sure I get someone's name right, I'm sorry to look at my phone.

There was a PhD student yesterday, so I want to make sure she gets a mention in it. [inaudible 00:25:16] from Rotterdam and she did this really good paper on first generation Moroccan immigrants in the Netherlands and how things that could be overlooked to them. And it was things like how because of lower educational levels, just the tests used in memory clinics and things weren't suitable and then things get overlooked and people don't get access to services until that point of crisis. It was really interesting just to see people are looking at these sort of hyper-specific communities and the issues they face, and it just feels like everyone's just doing some really good research and things are moving in the right directions. So, I'll be on my plane tomorrow evening with a smile on my face.

Dr Megan Rose Readman:

[inaudible 00:25:56] Fiona?

Dr Fiona Carragher:

I think I'm bringing home a real tangible hope actually, which with my scientist hat on, I have felt has been coming for a number of years in the kind of breakthrough diagnosis and treatment’s part. And we heard a lot, we heard the sessions this morning about that, but actually also hope for really high-quality personalised care now. One of the really interesting sessions I went to this morning was with the team that's at the University of Hertfordshire funded by NIHR, which is our kind of health and care research in the UK and EPSRC, which is the Engineering and Physical Science Research Council. So, this real interdisciplinary thinking about taking systems engineering, systems thinking, mathematical modelling, and aligning that to really high-quality care research so that we can properly understand how the system, the health and care system needs to support individuals and their loved ones. That was amazing. Gosh, I was thinking that is absolutely fantastic. We need to do more of that kind of real... Innovation happens at the kind of boundaries and contacts at the edges that you have. And that's why a conference like this is so good because you will have a mix of neurologists and psychiatrists working with those that are more in the health and care research applied space as well. And how you bring that together I think provides real hope.

Dr Andy Northcott:

Mel did an incredible job of getting all that information into 12 minutes because she had so much to cover.

Dr Fiona Carragher:

Oh, it was extraordinary. And it was really interesting because I'd been involved with the original work in 2017, which is where the Royal College of Engineering worked with the Royal College of Positions to say, "Come on, there's something about bringing our two ways of thinking together." So having that real systems engineering systems thinking approach. Just to see that then translate into something properly tangible for a real problem we've got in the health system was fantastic.

Dr Megan Rose Readman:

Yeah. [inaudible 00:28:00] what about you?

Dr Sébastien Libert:

Yeah, I think what I'm remembering the most and I'll bring home is the fact that public involvement and we were speaking about minority and group and so forth, and it's more of a process rather than an end in itself. We cannot really say we are satisfied enough by the public involvement we do. We constantly need to look for new ways to include the public and also that people with dementia get a voice in research projects and the like. And I think that's nice to see also that there's the Dementia Carers Working Group that's been new. There's already been the European Working Group of People with Dementia being part of the discussions. And I think that continuing this dialogue with the conferences and the like are something important and I'll keep this for my way home.

Dr Megan Rose Readman:

Yeah, definitely. And one thing that I'd just like to reflect on what you were saying, you wanted to give a specific mention to a PhD student, and I don't know if you agree, but I feel like there's a really vibrant early career, younger research community here today-

Dr Fiona Carragher:

Oh yeah, absolutely.

Dr Megan Rose Readman:

And it's been fantastic to go to the sessions and see PhD students being given plenary spots all throughout. And it's just been great to see that. Sort of, it gives you hope for the future of research as well.

Dr Andy Northcott:

And cued us to them because some of the rooms here are huge. It must be so intimidating to stand in a big plenary room- [inaudible 00:29:23]

Dr Megan Rose Readman:

I'm slightly nervous for my speech tomorrow. I'm not going to lie.

Dr Andy Northcott:

I'm sorry I didn't mean to... You'll be fine.

Dr Megan Rose Readman:

So I'm afraid, I think that might be all we have time for today, but if you can't get enough of this topic, please do go through the Dementia Researcher website where you can find a full transcript and all our biographies and you can also go and see part two of this show, which is hosted by my colleague, Dr. Megan Polden to hear about the rest of this fantastic event. I would like to massively thank you, all our fantastic guests. Thank you for taking the time to come and speak to us today. And I am Megan Readman and you've been listening to the Dementia Researcher podcast. Thank you.

Voice Over:

The Dementia Researcher podcast was brought to you by University College London with generous funding from the UK National Institute for Health Research, Alzheimer's Research UK, Alzheimer's Society, Alzheimer's Association, and Race Against Dementia. Please subscribe, leave us a review, and register on our website for full access to all our great resources. DementiaResearcher.nihr.ac.uk.