Podcast – UK Dementia Care Research Summit 2020

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

Adam: Hello, I’m Adam Smith and I’m delighted to be hosting this podcast today for the NIHR dementia researcher website.

This week I’m joined by Hannah Churchill from the Alzheimer’s Society, Dr Kier Yong from University College London and Dr Tamara Backhouse from the University of East Anglia. And in today’s podcast we’re going to discuss the recently held UK dementia care research summit which was co-hosted by the Alzheimer’s Society, the Economic and Social Research Council which is often abbreviated to the ESRC, and ourselves at the National Institute of Health Research so before we get going, first of all I’m going to ask all of you to introduce yourselves, so perhaps first I could go to Tamara, would you like to go first?

Tamara: Yep, I’m Tamara Backhouse, I’m a postdoctoral research fellow funded by the Alzheimer’s Society and I’m based at the University of East Anglia in Norwich. My research background, I’ve looked at dementia research in care homes, home care, family and hospital settings and my current research focuses on personal care interactions in dementia at the later stages so I’m hoping to improve fundamental care.

Adam: That’s exactly why we’ve got you here, because your work is very much the focus of today. Kier?

Kier: Hi, thanks Adam, so my name is Kia, I actually started off dementia research about 10 years ago in residential care settings evaluating maintenance cognitive stimulation therapy, and since over the last 9 years I’ve mainly worked at the institute of neurology at University College London where I’ve developed and evaluated assistive technology and environmental adaptations to promote everyday activities so for example, reading, navigation or object finding in people living with various degrees of dementia-related cortical visual impairment by that I mean difficulties with people perceiving what or where things are, with these arising not from any eye condition but really from a diminished capacity of areas, particularly towards the back of the brain in being able to see what or where things are. So these are difficulties with people’s brain sight, not their eyesight.

Adam: Cool, I think I’ve seen some research on, is this where you can use eye tracking tech to see where, if you ask somebody to look for something you see where they look in the room to perceive where that is?

Kier: Yes that is one aspect of it, so a lot of the methods that we use range from say traditional neuropsychological methods, performing cognitive assessment methods of different areas say of vision or spatial awareness but we also use some more technological-based approaches really to evaluate care interventions so for example using eye tracking measures getting an idea of where people are looking but also measures that really assess the quality of people’s movements, so for example being able to discriminate people’s walking confidently across the room versus say someone who is hesitating and walking in a more indirect path.

Adam: Fantastic, I’m going to come to Hannah but I’m keen to ask, what are the practical applications of that?

Kier: so it’s a really important question, so something that really sticks with me again, going back to some of my original work in residential care settings is that a real limiting factor in my opinion of certain dementia care intervention studies is really the scalability of outcome measures so for example if your main outcome is very much questionnaire-based, I’m speaking from experience of going to a lot staff, who are incredibly, frankly, overworked in a lot of cases, to ask them in addition to provide say 2 hours’ worth of information on some of the residents I think isn’t quite practical so there’s been some talk about the potential application of technology-based measures as something where you can be continuously collecting information say in a community or residential care setting but minimising the involvement say from staff, but also being able to preserve blinding, which I guess we might be going on to, which can be a bit of an issue with some dementia care studies, so both single and double blinding.

Adam: this is really interesting, I’m going to have to move on, we will stop there, I can see a whole separate podcast talking about your work, so thank you very much Kier. Hannah?

Hannah: Hi there, I’m Hannah Churchill from the Alzheimer’s Society, my role is research communications officer there, so I spend my time talking and writing about the research we fund as an organisation and also that is going on around the world really, so that’s to make sure we can share that with our audiences, so that is people affected by dementia, volunteers, and the wider community as well. And then when it comes to the care summit I was involved in the organisation of that and supported James Pickett with that.

Adam: That’s fantastic, and that in itself is quite a tough role, because you’re like the Alzheimer’s Society is the trusted authority that people look to and whatever the Alzheimer’s Society say, people accept right, so that’s a lot of responsibility.

Hannah: Yeah, absolutely, yeah James did a fantastic job with this summit and brought together the, some key players and it is really a testament to his work in the field and in the way that we were able to do that, so it’s great to be part of it.

Adam: And we should say, James was supposed to join us today but unfortunately he has been ill so I’m sure you’ll join me in wishing James a speedy recovery and I’m sure we’ll have him on the podcast again very soon. So thank you very much all 3 of you, for, for finding time to talk to us today and for introducing yourselves. I’m going, to cheat here, I’ve copied and pasted a piece out of the programme because I thought it perfectly and really nicely set the scene for the summit but also as well for this conversation, so I’m going to quote this from the programme, so:

“Care research goes beyond finding drug treatments that can slow down disease progression, it addresses the daily challenges of living with dementia across the whole pathway and finding solutions to help people manage better. Yet, only 12% of dementia research funding in Europe address health and social care challenges. The UK Dementia Research Summit celebrates success in dementia research to date and reviews the landscape today. We will consider how the research policy community can drive forward the vital area of research to change the lives of 850,000 people living with dementia in the UK and their loved ones.”

So of course, that’s slightly appropriate if you’re reading that at the start of the summit, but I think perfectly kind of sets out where care research is right now, so my first question, I’m going to come to you Hannah and say, finding a cure, understandable is the focus of dementia research but how and why should we make sure care research stays on the agenda.

Hannah: Yeah, I mean of course we are all aware that finding a disease modifying treatment is a huge priority of the field but also we also need to consider the needs of people living with dementia today so we have 850,000 plus people in the UK today living with the condition, their families, their carers and it is possible that we might find a treatment for the condition in the coming years but that’s quite likely to be specific for a type of dementia or a specific phase and that leaves us with thousands of people living with dementia and who will continue to develop it so we have a duty to look after those people as well as a community and there’s the appetite and the passion to do that in the community.

So at the summit we celebrated some the great learnings and impact that we’ve already seen in care research and we really want to continue to support that work in the field and ensure that implemented and I’m sure that will come up later as one of the challenges around implementation and great progress has been made but there is a huge amount more to do. And you know in December the government came out and pledged to double dementia funding which was brilliant but we really need to see a commitment to that not only supporting biomedical research and continued funding for the DRI as well as other institutes but we also need to make sure that health and social care research isn’t by passed and it’s really factored in as a priority for the government as well and not just the government but other funders as well.

So yeah it’s really about supporting the people who are going to be living with dementia in the coming years and who are living with it today.

Adam: So the timing of the summit is perfect. I’m really interested to know the timeline of this. Was the summit arranged before we knew the results of the election or very quickly afterwards

Hannah: No, before the election was 12th December wasn’t it, so we had it in the pipeline before then so it’s panned out quite well in terms of timings

Adam: Before the manifesto commitment?

Hannah: I believe so yes, I mean maybe I’m just being optimistic, but yeah I think so, it was a whirlwind.

Adam: So the timing is perfect because what I guess what this gives you now is taking the outputs if this allows you to feed this in and I suppose Alzheimer’s Association…Association? Alzheimer’s Society lobbies government and you’ll be making a case for more funding for care and social care research.

Hannah: Yeah absolutely

Adam: Fantastic. So earlier this week I caught up with 6 of the leads that chaired each of the sessions, these are Professor Martin Rossor, there are a lot of professors here, Professor David Sharp, Professor Gill Manthorpe, Professor Claire Goodman, Professor Louise Robinson and Professor Alistair Burns. I put two questions to each of them, so before we move on let’s just hear from them. The first question I put to them is this:

In 30 seconds what research programme or initiative has had the greatest impact on care of people living with dementia to date?

Louise Robinson: I’m Louise Robinson, I’m an academic GP and Professor of Primary Care and Aging at Newcastle University. I think for me, coming from a primary community care background, it probably started with an NIHR Dendron initiative, Dementia and Neurodegenerative Diseases Research Network, where people from all round the country were encouraged to come together and work together and that was funded by the NIHR. And they actually set up a Primary Care Clinical Studies Group which had on not just GPs but social workers and secondary care specialists, nurses and that provided a real critical mass of researchers who were interested in in doing research on primary and community care and enabled us to get lots of big grants together.

Alistair Burns: Alistair Burns, I’m the national clinical director for dementia and older people’s mental health at NHS England and NHS Improvement, it is always very difficult to choose one in particular, but I think there are a couple to do with improving the care for the carers of people with dementia, things like Gill Livingstone’s START programme which really were very important in emphasising the exact model of post-diagnostic support that can benefit people with dementia and their families best of all.

Gill Manthorpe: I’m Gill Manthorpe from King’s College London. And I work in a policy research unit on health and social care workforce but I’m also involved in the NIHR CLARC South London and the NIHR School for Social Care Research. To me, the study that I remember very well is one that I would characterise as being very creative, very interesting and very insightful and it was Juliet Twig’s study funded by the ESRC about clothing and dementia. We all see people with dementia and yet we often forget to look at what they’re wearing, who makes the choices, who would wash something, how would it be stored and so on so to me thinking about clothing in dementia just was great, it was basic, practical, creative and inspiring.

David Sharp: Hi, my name’s Dave Sharp, I’m the lead of the care research and technology centre within the UK Dementia Research Institute, it’s been really pleasing over the last few years to see such a mushrooming and a kind of extension of the care research is focussed on, informing the benefits to people living with dementia. I’m particularly interested in those interventions that might scale and affect very large numbers of people, so one of the things that I’ve been very interested to see develop is the dementia friends programme, obviously driven from the Alzheimer’s Society, going from a standing start to 3 million people trained as dementia friends that potentially impact institutions, shops, people on the street, that’s something that I’ve been really impressed by and an excited to see.

Claire: Goodman: Hi I’m Claire Goodman, I’m Professor of Health Care Research at the University of Hertfordshire. I think the research, the building of research in care homes in the last 10 years has had the most impact for people living and dying with dementia. What was previously an overlooked Cinderella area has benefitted hugely from an increase in research.

Martin Rossor: I’m Martin Rossor, I’m a clinical neurologist based in London and I’m the NIHR Director for Dementia Research. Well looking back over quite a long time, I think the biggest initiative has been around the concept of person-centred care but perhaps in the broader sense that it’s not only understanding what an individual wants, the understanding of their disease etc, but the understanding that we have that dementia is not a single disease, many, many different diseases, many, many different presentations so the care of somebody with a behavioural frontotemporal dementia, the care of somebody who’s hallucinating with dementia with Lewy Bodies, the care of somebody with a cortical atrophy and visual-spatial problems are all very different from somebody with a memory problem.

Adam: I feel like that was probably a little bit of an exam question for them, I know when I spoke to all of them, they were kind of scratching their heads, oh no what should I single out as being the thing that’s had you know the most impact because it is, as much as there is much more to do, I do feel like we’ve had a fantastic kind of last 7,8 years, particularly for care research where it has come up the agenda. So Tamara, at the summit we heard from a number of people sharing information about their work, what particular presentation stood out for you?

Tamara: Oh, this is a really hard question because there were so many fantastic presentations during the day, I suppose, I will go for Martin Knapp’s presentation I think just because I thought it was really interesting the things that he highlighted around the social care is more important than health care for dementia care probably and then that he really highlighted that we should continue to get more investment in the social care research which is close to my heart being a, my background is as being a care worked in care homes so feel very strongly about the social care research, and also it was really interesting about the excess treatment costs in research for social care. Because it really does make things difficult to implement and sometimes the implementation ad the treatment there takes up a lot of the funding so if we could get recognition of that and more funders funding those it would be really really important I think and also obviously as an early career researcher myself he highlighted that we need to invest in the research community with that capacity building and keeping early career researchers engaged in the field so I felt that he highlighted really important things within the dementia care field and it was good to have those expressed quite early on in the day.

Adam: Yeah, I completely agree, I really liked Martin Knapp a lot, he’s got a really good presentation style and we should say, he’s the, is he one of the director or is he, I don’t know if he’s the lead or a director at the NIHR School for Social Care Research as well which is obviously based out of the LSE. And we’ve also recorded a podcast which will come out in a few weeks time about the cognitive footprint work that he’s involved in as well. Kier, can I put that same question to you?

Kier: So I’d echo Tamara’s point about there being no shortage of amazing talks to really chose from, so I had, I wasn’t in there in person so I was just watching this over my computer, I was planning on doing some work on the side, and I found it impossible actually to focus on work because I found a lot of the talks frankly to be very gripping. So we were talking about social care, I thought Gill Manthorpe’s talk was really great, I’m a bit biased really because I’ve used ENRICH, enabling research in care homes both to conduct discussion groups and also try and actually have some communication still working in care home setting even though I’m based at an institute that’s tied to like a tertiary hospital, but I think that one thing that stood out for me was seeing Gill Livingston’s overview of the strategies for relatives studies, so the START study because not only did she cover again the original RCT but she also covered a 6 year follow-up so some of the headline results being that depressive symptoms in the START arm were 20% of that relative to the treatment as usual arm and also there was evidence of cost-effectiveness of START and in addition what I thought was quite compelling was really how scalable START is as an intervention; the people delivering it as I understand it are graduate psychologist while they are trained and supervisor they don’t need to be clinically trained at least formally.

Adam: I have to say I loved that part of that, it’s really rare that, I’m talking to academics here, where you get given real-life implementation actually cost, what it actually costs to do this per patient in a real way that I think particularly if you’re at the front line of social or even NHS care management getting those figures actually make a real difference, I think it is that that can make you realise that that is something that is achievable otherwise it could cost a million pounds or it could cost a thousand pounds, you don’t know, it, but being able to say right this intervention is going to cost £175, you’re sat there working out how much it will cost you for all your patients and I loved that part of the talk, I think we should do that more definitely.

Kier: Especially as you can have some people making grandiose claims but then actually for how much you’re paying how much can you really quantify the benefit and the consistency of that benefit.

Adam: Absolutely, and I understand, and don’t get me wrong, I think I understand that that’s hard because of course delivering an intervention under trial circumstances is slightly different to delivering this as a normal business as usual part of care but I think I, I think that’s a great way forward and more people should do it.

Tamara: Kier highlighted the follow-up and that’s why that’s so important, 6 years later is a long time so it really does stand out as important.

Adam: Absolutely. And I mean I’m a little bit biased but as I had a hand in creating quite a few of the things that were highlighted by Martin Rossor and John O’Brien and Alistair Burns, so it, so one of my babies has been the NIHR enabling research in care homes, the ENRICH project, that was the very first job I was given when I started at the NIHR nearly 10 years ago at UCL, I was asked to try and address some of the problems of care residents underrepresentation in research and that also came at a time when care homes had been in the, hitting the headlines for all the wrong reasons about how care was provided. So one of my first jobs working with Steve Ilife, Claire Goodman and Gill Manthorpe and, Murna Downs, was to kind of work on creating ENRICH to be this toolkit to provide support but also then a practical network to help find care homes to do things because at that time just finding care homes to actually participant in studies was massively challenging, so I’m rather biased but I’m rather pleased that that got picked out and obviously other things as well, like Join Dementia Research my office created too and I was quite pleased to see the highlighting how many early career researchers have come to dementia care research which has been massive, right? I mean, it’s not just me thinking this, I can think of a university anywhere in the country that hasn’t got somebody, even if there in some dark and obscure corner somewhere beavering away all by themselves, working on dementia care or activities to provide better care and do you find that? I mean, are you being asked to fund more of this sort of work Hannah?

Hannah: Yeah, absolutely, we have, we always have a sort of collection of care applications that come into us and that must be equal to or nearly equal to the biomed ones, absolutely. And I don’t know if that is partly because Alzheimer’s Society is somewhere where care researchers tend to come to, which is something we would absolutely encourage, whether that’s a demonstration of the field it is difficult to know. Yeah, it is definitely our experience.

Adam: It is wonderful to see so many coming forward. Ok, Hannah, I’m going to put my next question to you really, so what new initiatives or studies discussed at the summit really stood out for you and there were quite a few weren’t there?

Hannah: Yeah, I mean there were, yeah far too many to talk about really, and I think I mean, it was really a privilege to be able to bring all those people together to talk about them and there’s you know, the dementia platform UK, ARCs, the UK DRI care and tech centre which has been fantastic and something we’ve been really passionate about supporting, but it was also, I wanted to talk a little bit about the new perspective that we’ve brought into the conversation from the US and also from Ian Lewis’s presentation, his talk particularly I was looking at the online conversation a lot of the time and we had some really good interaction on that discussion and I think the same was sort of felt in the room that there were a lot of people really interested in his talk and what I felt was really interesting was really talking about the nitty gritty of how we bring together multidisciplinary groups and you know in the way they’ve done this in cancer in different themes and different types of cancers and breaking them down in that sort of way and the real focus on collaboration through that model was really interesting and I think there’s a lot we could learn there in dementia research.

Adam: Yeah, I would really agree with that. I quite like neat, organised things in their places and boxes and I’m kind of one of those people that likes things well-organised and I think the way cancer were theme-ing things and grouping things worked, and you can absolutely see how that could be translated to our area where without that kind of organisation or that kind of theme-ing or grouping it just ends up being a little bit, a little bit sporadic. I don’t know…

Hannah: And the ability to monitor that and evaluate it and is just brilliant and the way they’ve been able to do that is fantastic.

Adam: And I kind of, well you can tell me because you’re more expert on this, but I thought also as well that’s an opportunity to reduce duplication. I kind of, but but in research duplication’s a good thing right? So you mean, you want to test things and contrast and compare but also you don’t want two studies going on at different ends of the country funded by two different funders doing exactly the same thing potentially churning out the same results as well.

Tamara: It allows for a coordinated approach doesn’t it which is something which would be great, so we could really target those areas of need as a sort community-focus on the areas where we’re lacking within dementia care research.

Adam: Yeah, it certainly makes it easy to identify the gaps, and I think, I’d, I think I’d also misunderstood because I thought that’s kind of what the dementia research institute were doing and then having saw their presentation I’d absolutely missed the point of their work which, so that was my misunderstanding, so I can see now where that comes. I think the real challenge, I don’t know, you tell me Hannah, the real challenge is ok that’s a good idea but who is responsible then for taking a lead and making that happen.

Hannah: Absolutely, I think there’s you know, that’s something that Alzheimer’s Society, the ESRC, the NIHR need to hash out and you know, if that’s really the model we’re looking at and we think that is something that could work then, then that’s a discussion to be had there definitely and that is going to take some time but and there’s more discussion to have around how appropriate the model is and other opportunities in the infrastructure we already have and utilising that, and I think there was some discussions online about what’s already out there and how can we use that and build on that rather than reinventing the wheel. So, there’s a lot of discussion to be had, yeah.

Adam: And there’s, the similarities go further in so much as you know, you’re breaking down the different types of cancer and we’re talking about rather than just thinking about dementia as a single disease as well which of course we know it isn’t, were you going to make a point?

Tamara: Yeah, it was interesting that within cancer research as well cancer care research had less funding, so there’s a sort of similarity there as well around the track history of dementia research where care is up and coming now and getting a bit more of a place in the field of all over dementia care.

Adam: Greedy bench scientists. Well actually let me come back to you Kier, so as a researcher working in the field of dementia care how do you think we can maximise changes to care?

Kier: So we’ve already heard some interesting points of sort of data sharing initiatives which I think we’re in a sense covered within the summit by people like Sebastian Crutch’s talk. For example a study that I was involved in was an ESRC/NIHR programme called Seeing what they See, where we uploaded actually a lot of our movement sense data as well as cognitive data as well as themes from semi-structured interviews all on to the data sharing portal and I think that Seb made the point that we’d gone through all this effort and actually there had been two downloads so far so a question of perhaps our responsibility isn’t even just making that data available but how we’re really banging the drum for sign-posting people to those data.

A point I made on the chat which I think was quite a nice feature of the summit, but this was quite a potentially, a sensitive point is that I’m a bit concerned about sharing information to do with patient and caregiver engagement where I’ve been to some events where of course this is something Alzheimer’s Society and the NIHR have been instrumental in making sure you’re demonstrating careful patient and caregiver involvement at the earliest stage of the conception of the research project but I get a bit concerned that you’ve got patients repeatedly attending multiple events and then being asked the same questions because perhaps people aren’t really making, you know, the findings of those good discussions really available and of course there’s tricky things to do about anonymity and also actually the funders actually really want to prioritise researchers spending their time making say those transcripts available but I think there’s potentially an ongoing question about what’s the best way to kind of have a coordinated approach.

In terms of how I think dementia care research can change that was the original question, I think some things that offer promise are as mentioned, some of the proposals that the dementia research institute care and technology group are mentioning where I’m hopefully they should provide again scalable, ideally valid measures, although someone’s actually going to have to determine a truth to validate some of these technology-based measures to really build capacity for care research in settings that are often considered quite challenging high-quality quantitative research, so we’re talking about in people’s home environments, in day centres and care homes.

Adam: Thank you, I think that’s a, this is a good point actually to go back to my pre-recordings to listen to our 6 leads and to hear their answers to the second question I put to them which is: Looking forward, how do you think the dementia care research community can drive meaningful change for people with dementia in the coming years?

Alistair Burns: Alistair Burns, I’m the national clinical director for dementia and older people’s mental health at NHS England and NHS Improvement. I think there’s a number of things the dementia care research community could do, I think today we’re seeing a fantastic overview of the huge amount of enthusiasm and research that’s going on, I think speaking together and focussing is the key.

Claire Goodman: Hi I’m Claire Goodman, I’m Professor of Health Care Research at the University of Hertfordshire. I think one of the ways that the dementia care research community can achieve change is by making sure that we work together to share research data and particularly for people in care homes who will, who are the most vulnerable, who have the most needs, is understanding how we can link our studies with routinely collected health and social care data to be able to show what is effective and what makes a difference and that’s where the best success can occur in the future.

Dave Sharp: Hi, my name’s Dave Sharp, I’m the lead of the care research and technology centre within the UK Dementia Research Institute. So as the lead for the care research and technology centre, we’re really focussed on the use of new technology and I really think there is a massive opportunity to harness technological developments across a range of areas that are relevant to dementia research. There’s a kind of explosion of potential technological solutions to things and what I think we need to do is to bring some clarity to that so doing some solid evaluation to provide really an evidence-based platform that people can choose from different technologies and that we can use to support people to live for as long as possible at home.

Louise Robinson: I’m Louise Robinson, I’m an academic GP and Professor of Primary Care and Aging at Newcastle University. I think the key thing is it is not much about doing the research but it’s about looking at how we can implement those key findings in practice, one of the difficulties I’ve had as a researcher of the last 20 years is that there’s money provided to do the research but then not to then enable us to then test it out or implement it in practice, and I think there really needs to be a shift in looking at innovation and implementation at funding not just research funding.

Martin Rossor: I’m Martin Rossor, I’m a clinical neurologist based in London and I’m the NIHR Director for Dementia Research. I think we need to know how to implement, there’s a lot that we know that does seem to work and we need to know how best to implement it and that’s in part, a research question, but although I say there’s much that we know is good and needs implementing, there’s still an awful lot out there that hasn’t been assessed so I think we need some smart new methodologies for rapid assessment of whether something does or does not work.

Gill Manthorpe: I’m Gill Manthorpe from King’s College London. And I work in a policy research unit on health and social care workforce but I’m also involved in the NIHR CLARC South London and the NIHR School for Social Care Research. I think that implementation is going to be the subject of the next decade, I think of it both as an art but also as a science, and it’s got to lead to some real developments and deliver. We’ve had too many now studies that have said they’re promising, that they’ve got potential and probably we need to do the actual fixing, and that’s fixing around systems, which means making sure support for people living with dementia is sufficient but it’s also thinking about sharing care and making sure it’s sustainable, so it’s a bit trite sometimes to use things that begin with the same letter but to me it’s about sustainability, sufficiency and sharing and if we can crack that as a research community then we’re probably going to make some real advances to the lives of people living with dementia now but also in the future.

Adam: Ok, I, that was really interesting to hear what they had to say and I think, I wonder whether they’d have changed their minds because I did ask them these questions before the summit, and I’d be really interested to go back to them and put the question again and see if they’d been influenced through the talks that happened across the day because I think I would have, I don’t think I would have necessarily had the same insights going in as I had coming out. My next question I think actually you’ve both, I was going to put particularly to you Kier and Tamara, and I think actually you kind of almost answered this just before we heard from the leads, but maybe I could come to you particularly Tamara – what, how would you have answered that same question.

Tamara: Ok, so I think Dawn Brooker and actually Claire Goodman’s presentations brought up something here and it was more about working with the end users Dawn said, meaning the staff members and the carers. So we have patient and public involvement and that is gaining traction and hopefully we’re all aware of that and at least using it in our research and developing research but also, sometimes we miss the staff members who are actually delivering the interventions or we’re trying to get information from for our research or who are facilitating our research so I think working with those end users and when Claire mentioned that we need for implementation, we need to be care aware and the context aware and I think part of that is working with those, those staff members sort of in care homes, perhaps home care workers, even family carers, working with the people who will be implementing our research or doing the things that will help their care.

Kier: If I could just jump in as well, so I think you hit on that key point, when it is again about implementation and dissemination which was again a theme that was raised repeatedly throughout the summit, you know, in the most extreme unfortunate case you can have researchers who are like oh I published this in a journal who no one is going to have access to in a way that isn’t well-communicated for particular audiences so I think there’s got to be a focus, so King’s is doing a lot of great work in terms of both, the MARCM and the home care forum as well in making sure there is that communication between people who actually might be, you know, that some of those research findings might actually be quite relevant to actually maybe changing practice.

Adam: I wrote a blog about the summit which will have been published by the time the podcast is out and I was thinking about this myself, is, where responsibility for implementation lies, I can’t remember who made the point, but somebody made the point that we’re really good at dissemination and not very good at implementation, and I was trying to think where implementation really sits, so research publishes paper, but are they magically the NHS will pick this up and go oh that’s worthwhile and we’ll go away and make that happen and that just doesn’t work like that in the NHS, so implementation has to sit somewhere and I don’t think at the moment there is any single body or organisation that’s responsible for that and I can’t help but feel there’s a bit of a gap there, is to take more ownership and I don’t think it should be the researchers.

I think researchers seem to be, in the absence of somebody to lead implementation, researchers are going oh well, we’ll implement this then, but that’s not their skillset and it’s kind of not for researchers, researchers learn what needs to be done and then need to hand that off, they shouldn’t then go off and try to implement it as well. I think Dawn Brooker is the exception to the rule on that, Dawn is fantastic about doing things and then making them happen. But, I don’t know, my, what do you think?

Hannah: No, I absolutely agree there’s this sort of, there is this disconnect and you’re right, we talked about things like START being able to provide us with the evidence for cost-effectiveness and coming up with all this fantastic data which, which you know, which we need and with, when it comes to influencing and policy changes without data like that it’s just simply not a practical, it just won’t happen, so I think organisations like Alzheimer’s Society definitely has a part to play there, we have a team that looks after policy and influence making and we have a team that fund research and lots of different elements of that within there, and we also have a small group of people who are research translation team, and they work closely with researchers and without policy team to really try and make sure that we really using the research that is published and applying it to real life or at least making it, making policy makers and people who have the ability to make changes to policy and to care aware of those findings, and that includes people in our own services who provide care, so yeah, we definitely, we’re in a strong position in that we have those different bases covered it’s even, you know, those relationships it is still a huge challenge and we are definitely still working out how that, how to make that effective move from research into policy, it’s a real challenge.

Adam: I agree. We’re kind of running a little bit short on time now, so what did you think of the summit as a whole. Did you have any particular highlights, Tamara?

Tamara: Ok, for me, I was there in the room so it was great to see all of the key players in the field and learn from their experiences and sort of feel the energy in the room and obviously there was a lot of networking opportunities for myself to meet people or consolidate previous meetings, so that was really a nice thing personally. But for me, it was about gaining this overview of the field, sort of where we’ve come, where we are and what are priorities are, so, so I found that really, really nice to sort of feel ah I know, I know, I now have this overview which I sort of half had before but it really gave me that view and also I was really pleased that home care was highlighted as a an area.

Adam: I suspect that will come up in my last question, I suspect. I completely agree, there isn’t anybody I know working in care, you know, working on ENRICH for so many years I kind of know a lot, I know everybody in that space and there wasn’t anybody in the room that, anybody not in the room that I think should have been. I think the only bit that I didn’t get was the NHS piece, there wasn’t a great deal talking perhaps about kind of dementia care inside a hospital and somebody kind of goes in for other reasons or the kinda care pathway across memory clinics which we know, would have been quite hard to talk to though, because that’s quite varied across the NHS I think it’s fair to say, slight gaps, that isn’t to say there isn’t things going on in that space but I guess it wasn’t a particular focus.

Kier: Yeah, I think on further reflection it might have been nice in the first session I think there was someone with a lived experience of dementia, who again was presenting but again there could have been maybe slightly more room for that. Possibly contradicting what I’ve just said about not trying to duplicate these events, but also as well maybe expecting there to be maybe more stuff on the policy side, so maybe someone from the King’s fund say.

Adam: Yeah, but it is a one day thing, and I think the challenge for me, looking to Hannah, still no, I think James did a fantastic job in organising this, trying to do so much in this six hour window that the summit was held over was quite tricky, you could quite easily see how a summit like this could easily be a 2 or even 3 day thing going forward, with a whole day just on care homes and a whole day on, on NHS care and on the diagnosis pathways where of course, and even before that, care’s usually begun before the pathway. So, Kier what, did you have any overall highlights for you?

Kier: So, as Tamara said, it was really encouraging these frankly, titans in field all in the same place and, you know, you can’t understate the challenges we face in terms of dementia care but just seeing again some of the steps that have been taken and the diversity of areas of care research is always really encouraging and hearing people get shout outs like Bob Wood, also Linda Clare, I thought that so things like the chat function I thought was very good for stimulating discussion as well.

Adam: Well, because what we had was the round table discussions as well obviously that was, the equivalent was going on on that online chat. Alright, Hannah, I’m going to come to you with the kind of final question now, so, so, the big question if you like, so, can you give us an overview of what was taken away as to the, the main, what did you see as the main steps next and what unfolded as those key points?

Hannah: Yeah, I mean, there’s a lot to say and there is still a lot to be talked through and sort of summarised and brought together, we talked together already about bringing together Alzheimer’s Society, the ESRC, and the NIHR, the funders event to really knuckle down and decide how we’re going to take this forward. I think you know, there’s a few different things to talk about here; first of all, we need to be able to join up all this brilliant work that’s been going on already – we’ve already acknowledged in this podcast the extent and the breadth and diversity of this work and ensuring that we aren’t working in silos and like I mentioned earlier,  we can learn a huge amount from the cancer research field in doing that, so and thinking about the infrastructure required to do it so that’s going to be, you know, thinking about the infrastructure and the collaboration is going to be a huge challenge.

Data, clearly we acknowledged during the debate that this is a hugely important issue and something that we’re not doing as effectively as we should be and we should be banging the drum and making, you know, people aware of this as a possibility and working with DPUK to do that, so that’s something to definitely think about and Tamara mentioned about building capacity so I think that’s been a focus for Alzheimer’s Society for a long time, supporting early career researchers, but you know, where’s the, where’s the next generation coming from , how can we increase that capacity further. You know, how can we ensure we don’t lose researchers once they’ve completed their PhD and their fellowship and like keep them in the field and keep the passion there.

So there’s a huge number of different outcomes to consider here and I think we’ve got a lot of work to do with the NIHR and the ESRC and to bring all those conversations together. And you know, I think it really boils down to a lot of influencing work to do as well from us as an organisation and more broadly around the, you know, the pledge by the government to increase dementia research funding in their manifesto and we need to ensure first of all that this commitment is upheld and that, you know, as we’ve mentioned all the way through this, the importance of care research is recognised and that there is funding carved out for health and social care research.

Adam: I would completely agree with all that. I think money would be, I think it would be money not ambition that will be the limiting factor on this agenda isn’t it. I think pushing to get that that manifesto commitment realised and then in the hands of people who can put it to uses is essential. The one slight last point you picked up on there, was on early career researchers, can I just come to, you’re not early career researchers right, but, are you? Would you class yourselves as early career researchers?

Tamara: Well my fellowship is a junior fellowship…

Kier: Mine as well…

Adam: Oh, so you are still, ok. I thought you were both on senior fellowships sorry [laughing].

Tamara: We’re both junior fellows, post-doc and you know…

Adam: So how could we attract more early career researchers to care?

Tamara: Ok, well I think, I agree with what Hannah just said that we need to not lose those we have in the first place, I mean there’s a sort of you come to the end of contract and then ah limbo so a lot of people come out of academia or go to lecturing and then lose that sort of predominantly research-focussed they are then thinking maybe of students and only sort of small research on the side so that’s something looking at the structures there maybe and different structures through the career progression. But I also you know, growing the field and demonstrating implementation and real world change will do that a little bit because it will draw people in and think ah this is, you know, you can make real change on the ground to people’s lives. So I think, you know, getting that out there, the good things that we are doing, so our focus on implementation going forwards would be good. And the things that are happening here with you know the early career network and having that support so when you are doing dementia care research as an early career researchers you feel part of something and you start to understand the field as a whole and be involved in that and it’s more likely to keep people coming in and keep people staying.

Adam: I completely agree with everything you said there, I think getting more early career researchers to talk about their work encouraging people to be open to talk about their work will attract people and it will, absolutely if you can see some direct line of sight between, between your work and some real life outcomes and improvements in care that’s so inspiring I think to others who want to work in the same. Did you have anything to add to that Kier?

Kier: So I can think of really two things, one being in line with the NIIHR’s strategy for allied health professionals to try to figure out how to really give people more protected time to become research leaders who’ve got you know, clinical patient facing background. And I guess there’s a number of ways this could be achieved, so people, a certain proportion of their role that they’ve got protected time to engage with the existing evidence base or contribute to a new evidence base. I think there is another to do multidisciplinary researchers, again, it is all well and good talking about multidisciplinary research but there’s not a magic word that’s going to make dementia care automatically better, I think there has to be a way to accelerate people who say have a background in engineering or computer science, having a pretty concrete idea of some of the challenges that are faced day to day so again, I’m speaking as someone who is in my own ivory tower where again, largely the work I do is really attached to a hospital setting but it’s trying to avoid this risk that Hannah talked about of silos, or really this kind of ivory tower phenomenon which was also talked about at the summit.

Adam: So, we’re also going to try and do some work this year with undergraduates particularly who we’re hoping to encourage, they were always a kind of audience that we hoped to interact with through the podcast and through the website so we’re hoping to do more with undergraduates to encourage them to consider dementia rather than other diseases. This is a competition right? [laughing]

Alright, thank you very much Hannah, Tamara and Kier. The summit was recorded and has, shared as a live stream on the day and I believe each of the segments are now available for you to watch back on YouTube so anybody who is listening to this podcast and hasn’t seen this yet, I suggest you go away and have a look on YouTube on the Alzheimer’s Society YouTube channel to find and watch on those. They are really interesting, I think particularly if you are listening outside the UK I don’t think there is anything there that you wouldn’t relate to from care in your own country as well.

So, details on how to access that will also be in with this website. As I mentioned a couple of times, plugs for my own blog, I wrote a blog of my own thoughts on what I thought the takeaways were. And if any of our listeners have anything to add on this topic, please do post your comments on our website, drop us a line on twitter using the #ECRDementia. The hashtag from the event #DementiaCare2020 so of course you can go away and search on that on twitter to find the discussion that was going on throughout the event a couple of weeks ago. On our website you’ll also find a transcript of this podcast so if any of your colleagues are or friends are unable to listen please do point them in the direction of the website where they can read through the text from today.

We also have a Whatsapp community group where we host fortnightly themed discussions to talk about the topics from the podcasts and details on how to join that can be found on our twitter feed and on the ask the expert part of our website. And so we hope you’ll join us on in a weeks’ time on the Monday 8.30 GMT in the evening in our Whatsapp group to talk about the themes from today.

Finally please remember to like, subscribe, leave a review of our podcast through the website iTunes, Spotify, Stitcher, Podbean, honestly just anywhere where you get your podcasts you’ll find it, I think even Alexa, if you say Alexa play our podcast she will do that too.

So thank you very much and do tell your friends and colleagues, thank you again everybody for joining us and we hope to get you back in the studio again to talk about your own research next time.

Thank you!

Voice Over – This was a podcast brought to you by Dementia Researcher: everything you need in one place. Register today at dementiaresearcher.nihr.ac.uk.

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