Podcast – Recommendations from the UK APPG on Dementia

Voice Over:

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

Dr Clare Jonas:

Hello, welcome to this NIHR Dementia Researcher podcast. I’m Claire Jonas, and I’m a research communications officer at Alzheimer’s Society. Today we’ll be talking about the All Party Parliamentary Group, or APPG, on Dementia. I’m joined by three panelists who’ve all been involved in the APPG. Would you like to introduce yourselves?

Jordan Clark:

Hi, I’m Jordan. I’m a public affairs officer at Alzheimer’s Society so I lead on our political influence and work in the research portfolio.

Dr Richard Oakley:

Hi, I’m Rich Oakley. I’m the Head of Research at the Alzheimer’s Society.

Dr Sarah Ryan:

Hi, I’m Sarah Ryan. I’m an Alzheimer’s Society funded research fellow at the University of Manchester.

Dr Clare Jonas:

Thanks, everyone. I know that some of our listeners aren’t from the UK, so we want to give a bit of context for this before we start. An APPG is a group of members of parliament who are interested in a particular topic, and they could come from any political party. If there’s a particular question within this topic that they’re interested in, they can hold an inquiry to collect evidence, which is then brought together in a report. Earlier this year, the APPG on Dementia held an inquiry on the state of dementia research in the UK, and today the report is being published.

Dr Clare Jonas:

Jordan, you’ve been heavily involved in organizing this APPG inquiry. Can you give us a general idea of what it is and how Alzheimer’s Society has played a part?

Jordan Clark:

So, as you said, there’s lots of APPGs and they could be on any sort of subjects going from American football all the way down to oral health, and we act as the secretariat for the APPG on Dementia, so that means we do a lot of the behind-the-scenes work. That could be preparing meetings or finding guest speakers and writing reports such as the one that we’re publishing today. Every year and a half, every two years, the APPG decides to hold an inquiry on a particular subject. So, earlier this year at our AGM where they elected new officers, they put together a plan for the activity for the year. And we worked with the chairs to bring that plan together and sort of program our activity for the year. I know both the chairs are really interested in dementia research and the government’s commitment to double dementia research funding is something that’s been close to their mind, so they were really keen to do an inquiry into this topic.

Dr Clare Jonas:

Thanks, Jordan. In the specific case of the APPG on Dementia, what’s been involved? Who’s been involved? What have they been discussing?

Jordan Clark:

Yeah, so our chairs of the APPG who are Debbie Abrahams who’s a Labour MP up in Oldham and Sally Greengross who’s a crossbench member of the House of Lords have really been leading on the work for us in the inquiry sessions. There’s a few vice chairs that we have as well, which get involved in our work, but I’d say Debbie and Sally have really been leading on the work that’s been being done. So, as well as taking written evidence from over 35 different organizations and individuals, we also held a few oral evidence sessions. We held four over the summer where we heard from experts on dementia, researchers, leading organizations, charities, and obviously importantly, people with lived experience of dementia. So, the APPG has been going for over just over 10 years now, and they’ve held inquiries on a number of different topics.

Jordan Clark:

Most recently we held one in 2019 on dementia and disability, so this new one looking at dementia research, we decided to hold four oral evidence sessions. The first looked at the impact of the pandemic on dementia research and the government’s commitment to double dementia research funding through what they call the Dementia Moonshot. One on the advances in diagnosis, care, research and technology. One on prevention research, and one as well on the future of dementia research in the UK, and we particularly focused that on early career researchers and heard from Sarah in that session.

Dr Clare Jonas:

Thanks. There’s a lot of stuff going on here, and I think the first thing that people may not be familiar with is the Dementia Moonshot, and we’re going to be talking a lot about that today. So, Rich, maybe you could tell us a bit more about what that is.

Dr Richard Oakley:

Yeah, absolutely. So, the current government made an election pledge to double dementia funding by 2030, so it’s more about 80 million spent at the moment to 160 million spent per year. So, I think we all know that dementia has been underfunded, historically. Dementia research is the answer to a lot of the questions that we have in dementia and research will beat dementia, but it has suffered from underfunding compared to other diseases. And the size of the problem we have in dementia needs this moonshot. For example, there was a Alzheimer’s Society and London School of Economics report from 2019 that said the cost of care of dementia is 34.7 billion pounds a year, and that is due to increase to 94 billion pounds a year by 2040, and the only way to really tackle that is through research.

Dr Richard Oakley:

So, this commitment to double research spending on dementia is really great to see and this report is talking about how we want to see that realized coming forward, and it’s not just about the research that we’re, or the money we gain for research, there’s also a lot of other positives that investment in research can give. After the study conducted by [inaudible 00:05:38] economics in September 2020 showed that for one pound of public research spent, it stimulates really extra investment between almost a pound of private or two pounds of private investment over the next 15 years, so that’s saying that a mutual investment of 800 million which is what the government pledge to do would actually leverage an additional 1.8 billion pounds of investment into the economy, which is really fantastic. So, this moonshot has so many benefits to it, and that’s one of the reasons why we really want to see the government commit to it now. So, in terms of what that moonshot is going to do, there’s five real priorities as we see it for this moonshot to really take to.

Dr Richard Oakley:

So, one was to increase research to ensure the early and accurate diagnosis of dementia. We know that’s a challenge, and it does take longer than we want to get diagnosis currently, and that delays people getting access to the treatment and support that they need, and they can get. We want to see a transformation of care through technology, and we want to see investment into that. More money going to the understanding of the underlying causes and finding a cure of dementia, and actually, there’s been some real great progress in that in the UK Dementia Research Institute which launched a number of years ago. Now it’s really a kind of a leading center to look into those understanding causes, and that is really great, and we want to see more work in that way.

Dr Richard Oakley:

We want the moonshot to really help fund more multidisciplinary research. The Alzheimer’s Society has a centers of excellence model, which really brings people together across disciplines to really tackle a specific aspect of dementia, and that’s really key, and that’s shown some really great success. We want to see more of that multidisciplinary research. And finally, as Jordan’s already alluded to, we have a real focus on talk about training the dementia research leaders of the future, which is absolutely vital if we want to see a really vibrant and really great dementia research landscape.

Dr Clare Jonas:

Thanks, Rich, so that brings us really nicely to Sarah, who is an early career researcher. So, would you like to tell us, Sarah, about where you are in your career and what you’re working on?

Dr Sarah Ryan:

Yeah. I work a type of dementia called frontotemporal dementia or FTD for short, which is relatively rare compared to Alzheimer’s. I think that’s what most people think of when they think of dementia, but there are other kinds as well, which are just as important to work on. I work in a lab, and I grow cells in a dish and use them to try and mimic what’s going on inside the brain of someone with FTD, so we can try and understand what changes are happening in disease and what’s causing that. Basically, it’s all with a view to being able to find new ways to intervene and new therapeutics to stop that process from happening.

Dr Sarah Ryan:

And in terms of career stage, I am what’s called a junior research fellow funded by Alzheimer’s Society, so I’m kind of an in-between stage between being a postdoc in someone else’s lab and trying to form my own. So, I have three years of funding from Alzheimer’s Society to fund independent projects, and my next stage of my career will be to apply for a senior research fellowship and try and establish my own group.

Dr Clare Jonas:

Brilliant. Okay. So, you gave evidence during the inquiry about your experience as an early career researcher, so how did that come about for you?

Dr Sarah Ryan:

I was actually invited by Alzheimer’s Society to speak because obviously being funded by them, they knew the career stage I was at and that I have experience as an early career researcher. I guess the evidence that I gave, I was speaking on behalf of myself, but also many, many, many chats with colleagues at similar career stages over the years and things that I’ve seen happen and then how the pandemic has affected not just me but my colleagues as well.

Dr Clare Jonas:

I’m going to come back to Jordan now because I want to talk a little bit about the report that’s being released. So, the report about the inquiry is coming out on September 8th, which is the same day this podcast is coming out. Jordan, you’re the person who wrote most of this report, could you tell us how you put it together?

Jordan Clark:

Sure. So, as I alluded to earlier, we held a few oral evidence sessions like the one that Sarah has just spoken about there, and we also took written evidence as well. So, we put together some online forms where people could share their thoughts, and we tried to get that out as far and as wide as possible using all our networks to as many researchers across the country, and we had responses from institutions and individuals from Glasgow all the way down to Plymouth. So, we was really happy with this or breadth of evidence that we received and the different types of evidence we received. As a said, we also got evidence from lots of people affected by dementia, which was really important hearing their voice in this. With any report now Alzheimer’s Society is involved in, we always want to make sure that we’re including the voice of people with dementia and effected by dementia, so that was a really important part of the work.

Jordan Clark:

And then, we held the oral evidence sessions, so that was those four that I mentioned earlier where we heard from Sarah, from ex-England rugby star Ben Kay, come along to speak about his work in the PREVENT program and to speak about sport and dementia, and then funders like Alzheimer’s Society, Alzheimer’s Research UK. After those, just to take you behind the scenes I suppose a little bit, after each of those oral evidence sessions, I have the arduous task of writing them up into sort of a bit like a policy document, somewhere in between a policy document and meeting minutes, so that I could use them later on.

Jordan Clark:

And using those and a combination of the written evidence, we started to form the shape of the report, but really helpfully, we had input from other organizations and academics as the report went along, so that we could put our suggested recommendations and points to them, and then, we’re here today. Obviously, as well, we looked at other types of evidence like funding that’s already out there and statistics that we know have been bought through in other reports, looking at other organizations and the work that they’ve done as well.

Dr Clare Jonas:

So, the report is structured around sort of several key themes. Would like to talk us through those?

Jordan Clark:

Sure, absolutely. I think at the sort of setting off of the report, we know we had three areas that we wanted to look at. So, the first was just looking at the current state of dementia research and how the lay of the land is at the moment. We wanted the report, and this is its central recommendation which I’m sure we’ll come onto later, but it makes the case for the moonshot and the need for this extra funding, and then also as well as how that money could be spent. I think quite often people ask government for money, but they don’t necessarily lay out how that money could best be used, so we wanted to make sure the report did that as well.

Jordan Clark:

And, as you say, the report covers several key themes. So, the first is the importance around prevention, early detection and diagnosis. One is around biomedical research and keeping the ball rolling on biomedical research, particularly through the UK Dementia Research Institute, and we also speak about other leading research centers as well in there. And something that was quite important and come through quite strongly in the written evidence was making sure that care services are more evidence-based. What we’ve found is that often care research isn’t evidence-based and you wouldn’t expect that when you go into the NHS, so we’re really making the case there that we need much more support in the care research sector.

Jordan Clark:

A big theme in this report was the impact of COVID-19 on dementia research, and as you spoke with Sarah, especially on early career researchers, and also as well, finally, more opportunities for people affected by dementia to be involved in research, not just participating, but shaping what research questions are asked and how the research is actually done. That’s something that’s certainly come through with people affected by dementia that we spoke to as a part of the inquiry, those that involve themselves in research now and the sense of empowerment they feel when they’re able to even just play a small part in a piece of research.

Dr Clare Jonas:

Okay, so let’s dig a little bit deeper into some of these recommendations that Jordan’s just been talking about. Rich, what makes prevention and early detection and diagnosis so important?

Dr Richard Oakley:

Yeah, I think particularly early detection, there’s a lot of myths around this, and I think it’s really important to say that getting an early and accurate diagnosis with dementia really does matter. It matters now, and it will matter even more in the future when we do have a disease with more treatments available. The earlier we can give them the better, but right now it is really important to make sure that someone does get an accurate and early diagnosis just for the sense that they know what they have, and they have some understanding of what journey they’re going to be on, but also, so we can get the support mechanisms that are in place to help you, and there’re absolutely interventions and support mechanisms that are in place that you can gain access to once you get the diagnosis.

Dr Richard Oakley:

So, I think that is really, really important. Like I say, it’s important now, and it will be even more important in future as these treatments come online. In terms of prevention, the Alzheimer’s Society funded a part from the Lancet Commission report on modifiable dementia risk factors, and it’s talking about things like air pollution, physical activity, social isolation, so things that are modifiable risk factors, things that you can do something about, and the report estimates that actually about 40% of dementias can be prevented. And it is a complicated story because it’s not only about individual control. Things like air pollution aren’t things that anyone can necessarily make a difference about, but they are modifiable. We can change them, and so, I think it’s really important that we publicize these. We talk about these, that everyone has a better understanding that dementia isn’t an inevitable part of aging, that there are things that individuals can do to reduce their risk.

Dr Richard Oakley:

Also, so that we all start talking about it more broadly and start trying to get a little bit of a movement going so that government and other organizations that also have a role to play, understand and know what role they can play, so that we can start to realize some of that 40% of cases that we believe can be prevented. So, it’s a really important topic. Then if we get prevention right and if we get diagnosis right, that is going to make a massive difference to the people affected by dementia now, and it will really set us up in the future for what is a growing problem.

Dr Richard Oakley:

And I think some of the challenges that we have in this is a lack of awareness, so we talked about that and how we need to raise awareness in some of these facts and figures and detail to empower people and to give governments the information to make the right policies to support.

Dr Richard Oakley:

There’s also some problem in terms of diagnosis, some kind of more mechanical problems if you want to access the diagnostic methods, so PET scans are only available in a limited number, about 30 places in the UK and Pet scans are expensive. They’re used for research, used for diagnosis. There’s a lot of requirements on them, so they’re not always available. And there are other diagnostic tools we have that aren’t available to everyone in every location, and that is definitely something that we know now that we need to improve on that, so that’s something that we definitely need to look at, and there are new tests come online. Blood-based biomarkers will be hopefully rolled out in the coming years, but again, we need to make sure that everyone gets access to them, that the NHS integrates them into their common pathways, and that doesn’t happen by chance. That happens by people really championing and supporting and making sure these things happen quickly in time, then, in the right way. So, I think we need to be talking about that, and that’s part of the reason why the APPG report makes a number of recommendations.

Dr Richard Oakley:

First, they talk about the moonshot and directing some of the funding towards early diagnosis, whether that be new technologies or systems preparedness, to make sure those technologies are rolled out in the right way. The moonshot also talks about using technology to support the people affected by dementia in terms of their care and helping them to live independently, so we talk about a longitude price here for dementia to support using new technologies to enable people and their carers to live independently and increase their quality of life. And we also talk about that need for public information, how some money could be spent on campaigns to ensure that people know about dementia, know about what they can do to limit their own risks of developing dementia.

Dr Clare Jonas:

I just want to pick up there, you were talking about sort of new diagnostic tests, so a lot of these, not all of them, but a lot of them are going to come from biomedical research and funding for biomedical research is one of the key themes of the report. So, could you maybe give us some more context for what’s going on with funding in that field?

Dr Richard Oakley:

Yeah, absolutely. And as I mentioned earlier, dementia has been underfunded compared to other diseases historically, but there have been big improvements over the last decade. And I think largely, and some of the things like the Prime Minister’s Challenge on Dementia, which come through a number of years ago, has made a real difference, and we have seen more government funding, more charity funding and more private funding going into dementia research which is really welcome, and it is absolutely key to say that research is the answer to a number of the challenges we face. It will help develop new technologies to help people live better, to improve the care that people receive when they are diagnosed dementia. It will develop the treatments that people need going forward, so research is absolutely answer and research requires money, so it’s great to see over the last decade or so increased investment. And the signpost that investment was really increasing and the UK becoming a global power was in 2017 the creation of the UK Dementia Research Institute.

Dr Richard Oakley:

So, this is a number of institutes, a number of universities around the UK, which all now have a particular focus on tackling dementia from different angles, but all working together. And in total there’s now over 650 researchers working in the UK Dementia Research Institute all trying to really focus on the understanding, the basic biology really of dementia, which underpins a lot of the advances you mentioned, bio-medical research. Our basic understanding really underpins the advances and the changes and differences we can make, and the increased investment has led to this UK Dementia Research Institute, which is a world-leading institute which is really driving forward advances in dementia, which is absolutely fantastic.

Dr Richard Oakley:

Of course, when I talk about funding and the really good situation or the good journey we’ve been on for the last decade or so with an increased investment into dementia, I can’t not mention the recent impact of COVID, unfortunately, on that, particularly on biomedical charities like Alzheimer’s Society and others which play a vital role in the dementia research landscape. We really do fund some really groundbreaking research which others then take on to other levels.

Dr Richard Oakley:

And the Academy of Medical Research Charities recently estimated 310-million-pound shortfall in UK medical research investment which is directly linked to the impact of the pandemic. And just the impact on the Alzheimer’s Society, last year we weren’t actually able to have a single funding pool, and we normally run two a year. We’re going to have one this year rather than normal two and other charities have been similarly affected. So, when there has been chronic under funding for decades, charities have played a vital role and we have been hit hard. And so, that is definitely something that we need to be aware of and we don’t lose the momentum that was really building up in dementia because dementia is a global issue, which is only getting bigger, and we don’t want to lose momentum in tackling it because we really were getting to an exciting place. And I think that is why in the APPG report we’re calling for an increase or guaranteed funding really for the UK Dementia Research Institute for the next 10 years to ensure that the UK stays at the forefront of dementia research.

Dr Clare Jonas:

So, Sarah, I want to come back to you because you’re a biomedical researcher who has faced these problems on the ground as it were. So, what’s your experience been like?

Dr Sarah Ryan:

Well, it has been a really tough time, especially for ECRs like myself, and there were a lot of problems which have been either created or exacerbated by the pandemic. And I could talk for ages on that because most of my evidence session was actually about that, so I’ll try and condense to what I think are a couple of the really most pressing issues that are affecting the most people.

Dr Sarah Ryan:

So, I think the pandemic has been really catastrophic for ECRs in two major ways. The first one is, of course, with interruptions to research. So, many of us lab based or perhaps working face-to-face with people affected by dementia, and so, because of lockdowns we weren’t able to do that part of our jobs for a large portion of last year. So, I myself wasn’t able to get into the lab for around six months so my research was completely halted in that time.

Dr Sarah Ryan:

It’s not just the time that you’re not in the lab as well. It’s also a period of time in the run-up to that that might be wasted if you’d been in the middle of a big study that required a lot of setup and then it couldn’t be completed. You’ve wasted that time you’ve already spent in the run-up to lockdown. And then again, when we returned to the lab, people having to repeat that work, breeding mice or differentiating cells and growing things up, so it really did take a while to get back up to full capacity.

Dr Sarah Ryan:

Also, most places I think had reduced lab capacity when we did return to work for social distancing reasons, which obviously everyone’s happy to do. We want to be safe at work, but it did mean we weren’t able to all just come back at 100% working full time. It took a while to build [inaudible 00:23:29]. The upshot of all that is that many of us, including myself, are now concerned that we’re behind both on progress towards dementia research and also individually in our own careers. It’s really important that we’re publishing lots of papers so that we can get grants, and so, I’m worried that my CV won’t be as competitive as it would’ve been had I not had this big interruption to my research. And I need to apply for senior fellowships in the next year or so, so that’s something that obviously is forefront of my mind.

Dr Sarah Ryan:

And that brings me quite nicely to the second point, which is, Rich has already mentioned how COVID has been catastrophic for dementia research funding, particularly funding from the charity section, which does make up a large chunk of the funding that we have access to. And so, because charities weren’t able to offer any funding rounds last year, and what they’re able to offer this year is going to be of course reduced that means that something that was already incredibly competitive to apply for, that already wasn’t enough pre-pandemic, now is even thinner, and so, everybody that is currently working on a short term contract as all ECRs are, if their contract was due to end recently, or it’s coming up to an end in the next few months, they’re probably going to be in a real pickle trying to find funding because there’s less of it.

Dr Sarah Ryan:

And this is a real problem because, first of all, it’s very devastating for individuals who are very passionate about their work. They’ve got years of experience and have worked very hard towards goal and have clear career ambitions, so if you’re unable to get fresh funding when your contract ends you usually would have to actually leave academia if there’s nowhere else to go and find a completely different job, but it’s also really damaging for the research itself because of course we’re losing people who we’ve spent years and lots of money training up and they’re very skilled and experienced and experts in their sub fields. And so, we’re losing a lot of talent in that sense, which I think is a huge problem, and this is a problem we have in academia anyway. We know that we struggle with this so-called leaky pipeline where we’re training people up and then losing them after a few years because there aren’t enough funding to keep them, but I think that the COVID has really exacerbated that problem.

Dr Sarah Ryan:

So, one of the things that we actually talked about in my evidence session was that perhaps some of the money from the Dementia Moonshot could be used to provide grants specifically for ECRs to apply for, so maybe increasing the number of fellowships available both junior and senior, but also providing some kind of emergency bridging funding for postdocs who haven’t been able to secure the next part of funding because of COVID, to try and retain that talent that we would otherwise lose because of the pandemic. But that’s, of course, an emergency short term solution, and we do need to be really thinking about long-term solutions to restructure the way that we’re working in academic research, because I don’t think it’s very sustainable long term.

Dr Clare Jonas:

It sounds like it’s been… I know, having been an early career researcher myself, that it was difficult, but I wasn’t an early career researcher during the pandemic, and it just sounds like it was a horribly difficult time the last year and a half, and I’m really sorry about that. That is rubbish.

Dr Sarah Ryan:

I think it’s one of the things where it’s a very stressful career choice anyway, and the pandemic has made it worse for everyone, but the reason that people put up with the stress and the financial uncertainty and all the difficulties is because we’ve given up our jobs. We’re very passionate about what we do and that’s the only reason that people will deal with that level of insecurity, and so, that’s surely a reason that you want to retain these people because they’re people who care about what they do and will give you good results and make more progress in research.

Dr Clare Jonas:

That sounds like it was really difficult. I wanted to not, basically, to minimize your experience, but I wanted to talk about something that’s hopefully a bit more positive in your work, which is working with people who are affected by dementia. So, you do lab work, but you still work with people who are affected by dementia because you’re funded by Alzheimer’s Society, and everyone who is funded by Alzheimer’s society works with our research network volunteers. And there’re people who are affected by dementia, who help decide what research we should fund and to monitor the projects as they’re going along. So, how have they helped you in your work, especially in the last year, but also in general?

Dr Sarah Ryan:

That’s one of the really nice things about working with Alzheimer’s Society, actually. It’s been a really positive experience working with my network volunteers, so I have three volunteers who were assigned to my project at the start of the fellowship. They’re all really lovely people, and they all have personal experience of dementia with someone close in the family who they cared for. So, they’re able to really put things in perspective for me as a lab-based researcher, because I don’t interact with people affected by dementia in my day-to-day work. It’s something that normally I’d have to seek out. I do a lot of public engagement, so I’ll meet people at science fairs who will chat to me and say, “Oh, yeah, my mum had dementia,” and we’ll have a bit of a chat, but this is a bit more substantial than that, and they’re really alongside my research journey with me.

Dr Sarah Ryan:

And you mentioned about positive things moving on from the negativity of the pandemic. Actually, we had a meeting a few months ago that was exactly that because I was feeling quite negative after a really tough year, and we had a catch up, and they were just so nice and so positive. And I told them everything that’s been going on and some more of the difficult things that had happened as well. We had a fire that destroyed some of our reagents during lockdown and so on, so that delayed it even more and they were just so uplifting. They were very encouraging. They said, “Well, yeah. Gee, sounds like you’ve made quite a lot of progress given all of the difficulties that you faced,” and we talked about plans for the future and how things are all kind of back on track and we’re full steam ahead now. They’re just very, very positive, uplifting people who remind me why I’m doing what I’m doing. That it’s not just interesting from a scientific point of view of what’s going on with neurons and cells and proteins, but actually why it’s important at a human level.

Dr Clare Jonas:

That’s really good to hear. Thank you for sharing that. So, I guess this is a sort of broader question that comes up in the report, the role of people who are affected by dementia in research, and that there’s a kind of lack of opportunities to be involved in research, whether that’s sort of taking part in studies or in shaping the course of the studies as the research network volunteers have been doing with you. Rich or Sarah, or both of you, would you like to explain more?

Dr Richard Oakley:

Yeah, I’ll start with that one. So, I think as Sarah’s talked about there, at the Alzheimer’s Society people affected by dementia are involved in absolutely everything we do. They help us select the research we fund. They support the research as well with funding, but I think one of the things that came up in this report and it is definitely widely acknowledged in the field is that we need to get people with dementia into clinical trials. We need to support that recruitment and support them once they’re in. For example, in 2019, 2020, a couple of years ago now, but there was nearly six times as many people with cancer taking part in clinical trials via the government, called the NIHR Clinical Research Network, that government supported program to get people into clinical trials, taking part in research in order to find the next treatment, the next cure, or better ways of caring for people.

Dr Richard Oakley:

So, six times more people took part in trials looking at cancer than in dementia. And without people with dementia getting involved in clinical trials that is definitely going to hold us back in terms of developing the next treatment, the next diagnosis. Looking at how we can provide better care is absolutely vital to that progress, so the Alzheimer’s Society part fund with government and other medical charities, the Joint Dementia Research Platform, which is basically a platform which enables people who are diagnosed with dementia to get involved in clinical research in order to find the next cure, the next diagnostic tool, or improve the care that people with dementia have, but only 2% of people who receive a diagnosis with dementia are actually on Joint Dementia Research at the moment, and that is not enough if we want to really push forward progress with research because clinical trials are absolutely vital to ensuring we are making progress.

Dr Richard Oakley:

And so, it’s really important that we talk about this and then we raise awareness of this challenge because it’s definitely accepted in any conference you go to about dementia research, it is absolutely universally accepted as one of the barriers we are currently facing, and I think it’s really about empowering people with dementia to know that they can make a difference if they want to. And I think it’s one of the things we talk about a lot at the Alzheimer’s Society is nothing is done to, but is rather done with people affected by dementia, and that is really the underlying principle of the Alzheimer’s Society and our research network. And that is why, again, in the APPG report, one of the recommendations is making sure that people affected by dementia are routinely offered information and opportunities to take part in research if they would like to.

Dr Clare Jonas:

So, Rich, we’ve talked about clinical and biomedical research, but care research is also important, especially for people who have dementia now, who might not be able to, for example, access clinical trials as things stand. So, one of the things that’s come up in the report is a call for care to be more evidence-based. Could you explain what’s going on with that?

Dr Richard Oakley:

Yeah, absolutely. So, care research is absolutely critical, and at the moment the Alzheimer’s Society fund a substantial amount of research into this to ensure that people, as you rightly say, that are diagnosed with dementia now receive the best care that they possibly can and see as good of quality of life as they possibly can, which is absolutely vital now and will continue to be vital in the future. And it’s something that hasn’t always received as much attention. I think people, when they think about research, they often think about the cure, but actually care is absolutely vital, and it’s something that the Alzheimer’s Society is really passionate about.

Dr Richard Oakley:

And I think one of the things that I think Jordan’s already alluded to is that actually a number of studies have shown now that actually care based services in the UK aren’t always evidence-based, and there’s a number of very complicated reasons for that, but obviously if anyone is going into care, they want to know the care they’re receiving and the people that are looking after them are doing so based on the best available data and evidence and that just hasn’t been the case.

Dr Richard Oakley:

Alzheimer’s Society have funded a number, three actually, center of excellences which is kind of these multidisciplinary models where you bring together a number of researchers to tackle a specific question. And the three we have at the moment based at three universities, Newcastle, Exeter and University College London, they’re all really looking at different aspects of care. So, one is looking at what good quality care is. There isn’t really a gold standard that we can say this is what everyone should be aiming to, and that’s one of the reasons why we have such variation. So, we funded a five-year program there to try and develop that kind of protocol for what good care looks like.

Dr Richard Oakley:

We’ve looked at doing research into what good post diagnostic support should be. So again, once someone receives a diagnosis of dementia, at that moment what happens next in terms of how they are signposted through a very complicated system, how they are treated and how people reach out to them? That is quite varied, and again, it’s because there isn’t a gold standard model, so we’ve invested in research trying in what good looks like in terms of post diagnostic support.

Dr Richard Oakley:

And finally, all said, the people that are providing the caring, whether that be in a care home setting or a family member, how do we make sure that they have the support and the training that they need to know that they are providing the best quality care or the best they can to the person with dementia? So again, we’re one of our centers of excellence is looking into that, providing some training and some support and some kind of evidence space to help them be able to do that.

Dr Richard Oakley:

And that is so important right now, but it will definitely continue to be something in the coming years that if we can increase, and even use some of the language we have, to make sure that people with dementia, people affected by dementia, receive the best quality care that we now know exists. That’d really make a difference to people’s quality of life. That is something that the Alzheimer’s Society is really passionate about doing, so I think that is absolutely something, and the APPG report has a recommendation talking about our center of excellence model getting a range of disciplines, multidisciplinary research teams together to tackle some of these problems. Like I say, in our three center of excellence models we’ve seen some really great results in the past three, four years, and it’s definitely something the APPG report recommends other funders copying that model [inaudible 00:36:53].

Dr Clare Jonas:

So, we’re coming to the end of the podcast now. So, Jordan, would you be able to tell us what’s next for the APPG report? So, how are we in the wider community going to use it to support the call for the moonshot, and how can our listeners help?

Jordan Clark:

Yeah, sure. So, I suppose now the hard work begins on the report trying to get the government to view it, so I suppose there’s two main jobs that we’ve got. The first is just getting it out there and sharing it as wide as possible with all our networks and to all the listeners out there, we’d really appreciate it if you was able to share it as well with as many people you know that will be interested to read it. We’ve put a lot of hard work into it, and I’d love it if as many people as possible would be able to read this report.

Jordan Clark:

And the second is getting the government to listen, so we’ll be working with the APPG chairs and vice chairs to try and get this in front of government. So, if you do know your local MP, or you have a cousin who just happens to be a minister, do please send them the report. We’d really appreciate any way we can get this report in front of them. And like I say, we’ll be doing some sort of parliamentary activity in the coming months. We’ll be holding a couple of debates in parliament and working with MPs that we work with quite often, quite closely with, to try and get this out there.

Jordan Clark:

You can see the report today, when it’s up, on our Twitter page, so it’s just @APPGDementia, and if you just Google APPG on Dementia, as well, that’ll take you to the Alzheimer’s Society webpage where the report will be hosted. And if you wish, all the previous oral evidence session videos are up there as well, so you can take a look at them.

Dr Clare Jonas:

Fantastic, so that’s it for our summary of the recent APPG on Dementia Research. So, thank you to Sarah and Rich and Jordan for sharing their thoughts, and thank you to you for listening. We’ve covered quite a lot of ground today, but I hope that’s given you a good insight into what an APPG is, how an inquiry works and how it might affect future research policy. So, if you’d like to learn more, at 4:00 PM UK time today, Alzheimer’s Society is going to be hosting a webinar to launch the report, and you can sign up to attend that on our website. And one final thing to say is the Alzheimer’s Society has teamed up with Dementia Research for a series of webinars on the latest dementia research and practical advice for early career researchers as well. So, you can find the sign-up link for that on the Dementia Research website.

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Brought to you by dementiaresearcher.nihr.ac.uk in association with Alzheimer’s Research UK and Alzheimer’s Society, supporting early career dementia researchers across the world.

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