What do researchers need to know? Advice from people living with dementia – Part 1

Voice Over:

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

Adam Smith:

Hello, my name’s Adam Smith and I’d like to welcome you to this special on-location podcast recording for the NHIR Dementia Researcher website. Special because the fantastic Exeter Medical School is playing host to us today, and because this week I’m not joined by researchers, but instead I’m joined by three inspirational individuals who have and continue to face the realities of living with dementia as part of their everyday lives.

Adam Smith:

And I mean also as well, are fantastic champions for the importance of research. So this week specifically we’re going to talk and chat about what inspired them to become involved in research, what’s been their experience of participating in studies, and what they did and didn’t like, and find out what advice they would give to early-career dementia researchers. So, I’m pleased to welcome Hilary Doxford, Jayne Goodrich … I said that wrong again, didn’t I? We just checked whether I’d get that right. Jayne Goodrich.

Jayne Goodrick:

You were doing fine.

Adam Smith:

This is becoming a theme now. It’s okay, we’re not going to edit that out.

Chris Roberts:

Which is good, which is good.

Adam Smith:

It’s a thing, every podcast I record I’m going to get names wrong. So Jayne Goodrick and Chris Roberts, and of course everybody, actually, Chris who I talk to thinks you’re Chris Mason, because Mason’s your Twitter-

Chris Roberts:

[crosstalk 00:01:25].

Adam Smith:

“It’s Chris Mason, right?” “No, I’m Chris Roberts.” So first of all, why don’t we start with a quick round table so you could tell us a little bit about yourselves? I’m going to go anticlockwise and start with Hilary, as I introduced you first.

Hilary Doxford:

Okay, thanks Adam. I’m Hilary and I’m married to Peter. We’ve been married about 10 years, and I got diagnosed with early-onset Alzheimer’s disease in 2012, and following on from that I have got very involved in doing all I can to help anybody working in the dementia field, to support them in their work. And I’m a member of the research network of the Alzheimer’s Society, amongst many other things.

Adam Smith:

And you extend internationally as well, don’t you, your influence?

Hilary Doxford:

I guess you could say that, yes. A lot of it’s being in the right place at the right time. I was in the right place when the World Dementia Council got set up, and I got invited to join that. Similarly, Alzheimer’s Europe, they have a European working group of people with dementia, and I got involved with that. And everything I get involved in does have a research aspect to it, because that’s where my interest lies and my passion lies.

Adam Smith:

Thank you. Chris.

Chris Roberts:

Hello, I’m Chris Roberts, I live in North Wales, right on the coast, a lovely, beautiful spot. I was diagnosed about six years ago, maybe seven, firstly with vascular dementia and then a little bit afterwards, three months afterwards I think, with Alzheimer’s. So I’ve got mixed dementia. It was a bit of a learning curve because we were totally ignorant about dementia, so it took us a while. But after research, we understood the illness a bit better and we could embrace it a bit better.

Chris Roberts:

And with any life-changing illness, we changed our lives, and that’s what we’ve been doing now. We’re involved in, same as Hilary, lots of similar things, and research actually gave us the hope that we were looking for, because there was no cure, we thought it was the end of the world, and research gave us the hope we’re looking for. It does give people hope and it’s fantastic to take part.

Adam Smith:

Thanks, Chris, and Jayne, who I shouldn’t need to say, you’re Chris’ wife.

Jayne Goodrick:

Yep.

Adam Smith:

Although I guess you were going to say that.

Jayne Goodrick:

Yeah, my name is Jayne Goodrick, but Chris and I are legally married. We’ve been married 24 years now, and I’m minded that this summer the Alzheimer’s Society Conference held a panel which was titled “A World Without Dementia”. Well, our world was a world without dementia prior to 2012, which is when Chris had his first diagnosis, and after that we were plunged into a world that we knew nothing about, we had no knowledge of, and as Chris said, we were left hopeless.

Jayne Goodrick:

We now understand the meaning of the word “hopeless”. But research gave us back that hope, but we had to do a lot of research ourselves into finding out what was out there, what research we could get involved in, how to get involved in research, and that has become one of our joint abiding … Well, the life that we live together now.

Adam Smith:

And I think I realize that you three really are unique. Do you think you’re unique individuals? Because of course, what you’ve taken from this diagnosis has taken you into a whole different space on the work you’ve done in champion and engaging research, the kind of … I know I’ve seen you all talk to some very big audiences at some big national conferences. I don’t know if that’s what you would’ve done in your everyday life before this?

Chris Roberts:

No, absolutely not, but there’s been people around like us for the last 25 years. It’s just there’s more and more now, because the first ones that came out, and started taking part in research, and getting the name out there, like Christine Bryden, 22 years, they inspired people.

Hilary Doxford:

They did.

Chris Roberts:

And then the people that were inspired more people.

Hilary Doxford:

Yeah, I think you’ll find we have very little new things to say because there’s been so many people before us and still alongside us saying them, but we can reinforce what they’re saying, because a lot of sense is talked by people who live the experience. We know what it’s like, so we can say it as it is.

Chris Roberts:

Yeah, we realize that we’ve become experts ourselves, by experience, and we’ve got knowledge of our illness that professionals will never have.

Adam Smith:

Yeah, and of course, everybody’s going to have their own experience of dementia, aren’t they?

Chris Roberts:

Absolutely.

Adam Smith:

Because of course, symptoms are so different, people’s backgrounds are different, and how it affects them as well.

Chris Roberts:

Yeah, we’re all individuals.

Adam Smith:

So you’re all not just an inspiration I think to researchers as well, but hopefully to other people who are newly diagnosed, who are trying to come to terms with this diagnosis, as to how it can … It doesn’t necessarily have to be limiting in the way that it is for some people.

Chris Roberts:

No, we don’t go to asylums anymore, we don’t get locked up and forgotten about, and there is life after diagnosis. And even Jayne-

Adam Smith:

I mean, you’re all a credit to that, absolutely.

Chris Roberts:

Even Jayne, my wife, is living with dementia, because it affects everyone around me.

Adam Smith:

Yeah.

Jayne Goodrick:

When Chris had his diagnosis, the whole family received a diagnosis and we all had to change our way of living. We didn’t change our life, just our way of living, to make certain adjustments for Chris, and certain adjustments in making sure was somebody always available if needed. But I think Chris and Hilary were diagnosed at an optimum time, because we’ve had great in-roads with the internet. As Chris said, there have been lots of people before, and as Hilary said, saying the same things that they’re saying, but now with the internet, people have had a much louder voice.

Jayne Goodrick:

People have been able to get together and people like the researchers have been able to find the advocates like Chris and Hilary much more easily because of the internet, and email, and all the social media. People that are very, very passionate may seem to have a louder voice, it’s just that they may be able to use the internet or social media more easily, or find out how to get involved.

Jayne Goodrick:

We didn’t know about Alzheimer’s Research UK until we went onto the internet, and that has enabled people with dementia to actually have a much stronger voice. Prior to this, it was very much the carer’s voice that was heard, and our perception of what Chris may have wanted or may have needed, as opposed to now it’s their own voices being heard, and being heard very strongly and worldwide.

Chris Roberts:

And people forget, dementia is not the image that’s portrayed in the media. There is a beginning and a middle before the end stages, and also, dementia doesn’t define us. We’re not just people living with dementia, we were managers, researchers, professors.

Adam Smith:

Well, that’s a good question, actually. I’m quite interested to know, what did you do in your … I hate to always label somebody as “what were you-”

Jayne Goodrick:

In a previous life.

Adam Smith:

“What were is?” like your job is just what you’re all about, but what did you do as careers and stuff before?

Jayne Goodrick:

I’ve had several previous lives as my life has gone along, I left school, I became an adult, and became a worker. I then had a career in the ambulance service. I then stopped working in the ambulance service and was very much … A little bit more than a housewife, but I ran a business from home. So I’ve had lots of previous lives, so don’t worry about saying “previous life” to us.

Adam Smith:

No, no, but that’s quite interesting, because then that gives you quite a varied experience, I think, running your own business and applying those skills to a different challenge which is your passion to spread the word, and inspire, and influence, and things like that. I think those skills, you bring with you. What about you Hilary, what did you do?

Hilary Doxford:

Well, my very first job, I was a laboratory assistant for Boots, the chemist. But I moved from that into the retail side, then I moved into software, then I moved into business analysis. Tended to be in management roles, but my last job, I worked for the UK’s Renal Registry, which has a massive database collecting data on chronic kidney disease and acute kidney injury.

Hilary Doxford:

We got data on patients from all round the country. It’s basically an audit outfit, but we also did research because we’ve got this very rich source of data. So I worked on the management side, but I’ve worked with clinicians, statisticians, data managers, and it’s given me such a helpful background into suddenly moving from that side of the fence to actually becoming somebody with a diagnosis, and I understand.

Adam Smith:

Yeah, and you’re both retired now as well. Had you retired before you got your diagnosis?

Hilary Doxford:

No.

Adam Smith:

Or did your retirement come after?

Hilary Doxford:

I carried on working for five years, but last year it eventually became, with your brain sort of shutting down bit by bit, it was getting too complicated. That’s not to say I won’t look for a job. I could still do an admin-type job where I’ve got repetitive tasks, that sort of thing, because I’m still in the early stages. But I certainly cannot handle complex tasks anymore.

Adam Smith:

Well, and of course this side of things, your work in advocacy and everything else is kind of, I imagine, quite time consuming. You just need to get paid for it, right?

Hilary Doxford:

It’s pretty much just full time. Yeah, that would be nice. Yeah. I think one of the things we say is it helps keep our brains active, and with this disease, you really have got to force yourself to use your brain. It’s so easy-

Chris Roberts:

It’s definitely “use it or lose it”, isn’t it?

Hilary Doxford:

It is, your brain becomes lazy, like people become lazy physically. Your brain makes you become lazy, and I never thought just thinking could be such hard work. It always used to just happen, you know? The answers came to me, no effort. Now, ah, you get so tired just thinking.

Adam Smith:

It’s like that fragmented hard drive, you know when your computer starts to go slow and-

Hilary Doxford:

Yeah, defrag me. Yeah.

Adam Smith:

That wasn’t a euphemism, either.

Chris Roberts:

Restart [crosstalk 00:12:03].

Adam Smith:

So, well, let’s move on then. So as I said, I think in addition to the fantastic work you do to raise awareness of research, and to encourage others, and to inspire, you’ve all, as well as being champions, you’ve also kind of participated in research and things yourself. So how did you first arrive at research as being something … Did somebody introduce this to you or did you go off in search … I mean, Jayne, you mentioned the internet. Were you Googling this the night you came out of the memory clinic?

Jayne Goodrick:

Well, I mention the internet an awful lot, but it was Chris that was doing that. Just because he has dementia, doesn’t make him stupid. As Hilary has-

Chris Roberts:

Misconception that, isn’t it?

Jayne Goodrick:

Has shown, the amount of skills and knowledge that Hilary has had before the day she had the diagnosis does not go away the day after diagnosis.

Chris Roberts:

No.

Jayne Goodrick:

So all those skills used, so it was Chris that actually went onto the internet and found out as much as he could to support us both. I was in not a good place but trying to put on a very brave face. I wrapped him in cotton wool, I disabled Chris earlier than the dementia did, but that was out of love and kindness. But very quickly, because he’s such a pragmatic man, it was like, “Come on, Jayne, let’s get over this.”

Adam Smith:

So what did you find? So many of us turn to the internet now, don’t we, which is full of good things and bad things, what did you find? Did you find stuff on the internet that was helpful?

Chris Roberts:

Yes and no. There’s a lot of generic misconceptions, and assumptions, and a lot of fake news out there.

Jayne Goodrick:

A lot of fear out there as well.

Chris Roberts:

Yeah, yeah, and you’ve really got to filter through the good and the bad. The first research I ever took part in was something that the memory clinic actually mentioned to me, and I was a bit apprehensive about going, because I had this image in my head of being strapped to a table and parts of my brain being taken from me, because it wasn’t explained properly. So it was some months before I actually thought about it and actually got in touch again, once I’d done a little bit of research and realized that not all research is invasive. And then I got involved, and then I want to get involved more then.

Adam Smith:

I think, actually, just thinking about the internet again, is this is, because of course this podcast is mainly aimed at early-career researchers about, obviously, a big ambition of early-career researchers is to do their publications, but I think increasingly, particularly in certain areas of research, they have to go beyond that, because whatever they find as part of their PhDs and things, it’s not just good enough now to publish it into a journal which other academics are going to read, actually.

Adam Smith:

You want that research, to be a direct line of sight between your research outcomes and the people that you’re hoping that that will help. I know I’ve been talking to the team at Leeds Beckett and Alys Griffiths recently, about their efforts to disseminate their findings on their care home research, for example. I don’t know, is that something you’d expect to see more of, and do you find that now? Do you get an opportunity to see research outcomes?

Hilary Doxford:

I think it’s one of our bugbears, is that we all see pockets of excellence and we hear about the outcomes of some of these research projects, and they go no further. And I don’t know where the fault lies, because I think that the funders should take some responsibility for making sure the end point isn’t speaking at a conference or publishing a paper. It has to be implementation and dissemination, and it really frustrates me.

Hilary Doxford:

I see all these bits of excellent work being done for PhDs and they go no further, and somebody needs to take responsibility for making it happen, because if you’re pouring money into research, there should be benefits pouring out the other end, and it’s just too limiting. People with dementia, day by day, another X hundred or thousands of people hit another end … Not an endpoint, hit another milestone in the progression of the disease, and they’re not going to go backwards. They’re only progressing further, further down the line, and the things that could come out this research that could delay that progression, and it’s a sin to me for it not to be shared.

Chris Roberts:

It’s terrible when it just gets shelved, and my biggest bugbear is when I take part in a lot of research, I don’t hear anything ever again.

Hilary Doxford:

Oh, I’m with you on that.

Chris Roberts:

I don’t get any feedback, I get nothing, and I’d like to be all the way along, and I want to know what’s happened. I want to know what my contribution … Did it help, did it not help? And give feedback.

Hilary Doxford:

Yeah, I’ve taken part-

Chris Roberts:

I’d like feedback also from the researchers to see how I was.

Adam Smith:

So there’s a couple of points there, aren’t there? This is about, again, as we go through this podcast and hopefully come up with a few things which are these tips for early-career researchers, is that feedback is really important. And that isn’t something that just happens at the end of a study when they publish, like we might otherwise expect, that this is something that needs to come throughout.

Adam Smith:

I mean, we know that some research studies last a month and it involves one visit. Others might last two years, three years, and involve going in 30 times plus, screening. But whether it’s one visit or 30, you want feedback throughout. Even if they can’t necessarily share the results, there’s definitely an update they could give, even just to say, “The study’s progressing well-”

Jayne Goodrick:

[crosstalk 00:17:46].

Chris Roberts:

Absolutely, absolutely.

Adam Smith:

“Recruitment’s on track, we’re hoping to publish here.”

Chris Roberts:

And that also, people like … It’s nice to get a thank you, and then that inspires you to carry on. If you hear nothing, it’s like, “Well, that was a waste of time. That obviously failed, I was obviously no good in my contributions,” because you don’t hear anything. And then you’ve also got the other side of the coin where we could be co-researchers, depending on our past, and it depends what stage you’re at and what relevant backgrounds you’ve got, but there’s lots of people out there that were professors and researchers, and have got a scientific background. Hilary’s got a scientific background. I couldn’t be a co-researcher, but there’s lots of people that could be.

Adam Smith:

Sorry, Jayne, I think you were …

Jayne Goodrick:

Yeah, they just said exactly what I was going to say. I think one of the things that is a barrier for people is the media: The media are very focused on looking for the cure, looking for medications. They’re very medically minded, and there’s an awful lot of social research out there, social care research, technology research that may not be the cure for the dementia, but it’s the cure for living with dementia, because the technology helps us to live much better. The technology keeps Chris, and I’m going to include Hilary, independent for a lot longer.

Chris Roberts:

We’ve spent 100 years looking for this magical bullet, let’s concentrate on care. Let’s develop … Just make people feel good whilst they’re alive.

Jayne Goodrick:

But the big pharma will take care of the medical cure, the chemical-

Chris Roberts:

Because we’re all going to die anyway.

Jayne Goodrick:

But that’s what we need, but we also need more avenues for the researchers to get their research out to the commissioning bodies. If the commissioning bodies don’t know this is there, how can they commission it to actually entail more research? We know the NICE guidelines. They can only recommend what has been evidenced to work, and when we all know something works beautifully but there’s no evidence to support it, they cannot put that into their guidelines, and these are some of the difficulties.

Adam Smith:

I’ve seen, actually, a few studies particularly around PCA and things like that recently, where these are studies that are almost retrospectively trying to get the evidence for what we already know actually works-

Jayne Goodrick:

Exactly.

Adam Smith:

Rather than trying to research something new. So just recapping then, so important to keep not only the study participants, but if you’ve got something to share throughout the process, share it, even [crosstalk 00:20:13]-

Hilary Doxford:

Even if you haven’t got something to share.

Adam Smith:

Exactly, even if it’s not the results.

Chris Roberts:

Yes, yes, yep.

Adam Smith:

Even if it’s just a progress report to say, “Things are going well, aim to publish here, this many people have participated,” sharing news.

Chris Roberts:

“We haven’t forgotten about you.”

Adam Smith:

Important to keep everybody up to date. I think we have to probably, then … There’s probably something for the likes of me, and the NIHR, and the funders to take away for how you might provide the platform, that not quite talking about publishing in a journal here, but a platform by which researchers can share this progress. Obviously, I know we all are involved with Join Dementia Research as well, which is a website that allows people to recruit. But you could almost see that some of those progress reports could come back through a place like that.

Hilary Doxford:

They do. Some of the studies, proposals that are coming through now are actually talking about having a website for the study that was frequently publish updates. And Craig Ritchie is very good, there’s a newsletter comes out on his work every month or every quarter.

Adam Smith:

That’s good, but then I still think the only people who get that are the people who are in the study. So if you know about it and go looking for it, you’ll find it. But actually, you almost want a place [crosstalk 00:21:30]-

Chris Roberts:

It’s more public, then.

Adam Smith:

It’s definitely better.

Chris Roberts:

Yeah, because people can find it easier then. Because a lot of this work, you have to really dig deep to find any of it.

Jayne Goodrick:

And also-

Chris Roberts:

So it has to be more publicly accessible.

Jayne Goodrick:

As Chris said earlier, he thought research was all about invasive techniques. We don’t understand, the lay public don’t understand what a biomarker is. I would’ve thought a biomarker would be taking a piece of flesh, or blood, or one of the bodily fluids or whatever, and actually it can be as simple as a scan.

Adam Smith:

Technical terms, yeah.

Jayne Goodrick:

Yeah, so a lot of education for the general public to take away that fear, the same as when we had a diagnosis, there was that fear of, “We don’t know what’s ahead.” People have a fear of, “I don’t know what’s involved in research.” So explanations for us and education for us would really benefit.

Chris Roberts:

Just [crosstalk 00:22:21] about that, what’s always missing I think, when you take part in research, you can have a really good information pack, and it can be really accessible, and an easy read, and what’s always missing is a small glossary of terms, and what acronyms, and what they actually mean.

Adam Smith:

So that’s to go with the study information that you get as well?

Chris Roberts:

Yeah, yeah.

Adam Smith:

A glossary of terms to-

Chris Roberts:

Absolutely.

Adam Smith:

Remove some of those acronyms and-

Chris Roberts:

And also, and then while you’re taking part, because everyone’s got the health language, the health talk, and I know it’s very difficult to change your whole attitude because you’ve got a patient in the room, but if I had something like that, I could not stop you and keep asking, “What does that mean? What does that mean? What does …” You know?

Jayne Goodrick:

I think that’s a theme that’s running through the NHS service as a whole anyway, because I understand that consultants, when they’re writing letters to GPs, are asked now to write to the patient first and copy in the GP, as opposed to the GP and copying in the patient, and to use less technical terms such as “hepatic”, using “liver” instead of “hepatic”, or “renal” and “kidney”. And that’s not a bad thing, but I think we do accept that actually, sometimes the medics need to be medics. But where they can use more lay language, please do so to encourage people, to give people less fear.

Adam Smith:

So there’s a couple of things I wanted to pick up on there as well, is I think as much as this podcast is aimed at early-career researchers, I think given you’re all involved, there’s a fair chance that some other people might listen to this as well. So there are a couple of places that I know I turn to for information that we should probably just get a plug in for: So the … Is it called the Alzforum? The Alzforum is a website where researchers, where they pick up on certain pieces of research and publish it in there, not necessarily in language that’s for lay people, but certainly it’s there for you to be able to look at. I’m sure it’s the Alzforum, it is the Alzforum, and then-

Chris Roberts:

But what is a “lay person”? As I said, we’ve all got our own backgrounds.

Adam Smith:

Exactly, exactly.

Chris Roberts:

So don’t make assumptions that the patients can’t access.

Adam Smith:

It’s certainly published for a scientific audience, but also as well, you can comment. So I think there’s definitely a place where if you don’t know something [crosstalk 00:24:37]-

Jayne Goodrick:

Yes, but is that … I don’t know the forum you’re talking about, is that password coded? Do you have to apply? Do you have to be of a certain background to get access to that? Because some of these things are limited by you have to register and you have to be a student of such and such or wherever. Well, that, straightaway, precludes a lot of the public.

Adam Smith:

Do you know what, as we speak, of course I’m Googling it to remind myself.

Jayne Goodrick:

I know the NIHR have an early-career researcher, or whatever the correct phrase is, for people doing research, but we can’t access it because we’re lay members.

Chris Roberts:

There’s a good website I found called The Researcher.

Adam Smith:

No, so everything that’s on there is public. You can register if you want to contribute or post comments and things, but everything in there is-

Jayne Goodrick:

It’s accessible without having to pre-register-

Adam Smith:

It’s a kind of network of researchers publish their articles for their peers to be able to look at in a free space, specifically for Alzheimer’s. And the other website that I really like because they just present information, and it’s not just dementia specific, but is the NHS Choices … Well, I don’t even know if they’re called NHS Choices now, just the NHS website which is called Behind the Headlines, where they take the high-interest [crosstalk 00:25:52]-

Jayne Goodrick:

Whether red wine is going to cure you of dementia, that’ll tell us, actually, the research behind that particular headline.

Adam Smith:

Exactly.

Jayne Goodrick:

We quite like that one, though.

Adam Smith:

But they’re good, because they break it down to explain who it is that’s done this, what they did, how the research is interpreted, and almost put a sensible view on whatever’s been in the media, so-

Chris Roberts:

It stops us all going out and buying cases of red wine, doesn’t it, and cases [crosstalk 00:26:17]-

Adam Smith:

I mean, there’s usually something on there at least once a month. I’m looking here, 22nd October was the last, which says, “Study confirms that keeping heart healthy also reduces dementia risk.”

Jayne Goodrick:

Surprise, surprise.

Adam Smith:

We don’t know [crosstalk 00:26:26].

Chris Roberts:

Surprise, surprise. What’s good for your heart’s good for your head, wow.

Adam Smith:

So let’s move on, because I’m conscious of time, and it’s so easy to get carried away, so-

Chris Roberts:

I think my biggest advice, sorry to butt in, but just before I lose the concentration, is don’t make assumptions on any part, from the researchers or the people. We just need to talk to each other, we need to ask. I think that’s-

Jayne Goodrick:

Something we’ve heard a lot of is, “Oh, well, I didn’t think I could ask,” or, “I didn’t think I should ask.” My answer is, “Just ask. If you get-”

Chris Roberts:

And we’ll say no.

Jayne Goodrick:

We’ll say no if we can’t do it.

Adam Smith:

And so it accommodates for both: So if you are going to publish something like that, you could do a full scientific breakdown and a summary for the people that want to read the detail, they can, for the people that-

Jayne Goodrick:

Absolutely.

Adam Smith:

Just want the headlines.

Chris Roberts:

And why don’t they, when they publish a paper, just have some patient comments included in the paper at the end?

Adam Smith:

Yeah. Certainly, it’s trickier if no patients have been involved, but then again actually, do you know what, I think there’s nothing wrong either with trying to get more patient involvement with the stuff that happens in the lab as well, to understand what’s going on in the back end, rather than just going, “Oh yeah, none of us …” Well, apart from Hilary. Hilary understands what’s going on, but nobody else.

Chris Roberts:

Well, I think especially with dementia, we all need to work together. The old disabled term, years ago for disabled rights was “Nothing About Us Without Us”, which I hear quite a lot. But with dementia, we can’t do it on our own, and you can’t do it on your own because it’s such a technical, varied disease. So I think it’s “Nothing About Us Without All of Us”. We’ve all got a part to play.

Adam Smith:

Absolutely.

Jayne Goodrick:

And we were very privileged to go round Professor Julie Williams’ laboratory in Cardiff University, which is going to be one of the dementia … Well, it is a dementia-

Adam Smith:

That’s on genetics, isn’t it?

Jayne Goodrick:

Yeah, which is a Dementia Research Institute hub, and she explained in very simple terms what she was looking at, what they were hoping for, and she was really confident that they would find some kind of breakthrough within a short amount of time. And she was able to speak to us in our language, we understood every word she said. So there’s no need to bamboozle us with technical jargon without getting your message across.

Adam Smith:

I don’t know if the charities have done this across the board, but I’ve certainly seen as well YouTube videos from the charities, where they’ve talked about … Probably more to do with the procedures that you might experience, “What is CSF?”

Jayne Goodrick:

CSF, yeah.

Adam Smith:

What an MRI is like and things like that, but actually, you could understand they could also … I’m envisaging already a whole YouTube series on presenting research in bite size chunks that … Yeah, I think that’s a good idea.

Adam Smith:

Okay, and I’m afraid that’s all we’ve got time for as part of this podcast today. However, what we’re going to do is we’re going to carry on talking. We’ve got lots more questions and lots more to talk about, and as I mentioned at the start today that this was a special on-location podcast recording, so what we’re going to do is we’re going to break this down into part one and part two. So we’re going to call an end to part one there, and we’ll look forward to seeing you for part two.

Adam Smith:

And so just to finish up here today, I’d like to once again thank Hilary, Jayne, and Chris, our panellists, and I’d also like to thank Piers Kotting and the University of Exeter Medical School for hosting us today. If you’ve got anything to add on this topic, please do post your comments in the forum on our website or drop us a line on Twitter using #ECRDementia, and please do remember to subscribe to this podcast through SoundCloud and iTunes. So as I said, we’re going to carry on recording, so please come back for part two of this podcast when we’ll carry on the discussion. 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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