What do researchers need to know? Advice from people living with dementia – Part 2

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 back for part two of our special on location pod cast recording for the NIHR Dementia Researcher website. As I mentioned last week, it’s special because the fantastic Exeter University Medical School is hosting us today, because this week I’m joined by three inspirational individuals who face the realities of living with dementia in their everyday life.

Adam Smith:

This is part two, we’re carrying on the discussion from last time, and I’m joined today by Hilary Doxford, Jayne Goodrick and Chris Roberts who are going to talk to us today about their experiences of participating in research studies, what advice they’d have for early career researchers, and what they’d like to see improved and what they think we do well. And, also as well, just to talk about what inspired them to become involved in research, so thank you very much and welcome back Hilary, Jayne and Chris.

Adam Smith:

So, you’ve all participated in studies yourself, obviously some of these things are personal to you and I don’t expect you to answer, but has anybody done some drug trials? Hilary has been in a drug trial.

Hilary Doxford:

I have, actually it was the first bit of research I got involved in after I was diagnosed, but it was for a repurposed drug, so it was testing a blood pressure drug to see if it helps slow down the progression of dementia.

Hilary Doxford:

People have said to me, “Weren’t you worried about getting involved in a drug trial?” I wasn’t, partly because when you get diagnosed and there is no cure at the moment, you are grasping at straws, you are looking for answers, you are looking for hope that Chris was talking about earlier, and at that point in time I’d pretty much had taken or done anything that anybody asked me to.

Adam Smith:

Well people think of tablets as like, you go to the doctors and that’s a big issue isn’t it? If people don’t come away with a prescription or a tablet that they think that haven’t actually gotten their fair share. I guess I can see that people might expect that a drug is going to fix this probably more so than certain therapies and things. I’m not saying it’s right, I’m just saying I can see that.

Hilary Doxford:

People can, people are so surprised, who don’t know about dementia, are really surprised that there is nothing at the moment apart from a few drugs that have slowed things down a little bit.

Adam Smith:

For a short time, yeah.

Hilary Doxford:

So, yeah, so I was on that for two years, and I never got the feedback. I still don’t know what the outcome of that, I think it’s still going.

Adam Smith:

I mean it’s possible that it’s still running.

Hilary Doxford:

It is still running, but I’ve had nothing.

Adam Smith:

But at least a progress report would’ve been nice wouldn’t it?

Hilary Doxford:

That’s five years ago.

Adam Smith:

So, drug trials notoriously involve quite a lot of visits don’t they? I mean not just in terms of the initial screening, but then also in the follow up, and in the progress and everything else. So, thinking about the actual visit and your interaction with the researchers there, was there anything particularly that you thought they did really well? Or, anything that they could’ve maybe done better? Because, that can be translated I think between anybody visiting to undertake some kind of procedure that there’s something to be learnt from that.

Hilary Doxford:

Everybody that I met on that trail was a lovely person, and they were so passionate about what they were doing, it was really nice to be involved in it. I had a totally good experience there, but I think one of things was, it did give me hope, it gave me a purpose again, it gave me a value again. A lot of people with dementia, you suddenly think I’m just going to be a burden on society, on my partner, what contribution can I make? So actually giving us opportunities like that, it does give us a chance to make us feel valued again.

Hilary Doxford:

The visits for me, as I am at the moment, are not onerous, it’s fine. But, I know of other people who were involved in trials that just getting to, I’ve forgotten what it’s called, wherever they do the testing, can be difficult for people especially if they need a carer with them. There’s all sorts of logistical things that often get overlooked. At the moment, I’m okay or Peter will take me, but a lot of researchers I think forget about just how hard it can be for somebody with dementia to get from A to B, to deal with all the newness of a building they’re in. They’re often asked to do a whole raft of tests in one day.

Adam Smith:

That’s exhausting isn’t it?

Hilary Doxford:

I can still cope with it, but I know a lot of people can’t, and you’re actually jeopardizing your results by not designing the interactions to take into account the needs of people.

Adam Smith:

I think that’s the balancer isn’t it? Because if you’re bringing somebody from far away, or it’s challenging, there’s the risk that you try to cram too much into one day. Whilst it might, I don’t know, be more expensive, or more of an issue, sometimes spacing out the visits and gathering your data over multiple visits might actually kind of-

Hilary Doxford:

Cost should not be the driver, good quality research and good quality results have to be the driver, and if it costs you more to get that then you factor that in, I really think.

Jayne Goodrick:

As Hilary said, they’re doing this research on people with dementia, without taking into account these people have dementia. So, it’s a lack of knowledge of dementia. They may know everything about the medical side, but the actual way that dementia effects people.

Chris Roberts:

I think it’s much easier for a lot of things to be done in their own home, in their own environment, because there’s no stress, because stress plays such a big part in how your dementia affects you, anxiety.

Adam Smith:

That’s a good, again I’m gathering a list of top tips here, so also as well consider the place where you do this. So, if it’s possible that this is something that can happen, in somebody’s own home.

Chris Roberts:

The more informal the better. The more formal, it’s terrible.

Hilary Doxford:

The more familiar, familiarity really helps people with dementia.

Adam Smith:

I know studies vary, but it’s quite often, I mean I’ve participated in a study myself, is there’s only one or two people. I think if it’s a short screening, but quite often it’s an entire day will be dedicated onto that screening for that one person, or two people that are going to come in for cognition tests and then move on, so-

Jayne Goodrick:

But what must also be taken into account with that, is it’s not just that day of the screening tests, the knock on effect is certainly going to go on into the evening, and the next day, and possibly even the day after that, so this has to be considered because a person with dementia doesn’t know that until they’ve participated in the study, gone along to the first day’s screening, done all this raft of tests-

Chris Roberts:

And the traveling home.

Jayne Goodrick:

And the travelling home, and then all of a sudden, they’re committed to it, and they want to help, but it is having a detrimental effect on their day.

Chris Roberts:

One day can change someone’s life for three or four days afterwards, because of all the stress and anxiety.

Jayne Goodrick:

And tightness.

Chris Roberts:

And, the hard work and tightness.

Adam Smith:

Clearly you can’t take an MRI machine, I mean I know that you can get mobile MRI scanners, I don’t know if your street’s big enough to park one up.

Chris Roberts:

But if you can do something very easily by just going yourself to visit them.

Hilary Doxford:

The conative tests can be done at home, no problem and they are so often done alongside the clinical tests.

Chris Roberts:

Yep, surveys.

Hilary Doxford:

And they also often do the conative tests at the end of the day, it’s silly. Do it first because I can go and lie in a scanner at the end of the day and I can actually have a sleep in there if I want.

Chris Roberts:

Plan it better.

Adam Smith:

Is that because some of the blood tests and things that they might do in the morning will be because they want you to be a fasted blood test, so they come in and do that first and then do the conative? Yeah.

Hilary Doxford:

Maybe ask the question, what’s best for the person with dementia? And if that then jeopardizes the results, okay maybe ask the person with dementia to do the compromise. But at the moment, it always seems to be the person with dementia that’s been compromised rather than perhaps making it a bit harder for the researchers to do their piece of work, it’s [crosstalk 00:08:44].

Jayne Goodrick:

The person with dementia is fitting into their set up, their schedule.

Hilary Doxford:

Yes.

Chris Roberts:

What is wrong with showing me what’s going to be done on that day, and saying “And, what would be best for you?” [crosstalk 00:08:57].

Adam Smith:

Actually, can I capture that, that’s a really good idea, so I think there’s a couple of things here is to consider doing things away from the, wherever it’s most convenient, not necessarily in the hospital. Also, as well, don’t necessarily … I mean obviously they have to think carefully about arranging different schedules around different people and how that might affect the consistency of the results. But, where that’s not necessarily a big factor, potentially structuring how you gather the information from somebody around them rather than … I mean it’s the same in the NHS isn’t it, that person centred care, this is like person centred research.

Chris Roberts:

So any brain work, any thinking has to be done earlier than later.

Adam Smith:

Right, so that’s another key one.

Jayne Goodrick:

But, even if they can’t change it, if they’ve given some thought to can we change it? Is there a better way of doing this? And, they don’t come up anything better, at least they’ve given it the thought. When Chris was going through his diagnosis he was having psychology testing.

Chris Roberts:

Psychiatric.

Jayne Goodrick:

No, psychology, it was a psychologist sessions, and he was getting tired and she said, “Come back next week.” And I said, “No, no, let’s push on.” Because, I wanted to, I suppose, to have assessed how advanced Chris was, and she said “No. What we want is Chris at his optimum so that, that’s his optimum, and then we’ve got a very optimum base line to see where he goes further on.” That’s exactly what the researchers need, because if one day Chris is at his optimum, but the next time they go and he’s much lower, because he’s tired, because he’s had a difficult journey, because they’ve done all the tests beforehand, they’re not going to compare like for like, so that will skew the results as Hilary said.

Adam Smith:

So, where practical, certainly, I mean I’m almost giving it as a given here, that there needs to be good-

Chris Roberts:

Discussion.

Adam Smith:

What we define as patient public involvement in advance. But, before you agree to anything, you should certainly have had some input into that stage. But then, in delivery, considering the place where it happens, trying to organize potentially were appropriate, organize the research around the person, and take their input into that as well.

Adam Smith:

Obviously, because our audience for this podcast is so vast from people who are going to do this via a survey and not even be there, to people who are going to bring in multiple visits and people in the lab, I suppose I mean we could talk all day, but then there’s things like … And again, I don’t think there’s necessarily an individual reply on this about whether you like to do things remotely, electronically, via email or hard copy through the post, I think I’m probably along the lines of saying you have to accommodate for them, not everybody is going to be on the internet.

Chris Roberts:

Just give people the choice. Give people as much information as you can before it even starts and then the people can have the choice and inform you back. If you let people know that they have a choice, they will let you know their opinion.

Adam Smith:

So again, having the ability to engage still, via non electronically.

Chris Roberts:

Absolutely.

Adam Smith:

Talking on the phone still.

Chris Roberts:

Because, depending on what stage you’re at, what support you’ve got, it’s going to vary, so opinions are going to change.

Jayne Goodrick:

And also, it will vary, it will give you a wider cohort of participants, because Hilary can travel on her own, but Chris can’t. So, if Hilary came to the stage where she couldn’t travel, then you’ve lost her from your cohort of participants. So, the more choice you can give, the more options that are available, the better a field you have to get your research participants.

Adam Smith:

I’ve never seen this happen in research, but I mean it happens on Trip Advisor, it happens in so many other things in life now is this kind of review your experience.

Chris Roberts:

Yeah, feedback.

Adam Smith:

Commenting on this is almost trying to do the evaluation, we’ve all been to those conferences now where you get an evaluation form afterwards. I think maybe if there was more evaluation from the first person on to get that feedback straight away to say-

Chris Roberts:

How was that for you?

Adam Smith:

Exactly.

Hilary Doxford:

It’s constructive.

Jayne Goodrick:

Constructive, yes.

Adam Smith:

I mean I know it’s sometimes hard to go back and completely rethink your study, or your ethics and you can’t necessarily make the changes that the feedback would suggest, but inviting that research at least allows you to see how you went.

Hilary Doxford:

[crosstalk 00:13:23].

Chris Roberts:

It’s not very often that I get asked at the end of a research program, could we have done better.

Adam Smith:

Well, and I think we should ask that question, and also as well I think that, that should be in the public domain. If you turn up to some place and they didn’t give you a cup of tea, and they charged you 15 pounds for parking and then kicked you out without never giving you feedback, I’m sure there are no studies that would do that.

Chris Roberts:

Really?

Hilary Doxford:

Really, yeah.

Jayne Goodrick:

You sound like you’re making it up, but you’re not.

Adam Smith:

That is the warning then to the researchers that are going to come in the next round of studies to improve that-

Chris Roberts:

They have to look more at that, before we even leave the house we need to know about parking, we need to know about right, how are you going to get there, who are you coming with? How can we make this better for you?

Adam Smith:

And do you know what? That’s the only way you’re going to try and improve. I hate to say it, but that hotel that’s never done really well on Trip Advisor that then gets some bad reviews, those bad reviews definitely inspire them to improve.

Chris Roberts:

Absolutely.

Adam Smith:

But, remaining positive, I think there’s probably so many good reviews as well. By getting those good reviews, it’s going to help you attract other people.

Jayne Goodrick:

It’s not about meeting people that may get it wrong, because everybody is doing it with the best of intentions.

Chris Roberts:

Absolutely, yep.

Jayne Goodrick:

It’s about getting it right for everybody. We want to get it right for you, because then you’re going to come up with the goods for us that we can have commissioned, and Utopia.

Adam Smith:

And you can use that feedback then to both improve this current study in future studies, but also as well, to encourage others to participate and show that coming along for a day of having a scan to understand something wasn’t a bad experience.

Chris Roberts:

I would encourage everyone to get involved, everyone to get involved, because you’re not just helping yourself, you’re helping maybe your children, and those that come after you.

Jayne Goodrick:

We’ve been precluded from a few studies because of the distance of where we live, and we understand the parameters.

Adam Smith:

But that should be your choice shouldn’t it?

Jayne Goodrick:

But, I understand those parameters.

Chris Roberts:

There’s the costs.

Jayne Goodrick:

And yeah, but it’s not just the cost, it’s the whole logistics thing. We do understand that, but at least-

Chris Roberts:

Give us a choice.

Jayne Goodrick:

Yeah, give us a choice. We might come down the day before at our, not at our own cost, but because we can do that and then we can give you the best.

Chris Roberts:

By giving us the choice, even if we have to pay for the train ourselves, if we have the choice, there’s some research programs, I absolutely want to be there, and I don’t mind paying train fare, the 20 pounds.

Jayne Goodrick:

That’s not saying oh, don’t give us the expenses, because we shouldn’t be out of pocket.

Adam Smith:

No.

Chris Roberts:

No.

Jayne Goodrick:

Because, some people are more able to make those out of pocket expenses, other people can’t and you’re precluding them from research and that must be a big consideration. Give the people a choice, shall I book your train tickets? Or, would you like to book them yourself?

Adam Smith:

I think there’s a difference here between maybe some of the, say the commercial drug trials, because I think the advice there is they need to think more about selecting sites where there are people to participate, rather than necessarily going to the CIs who they’ve got a long standing relationship with.

Jayne Goodrick:

What’s a CI?

Adam Smith:

Sorry, a chief investigator, you tricked me there, going to the chief investigators-

Jayne Goodrick:

Thank you.

Adam Smith:

Where they have a relationship with so that they don’t necessarily just open a site in London, Manchester, Oxford, Cambridge because that’s what … Instead, to look at where the people are, considering your place, which I know is work because there aren’t necessarily the people then in Cardiff or down in other parts of the country that have the time or the expertise to necessarily run that trial.

Chris Roberts:

Well, you could always speak to the people concerned, us, and we will tell you where these groups of people are a lot of the time.

Adam Smith:

So, there’s definitely something for the bigger studies, the bigger studies commercial and non-commercial, to look at where the people are that might want to participate in this, rather than just finding collaborators in that way.

Jayne Goodrick:

Well, you’ve got Join Dementia Research, that really needs boosting.

Adam Smith:

Because I was involved in setting that up, and I think one of the long term aims we always had was that we could use the registration numbers and the information about people in there to influence where research happened in the future. I’ve seen that, I mean Yorkshire has a massive number of volunteers in Join Dementia Research and very few drug trials and we’ve used that a few times to push back and say, “Well, look there’s these people in Yorkshire where we can do that.”

Adam Smith:

We should add that early career researchers who are looking for volunteers can use Join Dementia Research, to find people for free, as long as their study is ethically approved. There’s a form they fill in on the website, joindementiaresearch.nihr.ac.uk.

Chris Roberts:

You’ve also got a lot of groups now as well. There’s a working group in Scotland, there’s working groups in Ireland, there’s working groups in Japan, there’s one just recently formed the three nations working group, that’s Wales, England, Northern Ireland. We are setting up our own groups, we are self-advocacy now. Just speak to one of us and we can always put you in touch. There’s DEET groups, there’s Alzheimer’s society groups all over the country.

Adam Smith:

I mean obviously this talks to a certain type. The studies we’re talking about here that you travel to and that are in certain places, are those probably larger studies that are funded by some of the … I think a lot of the early career researchers that will be listening to this now will be PhD students undertaking research that might only be a few months, or a year and it will be quite localized to look at the people in the community where-

Chris Roberts:

They are.

Adam Smith:

Where they are. I mean obviously, Join Dementia Research we’ve talked about, where else do you think they might go in that local community?

Chris Roberts:

Peer support groups, memory cafés, and it’s not just in the community, you can also do it online, there’s a lot of virtual groups coming online now, there’s loads, there’s international groups in different time zones and things like that. But, there’s also, you go to any local support group and I think there’s a support group in nearly every village and town these days.

Adam Smith:

Yeah, I mean I think they tap into those places where they can come. We’re way, way over time.

Chris Roberts:

Way over time.

Adam Smith:

I think what we’re going to have to do is make this a one hour special.

Chris Roberts:

Part one, part two.

Adam Smith:

We could part one and part two, actually that’s a good idea. I can say at the end, that’s the end of part one, that might be a good idea.

Chris Roberts:

A cliff hanger.

Hilary Doxford:

Just following on from what you were saying about all these community groups in local areas, one of the things that we are really pushing for is about keeping people with dementia in the community, and something like the researchers have a huge opportunity to go out into communities and speak to people. It’s another opportunity to improve lives of people with dementia just by some inclusion and some involvement actually in their community.

Adam Smith:

I mean that assumes that the researcher’s idea of what they want to research and the idea that they’ve got is right. I think before they even arrive at that conclusion, there’s this idea that you could go out and talk to some communities to say, “Look, I’m going to be doing my PhD, it’s basically in the idea of trying to say, help people to live in their own homes for longer, or lead independent lives.” And have a conversation.

Jayne Goodrick:

Or, I’ve got this piece of technology, which I believe will help in this way.

Chris Roberts:

A massive resource in local communities I think are untapped a lot is assisted living, retirement homes and care homes. You’ve got a lot of people sat there, and you’ve got a captive audience.

Jayne Goodrick:

That and also churches.

Adam Smith:

I think the idea is actually, before they even arrive at their decision as to what their research is going to be, is you could go and look around a little bit more, decide actually, what do you think needs to be researched right now? And as you say there, you were talking about use of technologies. Our podcast that we released a little while ago was around using Amazon Echo devices with smart home technology to see-

Chris Roberts:

That’s a great personal assistant.

Adam Smith:

Well, the feedback was it’s definitely quite handy for turning the lights on in the middle of the night, so you don’t have to find the light switch came up as a common one. Timers were used a lot.

Chris Roberts:

To remind you to take something from under the grill.

Jayne Goodrick:

Yeah, Alexia, I’ve put my dinner in the oven, please will you remind me in 30 minutes?

Adam Smith:

Yeah, or people were using timers a lot. But I mean that’s just one area isn’t it that you could’ve used.

Chris Roberts:

And just having a friend to read you a story.

Adam Smith:

Well, they can do that can’t they?

Chris Roberts:

Yes.

Adam Smith:

Alexa can read you a story.

Chris Roberts:

And they don’t argue.

Adam Smith:

Spelling.

Jayne Goodrick:

It’s not taking away from the human touch-

Chris Roberts:

They might laugh at you.

Adam Smith:

Tell you the time.

Jayne Goodrick:

But, it’s bringing you company when you don’t have that human contact. It’s late at night, your family are all at home with their children, whatever, it’s brilliant.

Adam Smith:

It’s got the phone in, you can ring each other now as well.

Chris Roberts:

Is this another part of it?

Adam Smith:

Amazon, we’re looking for sponsorship for this podcast if you’d like to-

Jayne Goodrick:

Other gadgets are available.

Chris Roberts:

Those things are available, Google and-

Adam Smith:

Yeah Google make one and Apple make one as well, now as well.

Chris Roberts:

We can help.

Jayne Goodrick:

And many more probably that we’ve never heard of, just to cover all options.

Adam Smith:

So we’re 50 minutes in.

Chris Roberts:

50?

Adam Smith:

50 minutes now, I’m going to do a quick recap and then I’m going to ask you for your last thoughts. So, in my notes I’ve been taking throughout here, apologies for the keyboard clicks, we talked first of all about feedback being really important throughout the process of the study. Actually, we should probably do this in order, so we’ve talked already at the start about maybe turning to people with dementia and carers for their ideas for what would be good to research, engaging with the local communities when you’re looking for recruitment, as well as national ones like Join Dementia Research.

Chris Roberts:

While you’re on that subject, do not, not engage with my relatives, because they know me better than anybody. If you just talk to them, you’ll get it right for me.

Adam Smith:

Yep.

Chris Roberts:

There’s expertise that Jayne has that she’ll have no communication issues about dementia, they’re also experienced, they’re effected by dementia.

Adam Smith:

The materials they produce need to be well written, simple, include a glossary.

Chris Roberts:

Accessible.

Adam Smith:

Would be quite helpful in future particularly as well that, that could be online, off line, and don’t assume that there isn’t a level of technical knowledge amongst the people you’re aiming to support, you should publish in both ways to accommodate for those that do and for those that don’t. I’m trying to remember the process here, so site visits-

Chris Roberts:

We’re relying on you.

Adam Smith:

Site visits are important too, we talked about trying to make sure we could potentially wrap the research around the person to fit in with their life, where that’s appropriate and possible.

Chris Roberts:

Get the environment right.

Adam Smith:

And, if you can’t avoid the need to come into the hospital, making sure those details are taken care of where you going to park, how the day is structured around the person, how the costs of that are met. Don’t assume that people from further away won’t be willing to do it, although it’s not ideal, they should potentially at least have the choice.

Chris Roberts:

Choice.

Adam Smith:

Then, once your research has been delivered, trying to make sure you feedback throughout the process, even if it’s just progress reports, and then when you publish in the end, making sure that is at least shared with everybody in there, in the public space. And, also as well that there’s a plan for how you’re going to implement and disseminate that research finding you do, that this shouldn’t be a nice PhD that sits on a shelf somewhere, where you can, you translate that into some reality.

Adam Smith:

Did I sum everything up? Did I miss anything? I’m going to go around the table now, then we’ll-

Chris Roberts:

The journey, as soon as I get an email inviting me to take part in a research at a certain time on a certain day, the researchers think that that starts at that time for them, it doesn’t start at that time for them, it starts when I get that notification, so I stress about it day by day. So, anything that can make that easier, would make such a difference.

Adam Smith:

So, I’ve done my bit of a summary, I’m sure I’ve missed, I think we’re going to recommend that everybody should listen to this before they embark on their … But, I’m going to go around the table now, starting with Hilary, for any final thoughts, top tips that we’ve not already covered. What’s your top two things, or top thing and what piece of inspirational advice would you give to early career researchers that are listening.

Hilary Doxford:

Adam, asking me two questions, somebody with dementia, needing to come up with an answer like that.

Adam Smith:

I know I should break this down, I’m not taking my own advice.

Hilary Doxford:

All right, top tip.

Adam Smith:

Let’s start with what would be your top tip for a-

Hilary Doxford:

Put yourselves in our shoes.

Adam Smith:

That’s a good top tip.

Hilary Doxford:

I really feel that, and I’m so guilty of it myself of not having done that. I used to make horrendous assumptions about what people wanted, what people could or could not do, never once put myself in their shoes. And, if you just stop and think, if my brain wasn’t working like it does, what would that mean to me? If my brain was going so slow that by the time you finish your sentence, I’m still processing the first two or three words of that sentence, how would you deal with that? I think that would be my top tip, just stand in our shoes, try and stand in our shoes and then decide how you would take things forward.

Adam Smith:

That’s definitely important.

Chris Roberts:

Excellent piece of advice.

Adam Smith:

Thank you.

Hilary Doxford:

Thank you Chris.

Chris Roberts:

You’re welcome.

Hilary Doxford:

I’m glad I came up with something.

Adam Smith:

So Chris, if you can lean close to that microphone and give me, you’re next.

Chris Roberts:

Talk to me, just ask. But, find out a little bit about me as well and what I need, and then I can help you get what you need. Communicate.

Adam Smith:

We can have a hashtag, ask Chris.

Chris Roberts:

Just ask, I’ll say no.

Adam Smith:

Well, that’s an interesting idea actually, that’s something else we could potentially do in the future is we could run some kind of virtual advisory thing where any early career researchers that just want to have a place where we could organize some-

Chris Roberts:

Run it past the other [crosstalk 00:27:59].

Adam Smith:

Do they call it tweet ups? Are they called tweet ups? Twitter chats?

Hilary Doxford:

Chris is the expert on that, he’s so good. I’m rubbish.

Adam Smith:

Social media.

Hilary Doxford:

I nearly said a bad word then.

Adam Smith:

You can, that’s fine.

Hilary Doxford:

Can I?

Adam Smith:

You can swear and everything, should they not have made that clear at the start?

Hilary Doxford:

Shit.

Jayne Goodrick:

That’s enough.

Adam Smith:

Jayne?

Jayne Goodrick:

I suppose my top tip is don’t let the barriers put you off. If there’s a barrier there, there’s a way around it. The barrier can be something as much as your fear of engaging with somebody with dementia, your fear of bringing a certain topic up, don’t let the barriers put you off, find a way around them. Don’t let the gatekeepers block you, and the gatekeepers can be somebody like me, it’s like oh no, he wouldn’t want to, no he wouldn’t be able to be involved in that. Ask the person, not just the carer. Feel the fear and do it anyway, but be as passionate about your research as we are, because if you’re not passionate, it’s not going to be any good.

Chris Roberts:

Don’t make assumptions.

Hilary Doxford:

Yeah, I’m not speaking on behalf of us, but I just want to thank everybody that’s listened to this, and thank them for what they’re doing.

Chris Roberts:

Absolutely.

Jayne Goodrick:

Absolutely.

Hilary Doxford:

Without them doing it, we’re going nowhere nice in the near future.

Chris Roberts:

Everything that’s done on our behalf, you don’t get the thanks that you deserve. We thoroughly appreciate everything that’s done.

Hilary Doxford:

And we’ve been nit-picking here, don’t forget all the good stuff that’s happened.

Adam Smith:

I think for every, I mean this isn’t the advice that we’re giving out today, isn’t to say that this isn’t already happening in places around the country.

Chris Roberts:

For sure.

Jayne Goodrick:

Yes.

Adam Smith:

I mean there’s lots of examples of this happening, this is advice for those that are maybe starting out on their study, or are getting to the point could.

Jayne Goodrick:

That’s how we’re able to give you the advice, because we have people come from Cardiff to spend 10 minutes with us in North Wales which is a four and a half hour, God forsaken train journey, to take a sample of blood and go back to Cardiff, and we thank them for that.

Adam Smith:

But its nice scenery.

Chris Roberts:

Respect.

Adam Smith:

It’s time to end today’s podcast recording. I’d like to thank our panellists, Hilary, Jayne and Chris. I know that all our panellists are very active on social media, so I’ll share their details with you, you’ll be able to look at their Twitter links below this page.

Chris Roberts:

Just ask.

Adam Smith:

I know that they’re very happy as they said, to answer questions, so we’ll share their details on social media. Thank you also to Piers Kotting and the University of Exeter Medical School for hosting us here today.

Chris Roberts:

Absolutely.

Adam Smith:

If you have anything you’d like to add on this topic, please do, post your comments in the forum on our website, or on below, or you can Tweet us using the hashtag, ECR dementia. Please remember to subscribe to this podcast through Sarah McLeod and iTunes, tell your friends and colleagues and please do leave us a nice review. Thank you very much.

Voice Over:

This was a podcast bought to you by Dementia Researcher, everything you need in one place. Register today at dementiaresearcher.nihr.ac.uk.

END