Podcast – The Study Recruitment Puzzle

Voice Over:

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

Adam Smith:

Hello, and welcome to another episode of the Dementia Researcher Podcast. I’m your host Adam Smith, and I’m thrilled to have you join us for today’s discussion, which we’ve titled The Recruitment Puzzle. Recruiting participants for dementia research studies is often a complex and nuanced endeavour. From ethical considerations to logistical hurdles, researchers face numerous challenges that can significantly impede the progress of valuable studies.

Not only costing money, but also meaning that studies sometimes don’t get the numbers of people they need to ensure they’re valid or at best are delayed, which means we often don’t get to benefit from the results as quickly as we should.

Our guests today come from diverse backgrounds and specialisations, but they all share a dedication to advancing our understanding and treatment of dementia. They’ve all faced the challenges of study recruitment, and so they’re going to share their top tips and provide insights that could be game changers for new and seasoned researchers alike. Study recruitment is a challenge I’ve personally worked on for a number of years, so I’m delighted to be joined by these three researchers who will shed light on their own barriers and discuss how they’ve navigated the challenges in their own work.

So, whether you’re a PhD student, clinical researcher, or working in any other area that needs the involvement of people with lived experience, this show is for you. So, let’s meet our guests. It’s my pleasure to introduce Ellice Parkinson, Dr. Anna Volkmer, and Dr. Megan Rose Readman. Hello.

Dr Anna Volkmer:

Hello.

Ellice Parkinson:

Hi.

Adam Smith:

What you didn’t hear or see if you’re watching or listening is that they’ve just had to sit through me reading that introduction about four times to get it right. You could see them reading along my script as I did it, willing me on to succeed. Thank you all for bearing with me. Why don’t you all introduce yourselves and tell us a little bit about yourselves? Ellice, why don’t you go first?

Ellice Parkinson:

So, I’m Ellice Parkinson. I’m a fourth year PhD researcher, but also a Research Associate at the University of East Anglia. And my research interests are hydration care of people living with dementia.

Adam Smith:

And if you are a few episodes behind, what you do need to do is of course jump back a couple of episodes ago to catch up on Ellice’s brilliant podcast she did with us, hosted by our other guest, Anna, that talks about their work on hydration. Thank you very much for joining us, Ellice. Anna, why don’t you go next.

Dr Anna Volkmer:

Thank you so much, Adam. So hi, everybody. My name is Anna Volkmer. I’m a senior research fellow at University College London and a speech and language therapist. I am actually an NIHR funded advanced fellowship holder, which I should mention. And my research focuses on interventions for people mainly with language-led speech language and communication difficulties in dementia.

Adam Smith:

And of course, Anna is one of our regular bloggers. So if you’d like to know more about not only about her work, but Anna’s blogged for us for a number of years now and has done an amazing job at documenting her career journey from probably about your first year or secondary of your PhD through the PhD years, through that first postdoc, through the viva during the pandemic right up to now and is an inspirational figure in her field. So do go ahead and have a look at some of Anna’s blogs. There’ll be a link to her bio and some of the stuff she’s written for us in the show notes. And last but not least is the incredible Dr. Megan Rose Readman. Hello, Megan.

Dr Megan Rose Readman:

Hello. Thank you so much, Adam. Hi. I’m Megan. I’m a postdoc research fellow at the University of Liverpool and I’m funded by the NIHR, but also the Alzheimer’s Society. So, my research interest lies in the relationship between hearing loss and Lewy pathology dementia, so Parkinson’s, dementia, and dementia with Lewy bodies. So, thank you.

Adam Smith:

I can’t help but feel that all your work is so interconnected between the swallowing and hydration and language and then your work on hearing as well, because if you don’t hear right, you don’t communicate properly. We could do a separate show just on your research topics alone. But thank you very much all of you for joining us today. We’ll stick with recruitment for now. Let’s get through this.

Well, this is such a big topic and there are so many different ways we could approach it, but what I thought I’d like to do is maybe start by talking about why recruitment is difficult. Because in the UK alone, we know we have 800, I don’t know what the latest status is. Is it 850,000 or is it a million? We said 850,000 for a very long time and I feel like the latest figure is a million if you want to go to the charity, quote the charities.

But there’s a million people living with dementia just in the UK alone. And of course, around 100,000 new people diagnosed each year. So, you would imagine that’s a lot of people to participate in research studies. Yet we know from Join Dementia Research, one of the services in the UK that less than 1% of people living with dementia were signed up for their register. So, what you would think might be easy, clearly isn’t. So, let’s first of all just talk about what we think some of the barriers are. Why don’t people want to participate in research? Anna, why don’t they?

Dr Anna Volkmer:

It’s a great question. Clinically, I work in a diagnostic centre, and I have to say, I think when people are being diagnosed, they’ve got so much on their plate. Often that’s the first point. We say, “Blah, blah, blah, you’ve got dementia. Here’s a bit of speech therapy, maybe OT or blah, blah, blah, oh, and research.” And people say, “Whoa, whoa, whoa. Actually, do you know what? I need to take one thing at a time.” So, I think actually sometimes we bombard people with research, and it doesn’t necessarily mean they want to sign up.

And the other thing I personally have found is that perhaps people are particularly interested in signing up for research focused on a cure, but maybe the idea of searching or signing up for research that isn’t focused on cure, that may be on care more is a bit trickier. And then of course, I should say one more thing and that is that I have particularly found people don’t want to sign up because perhaps they’ve got so many other things going on in their life they’re juggling. These are adults who’ve got lots of things to do often that they don’t necessarily have, even if they want to, time can be, it can be tricky.

Adam Smith:

I should say, one of the reasons why I know so much about this topic is because one of the first things I worked on when I joined UCL and the NIHR was on addressing this exact question about study recruitment problems. And we created something called Join Dementia Research, which is a register. In doing that we had lots of conversations to understand why people don’t sign up and what they did. And there was a lot of discussion at that time about at what point should you have a conversation about research. And so many views that it should this be as early on as possible at the point of diagnosis, or should it be later?

One of the problems of course, is that post-diagnosis, it’s not like they’re coming back to hospital for regular visits and follow-ups. The dementia care pathway in the UK is a discharge post-diagnostic back into the care of your GP until things get worse or until things change. So, it’s not like there are many other touch points with healthcare specifically about your dementia to move that conversation too. So, I can see that. What about from your perspective, Megan?

Dr Megan Rose Readman:

I think one thing that I’ve picked up on is a lot of individual, particularly young onset, have a bit of difficulty coming to terms with the diagnosis in the first instance. So, like you’re saying, what Anna was saying, that you’re giving a diagnosis and throwing research straight at that time. Sometimes I’ve noticed in the people I’ve worked with, they’ve wanted to take a hot second to actually process what has just been told, what they’ve just been through before being like, “Okay, now I’m ready. I accept what I’m going through. Now I’ll consider research.

I think that’s one of the biggest things I’ve noticed, particularly in younger onset or people who weren’t necessarily, it was a bit of a curveball when they found out.

Adam Smith:

Do you think also as well it’s something at that time anyway, maybe slightly changing now, but also as well the nature of the research that was taking place, because you can’t talk about this and not talk about cancer, where clinical trials aren’t almost thought of as a separate study to recruit to. They’re part of the care pathway. When you’re offered a treatment, it’s like, would you like this mainstream treatment or would you like this experimental treatment? Not as a fine, it’s a clinical trial but it’s not even presented like it’s a separate trial.

It’s like these are your participants in this trial or getting this treatment are your options. I suppose we haven’t had the luxury in dementia in the past to say, “Would you like the regulatory treatment or the experimental treatment?” Of course, that might be changing now. Well, it won’t change because we haven’t got a regular treatment right now, have we? We’ve got the, would you like the Cholinesterase inhibitor and if you’re lucky the behavioural CBT or something like that, whatever else you are offered. But I guess that could be one of the reasons why not treated in the same way. Ellice?

Ellice Parkinson:

It’s interesting listening to that because I don’t think it’s like a one size fits all answer. So, in Huntington’s disease, when someone is diagnosed with Huntington’s disease, so it’s genetic, there’s a familial inheritance with the Huntington genes. So generally, families are aware of this, and generations go by and they’re something that the family are well aware of. And in the care for people living with Huntington’s disease, they are seen in clinic mostly, not everyone, some people may choose not to, mostly once a year. So, there is that follow up.

And so, I’m listening to you all with maybe that’s the missing link. Maybe that is a missing link because in Huntington’s there’s quite a lot of investment from the Huntington’s disease community in research. It is a big part of that community whether or not that’s because Huntington’s is specific in the fact that they’ve already identified the genes, so they know there’s the problem, let’s work on it. Whereas obviously with hundreds of dementias we’re still trying to understand, aren’t we? A very long-winded way of saying is actually there is, for that specific type of dementia, there is a want from the community to mostly take part in research.

Adam Smith:

I think maybe as well we need to think differently between the difference between clinical research, drug trials, and some of the qualitative research that takes place. I suppose in Huntington’s for example, I guess somebody with Huntington’s would usually be diagnosed in a neurology service of which there are now specially centres for neurology, aren’t there? There are fewer neurology specialist centres than there are the 200 memory clinics that are-

Ellice Parkinson:

Both. So, neurology and neuropsychiatry. So, I was based in a mental health hospital and that was where we saw people with their diagnoses.

Adam Smith:

I know from talking, so your average memory clinic, so this is talking specifically about the UK. So, if you’re listening overseas, we’ll try and broaden this out to make sure it’s relevant to you as well. But in the National Health Service in the UK, the traditional pathway for dementia diagnosis is you have mental health trusts. They have community mental health teams and specialist memory services. Each trust might have three, four, five, six of these services that cover the region that they are. That their GPs will refer to one of them and there are about 200 of these services across the UK.

People turn up, they do their tests, and they have maybe one to three visits. There may or may not be a scan, there may or may not be some further testing. There’d probably usually been some testing before they get referred there to discount other potential neurological problems.

And that’s where research is often discussed at that point there. But of course, the people working there might not be aware of the research that’s going on in their trust or at best they’ll only be aware of the research that’s going on in their trust. They might not even be aware of the research that’s going on across all of their trust, but just the bit of their trust that they’re involved with or the people they work for maybe. So, you can see how that’s a barrier as well. If the people who have the interaction with the people don’t even know there’s a study going on, of course, that’s going to be an issue, isn’t it?

And how likely is it, Anna, that researchers have direct interaction with patients during that care pathway too?

Dr Anna Volkmer:

Well, it’s a really good question. I have to say I think we are still with health professional, and I am a health professional as a speech and language therapist, I think we take a really paternalistic view when we’re working with dementia clients. People living with dementia, we’re much more worried about them being vulnerable, maybe lacking capacity, maybe not being the right time, maybe that they’ve got too much on their plate. So, we often gatekeep, I think professionals will gatekeep even if they know about stuff. So, I think that’s almost an initial boundary or we think, oh, English isn’t their first language or oh, there’s something that we do where we think, oh, this isn’t a good option. I’m not even going to burden them with this decision.

So, we are already taking a paternalistic view. And then there’s that second layer which is like you say, I don’t think we’re that used to because there’s not been lots of trials in dementia then we are not used to offering this type of research.

So, I suspect that when we are offering research, if we were offering research that was trial based like the cancer stuff to people with capacity, we might find that it would be a more fluent pathway. But we are offering people often things that are, like you say, qualitative. We want to hear about your opinions and your experiences, or we might be offering them something slightly more investigative where we put them through this rigorous battery of assessments and make them sit in an MRI machine for hours. And that doesn’t sound particularly inviting.

Adam Smith:

Not very attractive, is it? Before we started, I wrote out what I thought was a bit of a long list and tell me if you think I’ve missed anything. I think we’ve touched on all of these actually.

Dr Anna Volkmer:

I think we have.

Adam Smith:

Tell me if you think I’ve missed anything. So, lack of awareness. I guess you don’t know what you don’t know. And if you turn up, get your diagnosis if nobody mentions it to you. I know from talking to some previous guests like Chris Roberts and others, the only way they ever found out is they went home and started to Google and that’s what they found. So, a lack of awareness. People genuinely might be nervous or worried.

There is still this kind of, I think it’s improving, but there is still this fear of being treated a bit like some kind of lab rabbit, a Guinea pig, that’s the word I’m looking for. Lab rat, Guinea pig that you don’t want experiments done to you and maybe a misconception that all research trials are drug studies.

I think people are one way or the other, either person sign up and say, “Give me the drugs. I want the drug studies.” Because they believe that’s what will really help them. Or people are scared and don’t want drug studies, but they’d be happy to chat about their experiences. So nervous or worried about the research. Too much trouble. I mean, I agree with this. I think if your dementia has progressed by the time you’re even getting out of the house, going to the supermarket, doing day-to-day normal activities is tricky.

Let alone then trying to make multiple special visits to a local hospital going through invasive procedures, I can see that being something you’d be wary of. And so, you might never go to research at all. So that’s about the too much trouble study activity might be too hard. They want too much. There are 10 visits over two years or lots of things you have to do. Gatekeepers. I think we touched on there as well, didn’t we?

So, one of my other projects has been care home research and I remember then often we talked about the care homes actually didn’t want their residents to participate in studies. It was just too much trouble. They just wanted everybody to nicely have a routine. And when you started to mix up that routine by saying, right, we are going to have a nurse come into the hospital, it also felt they were a bit nervous about inviting external people who might judge them in some way. So, care homes often were barriers.

Clinicians themselves, because if it’s not a trial they’re doing, why would I go to the trouble of promoting a trial for somebody else? Sorry, Anna, you were going to add to that.

Dr Anna Volkmer:

I want to add ethics boards.

Adam Smith:

I haven’t got it on this list. You’re right. Let me get through this and you can come back to that.

Dr Anna Volkmer:

Sorry. Sorry.

Adam Smith:

No, no, no, you’re absolutely right though. And of course, PhD students. So, if you’re a qualitative PhD student, so say Ellice, if you’d done your hydration project as a University of East Anglia PhD student based in the university, you just wouldn’t have any day-to-day interaction with recruit people. Would you? So, when recruitment starts, it’s like, okay, now I’ve got to go find, I’m not situated in a place or interact with people, so I’ve got to go find them.

Ellice Parkinson:

That’s exactly what happened.

Adam Smith:

I think also as well, we’re a bit over reliant on digital technologies. I think we’ve all just become a bit of a used to, I’m going to tweet this and wait for replies, or I think we’ve moved away from good old, there’s a place for good old-fashioned newsletters and snail mail and posters. I’m going to say that Ellice has done some amazing posters for hydration recently.

Language barriers as I think Anna touched on as well. I mean we constantly highlight the fact that we have a terrible lack of diversity in our research study recruitment, and we keep saying we’ll do something about it and then we keep doing everything in English and trying to recruit in the same way. So, language barriers. And then increasingly this need for very specific people, which I think is also if you are looking for somebody who’s very specific or for example doesn’t even have symptoms yet because your trial is on prevention or diet or exercise in somebody who’s at high risk of dementia.

They’re probably not even interacting with healthcare. How do you find them? And in the states or in other countries, you can advertise, you can put TV adverts on there. In the UK, we don’t have television adverts for clinical trials. We don’t have radio adverts or posters on buses to say come and do this trial. Maybe we should, but ethics might be an issue for that. Anna, you were going to add to our list.

Dr Anna Volkmer:

Sorry. I came in vigorously with ethics, didn’t I? I’ve had these experiences. I do a lot of video recording even in intervention trials and I do it in almost all the studies I do. Videoing people and ethics boards, they’re always horrified. You couldn’t possibly video somebody with dementia. How horrific. And then that results in a very long discussion or the other side of the coin I often have because working with people with speech language and communication difficulties, it’s a bit like going back to those language barriers. They say,

“Well, people can’t possibly understand what you want them to do.” And I think that happens at the ethics board stage, but also happens probably at many stages. In fact, I think a lot of people get excluded from studies just in case they have a speech language or communication difficulty. So, consent, I wanted to add consent to that list because that can be a real barrier.

Adam Smith:

So, my next question in this list was what are the common misconceptions or fears that potential participants have? But I can’t help but think that we’ve actually already answered that question. So, what I will ask, and I’m going to come to you, Ellice, how does recruitment differ when you’re looking for people living with dementia or care home residents or people at risk of dementia? How does it differ depending on those different people you’re looking for?

Ellice Parkinson:

It’s such a big question. I think it comes to where you, I don’t know if look is the right word, but where you look for those people. So going back to the ethics thing, I had pushback from the Research Ethics Committee about my care home ethnography and even though I use a lot of public partner involvement in designing my care home ethnography. And they said, “Well, why didn’t you get residents with dementia for your public partner involvement designing the study?” At the time it was during COVID, it was so difficult. It comes back to that gatekeeper access.

It was so difficult to even get access into a care home, let alone get it for PPR. I could barely get it for my actual study. So, it comes back to where you’re looking for people. So, I’ve used the Alzheimer’s Research Network previously for public partner involvement. They’re amazing.

Adam Smith:

That’s the Alzheimer’s society one.

Ellice Parkinson:

Sorry, outside Society Research Network, but that was family caregivers. So even though I put the answer out to anyone who’s been affected by dementia and people can be affected in lots of different ways, it was family caregivers who came forward for that. I’ve opened up public partner involvement for other things and it’s always been people who have not had dementia themselves. Now that’s my problem, isn’t it? That I’m not finding those people. So, Twitter adverts may or may not be working and although I did have people who had a diagnosis of dementia interested in that in terms of following that up, maybe my workshops weren’t accessible enough. Having said that-

Adam Smith:

Can I interrupt you and ask you a question there, Ellice? At the point when you were study design, because I’ve spoken to a lot of people over the years who’ve been telling me the study they’re going to do and then they’ve told me how many people they’re looking for and where they’re going to get them from and I’ve immediately gone, “Really? You think? Wow, that’s a high number and you’re going to get those in six months. Oh, wow. Well, good luck with that.” I couldn’t help but think who gave that advice that that was going to be feasible. Where do you get your number?

I mean, I can understand you’ve got what you think is the right number to power your study or what would be a good number, but who gives you advice on recruitment.

Ellice Parkinson:

So once again, it comes to that quantitative versus qualitative, doesn’t it? Because in qualitative we don’t really worry as much about numbers, but still the ethics boards, they still like, even a qualitative protocol, they still want you to tell them how many people you’re going to recruit. So, I ended up for my care home ethnography, I had five care home residents who each had a diagnosis of dementia involved in my ethnography and then 17 staff in varying roles. That was incredible. That was amazing because there was a point, certainly within the first couple of months I thought I’m probably not going to have any participants.

Adam Smith:

So, did you decide on that number?

Ellice Parkinson:

No. I didn’t decide on a number. I fed the rec a number that looked lovely, which is probably about 20.

Adam Smith:

And they said OKAY. What about you Megan? How do you come up with the numbers when you into recruitment? Do you get any advice?

Dr Megan Rose Readman:

Yeah. It’s very much what Ellice said. Coming more from a comp background. It’s power analyses galore like G power statistics hardcore. But for my current sort of interview based, I entirely gave everything and relied upon my team, people who’ve been like Clarissa specifically, I went off what she thought was feasible.

Adam Smith:

So, getting advice from seasoned researchers who’ve worked in the field who said, “Right, that’s a realistic number. This is how long it’ll take.”

Dr Megan Rose Readman:

Yeah.

Adam Smith:

Anna.

Dr Megan Rose Readman:

Exactly.

Dr Anna Volkmer:

I was just going to add to that. My PhD work was a pilot study, so we didn’t know how many people we needed for a power calculation. So, the other thing we did, which I think maybe is the pre-step, is that we actually said how many people with dementia does this clinic get referred? Okay. So, I was talking to speech therapists, I was saying, “How many high speech therapists, how many people with dementia do you get in your caseload?” And then there’s actually data in the research about previous speech that I actually looked at speech therapy studies to see how many people within of an average caseload, what percentage would they recruit. So that’s how I made my very pragmatic decisions.

Adam Smith:

That’s good. But you can see all this thinking behind that, how many referrals do we get? What percentage of people are likely to say yes? How many can we do each month? And so, this is how many we’ll get over time.

Dr Anna Volkmer:

But it is dependent. Then of course if you’re gathering data in a clinical setting on that clinic remaining as it is. So, for example, if unfortunately, the staff leave or there’s another issue that’s out of your control and that clinic somehow doesn’t continue recruiting people, your numbers are due.

Adam Smith:

And this is where I think Ellice, you made the point about the Alzheimer’s Society’s Research Network. I think having that, we’ll put this plug in, it’s essential. Most funders fundamentally require this anyway, which is that patient and public involvement in study design and that the expertise you’ll get from that won’t just be that you should change the phrasing of this or the colour of that or the intervention you’re planning needs a tweak. They can also, they’ve got a lot of experience in that network. The people who are going to give you advice are also going to say, that’s a lot of people or you could get more.

I think it’s so important to design your study from the outset in a way that’s deliverable I think is important.

And of course, your university should have an office, a research design service, an office that’ll give advice on that. Okay, but that’s enough. We’ve talked about the problems. We know what the problems are now. We’ve talked about the barriers, and I think in this next segment we’re going to move on to talk about solutions.

Okay, we’re back and we’re going to talk about solutions in this section. So how do you initially identify the approach for potential recruitment? All three of you have recruited to trials recently. Megan, I know you are in the middle of recruitment right now, so I’m going to come to you first. How do you initially identify how you’re going to recruit?

Dr Megan Rose Readman:

It might not necessarily be the best way. I’m not going to lie.

Adam Smith:

Well, give us an overview. Let’s talk about real life now unless you can’t. So, what’s the study? What kind of people are you looking for right now?

Dr Megan Rose Readman:

So, I’m currently looking for people living with either Parkinson’s, dementia or dementia with Lewy bodies who also have hearing loss or people who care for people who have Parkinson’s or Lewy body dementia who has hearing loss. So immediately like you were saying before [inaudible 00:29:21].

Adam Smith:

And you’re university-based?

Dr Megan Rose Readman:

Yes.

Adam Smith:

You’re not in a clinical setting, so university-based and what do you need those people to do?

Dr Megan Rose Readman:

It’s an interview study, so it’s just a short interview about their experiences of hearing loss and how it may be affecting their dementia.

Adam Smith:

What did you put in your plan for how are you going to find those people?

Dr Megan Rose Readman:

So I went for a multipronged approach, shall we say. So, I’m using the Join Dementia Research platform as one method. I have admittedly done what you have said, slightly over relied on technology like online adverts and things, but I think for me personally, my most successful line of recruitment is I have spent quite a few years now going to support cafes for people with Parkinson’s, so they know me really well. We just have a general chit-chat and we’ve got rid of all those barriers that you’ve spoke about before. So, when I go and chat to them and mention the studies straight away, all those barriers don’t exist. It’s just like two friends. So that has definitely been my most lucrative.

Adam Smith:

So local support groups. You mentioned the Join Dementia. So joindementia.research.nihr.ac.uk is a service free for all UK researchers that will allow you to recruit to any ethically approved study, even if you’re a PhD student or you’re a drug trial. So, you can go have a look at that. If you’re in the states, there’s something equivalent, which is called Trial Match. If you’re in Australia, they’ve got step up for dementia research. There’s one in Ireland as well, and different countries have their versions of this. But essentially one of the great things about that is essentially is anybody can sign up to it at any time and say I’m available for research.

So back to the point earlier about when to talk about research or if people go away and Google it, that you can sign up to that later. It takes away that urgency. So that’s that. Social, you said digital products as well. So, was that Twitter, Instagram, Facebook?

Dr Megan Rose Readman:

Twitter, and then some support groups that I’m part of on Facebook.

Adam Smith:

And then the face-to-face groups.

Dr Megan Rose Readman:

Yeah. By far the face-to-face is definitely the best way because you’re reaching people that you might not necessarily reach online, and it is just you can get a general feel for the what’s actually going to happen.

Adam Smith:

So plain sailing then. You’ve got everybody. No?

Dr Megan Rose Readman:

It’s no. No. It’s not easy. It’s not easy at all and it is very time-consuming, but I do strongly think that one interview that you do makes up for all of the aggro.

Adam Smith:

I can understand.

Dr Megan Rose Readman:

But I just have to keep trying. I’m not going to stop.

Adam Smith:

That’s okay. Well, let’s go around and look at the most recent study you’ve worked on, everybody’s approaches and then we’ll pick up on where we think the gaps were. Oh, I’ll tell you what as the recruitment, no, I’m not an expert, but Ellice, why don’t you come next?

Ellice Parkinson:

I think once again, it’s interesting because of study design. So, each of these is so different depending on what kind of study you’re working on. But my most recent was care home ethnography, in which case I had to have gatekeeper access before I could get in, which relied on me putting an advert out to Norfolk & Suffolk Care E-Bulletin to see if anyone wanted to host and also me contacting lots of care homes saying, do you want to host this research?

Adam Smith:

So, you had to go to care homes to get their permission to approach their residents?

Ellice Parkinson:

To even, yeah, I had to then get a site agreement in place with the university and what ended up being a single care home before I could even get to residents. And then I had posters up in the care home. I asked the care home manager to send out information to all the families to make them aware that one, I’m going to be in the home anyway, but two, if they wanted to take part in the research and I wouldn’t be obviously recording their data unless they provided consent. I didn’t have to. I chose to go to staff meetings, family meetings, resident meetings to make them aware of my research.

I did that before data collection started as just an introduction. I dropped into their empty meetings online as well and then I had what’s called a hanging out period in ethnographies. It’s like a familiarisation period of a few weeks. So, people just get to know me, get to know who I am, my faces around the care home at this point. And then even after that then we start having a conversation about giving information sheets out, leaving a pile by staff paperwork and let families have information sheets and then recruitment could even possibly begin.

Adam Smith:

Do you feel like a bit of a salesperson?

Ellice Parkinson:

I try not to think of myself as selling myself or my research.

Adam Smith:

Canvassing for double glazing or you’re trying to sell insurance or something like that. It feels a bit like sales, doesn’t it? It’s a bit like marketing. You’ve got to market yourself, the value importance of the study, why people should do it, how it’s going to help.

Ellice Parkinson:

Thankfully, as you know, a lot of people do see a lot of importance in hydration care for people with dementia. People do see, and that was one thing that came up in my public partner involvement work before the study even began, people see this as really crucially needed research. So, it was never really the case that I didn’t have buy-in from people. I had the buy-in. It was more, so residents were easier to recruit into the study than staff. That was very difficult and there was a tiered process. So, management gave the consent eventually first.

And then once the rest of the staff gauged, okay, this might be safe now, then the less risky staff got involved. Maybe activity staff, domestic staff, maintenance staff, people who weren’t directly relating to hydration care. And then the last buy-in I got was from care staff themselves and that was interesting just on its own.

Adam Smith:

So, there is that element that we come back to where we mentioned before about study design that if your study is something that people will feel is valuable and worthwhile and important, it’s certainly going to help, particularly if you have gatekeepers who might present barriers or anybody actually. Because if you go to a GP or a community centre and say, “I want to come and talk to your residents about this study,” and they go, “Well what’s the point? Yeah, that’s not interesting.” They’re probably less likely to help you than if it’s something that they really see as valuable. Anna, what’s your most recent experience?

Dr Anna Volkmer:

So, I think my most recent experiences built on my initial experiences. So, I was describing earlier about the pilot study I did, which is an NHS-based pilot study I had initially developed a study for my PhD based on three sites, having collected numbers and we made this pragmatic decision and then it didn’t happen. I learned that I had to add sites and I did that through networking. I really enjoyed that Ellice’s comment about the tiered networking with people. And actually, I was really networking with speech and language therapists to add sites. What I’m now doing, my current study, I’m coming towards the end of, we are developing a core outcome set for people, so to measure outcomes in primary progressive aphasia intervention research. And we’ve managed to recruit 19 sites around the world and it’s through networking essentially.

In all of these instances, I really realised very quickly in my PhD work that I needed to sell it a bit, not necessarily to the people but to the professionals. So, we are coming back to what we were actually talking to before we started recording, which is that GPs often they do a lot of recruiting, it’s quite burdensome. I had the same with speech therapists. They were saying it’s really burdensome. So, I was trading a bit. So, I realised actually trading is quite helpful even for professionals.

So, I was saying, “If you recruit people for me, I’ll train you up in this therapy. It’s really helpful, you can use it. We are not just with these clients but with others, I can be a sounding board.” And so, with the international study, I had to think in advance, what can I trade? I actually offered everybody who was involved, so I had to get all these different sites around the world to run focus groups for me and I’ve offered everyone to be a co-author on the study. So, we are going to have a really exciting collaboration, but that really was something that people were really excited about.

Adam Smith:

And I hadn’t thought about that because it’s normal, it’s more normal in clinical studies, isn’t it? To have multiple sites.

Dr Anna Volkmer:

It is.

Adam Smith:

That fundamentally it’s one study, but it’s multiple sites and it’s great if you can afford it. Of course, depending on if your study’s eligible in the UK it’s the NIHR portfolio, which means they’ll cover some of the costs and you can set up multi-centre studies, less so in university research. But again, unless you’ve got collaborators who want to do that. Megan and Ellice, have you managed through networking, get collaborators who will do your work as well elsewhere?

Dr Megan Rose Readman:

Yeah. So, I was actually really quite fortunate in my PhD. All my PhD work, I collected the data at Preston Royal Hospital in the clinical research facility there. So, I was working with people living with Parkinson’s and the research nurses within that facility. Actually, did all the recruitment for me. So, they contacted the people living with Parkinson’s. But that was a very fortunate situation and it coincided with the fact that the facility was very new when we went to them, and they really wanted to get themselves established and get off the ground and get up and running.

So, they were happy to take on the study and what Anna was saying, the trade-off was I got shipped off to road shows to do little demos of what the research that is going on at Preston was and talk to people about the facilities at Preston. And there was always this underlying, if we go further in this research, if we apply for grants, we’ll put money in for you. And it was like, it is like what Anna was saying, there had to be something that they were going to get from it almost.

Adam Smith:

So again, it’s important. Again, it’s coming back to that design stage, isn’t it? That from the outset if you design that you could build into your study design that it’s going to be multi-centre, which is great if you’re writing a bid specifically for this and its recruitment. A little bit harder if you’re a PhD student and you’re given something ready-made project where your recruitment budget is 500 pounds, it’s not quite the same thing, but multicentre.

So multicentre and collaborations are great anyway because even if the more people you know who support you and your work, even if it’s not a multicentre study, if you’re looking for somebody who’s going to share it amongst their patients or their community or take it to their dementia cafe locally or if you’re trying to reach carers, the more friends and people you’ve got, don’t be shy about just sending an email to those people you met at the conferences and said, “Hey, we’re all in the same boat. I’m getting into this study right now, it’s a survey, it’s online, anybody could do it or it’s a piece of paper, could you share this for me?”

I don’t imagine people would say no. They go, “Okay.” We all have this struggle. Let’s move on quickly, innovative methods. So, I’m going to start this to talk about innovative methods you’ve found to come over recruitment. So, my top tip, I’ll get one of these in now, if you are looking for people living with dementia or you’re looking for carers, don’t waste your time with X, formerly known as Twitter or even Instagram. Don’t go anywhere near it. You’re wasting your time. I mean, by all means, if it’s a 30-second job to just do a tweet and then forget about it, then by all means do it. You’ve got nothing to lose.

But if you really want to embrace digital communities, Facebook is the way to go. Facebook, if you go into the group’s function on Facebook, Facebook is filled with thousands of groups and there are hundreds and hundreds of them that are dementia-specific support groups. These come on some big national ones like there’s a dementia support group that covers all of India and has thousands of people in it. There is also one for a tiny little Oxford village down the road from me that’s got about 40 people in it, and it’s called Dementia Friendly Rossendale, or I know the 3 Nations Dementia Working Group that Chris is involved in and things like that.

They have a Facebook group and what you find in there is passionate local people that have been affected by dementia using a platform that they’ve become familiar with, and they feel a bit safe with.

I think I have seen statistics that say older people are far more likely to use Facebook than they are other forms of social media. You can join those groups, they’re all free. Sometimes you might have to message the administrator to show them that you’re legit, you’re not trying to sell something. It’s not inappropriate. But they will often just say, “Okay,” if you ask first to post your poster, your banner, your information in there. And I found that to be so effective. When we’ve promoted the [inaudible 00:43:52] and things like that in the past, so many of people with lived experience came from Facebook and nowhere else. So, my top tip is Facebook. Ellice, what’s your innovative method?

Ellice Parkinson:

Mine is another plug for Alzheimer’s Society actually.

Adam Smith:

Which is great if you’re in the UK. I don’t know if they do that elsewhere.

Ellice Parkinson:

Well, yeah. So, the Dementia Talking Point forum is a public discussion forum. It’s online and anyone can internationally post on there. And I did an analysis as a third PhD study of the public discourse. So did a search on there of drinking terms, so drinking, dehydration, tea, coffee, water, whole host of search terms for people living with dementia in care homes downloaded all the online posts. You are only allowed to do that if you get permission from the moderators on there. So, I managed to get permission.

I got NHS ethical approval as the wider drink study anyway of which that was encompassed. But did an analysis of the thematic discourse analysis of all of those to triangulate against my care home ethnography. So actually, I would say that that’s a really nice approach. That’s data that’s already out there of people who have lived experience. These are their real unfiltered, anonymized posts.

Adam Smith:

So, Alzheimer’s Society’s Talking Point Forum. I think you do have to have to ask, you do have to ask permission for. Nobody can just go on there and post any old thing, but they will-

Ellice Parkinson:

You create a profile.

Adam Smith:

Yeah. Megan.

Dr Megan Rose Readman:

I don’t think it’s particularly innovative but-

Adam Smith:

Effective is nobody cares about innovation. Getting the job done is the main thing.

Dr Megan Rose Readman:

Yeah. I honestly strongly believe in going to support groups, local community, but the way that you do it, you don’t want to just march in like this is my study. Just go, take in the atmosphere just lovely environments, and become in that atmosphere and talk to the people and then slowly but surely you can potentially introduce your research if it feels appropriate. But I really do. Call me old-fashioned, but there’s nothing quite like face-to-face. Just meeting the people.

Adam Smith:

I 100% agree. So, in my work over the years, one of the problems Join Dementia Research has been that out of those 200 memory clinics we talked about, of course, you’d like every one of those to be referring everybody in to Join Dementia Research, but they don’t because they forget they’re busy or they don’t like it, but there are lots of reasons why not. And the top way we found that you could not get over the fact that you just needed to go meet the memory clinic staff, have a chat to them. Explain what it was all about and not just once, you had to go back time and time again, you had to repeat this staff change, things change.

I don’t think you can beat that face-to-face interaction, particularly in this community. You going as Megan, the nice young doctor from the university who cares, she’s passionate. You want to do your work and you can stand there and explain why it’s important and what you want I think is compelling. Far more compelling than a flyer to be quite honest.

Dr Megan Rose Readman:

I really think one word you just said that really sums it up nicely, Adam, is its passion. When you go and you talk to people and they see how very passionate you are about your research, then all the things that you were saying before, they won’t feel like a Guinea pig or a lab rat or whatever because they see your passion and understand your story as well a bit. It just gets rid of this whole power thing.

Adam Smith:

And do you know what? You can do that. So, you can bring that digital together because if you really don’t have the time, you can’t go out in the face-to-face. What you can do is pick up, for the sake of those on audio I’m picking up my mobile phone now and I’m going to look at it and go, you can sit there and record yourself talking into your phone for three minutes and what you’re going to post onto YouTube, Twitter, Instagram, Facebook even isn’t a two-paragraph summary. It’s a little video of you talking about why you want people important.

That is going to get you far more success than you are copying and pasting something that you’ve put in your ethics form into a Facebook post is a video. Video yourself doing it. People will watch that and go, “Oh, yeah.” I think that’s my theory. Anna. Thank you, Megan.

Dr Anna Volkmer:

I think you can also do the same for consent forms. You can do video recorded consent forms now and I think what something I’ve really noticed people value in the trials that I’ve done is the accessible consent forms themselves. So, making a consent form, but using images or checking the kind of language you’re using to make it sure that you don’t need a PhD to understand it is actually something I think that gets very forgotten and it’s really, really, it comes back to that advertising. If at the very point of advertisement, can you make it accessible, then you’re going to get more uptake because people understand what you’re asking from them. And that kind of links in with the passion.

They’re not going to say yes if they don’t understand what you’re asking from them. But I also agree with that idea of it’s not only being making it accessible for the people living with dementia and their family members, but also for the health professionals. Because health professionals in every country in the world are overburdened and I think also they forget and they’re also, I think making the decision about whether somebody is eligible for a trial, can often be another burden. Do they really fit the criteria?

And actually, I think we can often help by doing things like offering to come and go through their caseload and check which ones are, which people will be eligible. That’s been a massive advantage in my study is actually saying, come on, I’ll come to you, but I’ll also come to you and go through and let’s talk about the eligibility criteria.

Adam Smith:

I mean, if you can afford it, I guess there is the option because GPs can write to people. They have automated electronic systems for doing this certainly in the UK and they can write to anybody as their patients. I think if you’ve got ethically approved. So, if you can find a way to connect with your local, is it LMC, your local medical committees and things like that the GPs are involved with and partnering up that they could potentially write to patients for you. They might pass their cost on to you, so if your study can involve it, but again, if you can build that into your project costs, people like a good old-fashioned letter.

And so, our most successful ever promotion of Join Dementia Research was with Lancashire Care Trust. There were two things that they did that got them to something like 25% of everybody signed up, which is they gave everybody an application form in the memory clinic even if they hadn’t yet had their diagnosis.

But a form you can fill in. People are quite good at filling in forms. If you give them a form in amongst lots of other forms and say fill in that form, people will fill that in and then collect it back. Don’t wait for people to post it themselves. Take it back and post it for them. And then following up with a letter within three months to say, “Here’s what we’re looking for” People sign up to that. And between the combination of the letter and the form, they got the best signup rates in the country. So old-fashioned snail mail is a good one as well. We’ve spent quite a long time already looking at the clock as ever with my podcast, they’re never short.

I did have a whole section in here on the role that ethics committees play in shaping recruitment strategy.

I know members on ethics committees that would say, I think there’s good, bad, and ugly in amongst ethics committees. I’m going to be honest. I think sometimes they can be remarkable and give you true advice that is incredibly helpful that you wouldn’t have thought of. Other times I’ve come across them and they’re incredibly finickity. That’s a UK word. Anybody listening outside, finickity, I can’t even say it again now, finicky, where they’ll pick you up on slightest little word changes because it almost feels like they feel the need to make some change even though it’s not going to add value just because we wouldn’t be doing our job if we didn’t make you change something.

I apologise to ethics committees everywhere for saying that. That’s just my personal view, but it feels like that sometimes. And then other times they’ve completely said, “Oh, you can’t do something,” and just gives a lack of understanding. I mean, you’ve all got your own personal experiences. I was going to say hands up if it’s been good and hands down if it’s been bad, but that won’t work for audio only. The video version. Anna, just say good or bad.

Dr Anna Volkmer:

In the middle.

Adam Smith:

Megan.

Dr Anna Volkmer:

I’d say in the middle too.

Adam Smith:

Ellice.

Ellice Parkinson:

For my ethnography it was different.

Adam Smith:

Oh, yes. Anyway, I was going to wait for somebody to actually come out and be honest. It was hard. Can anybody give me an example of, give me one example of something where they’ve genuinely given you advice that was helpful and then one that was just completely unhelpful.

Ellice Parkinson:

Can I say unhelpful?

Adam Smith:

Yeah, go on, Ellice.

Ellice Parkinson:

An ethnography one was the wording. So, they specifically wanted me to use the word dementia in all of my recruitment materials, and that was one thing that was so strongly opposed in all of the public partner engagement. So, I stood firm on that and pushed back. But an ethnography is supposed to be observing people in a naturalistic environment. So, you are not supposed to be experimental in any way. The research ethics committee members were really concerned that my presence was going to really have a negative impact on the care home and that they were concerned that I was going to be recording information or people who did not give consent.

So, they proposed a solution that half of my care home would be segmented, not my care home. The care home would be segmented off to consenting people and the other half would be segmented off to non-consenting people. So, there’s moral implications here. I would suggest ethical implications, but on a study design basis that is an experiment that is not an ethnography. That was the biggest.

Adam Smith:

Happened impractical. You never recruited to that when it came to actually doing it.

Ellice Parkinson:

It’s totally, for me, totally unethical. You cannot ask people for when you … or the reason I chose an ethnography is to try and be as least burdensome on, I specifically wanted people living with dementia who may or may not have the mental capacity to provide informed consent. I didn’t want there to be restrictions on who could be involved in the study. So, an ethnography is quite burdensome, that I just sit in a corner and don’t have an impact in anyone. If I’m going in tearing up the care home, you over there, you are over there. That is so unethical.

Adam Smith:

I can understand that. Anna, Megan, good tips you’ve had from ethics committees?

Dr Anna Volkmer:

I would actually say I was invited to bring a PPI participant to the ethics meeting, and that was probably a good tip because I was able to-

Adam Smith:

Quite hard to argue with somebody who sitting there with lived experience. Yeah.

Dr Anna Volkmer:

Exactly. Yeah. So that was it for me, yeah.

Adam Smith:

Megan.

Dr Megan Rose Readman:

I don’t think I have anything as good as [inaudible 00:56:20]-

Adam Smith:

Nothing positive.

Dr Megan Rose Readman:

… Anna’s just said.

Adam Smith:

No, it’s entirely reasonable. I think the important thing here is to plan ahead as well. I mean, if you can talk to colleagues and if they’re willing to share their ethics applications to talk to them about what their experience is, particularly with an individual ethics and ethics panel, approach them in advance to ask if that you can approach them in advance. They might not answer your questions, but you can go ask and say, “Hey, I’m going to be doing this. Do you have any particular tips?” You could approach the chair and ask for any recommendations, what they’ve seen.

You can have a look at are these all published and available? You can see ethics approvals that they’ve previously given to get any sense of what they’ve done. So, getting it through first time, but they are supposed to be there to help.

So, I mean, also ask their advice. I don’t think it’s all ethics is an important role to play, and it is there for a good reason. I had a whole section on dropout risk, but I don’t think we can have a lot of time to talk about this now, to be honest. But dropout risk is an issue. I mean, there’s nothing more frustrating than recruiting all your people in and then having to start all over again because I mean, we all experienced that during COVID when things had to change. We’re not going to talk about COVID, let’s not talk about the pandemic. But how do you address any top tips on addressing dropouts?

I mean, I guess with your interviews it’s less of an issue, so quick after, but follow-ups and things like that can be different. What about you, Anna? You’ve probably had the-

Dr Anna Volkmer:

Do you know what? Other than COVID I’ve never had any dropouts.

Adam Smith:

Well, lucky for you. I guess it’s different for the longitudinal studies in clinical drug trials and things like that.

Dr Anna Volkmer:

Well, I would say the studies I’ve done, the longest study I did involve people for about eight weeks and people didn’t drop out.

Adam Smith:

Go on Ellice.

Ellice Parkinson:

So, for enrolled Huntington’s disease, observational studies, so that’s longitudinal. That just carries on and on and on. It’s been going for years. We used to, at Birmingham, we used to always give out biannual newsletters to keep people very aware. So literally mailing out newsletters so people are aware of what we’re doing. Touch base, because like I said, they have the annual clinic visit, but also, we would do an annual follow-up research visit. But also, we would put on a research party. So once a year, put on a free party for participants to come have fun.

Everything was catered for and just as a big thank you to them for their involvement in research. But Huntington’s Disease Association, but also really involved with the site and they’re amazing. So, I think lots of different ways of connecting the community to the research.

Adam Smith:

Every time you read on this topic, that’s the top tip that comes through is remaining connected, staying relevant, keeping in touch with people, picking up the phone. Birthday cards, I’ve heard people sending cards, seasonal cards, Christmas cards to people, research updates, video updates, inviting people to regular meetings, sharing progress. All of those help you keep in touch with the people, don’t they?

And also as well, even in your short six-week things, I think listening to people is so important because if the intervention you’re planning is too hard to undertake, listening to people so that, if you can, you can adapt and improve the study maybe for the next cohort or even change the ethics, change the intervention if you need to. It’s better to get it right than to have a study that goes through where everybody says, “No, it was no good.” Anna is nodding for those who are listening and not watching. Do you know what?

I’m afraid this is probably all we’ve got time for, but we’re going to have a couple of last recap and top tips before we finish.

Okay. So, before we finish, we’re going to have one more question and I’m going to try and recap on what we’ve taken away. So, everybody agrees. Recruiting to studies is tricky. No matter where in the world you are, no matter what type of research it is, whether this is a drug trial or whether it’s a small qualitative study that needs five people, that it can be a challenge as well. We know that some of the barriers, we talked about those extensively at the start of the show.

We know the reasons why, but when you need to try and recruit people, there are hopefully some top tips in there you can do, which is of course there are still digital methods face-to-face, getting in front of people and talking to them, reaching out to their communities, collaborating, finding partners to work with, whether that’s charities, institutions, your local dementia cafes, HUK networks, or different places where older people that you are looking for to participate in your studies.

Or not necessarily older people. If it’s prevention trials, younger people. But go to wherever those people are and use the methods they’re using to communicate to try and encourage them. Be passionate about your work. Make sure your study is designed well from the outset that you’ve thought hard about how many people you need, what you need them to do, whether it’s appealing for them and if not, how you can make it appealing. Bring other people on board to help you with delivering that study as well. And I don’t know, is there anything else I’ve missed?

I miss things. Anna.

Dr Anna Volkmer:

I was just thinking about underserved communities. I think that’s probably something we haven’t discovered.

Adam Smith:

We haven’t. You’re absolutely right.

Dr Anna Volkmer:

And actually, I think that’s something I’m trying to do a bit more now. So, reaching out to local church communities or cultural communities just to make connections with them so that they could perhaps reach people who I might not be able to reach as a white female speech and language researcher. I think that’s something I’ve been thinking a lot more about but doing that with a smile on my face and passionately and accessibly. But yeah, I thought I’d just mention that before I forgot.

Adam Smith:

Absolutely. So, I can’t remember. One of the conferences I’ve been to recently, that awful term that’s so often used is these hard-to-reach communities. And you constantly push back saying there are no hard-to-reach communities. You’re just not doing a good enough job at reaching them. I think that’s an important topic we could do. I think we should do an entire separate podcast on how to reach people who traditionally don’t have access to research, haven’t talked to. But again, it comes back to every time when you hear and listen to people who’ve been successful at that, every time it comes down to that relationships, face-to-face contact.

Don’t be afraid to go to the places where those people are living to talk to the community leaders, talk in the places there to meet people. Because if you’re sitting on the outside sending letters or messaging at them or asking somebody to do something for you, it’s not going to work.

You’ve just got to go and talk to people, I think. And also as well, I think if you can bring people on board to support you in that work, it’s important because people like to see somebody like them who is involved in the research. So, as you mentioned, being a middle-class white woman, it helps if the person that’s talking to them about the research looks and is from that community as well, that same place. So, if you have the opportunity to bring on partners and help others to get involved in your studies, do it. That’s the way to get involved.

And I think also set some expectations. I mean, go out there from the outset. Don’t just say, oh, we’ll try or we’re looking for this many people. Actually, write down, “We will find this many people from this community or from the Muslim community or from the kind of South Asian community.” Actually, set yourself a target for how many people you’re going to do. Because if you don’t, if you just drift into it and go, “Oh, well we tried and we may be found one person.” Actually, be ambitious and make it a point to do it. Plan to do it from the outset. Don’t make it an afterthought. Does anybody else, I don’t know, do you agree?

Ellice Parkinson:

Yeah, no, I do.

Adam Smith:

Because not everybody watches on video.

Ellice Parkinson:

We haven’t also covered the role of an advisory group. So, although we have public partner involvement, the role of an advisory group can serve that role in a way and meet people halfway. If you have a great diverse advisory group for your study or co-applicants for the study from the offset, that’s already the relationships to communities are already there. We should be seeing that more often.

Adam Smith:

Absolutely. And there’s nothing to stop you doing that. I mean, anybody can do that. A PhD student. You could set up an advisory group anytime. [inaudible 01:05:27] you might need to check with your supervisor. They agree. But get an advisory group together and draw on the communities to bring those people because they’ll give you advice from the outset and they’ll help, they’ll part of this to be part of that study team doing that job. Right. Very last question. I think that’s enough recapping. We’re definitely at an hour now.

So, for those who are listening to this who are fairly new PhDs, there’ll be some people out there who are fresh out of undergrad, maybe just under a master’s now doing their PhD for the first time. They’re on a dementia study, they care about dementia. The only person with dementia they’ve ever met is like their granddad or maybe a neighbour. Have never actually face-to-face interacted with somebody living with dementia. I could see that being quite nerve wracking. You’ve watched a lot of YouTube tutorial; you’ve watched Alzheimer’s Society and AIUK’s new videos and you know what to expect.

But what’s it like face-to-face for the first time? So, I’m going to go to, Megan, first of all. What advice would you have for a new PhD student that finds themselves having to talk to somebody living with dementia and their carer for the first time? And you are going in there with a message, you want them to do your research, but how do you approach that with that person?

Dr Megan Rose Readman:

I think the first thing is to acknowledge it’s okay to be nervous the first time. I know the first time that I ever, from a research perspective, spoke to anybody living with dementia, living with Parkinson’s, I was petrified, absolutely petrified that I was going to say something wrong, do something wrong. The first thing is acknowledged that it’s okay. That you’re a little bit nervous and your nerves just mean it matters to you. That you want to do well sort of thing. It’s not wrong to be nervous. And I guess the top tip would be try not to overthink it and be too prescriptive and formal. Don’t have a script and just come and be like,

“My name is blah, blah, blah, this is my study.” Just be natural. Don’t have your script. Just go in there engage in just a normal conversation. Don’t go with your cue cards would be much.

Adam Smith:

I think empathy is important there, isn’t it?

Dr Megan Rose Readman:

Yeah.

Adam Smith:

And no one person is the same. I think I’ve met so many people, we had somebody on the podcast recently who acknowledged that they didn’t always speak as concisely as they would like, but they also made the point that, we could edit that. We could make them in the editing of that podcast, we could make them clearly understood and edit out the silencers, edit out the mistakes and the misspeaking. But they asked us specifically not to. And so, we left them in. For other people, they wouldn’t have taken that approach though.

They’d have said, “Oh, God, I don’t want to sound like I don’t know what I’m talking about. Can you fix all that?” And I think having those conversations, treating each person like an individual and being honest, having an honest conversation about some of those things is important because not everybody would like you to edit them. And some people absolutely would want you to. Anna.

Dr Anna Volkmer:

As a speech and language therapist, I would say that there is actually research on what to do. And one of my colleagues is very straightforward. She was doing a big piece of work and the majority of people just want you to smile at them. So, you meet somebody, and you smile. And it’s often the thing, even if you look at all the top tips on how to communicate with people with dementia, smiling is often not on that list. So, smile, I think is a really important point.

Adam Smith:

That is so cool. Absolutely. Do you know what, and that’s my default usually because it’s my nervous face.

Dr Anna Volkmer:

Me too.

Adam Smith:

A smile.

Dr Anna Volkmer:

It’s absolutely my default. I think I’ve been like that since I was 12 and now, I realise it’s a great advantage. I thought I was just a bit over enthusiastic in life, but now I realise it’s really helpful and it is what people are saying they want. They want you to smile. But then I guess I would say smile and then speak plainly. Don’t use technical language at all if you can help it.

Adam Smith:

And I think asking questions as well, not assuming. I think it’s important as well if you ask.

Dr Anna Volkmer:

Absolutely. And check. Part of asking questions can be giving people the opportunity saying, “Am I making sense? Are you following me? Which bit did you not follow?”

Adam Smith:

The active listening. I mean, quite often people living with this in real life, I mean, don’t be afraid to talk a little bit about their realities of living with dementia. I think they quite like the idea that you really understand the realities.

Dr Anna Volkmer:

Absolutely.

Adam Smith:

Ellice.

Ellice Parkinson:

I would just echo everything that everyone said. Although I would say the mask wearing in care homes and trying to smile very difficult, very, very difficult. I would say just treat them like human beings. I think we put this label of dementia on, which can make things look very scary sometimes. And actually, we just need to treat people like human beings. What I did also find is wearing a kind of yellow name badge saying, “Hello, I’m a researcher, Ellice,” was quite useful, particularly in the care home for me to just point to if there was hearing impairment or communication difficulties for me to just remind people of that.

But I naturally talk with my hands. I do a lot of gesturing, body language cues you can pick up on.

Adam Smith:

Anna, you touched on just thinking what Ellice mentioned there, you mentioned [inaudible 01:11:31]. Is there something somebody should go away and read from the Better Conversations work and the things you’ve had? Is there some guide to this that exists online somewhere that people could go away?

Dr Anna Volkmer:

There is actually a guide that we co-produced with people with speech language and communication difficulties with dementia. And we actually co-produced it with them and people with stroke aphasia. And it was the same top tips and it’s on the Royal College Speech and Language Therapy website, RCSLT website, is top tips on communicating with people and smile was at the top.

Adam Smith:

That is a perfect list and I think a perfect way to end today’s podcast. I’d like to thank our incredible guest, Dr. Anna Volkmer, Ellice Parkinson, and Dr. Megan Rose Readman. Thank you so much everybody for joining us. You’ll find more top tips and any links that we’ve mentioned in the show, on the website or in the show notes to go with this podcast. There you’ll also find a full transcript. If you are listening to this, you’ll find a full transcript of the text there as well. And in YouTube you’ll find that we have captions available, and biographies, as I said, on all of our guests where you can read more about their work.

Links to Anna’s brilliant blogs to read more about Megan’s work up there in Liverpool. Megan’s going to be presenting at a conference in Liverpool as well in a couple of weeks’ time, and we’re going to record some of that as well, I believe, which we’ll put onto our YouTube channel. Ellice has already been in an amazing podcast talking about her work on Hydration as well, which is our top podcast of the year so far. So, if you haven’t listened to that yet, do go away and have a listen in your favourite podcast app or on our YouTube channel.

Thank you very much everybody. I’m Adam Smith and you’ve been listening to the Dementia Researcher Podcast.

Dr Anna Volkmer:

Bye

Ellice Parkinson:

Bye.

Voice Over:

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

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