Podcast – Working with people with dementia and their carers

Voice Over:

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

Amy Monaghan:

Hello, my name is Amy Monaghan and welcome back to the NIHR Dementia Research podcast. This week we’re looking at working with people with dementia and their carers, and I’m joined today again by three guests in the studio. The first is Kellie Morrissey.

Amy Monaghan:

Hi Kellie. If you’d like to say a little bit about yourself and what you’re researching.

Kellie Morrissey:

Hiya. I’m a Newcastle University research fellow at Open Lab in the school of computing science, where I lead the digital social care team. So my background is in applied psychology. My PhD was an ethnographic exploration into digital musical devices in dementia care. And since I’ve come to Newcastle, my research has primarily been with people with dementia and their carers. And I would say the overarching research is generally about participation. How do we involve people with dementia and their carers in the design of technologies that are going to affect their lives? So some examples of this are designing conversational support applications for carers and people with dementia, commissioning platforms that allow people to have a say in the design of new technologies and tailored virtual reality experiences for people with dementia and their carers. That’s some of the current work that I’m doing.

Amy Monaghan:

Great. And returning for his second podcast with us is Timothy Rittman, from the University of Cambridge and Addenbrooke’s hospital.

Amy Monaghan:

Tim, if you’d like to remind us all a little bit about what you’re doing at Cambridge.

Tim Rittman:

Hi Amy. Yes. I’m a clinical lecturer at the university in Cambridge in Addenbrooke’s hospital. My research is on cognitive and imaging biomarkers in people with tau associated dementia. So particularly progressive supranuclear palsy. And I’m a neurology registrar as well. I’m also on the steering committee for the World Young Leaders in Dementia.

Amy Monaghan:

Great. And finally, today we have Yvette Vermeer. I got that right, didn’t I? Yvette Vermeer. There we go.

Yvette Vermeer:

Yeah.

Amy Monaghan:

Sorry Yvette. So can you tell us a little bit about what you’re doing at UCL?

Yvette Vermeer:

I am a PhD student as UCL, but I’m also part of this European network called INDUCT. So as you might have heard from my accent, I’m originally from the Netherlands and I’m now here based at UCL doing a PhD in examining how and if surveillance technology empowers people with dementia and their carers, because usually it is the carers who use these technology devices and they can track or locate the person with dementia who might wander. And that’s basically what I’m doing. Yeah.

Amy Monaghan:

Great. Again, I am the least important person on this panel today. So I’m Amy Monaghan and I’m a postdoctoral research associate at the Alzheimer’s Research UK Drug Discovery Institute, doing early stage drug discovery projects in dementia.

Amy Monaghan:

So if you want to join in the conversation with the podcast, you can use the hashtag on Twitter, ECR dementia. You can forward any suggestions for future podcasts, any questions to @dem_researcher, that’s D-E-M underscore researcher. And you can also find lots of content for early career researchers on our website, dementiaresearcher.nihr.ac.uk.

Amy Monaghan:

So people with dementia and their carers are at the center of what we do, as dementia researchers. Biomedical research often involves working directly with patients and their carers. In the case of patients with dementia and their carers, this is a unique set of challenges and these can manifest in the form of consent with respect to capacity and therefore in terms of cognitive capability and the challenges that brings to the patients themselves, the carers and the researchers who are investigating the disease. These can be complex and emotional moments and they have to be sensitively managed. And as early career researchers it’s important to prepare.

Amy Monaghan:

So we’re going to go to Kellie first, I think with our first question. In the context of your research experience to date has working with people with dementia and their carers presented any specific challenges?

Kellie Morrissey:

So I think probably the first thing that comes to mind or that always comes to mind is, and you’ve said it already, the amount of emotional involvement that you get when you work day to day with people with dementia and their carers. So in particular, my field research, I took part in an ethnography in a care home in the South of Ireland, and I suppose what I found is that I couldn’t switch myself off at the end of the day. You encounter people who are going through very difficult circumstances and I think that aspect of self care, especially as a fairly young PhD student who’d never come in contact with the real world or clinical population before, I suppose understanding how to have that aspect of self care or something that would be important to me and a challenge that I think I still face today. So having adequate supervision and looking after yourself and managing your own emotions in the field.

Amy Monaghan:

And Tim, as a clinical researcher, is there anything different that you can add to that, that Kellie has just said? Or the same in fact, if it’s the same kind of challenges.

Tim Rittman:

Yeah, I think it is. As a clinician, I suppose I have more experience of coming across people who are in very difficult situations. But I think when you’re doing a cognitive battery or a set of tests with someone, it’s very intense. You can be there for a few hours sometimes and you certainly get to know the families and the patients over a long period of time, so you do get very involved, which I think is a great thing actually. I think it’s nice to have that relationship.

Tim Rittman:

I think in terms of some of the other specific challenges of working with people with dementia, a lot of the cognitive tests and other tests that you would do that are designed and usually tested on young healthy student populations, when you then try and take them into the dementia world, it takes you 10 times longer to do what should be at a 10 minute test or something.

Amy Monaghan:

You can’t see it, but Kellie is nodding along.

Tim Rittman:

Yeah. I think it’s something we’ve all faced. Particularly the population that I work in, people with PSP are incredibly slow. So one the PhD students I worked with when I was doing my PhD, designed the cognitive battery, which is supposed to last three hours and ended up being 15 hours. So it’s a real challenge, and the same with getting people to come to scans and do tasks in an MRI scanner is just not really possible. So you have to think of ways around that. So for example, I do a lot of resting state MRI in my scanning because it means that people don’t have to do those specific tasks.

Amy Monaghan:

And Yvette, maybe you can talk a little bit about working with people with dementia and their carers as well, and the challenges that are associated with that.

Yvette Vermeer:

Yeah. Coming back to you said a couple of times patients, and actually, I would prefer it if you don’t call people living with dementia patients. I work together with Alzheimer’s Europe and they have this working group of people living with dementia. And the language we use is very important. So if you call them patients, you are very disrespectful. These are people living with dementia and they’re not in a hospital, completely locked up. They have a life, they mean something. And I think language is very important, not only how you talk about people but also how you portray people. And that’s also a bit that I research, so not only the technology side, but how we portray people in the media because this might have a negative impact on them.

Yvette Vermeer:

But also, I heard tests can take longer because of the stages of dementia they are in, but on the other hand, the people I’ve worked with, especially last week, the people from the European Working Group who live with dementia, these are very strong people who advocate about these language guidelines. Again, they’re all diverse and they’re all individuals.

Yvette Vermeer:

What I also would like to point out about this diversity is I want to do focus groups with people living with dementia and their carers, and it’s very difficult to get ethical approval. Not only because of the message you have to take, but also because I wanted to involve people with later stages of dementia and that’s just nearly impossible. So I had to go for people with mild to moderate levels of dementia, and that’s actually excluding people, and my whole project is about empowerment. And that’s just a big major challenge. Not only here in the UK but I’m also going to do it in the Netherlands, and that’s also why I said, “Hey, I’m Dutch,” and it’s just everywhere in Europe at the moment.

Kellie Morrissey:

I suppose, just to chime in, I completely agree with you. I think ethics is such a major challenge in dementia research, especially because I feel like all the forms we use, all the applications we go through are predicated often on clinical research medical research, when really what I do is social research. And you’re talking about focus groups and trying to involve people at the later stages and yeah, it’s next to impossible. I have a PhD student now, who is going through the whole NHS REC ethics and really, all he wants to do is very low risk qualitative research around designing an application in tandem with carers and people with dementia, and it does feel like that inclusion point really needs to be brought up more.

Amy Monaghan:

Well, let’s touch a little bit on that and maybe Yvette, you can cover this. What do you think the opportunities are to enhance the involvement of people that are living with dementia and their carers in research?

Yvette Vermeer:

The opportunities are that you have all the voices heard because you have such diverse people. These are not just a group of people, “Oh, they have dementia.” No. Everyone has their own opinions. And I want to do discussions with people about the media and how it impacts them and how technology impacts them. And like Kellie said, it’s very low risk what I do, and it took me a year to get ethical approval. I do a PhD of three years and I really want to do the research and help people, and this will just challenge all the researchers to, for example, continue this process. So with ethical approval, don’t give people slack or the opportunity, like, “Okay, just do it,” because ethics are there for a reason, but there should be different applications. So if you’re doing social science or just want to have a talk with people, just an easier process or a more efficient process.

Amy Monaghan:

And Tim, maybe you want to talk a little bit about your research and how do you engage people with your research? How do you recruit people to your research? Those kinds of things.

Tim Rittman:

I find actually it’s not that difficult to recruit people, particularly when people have rarer dementias, but also people with more so-called common dementia, Alzheimer’s disease or Parkinson’s disease. Many people are actually really keen to get involved, even when we’re very clear that it won’t necessarily benefit them, but might benefit other people.

Tim Rittman:

I think you have to be careful that when people hear re research they often think drug trials, and that’s not often what we’re doing. We’re trying to learn about the disease. So I think it is important to help people understand exactly what they’re getting themselves into, if you like. But I think sometimes some of the reluctance comes on the part of us as clinicians and in clinic when we see people, trying to recruit them to studies. It sometimes feels like a very sensitive area. You’ve just given them a very difficult diagnosis or they’re coming back and you’ve had a very in depth discussion about something, and then it seems rather frivolous to then be talking about research. But actually, my experience is that people are still very keen to get involved and even difficult conversations, say about donation to a brain bank, actually people have often thought about it already and are not shocked or put off by the question. In fact, we ask people in our clinics whether they were put off by being asked about brain donation and they said no they weren’t, they saw it as a positive thing.

Tim Rittman:

So actually, my experience on the whole has been fairly positive about people wanting to get involved, but they just need to have the opportunities to do that.

Amy Monaghan:

And Kellie?

Kellie Morrissey:

I think our approach to including and recruiting is usually to establish really good links at the community level. So to go out and to do a community work, to get involved with groups. I’m really involved with our local Dementia Action Alliance and I regularly help them secure small pots of funding to keep going. And in that way, you build up your network and you widen it out. And I suppose this is particularly relevant to the type of research I do, small groups, so being able to go back to the same groups over and over again and get them involved in focus groups and interviews is really, really useful.

Kellie Morrissey:

I think, on your point about where are the opportunities to get them involved is important. So we recently ran a very large scale online competition to involve people with dementia and their carers in the design of new technologies, asking them to submit their ideas and we funded it quite a bit and we put a lot of work into it. And really, I don’t think that it was super successful. There wasn’t huge amounts of uptake. We’re currently looking at the platform and seeing did we really make this as accessible as possible? Not just in the design, but did we think about the time that people would have to put into something like this? It isn’t something like brain donation, it’s something about designing technologies online. How much do people care about it? How do people want to have their voices heard? And I think we need to think really carefully about configuring that going forward.

Amy Monaghan:

I think there is a lot to be said for being able to crowdsource some of your science research and things. You see a lot of projects now online on the various science portals, where you can take part and you can analyze images from cancer slices and things. And I know Alzheimer’s Research UK have Sea Hero Quest as well, and they can be great resources, but definitely designing them correctly so that you can engage the maximum amount of people is very important. Tim?

Tim Rittman:

Yeah, and I think that personal contact of, as you said, actually going to people, so I do a lot of work with the PSP Association, and actually seeing people there helps them to understand what the research is about. And I think that going into the community is a great idea to actually make that initial contact.

Amy Monaghan:

And do you think there are enough opportunities for researchers or clinicians or to go into the community and talk to people with dementia, and their carers?

Tim Rittman:

Yeah, I think clinicians are particularly bad at staying in hospital and not escaping.

Amy Monaghan:

Yeah. There’s no time.

Tim Rittman:

Yeah. It does take a lot of time to actually go and do that, and it takes a lot of planning. So I don’t think at the moment there is as much opportunity to do that as there should be or as there could be. That is a big undertaking actually because partly, it’s setting up those interfaces where people can go and recruit and get out of their ivory tower, out of their hospital and into the real world. But also, I think it’s partly about having a group of people with a diagnosis you can be confident in as well. So I know if I recruit people from my clinic, I’ve made the diagnosis or one of my colleagues has and I can be confident about what their disease is, what tests have had done and that’s very standardized. And a lot of research is clinical and standardized, so I think there are pros and cons. Yeah.

Amy Monaghan:

Yvette, maybe you want to talk a little bit about what approaches you take to your research involving people who are living with dementia?

Yvette Vermeer:

I have several strategies I use. Besides participants, I’m also starting up a PPI group at UCL, so people with dementia and carers can become involved as advisors into my research, so they can have a say in my design and in my research. This I posted mainly online in the beginning. I got loads of comments. So I was surprised, people are really enthusiastic. But for my focus groups, because I will ask not personal questions but more detailed questions, and I would like to establish a relationship with the people and build trust. So I will go to memory clinics and Alzheimer’s cafes, and talk to them directly and ask them. And that will then also be a sort of screening and see who they are and what they think and if they would like to participate, because it’s not just asking someone, they should be willing and hopefully also get something out of the research.

Amy Monaghan:

And Kellie, the same question to you.

Kellie Morrissey:

Very similar. As participatory as possible. I think there might be a similar strand running through a lot of the technology centered research, especially when it’s about empowering technologies, that it’s always about involving people from the very start and getting people’s opinions from the ground up, and building it around that. Beyond that, I think respect. I think encountering the person with dementia and their carer as any other person regardless of their level of dementia.

Kellie Morrissey:

And I guess something that is maybe a little bit unique about our research is that our research at Open Lab is very often not necessarily about cognitive outcomes or clinical outcomes, but instead about care and everyday life with dementia, and about supporting creativity and fun around that. So I think in our design sessions when they’re centered around artistic or creative activities, a sense of playfulness, fun is something that we try to keep alive in our sessions as well.

Amy Monaghan:

Great. We’ll move on a little bit now to what kind of advice you would give to other researchers. They’re going to be working with people living with dementia for the first time or indeed their carers, and let’s maybe not go for one, but maximum three pieces of advice that you would give to them. We’ll start with you, Tim.

Tim Rittman:

So I think firstly, get out there and meet people and treat them as people, I think as already been said really. And don’t be scared to meet people with dementia. I think often if you’re not used to it, if you work in a lab or you’ve come from a different background, it can be quite a scary thing and you don’t necessarily know what to say, but just jump in with both feet and go and chat to people and get to know them. So that would be my first piece of advice.

Tim Rittman:

I think secondly, make sure that you have the support of someone that you can talk to about those emotional issues. I think that’s really important. Even as a hardened neurologist, I still need sometimes to talk to people about really difficult patients or difficult experiences that I’ve had. So make sure you have that emotional support in place.

Tim Rittman:

And thirdly, just to pick up on something that Yvette said in passing, I think that feedback to people who’ve been involved in the research is really important. So we run a day every year where we invite people who have been involved in the research to come and hear presentations about what we’ve done with their data. And I think to build that in from the very beginning and plan to do that, it doesn’t have to be a big meeting, but even if it’s a letter once a year to say, “This is what our research group is up to,” build that in from the beginning and then that’ll give people some feedback and encourage them to keep coming back to do more research.

Amy Monaghan:

Yeah. I think I can speak to that as well from being in basic research. It’s really important, even if you think that your research is so far removed from actually getting into a therapy for a patient or helping to understand a disease, whatever that disease may be, whether it’s dementia or cancer or cardiovascular disease, anything like this, to go out and to share what you’ve been doing with those people. Because I’ve been to talk in care homes and speak to carers and people that are working with people living with dementia, and actually just being able to answer some questions and demystify a little bit of what goes on in universities because it’s not clear to anyone. It’s not clear to the people working in the universities sometimes what’s going on in them. And it doesn’t matter what your research is, it’s just nice to be able to tell the people that you’re trying to help what you’re doing.

Amy Monaghan:

Yvette, if you’d like to share your words of wisdom.

Yvette Vermeer:

Yeah. I don’t want to sound negative, but like I just said, I had a year for ethical approval, so prepare, prepare, prepare. But on a side note, remember why you are doing this, you are doing this for the people. And I also know a lot of studies who don’t involve people, so it is worth it. It is worth the competition and just working towards ethical approval. Also, especially for social sciences when you’re doing, for example, focus groups, don’t make it too big, don’t make it too difficult. Just put the questions in you need to ask and stay to that. Yeah.

Amy Monaghan:

Kellie, if you’ve got anything to add?

Kellie Morrissey:

I agree with what the others have said, but I think my main thing and something that I keep trying to remember is that, especially when you’re working with people in the later stages of the condition, that really when communication changes in particular, I suppose that it’s our job to get on their level, if you know what I mean. So it’s our job to change our communication to something that suits the person with dementia, rather than expecting them to fit into our preconceived mold of the sort of responses we want or the sort of interviews that we want. So I suppose modify your own communication style is something that I wish I had been more prepared for in my work.

Amy Monaghan:

And I’m going to go a little bit off piste. So because we’re talking about working with people with dementia, it really reminds you every day of why you’re actually doing what you’re doing, which can sometimes get a little bit lost, I think in lab science. So what do you find is the most rewarding thing about your research?

Yvette Vermeer:

Just this example that I gave a presentation about how people are portrayed with dementia in the media, and these were these horrible pictures. And this woman walked up to me and she was like, “I have dementia and I don’t like it when they do that.” So yeah, that’s the reason why I’m doing it. Yeah.

Amy Monaghan:

Tim?

Tim Rittman:

Yeah. I think there are so many different parts of the research which I enjoy and which I find rewarding. I think particularly involving people with dementia, being able to look someone in the eye and say, “We’re working on that.” They ask you, “When’s the cure going to come along?”

Tim Rittman:

“We’re working on it.” And to know that that’s actually happening I think is very rewarding. And that you’re part of it.

Kellie Morrissey:

For me, I suppose, my PhD, there was a lot in there about music and I’m a terrible musician and a terrible dancer and everything like that. But since I came to Newcastle, again with my local Dementia Action Alliance to set up a Thursday dance class for people with dementia and their carers, and through that I’ve just learned so much about how different abilities can come to the fore when certain methods of communication wane or change. And honestly, I just have so much fun. So I think that setting up community activities that make a difference and that allow people to express themselves in ways that aren’t the usual, I think those are really nice moments for me.

Amy Monaghan:

That’s really good. That’s really nice. That’s made me really happy.

Kellie Morrissey:

You should come along.

Amy Monaghan:

Yeah, definitely. I can’t dance though, so I’ll fit right in with you.

Kellie Morrissey:

Just us two.

Amy Monaghan:

Okay, well thank you all for coming in. It’s been really nice to talk to you all. Again, if you want to get involved with the conversation on Twitter, you can use the hashtag ECR Dementia. You can forward any questions to @dem_researcher. And there will be a forum topic on the website, which is dementiaresearcher.nihr.ac.uk.

Amy Monaghan:

Thank you all again for coming in and I’m sure we’ll see you again, Tim probably for a third time.

Tim Rittman:

Maybe.

Amy Monaghan:

Maybe? Maybe.

Yvette Vermeer:

Thank you.

Kellie Morrissey:

Thank you.

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