Podcast – Discussing the MARQUE Study – Managing Agitation in Dementia

Dr Megan Calvert-O’Hare:

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

Dr Megan Calvert-O’Hare:

Hello, and welcome to our podcast recording for the NIHR Dementia Researcher website. This week, we will be discussing the research aims and outputs of the MARQUE Study, with two of the contributing researchers, Dr. Penny Rapaport and Francesca Le Frenais. Frankie has a psychology background and has worked in dementia care and research since graduating. She is working and studying for her PhD part time in the MARQUE Study. Penny is a clinical psychologist with many years’ experience working clinically with people with dementia and in applied health research. She is also completing her PhD in the MARQUE Study.

Dr Megan Calvert-O’Hare:

So, welcome to both of you, and thank you for joining us today. The MARQUE project stands for Managing Agitation and Raising Quality of Life in Dementia, and consists of six different work streams. Today, we will be speaking about work stream three, is that right?

Francesca La Frenais:

Yeah, I hope so.

Dr Megan Calvert-O’Hare:

Yep. Okay, so can you tell us a bit more about the whole study and in particular work stream three?

Francesca La Frenais:

Would you like me to-

Dr Megan Calvert-O’Hare:

Yeah, you can say something [inaudible 00:01:15].

Francesca La Frenais:

Well, the MARQUE project is an umbrella for six different streams all related to dementia and agitation. So we’re looking at agitation in care homes, the community, and hospitals. But work stream three is an intervention taking place in care homes where we train care home staff to help them manage agitation better in their residence.

Dr Megan Calvert-O’Hare:

Okay. So do you produce a training manual at the end or a toolkit to help staff?

Francesca La Frenais:

Yes. It’s a manualized training program. So it’s six sessions, and each week they get a new manual, something different around managing agitation and ways to improve that for them.

Dr Megan Calvert-O’Hare:

Okay. And how did you even begin designing the training intervention?

Dr Penny Rapaport:

Yeah. I think it feels like it’s taken a lot of years, and we’ve been thinking about it for a long time. But basically, what we wanted to do was think about what was already happening, what already works. So we looked at the existing evidence. Gill Livingston, who’s the PA on the project, did a big systematic review looking at what works for agitation in terms of non-pharmacological approaches.

Dr Penny Rapaport:

We then used that information together with … The focus of my PhD is actually on the development of the intervention. I did lots of interviews with care home staff, talked to family carers about how they’re currently managing agitation, what works, what doesn’t work, and what makes it harder and easier, what gets in the way?

Dr Penny Rapaport:

Because one of the things that we know is that although certain things do work in care homes, so for example, having supervised person-centered care or helping people to communicate a bit better, helping the staff to communicate with people with dementia, most things don’t have a sustained effect. So we’re interested in developing something which might have a lasting effect. So we brought together the evidence of what works, actually what’s happening in practice, and then we went through quite a long process. I developed initial drafts based on all of this, talked to lots of different professionals and family carers and academics. It probably didn’t take that long, but it felt like it took forever. There was lots of conversations. And then all the research assistants, so people like Frankie who would then be delivering the intervention, actually practiced it for hours and hours and-

Dr Megan Calvert-O’Hare:

Practiced it with care staff in situ or practiced it with patients yourself?

Francesca La Frenais:

We did in-house practicing. We went through it, and then we found areas that didn’t quite work or didn’t quite gel together. But we also showed it to care home staff who gave their feedback. Then we did a pilot project in one care home. After that, we tweaked it a bit further, and we did focus groups and interviews following that to see how they thought we could improve the manuals before we then did the intervention in 20 care homes. And 10 of those care homes received the training, and 10 of them didn’t.

Dr Megan Calvert-O’Hare:

Okay. So overall, how long has it taken to …

Dr Penny Rapaport:

Feels like probably longer than it’s been. So we started in around July 2014. At that point, we had done the systematic review but nothing else. So since then, we did all the qualitative work. We piloted it in one care home. When was that? Around April 2016, I think. So that sort of two years period was how long we spent co-producing the intervention, and then we refined it further, as Frankie said, to start the RCT. When was that? Like September 2016 or something? So now we’re just-

Francesca La Frenais:

At the earliest. June, I think. June 2016.

Dr Penny Rapaport:

So, there’s the manual for six sessions, but then there’s also a three-month follow-up supervision period where we go into the homes. It’s very practical. It’s very much about making a plan with the care home staff. So we train all the staff but then go in, me as a clinical psychologist, and Frankie, you and the other facilitators just to troubleshoot any problems they’re having putting into practice what they’ve learned and stuff. So we do that for a three-month period as well. So it’s quite, yeah. We’re just coming to the end now, aren’t we?

Dr Megan Calvert-O’Hare:

So now you’re collecting the quantitative data from it. Okay.

Dr Penny Rapaport:

Yeah.

Dr Megan Calvert-O’Hare:

Have you got any preliminary results?

Francesca La Frenais:

No.

Dr Megan Calvert-O’Hare:

Finishes this week [crosstalk 00:06:07].

Dr Penny Rapaport:

Yeah. So we’re collecting the last bit of data from the last of the 20 care homes. We followed people up eight months after the intervention. So we won’t have any preliminary results for a few months really, because it just all takes a long time, doesn’t it? But I suppose what we have is the results, we know how the pilot went, and we know how it’s gone from our perspective.

Francesca La Frenais:

Yeah, we’ve got that anecdotal things that … Whether that will be picked up during the data collection, fingers crossed.

Dr Megan Calvert-O’Hare:

An eight-month follow-up, that’s quite a long time to follow up afterwards in a good way. I mean, a lot of studies, I know in that systematic review, you said it’s often that they work for a bit and then sort of the effect drops off. So is eight months considered a long time?

Francesca La Frenais:

Well, that was why we wanted to do a longer period. The trial was three months, but eight months would hopefully pick up on more long term.

Dr Megan Calvert-O’Hare:

Okay. That’s [crosstalk 00:07:16].

Dr Penny Rapaport:

Also, the intervention takes a while to deliver. So actually, it’s not eight months from the end of the intervention period. It’s eight month from baseline, isn’t it? So the intervention, we do six sessions fortnightly, so six times two. So it’s like 12 weeks [crosstalk 00:00:07:36].

Dr Megan Calvert-O’Hare:

Six sessions weekly?

Dr Penny Rapaport:

Oh, it’s weekly.

Dr Megan Calvert-O’Hare:

Yeah, weekly.

Dr Penny Rapaport:

Yeah, sorry. Yeah, obviously expert in six times two.

Francesca La Frenais:

So it’s six-

Dr Penny Rapaport:

Oh, yeah. So it’s weekly. So it’s six weeks, often with a bit of a break, and then a three-month supervision period. So actually, it’s about three months usually, typically, from the end of our final bit of input to when we collect data. We did that intentionally, because I think we wanted to see whether we could have a kind of-

Francesca La Frenais:

Sustained effect. You implement the training manual, and then you want to see whether that continues on after you leave. You don’t just want the data from immediately afterwards when it’s all positive.

Dr Megan Calvert-O’Hare:

Fresh in their mind?

Francesca La Frenais:

Yeah.

Dr Megan Calvert-O’Hare:

Okay. So you touched a little bit on your roles, but what did you both do in this study, Frankie?

Francesca La Frenais:

So, my role was I was involved in the data collection, so that would be at the baseline and then the follow-up. Then I facilitated the training sessions. I would deliver those, and then go in throughout the three-month period afterwards, it depended on the care home how often that was, and did supervisions like that. Then Penny, you were involved in that [crosstalk 00:08:56].

Dr Penny Rapaport:

Yeah.

Francesca La Frenais:

So sorry.

Dr Megan Calvert-O’Hare:

That’s all right.

Dr Penny Rapaport:

Yeah. So I have worked with these guys obviously in the development of the intervention and also the training of the people who are facilitating the intervention. So Frankie and all of your lovely colleagues. I together with some of the other people we worked with at UCL did quite a lot of formal training and teaching to help you get ready to deliver that intervention, but also did your clinical supervision. So we would meet together fortnightly throughout the intervention period really just to have a chance to think about what was coming up, any challenges that you were facing, any dilemmas that you experienced. And we do that in a group so you could learn from each other.

Dr Penny Rapaport:

Then I would also go in and do supervision in the care homes as well as part of that follow-up period. Sometimes with them, sometimes separately.

Dr Megan Calvert-O’Hare:

In the care home setting, did you enjoy working in the care homes?

Francesca La Frenais:

Yeah, I really enjoyed working in care homes. This wasn’t the first time that we’d been working in the homes, because MARQUE’s been going on for like four years now. But actually doing the training was quite different, and it was a really good forum for the care home staff to talk about their experiences in a way that I hadn’t really heard from them before.

Francesca La Frenais:

They were very receptive to the training on the whole. It was something new for them, and I said new for us. So it was a really interesting and exciting experience, and each care home was different. So I feel like it was really rewarding very much. I think I speak for all of my colleagues, say that we all really enjoyed delivering the training and working with the staff.

Dr Megan Calvert-O’Hare:

Yeah, I know in some of the information you provided, you said that you train all the staff so they all feel empowered to deliver. Also, I wondered whether the staff can become agitated themselves around looking after people with dementia and whether the training also helps them deal with that side of it.

Dr Penny Rapaport:

Absolutely. Yeah. So I think one of the things that came out from doing the qualitative work beforehand was just the sense in which staff, on the one hand, they have really good skills and abilities and ideas about how to manage. But at the same time, it is really difficult, and the conditions they’re working in are really tough. Often, they don’t necessarily feel that they’re getting the support that they need.

Dr Penny Rapaport:

I was just looking at some of the feedback from the pilot data, actually. Within each session, one of the key things is that we wanted to make the sessions quite fun for people to participate, because it was mandatory, and they were going to have to come. We didn’t want them to just sit there and be bored and fall asleep, none of those things. In each session as well as all the main content and thinking about agitation and thinking about their skills, we also had a stress management or a section which was about how they manage their stress themselves. So you would do different guided relaxation exercises. We also made sure we had a break, and we provided food and refreshments.

Dr Penny Rapaport:

I think the whole ethos of it was to try and make staff feel that they were being valued for their contribution, because I’m not sure that that always happens in care homes. From stream two in MARQUE, actually, you spent a lot more time in care homes collecting data, Frankie. So I wonder if you saw that sense of staff maybe not feeling as supported.

Francesca La Frenais:

Yeah, definitely. I think that the training also gave them a bit more of a sense of empowerment and ownership over their caring and what they could do individually to try and help.

Dr Megan Calvert-O’Hare:

Yeah. I think it’s quite nice, because you say you train all the staff instead of just leaders or champions, which often is the way. You teach one person, and you hope that it filters down. But by teaching everyone, you are giving ownership to everyone in the care home.

Francesca La Frenais:

Obviously. And then conversely, I think having the management in the training as well helped to promote what we were trying to do through the training and had their approval as well. So the things that we were asking the carers to do, we were asking the managers to do as well. Yeah, things that we asked them to do were in the long run going to save them more time than it would cost them. But there was a little bit of homework between each of the sessions that they could try out to see whether it worked for them. Having the managers in the room when we were asking them to do that, it allowed them to take time out of their week to do that homework as well.

Dr Megan Calvert-O’Hare:

Okay. In your why did you choose to work in dementia section you said about in the future you’d like care homes to have a bit more of a positive reputation. Do you think a study like this could help in that, because you’re training staff to take ownership? That then, they’re more invested in what they’re doing and that can really promote the actual care part of the care home?

Francesca La Frenais:

Ooh, tough question. I mean, I’d hope so. I think there’s a lot of stigma around that. A lot of that comes from the media and the way that it focuses on care homes that they think will get lots of attention, things like abuse. What we’ve seen overwhelmingly from working in care homes, certainly what I’ve seen, is that on the whole they’re very good and they’re full of very caring individuals who want the best for all of their residents.

Francesca La Frenais:

Even when I talk about care homes, you still get a lot of people who say, “Well, I wouldn’t want to be in a care home. I wouldn’t want to end up there.” From my experience, I’m looking forward to going into a care home. There’s lots and lots of work going on in care homes, and training like this can obviously hopefully make them even better places. But there’s also lots of new initiatives, intergenerational stuff, getting kids in there. There was TV program opening the doors a bit more and not having the care home generations isolated as they are. I think that can only be a positive step really.

Dr Megan Calvert-O’Hare:

Okay. So you’ve said that you’re at the end sort of, and now you’re collecting the data. Are you both due to finish your PhDs soon with that data?

Dr Penny Rapaport:

Yes.

Dr Megan Calvert-O’Hare:

Yeah. Hoping to submit in a few months.

Dr Penny Rapaport:

Yeah, neither of us are using that data actually for our PhDs. So it’s fine. The data I needed was up to the point of finalizing the intervention. So actually, we are both going to finish this summer, roughly, give or take a few months. And your PhD is on stream two data, isn’t it?

Francesca La Frenais:

Yeah. So I’m looking at medication use in care homes, and that’s coming from stream two, which was finished a while ago.

Dr Megan Calvert-O’Hare:

Okay. Do you have any advice that you would give other researchers working in care homes?

Dr Penny Rapaport:

I mean, I think actually building up relationships is really, really important. I think it is in any sort of applied health research. But I think getting people on board, really getting out there, explaining to people what the study is about, and particularly for intervention studies, not going in as experts with the attitude that we’re going to come in and tell people-

Dr Megan Calvert-O’Hare:

Fix, yeah.

Dr Penny Rapaport:

… what to do and fix things and make it better. Because I think implicitly, you’re always just communicating, “Because actually what you’re doing isn’t quite good enough.” So I think approaching it from a quite curious position to think, well the people you’re working with … The people in the care homes are doing the best that they can in the particular situation they’re in, and actually spend time embedding yourself, getting to know people, getting to know who the people who you’re going to get a positive response from are. Don’t get kind of … What’s the word I’m looking for? Sort of put off. Just persist with it really, because it can be just quite … I mean, we talked about the positive things, but it can be really, really hard, because people are really busy. Remembering that the priorities that we have and the timelines we have as researchers are not the same as the priorities and timelines and challenges that they’re facing day to day. So us turning up and going, “We need to have this person phoned by Tuesday,” isn’t always going to work.

Francesca La Frenais:

There’s definitely things you can do to make that easier, always budget more time.

Dr Megan Calvert-O’Hare:

Yeah. That’s good advice.

Francesca La Frenais:

And set expectations very clearly from the get-go. As Penny mentioned, finding that point person. In some places, that was care manager. In some places, that was the activities coordinator. It’s rarely the home manager who’s been that person, that someone who is a bit more on the floor [crosstalk 00:18:29]

Dr Penny Rapaport:

I feel it’s like a really good administrator, actually, who’s just really on it who knows who you are.

Francesca La Frenais:

Yeah, and building positive relationships and giving something back as well. The stress management went down really well. They loved that, and I think they found it quite a positive experience. But the challenges are just challenges that you’re going to find in a care home, and you’ve got to expect that you’re not going to be able to get around them really.

Dr Megan Calvert-O’Hare:

Okay. Have you got anything else to add about your study?

Dr Penny Rapaport:

I hope it does work. I mean, what we’re trying to do is reduce agitation and improve wellbeing. So let’s hope that that is what happens [crosstalk 00:19:18]

Dr Megan Calvert-O’Hare:

I mean, you said you had some anecdotal evidence. Is that positive?

Francesca La Frenais:

Yes.

Dr Penny Rapaport:

Yeah.

Francesca La Frenais:

Yeah. No, we’ve had some really lovely stories. Their training, as you mentioned, is focused on agitation in dementia. But most of it is tailored to the residents that are in the home and very flexible around that. What often happens during the training is that there are a few key residents in each home that are quite challenging for the care home staff to look after. So we focus on them a lot of the time over the course of the training and following how their plans, their action plans, around those and the different ways that they’re trying to intervene in that agitation. Hearing from the staff, there’s been some really nice and quite impactful changes that they’ve made.

Dr Penny Rapaport:

Yeah. I’ll hear it through supervision, but it will be like the same person talks about a few times. Then it’s like, actually the staff said they’ve started coming out of their room and coming into activities or-

Francesca La Frenais:

Yeah, eating with the other residents.

Dr Penny Rapaport:

Eating with the other residents.

Francesca La Frenais:

We had a resident who was just in her room a lot of the time. But following the training … It’s hard to say what impact that we had, but they were just trying a lot harder. I think they were trying before, but I think it’s just hearing from their colleagues about what worked. That’s one of the best things about the training is that it just gets everybody in the same room, and they hear what works for someone else that wasn’t necessarily shared with them before. That’s something that they can take and try out themselves. That seemed to be a very positive impact of it, of just giving them a space to talk themselves, because they often don’t have time for that to hear from each other.

Dr Megan Calvert-O’Hare:

I read that it’s estimated that around 50% of people with dementia have agitation. Is that right, or is that a bit high?

Dr Penny Rapaport:

So I think in care homes, I think in stream two, which was the big study we did before this, I think 80% or 85% of the people … So it was about 1,500 people with dementia living in care homes in the UK. It was 80%, had-

Francesca La Frenais:

Some form-

Dr Penny Rapaport:

… some symptoms of agitation. I think about 45% had clinical levels of agitation. So it’s very high in care homes.

Dr Megan Calvert-O’Hare:

Yeah. So an intervention like this can have a massive impact.

Dr Penny Rapaport:

Yeah. I think what we found was that it’s very much related to quality of life. So if you have agitation, your quality of life is worse. It’s the most challenging thing for staff to manage, so there’s a big reason for trying to kind of-

Francesca La Frenais:

Yeah, and there’s a big economic impact of agitation as well.

Dr Penny Rapaport:

Hopefully …

Francesca La Frenais:

Fingers crossed.

Dr Megan Calvert-O’Hare:

Okay. Well, thank you very much. This has been really informative. So, I’d like to thank our panellists, Penny and Frankie, and hope you enjoyed this recording. Please remember to subscribe to this podcast through SoundCloud or iTunes. Tell your friends and colleagues and share via social media using the hashtag #ECRDementia. Tweet @dem_researcher if you’d like to get involved or have any suggestions for future podcasts. Our website is constantly updated with funding opportunities for those PhDs and job listings, so make sure you take a look at dementiaresearcher.nihr.ac.uk. Thank you, and come back soon.

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