Podcast – Rare Dementia Support Impact study

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Megan O’Hare:

Hello and welcome to another podcast from dementia researcher. The rare dementia support impact study is a £3.65 million research project carrying out the first major study of the value of multicomponent support groups and affiliated legal advice service for people living with or supporting someone with a rare form of dementia. It comprises the five following work packages: the longitudinal cohort interviews to establish the needs for those affected by rare dementias and when their required theoretical development, developing measures, novel interventions and economic analysis and was one of five funded as part of the ESRC NIHR funded dementia research initiative. The rare dementia support impact study is a five year collaboration between University College London Bangor University and Nipissing University in Canada is led by Professor Sebastian Crutch and today I am joined by two of the researchers involved in the study at the UCL site: Emma Harding, who is in the final year of her PhD and writing up now and Emilie Brotherhood who is a second year PhD student. Welcome to both Emma you have been a panellist with us before talking about the use of technology and dementia research, nattily entitled echoes around the home. If you haven’t listened to that one, please head over there and listen to that after this one, but maybe we can have a brief introduction from you both your backgrounds, who funds you, your hopes and dreams.

Emma Harding:

So I am a psychologist, by background and I’ve been at the dementia research centre for five years now working mostly with people who have a rare kind of dementia called posterior cortical atrophy.

Emilie Brotherhood:

And I’m Emilie Brotherhood. So I started at the dementia research centre, with Emma also five years ago and I’m research psychologist and research associate and work primarily on the rare dementia support impact study

Megan O’Hare:

Did you both start as research assistants?

Emma/Emilie Brotherhood:

We did, yes

Megan O’Hare:

And then have your PhD’s been part-time or did you just stop doing research assistant and became PhD students?

Emilie Brotherhood:

They’ve been part-time for both of working alongside our studies and our PhD projects by and large feed into what we currently do for our 9-5.

Megan O’Hare:

Would you recommend a part-time PhD or has it been stressful doing both?

Emma Harding:

I would super recommend it, I think, if you’re full-time work overlaps enough with it I think it’s really brilliant to be part of a team and have that kind of ‘I’m at work’ approach to it.

Megan O’Hare:

Oh that’s interesting, I’ve not really thought about it like that. I think when I was working in the lab, we had a couple of people who were doing part-time, but they ended up doing more tech jobs, so that was sort of making solutions and then ‘I’m doing my PhD on the side’. You know, it didn’t really overlap very well. Anyway, shall we go through each of the five work packages as a starter for 10, so maybe Emilie?

Emilie Brotherhood:

Yep sure, so we’ve got five packages overall and the first one is a longitudinal cohort study, which mainly consists of interviews. So what that means is that we’re asking people the same questions over a period of time and we’re asking both people living with rare forms of dementia so just to clarify, that’s dementia that often presents with symptoms other than difficulties of memory and often starts at an age before 65 or when people are often working age. So interviewing these people every six months or so over a period of a number of years and that’s really to establish particularly what their support needs are, and when those needs are required, so that’s the first work package.

Megan O’Hare:

Sorry can I just ask, so when do you start to enrol people to the study, at what point in the diagnosis or do you see what I mean?

Emilie Brotherhood:

The membership of rare dementia support is over about 1500 people and these can be people at various stages of their diagnosis. Some people come to our support group meetings querying they think something is wrong, but they haven’t had a formal diagnosis. Or they are not sure how to get access to the right healthcare professional to get that diagnosis. Right through to carers who now attend our support groups without their partners because for example they can no longer come due to being at such a late stage of their disease.

Megan O’Hare:

And all of them would be eligible to do the questionnaire so even someone who was just coming with concerns?

Emilie Brotherhood:

Absolutely. I think it would be, It’s useful for us to capture all of the experiences of being affected by, or thinking you may be affected by a rare dementia.

Megan O’Hare:

That’s great

Emilie Brotherhood:

So that’s the first one, Emma do you want to kick off with the second one?

Emma Harding:

Yep, so the second one, the theoretical development, which is a bit jargon but basically just trying to understand how support groups work for people. Me and Emilie and colleagues have all helped at lots of support groups and you meet people who are there for the first time, usually about 1/3 of the people there are there for the first time. You meet them. They are obviously quite nervous. That is understandable and quite stressed and worried maybe and then we go into this group meeting, and when you escort them out afterwards, it just feels different and they seem to just have had an experience that has really benefited them. And we really want to understand more what happens in that meeting exactly the processes and mechanisms by which the groups do manage to help people and because they multicomponent as well, so there are some small group discussions, there are some bigger talks, yes so it is really teasing apart what is helping people in which way

Megan O’Hare:

At the moment have you got any theories on the theoretical development?

Emma Harding:

I think it’s going to turn out to be quite complicated. I’m sure that because everyone comes to this sort of journey with a different experience and their own preferences for how they want to engage with the service so I’m sure it’s going to be a case of different things work for different people. So yes it is working out exactly which ways.

Megan O’Hare:

In a very basic way, though I guess it’s taking something that you feel is a problem and then saying it out loud and getting validation or you know other people in a similar situation can instantly make you feel relieved or you know better.

Emma Harding:

Yes, I think that’s a massive part in as Emilie was saying, people struggle for a long time to get the right diagnosis and they spend a lot of time talking to healthcare professionals who maybe aren’t familiar with their condition so to walk into a room exactly as you say and for someone to say, ‘ah I know why you would have had trouble with that door’ or something like that is really validating for people, absolutely.

Megan O’Hare:

Also time, I mean you can go and see a healthcare professional for 10 minutes say at a GP or further down the line still it gives sort of focussed time on what you’re trying to say.

Emma Harding:

Yep, absolutely I think that is a huge part of it.

Emilie Brotherhood:

I think what’s really unique about this project is that we actually have the opportunities to take something that we anecdotally think ‘oh that works’ and then apply sort of empirical investigation into it so we can actually tease out:  is it the fact that you’re speaking to somebody who has the same condition as you, or is it access the professionals or is it the time. And I think, to be able to kind of tease those bits out is what’s gonna make this project really special.

Megan O’Hare:

Okay number 3

Emilie Brotherhood:

Okay, shall I take this one? So we’re interested because we psychologists and we’re always interested in measuring behaviour looking for and developing novel ways to look at how and what’s important for people when accessing support groups and what’s going on. Now the problem with current measures is that they often focus on more typical forms of dementia, so that will be typical Alzheimer’s disease where somebody would typically begin to notice difficulties in their 80s and have problems with memory, but so those tasks are mostly, and tasks, are mostly focused on accessing difficulties in memory, however, there are lots of different difficulties that people with rare dementias face and so the idea is that we would develop novel measures. And one example of this is to develop a measure of resilience. This is often the case that there’s loads of strengths and capabilities of our rare dementia support group members, but they, it’s not often captured and mostly tests tend to focus on people’s symptoms and difficulties rather than those amazing demonstrations that we see when people say about different life hacks that they’ve come up with for example to get to get around the things they find difficult. So that’s one aspect and one example of the measures that we’re interested in developing. But also we’re going to be taking the analysis from all of the longitudinal interviews I mentioned earlier, and then from the ground up, kind of working out what’s important to the people with the dementia and their carers and develop measures based around the analysis and what we find in the first bit of the project.

Megan O’Hare:

Ok, moving on to number four novel interventions.

Emma Harding:

Yes so we will be developing an online intervention to support people affected by dementia, so people living with dementias and carers as well and this really speaks to one of the main aims of the project is to increase accessibility of these services and obviously we know that we can run some fantastic groups in London and other regional locations across the UK, but often people are, you know, at three or four hour train journey from their nearest specialised group, so we think their potential value of online interventions could be huge to support people and also we have a lot of new enquiries and new members who are based overseas who may never have met someone with their condition before we really want to develop something that can be reached by those people as well.

Megan O’Hare:

Would you try and do not just online you know a screen but would you try and actually have face-to-face online do you see what I mean? So obviously from your group, one of the things I imagine is that actually talking to someone in the same room, having had to leave your house is quite a big thing and that could make you feel better having actually seen someone so doing an online quiz or you know, just filling in a form probably isn’t going to have the same impact maybe as actually seeing someone’s face on the screen.

Emma Harding:

Yes, I think, absolutely. And we’ve just started to live stream our meetings at the moment so that the talk in the morning will be live streamed and that’s been really well received, but often people will say oh, it’s such a shame you can’t live stream into a chat over lunch or a small group discussion afterwards and so I think that’s something we really keen to be part of that, actually, to have real-time, face-to-face virtual conversations with other people who are affected.

Megan O’Hare:

OK and then number five; economic analysis

Emilie Brotherhood:

Yes so finally on to the last one, we’re keen to look at the cost effectiveness of the different kinds of support that, that’s available for people with rare dementias as I’m sure everyone listening  is aware funding is a major issue for both dementia research and care, and so if going to demonstrate that these support groups are valuable in the way that we run them or perhaps in novel ways that we can add into it. We need to also in parallel show that this is a sustainable and effective model from economic point of view as well.

Megan O’Hare:

So that’s not just how much it costs, it’s how much it’s also saving in you know, hospital time, all that sort of thing.

Emilie Brotherhood:

Absolutely yes. In these things are, really complex and working with a great group in Bangor, a group of health economics to be able to tease those things out.

Megan O’Hare:

OK, that sort of comes on to one of my points when you mentioned Bangor University because this is spread over a few sites isn’t it: UCL, Bangor and Nipissing University in Canada. So are you working with people there, are you collaborating with them, how’s that working for you?

Emilie Brotherhood:

It’s working really well, so we’ve got a very broad team and lots of different, not only working all over the world, we’ve got different people from different disciplines as well. So we’ve got a really rich research team together. We meet regularly and we’ve got a good collaboration I think going on and yes they add lot, lots to the process.

Megan O’Hare:

What are your actual specific roles in the study now you know we’ve discussed the five work packages. What are your specific roles?

Emma Harding:

So I, my background and PhD work has mostly been using qualitative methods, so I will be mostly involved in the qualitative data analysis and that will be soon of the thematic analysis of the initial interviews and the longitudinal interviews that repeat as well. But we also have some really exciting, innovative methods to use, so in the theoretical development package, we’re using something called situational analysis which will allow us to look not only at our members and what they tell us about their experiences, but also about other kind of structures and factors which influence the whole situation of rare dementia support so things like policy, venues, facilitators, the agendas the bigger public discourses of dementia that are going on at the same time, so that’s really exciting day.

Megan O’Hare:

Emilie

Emilie Brotherhood:

Day to day I’m the programme manager for the project, so I’m coordinated a lot of the study set up, the ethics, and I also work alongside the rare dementia support service in terms of the governance and also as a research psychologist I’m really keen to get involved in the quant analysis of all the data once it’s gathered, and so to get my own caseload to start interviewing people and see what we can pull out from that.

Megan O’Hare:

So this is a five year study. Whereas most funded studies tend to last three years. What will that length of time allow you to do with this project.

Emma Harding:

I think as Emilie was mentioning about work package one and interviewing people over time obviously, this just gives us a broader scope to do that so we will hopefully be able to interview people multiple times to see how they needs are changing over time. And I think that’s especially important given that people come to our service at different stages in their condition so we really want to, yeah, just see how things change over time for different people with the different and diagnoses and also it means will have time to actually implement some of those findings so that they can feed into other work packages as Emilie mentioned they can feed into the measure development and they also will be really fundamental in informing the online intervention as well and just having that breathing space to do that.

Megan O’Hare:

Those things can carry on in parallel, you’re not waiting for the longitudinal study to totally inform the other bits are you?

Emma Harding:

No, so I think that’s the benefit of it being kind of people being at different stages at each of the waves of interviews. It will hopefully be able to get a mix of experience at each stage that we interview.

Megan O’Hare:

And how you are involving people who are affected by rare dementias in the study. Are they involved in the actual development of the questionnaire?

Emilie Brotherhood:

Yes, so I mean people affected by the rare dementias have been involved from the grant application stage onward, so we are lucky enough to have Roberta Mickey Jackson, who, she formerly cared for her husband, Noel, who lived with a rare form of Alzheimer’s disease called posterior cortical atrophy and Roberto has been on the, she is a member of the team and a co investigator on the project. And we also have other members of our research team who have personal and lived experience with a rare dementia and so from the off I think we’ve felt pretty comfortable that we have involved and people affected by rare dementias in this project. One of the things we are also keen to look at is to co design the project with our other members. And so, for example, we currently conducting a study to form a consensus about the kind of outcome measures that we’ll want to achieve from the study. So that’s using a method called the nominal groups technique and so it’s a sort of iterative process and discursive process by which he can have both a group of people affected by rare dementias and the research team feeding into that process, you end up with a consensus that doesn’t just consist of the researcher saying this is what we think we should do, it’s actually from the ground up.

Megan O’Hare:

And that will continue throughout the study, it’s not just a one-off thing at the beginning to get a grant.

Emilie Brotherhood:

Yes, absolutely, this was just something to get the ball rolling but we definitely see loads of opportunities; all the members to get involved as much or as little as they feel is comfortable for them.

Megan O’Hare:

OK, and then there was a bit at the beginning ‘affiliated legal advice service’. Could you maybe tell us a bit more about that?

Emilie Brotherhood:

Yeah sure, so this is a group at UCL called Centre for Access to Justice and they are a group of legal professionals who have very generously teamed up with us to provide a time for free. And this is to provide a legal service and a free one-off consultation for anybody living with or affected by a rare dementia who might need to consult a professional lawyer. And this can range from lots of different things, from how to tackle those very very long forms that you get when you’re trying to apply for financial support or PIP payments, right through to people having difficulties and being in trouble with the police because of changes in behaviour and personality which you can attribute to rare forms of dementia such as frontotemporal dementia. So that’s a service that is provided for them for free, both through the support group meetings and will soon we hope to be online as well, so people can get access really quickly.

Megan O’Hare:

Wow, that’s really great, I know it really helped my mum when my dad was diagnosed that she got some financial support, not support but help. It was actually the PIP form that was, yeah.

Emilie Brotherhood:

Yeah I think everybody struggles with that form. So if we can make it, we’re thinking of ways that we can you know put tutorials up and make it easier for people to actually get what they need and to also understand the legal terms around it and the applications of when you say one thing, what that might lead to being approved or rejected for that support.

Megan O’Hare:

I’m mean, that’s not just a rare dementias thing is it, that’s

Emilie Brotherhood:

No, absolutely not. I think we are going to start small but that there is no reason to say that we would make an open access to anybody who is affected by any kind of dementia.

Megan That’s amazing. So will you be linking in with the other projects funded as part of the same initiative?

Emma Harding:

Yes, so there are 5 studies in total, funded in this dementia research initiative and three of those are at UCL and aside from ours, they, the studies span the whole sort of trajectory of dementia if you like. So there is the project led by Claudia Cooper, at UCL, which is the Appletree project, which is about prevention and then there is also the embed project led by Liz Sampson, which is about palliative care and end-of-life and so we are writing a series of protocol papers for a special issue of the International Journal of Geriatric Psychiatry together. At this stage while we’re all sort of designing our separate protocols, but we hope that in terms of our findings as well there’ll be some ways we can integrate the way we present those, in the way we disseminate them and because of some real overarching issues, including with Sube Banerjee’s team in Sussex about accessibility really, and reach of people and there’s a really key themes that run through all the projects I would say.

Megan O’Hare:

So you can overlap or at least learn from each other on those sorts of issues. So obviously accessibility you mean to services and that sort of thing. So for prevention that might not be as big a deal but the palliative care…

Emma Harding:

Yes think it’s working out where and how we can look across all the projects and see where those opportunities for linking are and I think it will be really exciting when we get to the stage of findings and we can think about some public engagement outputs as a whole team because I think a lot of what we going to find is not just relevant for other academic colleagues but for the general population and practitioners working in the community as well.

Megan O’Hare:

I actually wondered just on a sort of practical level, as part of the five year funding, is there any public outreach sort of set aside money or is that just totally at the end, you’re like ‘right, we’re going to need to publicise this now and you’d have to apply for more funding. I’m only asking because it comes up quite a bit: implementation, how you actually go from the academic paper to it being useful for other people and disseminating your work. Do you know if as part of your five year money you get, I don’t know, marketing budgets let’s call it.

Emilie Brotherhood:

There is there is money in there in the grant application for public engagement, and I think, so Emma and I have both been part of a wonderful residency based at the hub at the Wellcome collection prior to this project starting. And what was incredible about that is that we had a dedicated communications person who just took our findings and just, we had exhibitions and loads of different installations and different events that I think it really opened our eyes and minds to the power of communicating a narrative. So I think we’ve come into this project probably a lot more conscientious about public engagement than perhaps we would have done before and so we’ve got lots of things planned. I mean starting to kick off with more traditional approach to start off with conferences and just like laying the foundations and then eventually want to be in appearing at different festivals, public engagement pint of science that can thing

Megan O’Hare:

There is often a comparison with cancer research and the amount of money that is put into them and how many researchers but in a way, dementia is kind of different to that. It takes over a lot more of your life, so having a whole thing where you go to festivals and talk more is quite a big part of dementia research because it’s about telling people about what you’re doing and how you can help and access to different services and this can change massively over time. I think that’s a big key one that you say here about your longitudinal study, it will change over time and having access to the right support at the right time obviously seems key.

So what tips have you got for other ECRs working on long studies across multiple sites?

Emma Harding:

I think a really important thing is to make the most of that sort of multi-site big scale project, so you hopefully in that already have friendly institutions that you can go and speak to and that’s really great for yourself and presentation practice but also give you the opportunity to network with others and build other sorts of collaborations which think is really important. And I would say as well to try and strike the balance between, I think in a big project it’s easy to get sort of swept up in in the momentum of it and in our project we have a really strong team identity which is great, but also the fact that we are interdisciplinary I think it’s really helpful to keep in mind your discipline and others, and where you can learn from each other and taking up the opportunity to learn novel techniques that you may be able to impact your practice kind of ongoing.

Emilie Brotherhood:

I think my advice would be to try and not be intimidated by how senior some of the members are in your team and to speak up at meetings, often because in really large projects a lot of the groundwork and the detailed work is being done by more junior members of staff – simply because senior researchers and PIs don’t really have time to be sifting through literature and the most up-to-date findings so you can often find that you’ll be sitting in a room and find that you’ll be the person that’s actually the most up to date with the topic so I think it’s important to realise that sometimes the whole room might turn to you to actually ask your opinion, I think is important to give a true and honest account of what you found and what you think, without being perhaps deterred and how senior some of those people sitting on the table are.

Megan O’Hare:

That’s really good advice that I am definitely gonna use in my next team meeting!

Well, thank you both today. It’s been really interesting and good luck with the five year study, has it started? Yes, okay, how far into it are you?

Emilie Brotherhood:

Nine months

Megan O’Hare:

Okay so good luck with the next four years and three months.

And if you have anything to add on this topic drop us a line on Twitter using the #ECRDementia.

And finally, please remember to subscribe to this podcast, through soundcloud and iTunes and Spotify, thank you.

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