Podcast – Neighbourhoods, Dementia & Co-Production in Action

Voice Over:

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

Adam Smith:

Hello, I’m Adam Smith and I am delighted to be recording this podcast for the Dementia Researcher website. Today I’m in the North of England at the University of Manchester to talk with a team who over the last 5 years have been working collaboratively with people living with dementia and family carers on a study focusing on neighbourhoods and dementia. So before we get going, I just want to talk a little bit about our website for those who listen to our podcast but might not yet have found time to visit the website. Our website is aimed at early career dementia researchers, however I think there should be something there for people working in other fields and at later career stages. We add new content every day from blogs discussing people’s research, career articles, and then we also list out events and funding opportunities that are coming out. So, so please do visit the website which is dementiaresearcher.nihr.ac.uk, register today and then every Friday you’ll get a short, weekly news round-up which you can then see if there’s anything of interest that we’ve published in the week before and then visit and take a look. Ok, so back to today’s podcast. Thank you for bearing with me and I’d like to say hello to Maria Walsh, who is the co-researcher and study adviser, Dr Sarah Campbell, who is a Research Associate here at the University of…Manchester University, no is it University of Manchester or Manchester University?…

Sarah Campbell:

I think University of Manchester

Adam Smith:

Yeah I think it is University of Manchester, I’ve written that down wrong, and we’ve had that before. And Professor Andrew Clark who’s at the University of Salford.

Andrew Clark:

That is correct.

Adam Smith:

And you’ve had a bit of trip to get over here, or are you normally based here anyway?

Andrew Clark:

No, it’s only a couple of miles away…

Adam Smith:

Ok…

Andrew Clark:

So it’s a straight forward trip.

Adam Smith:

So do you cycle, do you cycle, scooter, are you on the bus?

Andrew Clark:

I caught the bus tonight.

Adam Smith:

On a bus? Fantastic, do you know, I can’t remember the last time I got a bus. I got an electric scooter for whizzing around London and so that’s my new form of transport, which is fine in London but the minute you get it out of your boot anywhere else in the country everybody looks at you like…because the rest of the country hasn’t caught up with electric scooters yet I think. Ok, so let’s get going with some introdooctions, introdooctions? Introductions, so perhaps maybe if I can come to you, ah, you first Sarah, if you’d like to introduce yourself.

Sarah Campbell:

Hi, yep, my name’s Sarah Campbell and as you say I’m a researcher at the University of Manchester and I’ve been the researcher on this project, the neighbourhoods: our people, our places, for the last five years, which is part of the ESRC/NIHR Neighbourhoods and Dementia project.

Adam Smith:

Fantastic, so is that back to when the, there was that big themed dementia call, well five years ago now then, is it as long as that…

Sarah Campbell:

Yeah

Adam Smith:

And this was one of those, there were 10 big studies that were funded weren’t there, which were huge news at the time and this, I remember them, was the MARQUE study one of those as well? And, that Gill Livingstone’s study down at, I think there were quite a few funded around that same time.

Sarah Campbell:

Yes, that’s right and Professor John Keady who is the Chief Investigator is the head of this project, yeah.

Adam Smith:

So we’re not going to be talking about this whole study today particularly are we?…

Sarah Campbell:

No that’s right…

Adam Smith:

Because there’s obviously with that much money over five years, I imagine there’s all kinds of things gone on. But we’re going to zero in on a particular part of that research which…

Sarah Campbell:

Yes, yes so there were eight programmes, eight work packages within the Neighbourhoods and Dementia programme, ah Neighbourhoods and Dementia Programme and the Neighbourhoods, our people, our places study is work package 4, one of the work packages in that, and that’s what I’ve been working on and I’m going to talk about…

Adam Smith:

I’m jumping in here to your first question aren’t I…

Sarah Campbell:

Yeah…

Adam Smith:

Maria, maybe if you’d like to introduce yourself as well.

Maria Walsh:

Yes I’m Maria Walsh, I’m living with Alzheimer’s and I’m also part of the study for the Neighbourhood and Dementia. I’ve been with this group for 5 years now.

Adam Smith:

Fantastic, and you live here in Manchester as well?

Maria Walsh:

Yes I live in Manchester

Adam Smith:

Brilliant, and Andrew?

Andrew Clark:

So my name’s Andrew Clark, I am a sociologist, though a geographer by training, I work at the University of Salford and I’ve been the co-lead for the work that we’re about talk about.

Adam Smith:

For this package? Hang on wait a second, before we go any further, how do you go from geography to this current…

Andrew Clark:

Well…

Adam Smith:

That’s a left turn at the traffic lights right?

Andrew Clark:

So as all good geographers will tell you we’re interested in space and place and this kind of question, the ‘why of where’ we used to get taught, so I’ve always been interested in where people live, I’ve been interested in the neighbourhoods and the places where people form attachments, I’m interested in where people used to live, where they want to live in the future, so it’s caught up in that human geography way of looking at the world, and its since then that I’ve moved into thinking about some of the more sociologically interesting things about places and neighbourhoods and communities.

Adam Smith:

I find that really fascinating and actually I talked about this on our qualitative podcast I’m going to say a few weeks ago but by the time this gets published it might have been a few months ago, about the idea of bringing people together from different fields, and I don’t think it is until you start to introduce those kind of slightly different kind of collaborations that you realise that, that how much support and expertise you can bring to a topic by looking outside of your own, your own initial, immediate field of, of expertise, so fantastic, that’s really interesting.

Thank you very much everybody for introducing yourselves. Sarah, I cut you off slightly before because you, my fault entirely, and started to tell me anyway about this thing. So maybe could you start by telling us about the programme and this particular part.

Sarah Campbell:

Yeah, thank you yeah sorry I jumped ahead didn’t I? Yep so the work package we’ve been working within has been interested in the kind of every day experiences of people living with dementia in their neighbourhoods and we’ve been interested in how neighbourhoods might support and enable to live their lives as well as possible or what might be the challenges for them in their neighbourhoods so we’ve talked, the project has taken place over three field sites, Manchester was one of them, Greater Manchester, which is where we’ve all worked, but we also have colleagues that were in the Forth Valley in Scotland at the University of Stirling who led the work package, and also colleagues in Östergötland in Sweden who also were working with us exploring neighbourhoods with people in Sweden.

Adam Smith:

That’s interesting, do you think there is a definition or a difference between neighbourhoods and communities? Because you hear the work communities used quite a lot around, around, around dementia care and particularly in care homes in creating communities which is something that seems to have fallen by the way that streets and things are designed now. What is the difference between neighbourhoods and communities now? Am I? Do I need to point that one to Andrew now?

Andrew Clark:

So I’ll answer that one, so I, there is clear, there is a lot of overlap – and when we’re thinking in everyday term, I think people use neighbourhood and community interchangeably. I think there is a difference, I think there are some important differences, when we think about communities I think we’re interested in communities of interest or activities or a way of living or a collection of interests or political positions, that we have in common with other people – so there’s commonality in community which can lead to belonging and inclusion and at the same time exclusion and perhaps marginalisation of others. Neighbourhood on the other hand I think is a much more spatially designed thing, it’s a location, where we usually live and work…

Adam Smith:

Yep…

Andrew Clark:

And while you can have community of place, so a sense of commonality and belonging to the place where you might live or work, not all neighbourhoods give rise to communities, just like not all communities are place-based.

Adam Smith:

Yeah I get that now, having asked that question I can kind of immediately see the answer. Because you get communities that could be, you know, just something that collects, brings together a group of people rather than the physical location where they’re based. So is, so when we talk about neighbourhoods then, so this specifically thinking about that kind of putting that spatial awareness around…

Andrew Clark:

Yeah so the, or the particular part of the work was all about trying to understand to that immediate location can support people, how people form attachments or belong to those places and also some of the challenges that living in particular places might, might create for people. I think it is fair to say that one of the things we’ve found from this is that the way in which we might have conventionally understood what a neighbourhood is, as for example a place where you can walk around within a relatively short space of time, are not really the sorts of neighbourhoods that the people we’ve been talking to are experiencing. So the neighbourhoods that we’ve learnt about, that we’ve heard about from people like Maria, are much more network, much more stretched across much broader spatial scales than just the immediate location, so people are not just, so when people think about their neighbourhood, they’re not just thinking about the people who live next door or who live on their street, they’re thinking much more about where they go to to engage in the ordinariness, the everyday-ness of their lives.

Adam Smith:

So, yeah, so the people and the place. So my next question talks about graphic comics but honestly that feels like quite a leap from where we’re at now in this conversation to graphic comics. So how do we get from neighbourhoods and places to graphic comics? I don’t know, I’m looking at who wants to take that question between Andrew and Sarah maybe?

Sarah Campbell:

Shall I start?

Adam Smith:

Yeah go on

Sarah Campbell:

Then everyone can kind of add in, but I suppose part of the projects, the emphasis of the project was about being collaborative with people living with dementia. So right from the outset, one of the work programmes, work packages within the whole programme was about user involvement and there was a model that was created by Caroline Swarbrick called the COINED Model which was all about different ways in which we might collaborate and work alongside people living with dementia throughout the whole of the programme, so from initially thinking about the ways we might think about our research questions to the way we would create our methods and how we would carry our recruitment and who we would go and see. So Maria has been involved from a very early stage in thinking about the research and coming out with us and piloting the methods. So we’ve worked alongside people all the way through these different stages, so the leap to graphic comics really comes from maintaining involvement of people once we’d had the findings and we’d collected all of our data and analysed it we were then still working alongside people to say well what can we do, what can do with this data, what can we do with the stories that you’ve been telling us.

Adam Smith:

I see, so the graphic comics came in as a mechanism for disseminate…this was a mechanism for disseminating your research findings. So what was the, what was the research question then? That, that started off? What was the research question?

Sarah Campbell:

Why do neighbourhoods matter to people living with dementia?

Andrew Clark:

Yep and how can, how do neighbourhoods, how do people living with dementia experience their neighbourhoods, how can neighbourhoods be more supportive of people to live as well as possible, sort of independently or within their community.

Adam Smith:

I see, and so then the graphic, the graphic comics, or zines as we’re going to refer to them in the podcast, were a way of kind of. So, well actually why don’t we go to that. How do you go about working together to produce these graphic comments, comments? Graphic comics to disseminate that?

Andrew Clark:

Ok, so we’d been, we’d worked hard to include people throughout the research process from design through data collection and I sometimes think as researchers we, we miss out at the dissemination stage this idea of participation and co-production and involving people to re-tell some of the stories or re-tell the findings from the research so we were really keen that the findings that we’d come up with weren’t mine and Sarah’s findings, that these were collective stories that we’d all produced together, so we worked together with a small group of participants, and that included Maria and some others, to think about how we could tell these stories to other people. And the first thing, I’m speaking for you now Maria, but one of the first things the group said was whatever you do don’t produce any more leaflets.

Maria Walsh:

Yes

Andrew Clark:

Because there are lots of leaflets that serve a good purpose but there are many leaflets that people living with dementia can pick up and they said is there nothing else we can do to tell the stories in ways that were perhaps more fun or more interesting but still get some of the key messages of the research across. And it was actually the group itself that came up with this idea of producing what at the time we called sort of comics, or graphic illustrations that tell different snippets of the research in a visual form. The group were really excited to develop this idea, so Sarah and I found an illustrator who specialises in something called zines, which are, which are technically a low budget visual media that are produced fairly informally and to quite a low print run, so there is a long history of zine making amongst certain communities, fanzines is the original term, is where the term comes from. But this illustrator specialised in this particular mode of visual expression, or visual representation and he came along and met the group and then Maria and other people told, and worked with the illustrator to, to turn some of these stories into graphic form.

Adam Smith:

So, so what do you make of all this, Maria? I mean you’ve obviously been involved in this for quite a long time, not just in this graphic novel way of sharing the outcomes but from the start, I mean, I suppose before we come to talk specifically about this project do you feel like this has been beneficial from having your involvement?

Maria Walsh:

Yeah I do, I think the involvement is like true to, true to yourself. To everyday way of, an everyday way of living.

Adam Smith:

And so, is it, I mean how have they, how have you been involved, have they been asking you questions about how you live in the community and how you move around, have they been following you or adding trackers to you?

Maria Walsh:

Yes, no they didn’t add the trackers but they had the, Sarah did come with me on a walk round the area where I live and we’d a few discussions about what was important to me and she’d met some of my neighbours and some of the people in the shops where I live and it’s all contributed to the making of the zine.

Adam Smith:

Of the zine. So, so, how many of these zines are there then?

Andrew Clark:

So we have produced a series of three. Each one tells a different story through the form of a kind of vignette character who is, who comprises of a whole range of different stories that people told us. So the idea is hopefully that lots of our participants will recognise some aspect of their life in the zines. So each one tells a kind of day in the life of someone.

Adam Smith:

Who is the audience? Who are they aimed at?

Maria Walsh:

Well we mean to use them in places like doctor’s surgeries, libraries, anywhere where people haven’t got the literature to explain about what it’s like to live with dementia.

Adam Smith:

So they’re intended to be another mechanism like of, of sharing what life is like living with dementia with those, with those who aren’t necessarily as close to it…

Maria Walsh:

Yep

Adam Smith:

And I think a zine idea is really fascinating, I mean it works on several levels doesn’t it, because you can see how this might be of more interesting to kind of young people as well, but also as well people who may be don’t want to sit there and read a big long leaflet, or a, or go through in that way. I think this can, can tackle and explain…

Maria Walsh:

They’re easy to read, they’re like the books children start off with in school with just pictures and you can put your own, you tell the story as you see it. So there’s not many words or…

Adam Smith:

So, so you, did you have an opportunity then Maria to work with the, with the, what am I going to call him, the illustrator…

Maria Walsh:

Yeah we did, there was about, about 6 of us I think wasn’t there? And he did the illustrations. We looked through them and where it was needed we tweaked here and there, and we said that shouldn’t be here and, so it was our outcome at the end, that he changed, well not everything, but some of the ideas and put ours in

Adam Smith:

And did they all have a theme that runs through them, is there some kind of underlying lesson to learn here, some take away from these that you’re wanting, is this something about society, or community or the neighbourhood that you’re wanting to change?

Sarah Campbell:

Yeah, well we had 5 key messages from the research, so the, that had come out from all of the data that we had generated from all of our participants and those key messages were about the importance of the opportunity to stay connected to neighbourhood, people and place, the maintaining routines and habits and how that helped facilitate being able to stay connected and being recognised and having a sort of sense of belonging in your community. Lots of people told us about acts of kindness that were carried out by neighbours or people in local businesses that supported them to be able to live as independently as possible, like people taking their bins out for them, but also people living with dementia themselves told us about the kinds of things they did in, sort of giving back the things that they did to support their neighbourhoods as well. And also we talked, we learned that some people who don’t go out as often who are staying in more, how they still maintained connection to neighbourhood or what, what would be important in order to make that happen. So those messages sort of lead the way that we generated stories around them, so we would come up with, in the discussions and in the meetings we would talk wouldn’t we, about how, what kind of story could we tell that replicated those messages that had come out from the research. And so, as the, the three zines were created, the group became even more confident in saying what kind of stories they wanted you know. It was the first one I think was harder and it took much longer, and it, in terms of generating a storyline, whereas by the second and third people were saying that well actually we think it’s important that we tell this story, we haven’t seen this, so the third zine was about a couple and we had, we had, people wanted to express particular things that had come through their experiences that were in our data.

Adam Smith:

So as well as having real stories in this, are they real people? Are you, are you represented in one of these, these zines Maria, can you see yourself in it?

Maria Walsh:

Well I could do, yes.

Adam Smith:

Cos I, honestly I think this is a really fascinating and really interesting and quite unique as well, I don’t think I’ve come across anybody else who is sharing the outputs or getting the stories or messages across in this way. I mean you quite often see people will make videos won’t they or they’ll record interviews with people, or like you say, they’ll produce guidance document, or some info-graphic to try and explain this. But I think using this, this mechanism to, to try and deliver that message. I should make a, I should just say, I don’t know if anybody can hear that I think that’s the rain [laughing], it’s been quite wet in Manchester this week and if you can hear a pitter patter, that’s some heavy rain on the roof. So, maybe could you tell me whose idea was it in the first place to do it in this way?

Andrew Clark:

So we probably can’t, ah we probably can’t remember who, which individual had the idea, I know it wasn’t me that came up with it, so I think it was somebody within the group we’d been working with who just suggested one day a comic or a more visual way of telling the story. And the group between them kind of ran with that, with that idea. I think it’s probably fair to say that we’re not the only people who are making zines, I think since we’ve started producing them we’ve found all sorts of other people who have been producing zines as part of research work. I think I haven’t yet come across anyone who has produced zines within a dementia context, but that doesn’t mean to say it doesn’t exist of course, but I think what we have been doing that I haven’t yet seen other people do is work in this collaborative way with people to produce them collectively. I think so far the zines I’ve seen more of a researcher working with an illustrator rather than alongside participants as well.

Adam Smith:

What is the practical process of going from ‘hey, we’ve come up with this idea’ to having a finished product. And how are people involved in this, particularly when you’ve got this illustrator on the side, you’ve got people whose stories you’ve got here, or you’re wanting to share in this way, and then of course you’ve got the researchers off to the side trying to get their message across, how does that process work? Who wants to take that question?

Maria Walsh:

Well it was Dominic, Dominique was the one that came up with the illustrations wasn’t it? I don’t know whether he got his information from Sarah or Andrew, he came up with these drawings, he came back and we’d all got together, and we went through them and as I said we just tweaked and said well this shouldn’t be here, this shouldn’t be there and together it was a joint effort in…

Adam Smith:

So that came after they were already a set of drawings to begin with? So how did Dominic, is it Dominic, Dominique?

Andrew Clark/Sarah Campbell:

Dominique

Andrew Clark:

I was going to say Dominque is a brilliant illustrator, he’s produced the material and it’s really great.

Adam Smith:

We should give him a credit, what’s his name?

Sarah Campbell:

Dominique Brewers, yeah, he is fantastic.

Adam Smith:

And he’s in Manchester is he?

Sarah Campbell:

He’s based in Hebdon Bridge actually in Yorkshire.

Adam Smith:

Ok, so what did you give him in the first place to make this?

Sarah Campbell:

Yeah I think that just to say that the first zine that we made, I met with Dominique on my own first of all and talked to him about the research project and shared, and we shared with in some of the stories that we’re told so that he can a sense of what the research was about and what the project was about but he then came to, we had meetings where Dominque would come and start, he would sketch, in the first instance he sketched out some ideas around the experience of being in the neighbourhood and living with dementia. We were able to build out of that a story, but the second and third zine, the topics that were decided upon were decided in those collaborative meetings because it became more clear I suppose as time went on what the role would be and people became more confident at saying the stories they thought were important be told. And then we would tweak them, we also discuss what messages we’re getting across, what messages do we want people to find out from these zines. We’ve also got a set of sort of top tips that people from the group created, which are again based around those findings those key messages, about what was important to them, Maria and other members of the group about being able to stay connected to their neighbourhoods and the different ways in which they were enabled to do that.

Adam Smith:

That makes sense to me so then they came to you Maria, and then you and the others had an opportunity to comment and give you feedback and then they’d refine them and bring them back til you arrived at the…

Maria Walsh:

Yep

Andrew Clark:

I think it’s fair to say that at the time of the final zine it was much more of the group Maria and people were suggesting what the final theme should be about for example, and then you were much more, I think you were much more in control about…

Maria Walsh:

We were, we were more confident as to what we wanted to put in that final zine.

Adam Smith:

So you hadn’t decided at the start what the three would be, you kinda did the first…

Maria Walsh:

No, no

Adam Smith:

So just for the sake, hopefully I’m going to ask in a minute to maybe tell us where people can, where our listeners can go and find these on the internet somewhere to have a look, but can you just talk me through what this, what does this look like, is this a, is this a booklet, is this just a one-pager, I mean what do these look like, describe one of these zines to me.

Maria Walsh:

They’re like a comic book

Adam Smith:

So they’re like an A5?

Sarah Campbell:

They’re A4, that was a decision by the group. So it’s things like that actually that are really interesting that the group decided what size they wanted the comics, the zines to be because they felt that A5 was too small, they wanted something that people could get hold of, that would be really noticeable and that was easy to open and read through, the group decided that the group didn’t want them to be colour…

Maria Walsh:

No, we decided…

Sarah Campbell:

They’re black and white aren’t they

Maria Walsh:

Yes that’s right

Sarah Campbell:

The drawings. The front covers have got a colour…

Maria Walsh:

Yeah, that’s right

Sarah Campbell:

They were all decided, we had debates about what colour [laughing] they should be

Maria Walsh:

We did

Sarah Campbell:

So right, all those kind of details I think about the design and what they should look like and then they were taken, decisions were taken with the expertise of Dominique as well who understood because, so we had a batch of printing done that’s called Risograph paper which is a special paper that zines are often printed on to, and then they are also photocopyable so that they could have that sort of low-fi-ness that goes with zines, but, so from those kind of little, well not little, but the design decisions were made by the group but also the stories so he, Dominique would come with like a storyboard which would blow up to A3 so that people could see all the pictures and decide, look at the pictures and see what they felt was happening in them and did the story make sense. Did it need text? Because you were saying that you, it can be quite difficult can’t it to read text and you feel you can tell the stories…

Maria Walsh:

Yeah I can, yeah I can tell stories or read stories better like the zines are printed, I can’t, I can read but I can’t retain the information, or I find it hard to absorb what it’s all about but these I find easy to read, they’re like the story books you give children when they’re first starting to read and I think anybody who would have a problem not being about to retain information would find that easy to know what was going on.

Sarah Campbell:

They’re like an adult version I suppose because they are quite an adult style, aren’t they?

Maria Walsh:

Adult style, yep

Sarah Campbell:

I mean they’re a very, they are beautiful illustrations

Maria Walsh:

Yeah they are

Adam Smith:

And that, that’s interesting, so did the group, thinking about the messages here clearly they were your stories Maria that were coming out in here and the things you wanted to share with people although things like the decision to make it colour or the text are they, are there other people giving some input here because if you’re wanting to share those messages with the wider community who are going to help people living with dementia it’s kind of, those are the people to, to get feedback on from that, are they?

Maria Walsh:

Well we find that the colour does matter, the background colour and the colour that it’s written in…

Adam Smith:

Oh no, absolutely, I think…

Maria Walsh:

So we find, we sort of like based it along those lines that they are easy to read, and the colour, this is way they’re done the way they are.

Adam Smith:

So would you do this again? I mean what were the problems, I mean this, this doesn’t, I mean sure we’re saying we’re saying this is all fantastic, but I mean were there any problems along the way as well?

Andrew Clark:

I wouldn’t use the word problem…

Adam Smith:

Challenges

Andrew Clark:

I would say they were no problems there were perhaps some challenges that we had to work with, I think Maria would probably be able to articulate quite a few of the challenges from her perspective but from where I’m coming from I think the time is something to really consider. I think the first one in particular did take quite a while to arrange, perhaps I certainly think I’d gone into this quite naively and you know, to meet with the group and say we’d like to turn these into magazines or comics or something…

Maria Walsh:

It was comics, it was originally wasn’t it

Andrew Clark:

Yeah and then you know we met with an illustrator and said we want to turn our findings into a comic, I don’t think we’d quite realised all the stages involved, you couldn’t just send Dominique off and come back with the pictures so I think we learned quite a bit of the involvement that was required, I think we’ve, from this idea of co-production or working together with people I think it’s important to allow people to get involved in different ways, so we were really conscious that we wanted lots of people to help us produce these, not just who could come to the meetings, or be part of the group but we also met people in their own home and we sought our their views as well and it was about making sure people could contribute in ways that people were comfortable with and that obviously doesn’t necessarily mean everybody is contributing all of the time, but some people like Maria have actually contributed all the way through this and contributed to lots of other things.

Adam Smith:

I think, yeah I think you find that with PPI, with patient and public involvement particularly in everything is just be prepared for people to dip in and dip out as, as life gets in the way and circumstances come along so I think, I think before we’ve talked of start off probably with more people than you think you need on the basis that people will dip in for short times although that I think in itself can be challenging because then people dip in and out and you’ve got to bring everybody back up to speed and explain why some of the decisions that you’ve made have been made because that wouldn’t necessarily have been how they would have done it but then they’ve been away and suddenly come back in and coming. So it’s important but I think getting, getting coproduction and people involvement right is really quite hard I think because, I’m not going to say this in any bad way, I think some people are really passionate and feel really important that it be done in a certain way and if it isn’t done how they like it can be quite difficult. I know I’m quite opinionated and when things don’t get done how I like them I’m sure my colleagues would say he can be quite annoying when he does that. And there’s no difference, I mean I don’t want to kind of paint patient co-production and public involvement as some kind of rosy, some rose garden, because it’s not is it? It can be quite hard can’t it, you get a couple of people in there who want it done their way and if it doesn’t go their way because the other group have disagreed it can be really challenging to satisfy everybody. You didn’t have that? You weren’t the awkward one were you Maria?

[laughing]

Maria Walsh:

No I wasn’t the awkward one.

Adam Smith:

Were there awkward ones, no we won’t name names

Maria Walsh:

We won’t name names but…

Adam Smith:

But, but it can be like sometimes.

Maria Walsh:

It can be like that sometimes, people do like to, sort of like run the show, but if they’re challenged over, because you may have had a different opinion, it wasn’t, like you say they were a bit put out but yeah…

Adam Smith:

And I suppose that’s the point I’m making, I’m not, you know, is that trying to kind of navigate that, get the input that we want and make sure that everybody coming out of it feeling like their opinions were considered and that the end product is something that they all feel like they’ve contributed to and happy to can be quite difficult. But it seems here like you’ve done a fantastic job in getting…

Maria Walsh:

We had fun making it and doing it and I feel really proud and privileged to be able to be part of the production.

Adam Smith:

That’s wonderful, thank you.

Sarah Campbell:

I think because we had this wonderful output at the end of each of these, you know, each of these zines over the series, that really helped because we, we saw what we’d worked towards did we? And we everyone felt delighted with them and proud of them I think. When the first print run came it was really exciting and very rewarding for all of us I think to see what we’d managed to achieve to see these beautiful things that Dominique, we have to say, who’d done such a great job for us.

Maria Walsh:

He did

Sarah Campbell:

So that helped I think.

Adam Smith:

That’s good, so have you got a signed tucked away somewhere in a keepsake box somewhere Maria?

Maria Walsh:

I have, I’ve got three [laughing]

Adam Smith:

One of each of the three yeah. Well this is really good and I think before we, before we come to an end because we’re kind of out of time here, how are you evaluating the impact of these?

Sarah Campbell:

Yeah, yeah

Adam Smith:

It’s quite hard evaluating these, I mean you put these things out there all you can do is count how many people went and used them.

Sarah Campbell:

We haven’t done a formal evaluation, I mean we’ve been trying to gather feedback about the process of making them and we’re trying to write about that and talk about that, we’ve, everybody’s had opinions, when we’ve given out the group, each member of the group would take a quantity when they’d been printed and have been giving them out widely and we’ve been sort of gathering and hearing what people have to say about them, but we haven’t really done a more formal evaluation of them.

Adam Smith:

This is hard, which is why thinking about evaluation right at the start is important. Because if you’re wanting to do some baselining or something like that, you’d need to do those surveys and do that work and those interviews right at the start so at the end you’ve got that point you can repeat the process and compare and I think over a 5 year programme that’s got to be hard, of course this was a very well through thorough high-profile study so evaluation would have been in there from the start but it’s difficult.

Sarah Campbell:

But also I suppose with co-production we didn’t know what going to do at the end…

Adam Smith:

Of course you didn’t know…

Sarah Campbell:

So that makes a difference to in the way that you’re working, you don’t necessarily have a plan outcome.

Adam Smith:

And that’s interesting isn’t it and I think that’s quite often the challenge that people don’t understand is the difference between patient and public involvement and co-production. Is coproduction isn’t necessarily set out from the outset what you’re going to do, you’re open-minded that, that you work together to define that outcome as you go through the process of that study, whereas patient and public involvement, you kind of already know what you want you’re going to do, you’re just making sure, you’re just checking back that people are happy and you might amend it but it’s not actually deciding that. So actually, I can see a paper in that, about how do you evaluate, how do you properly evaluate studies that are changing as you go through in this world of co-production.

Fascinating, thank you very much. So what next, is this, is this the end of the programme, are you, have you got more work to do in, on neighbourhoods?

Andrew Clark:

So the programme itself is coming to an end. There’s always I think more work to be done in neighbourhoods, I hope that we’ll always keep hold of these values of co-production, certainly for myself, I have learnt so much working with people like Maria, about what it really means to work alongside people and also think a bit more creatively about how we tell other people’s stories. I always say as a researcher it’s my job to collect other people’s stories and then tell them to other people who can perhaps make a difference. And I think through this process I’ve really, it’s been a real privilege to not just listen to other people’s stories but actually work alongside those people to turn those stories into things, into outputs that other people can now look at. And hopefully you know think about and change some of their own practices.

Adam Smith:

Fantastic, thank you very much. So, where can you find these, on the internet for somebody who might want to go and have a look, are they as a pdf somewhere?

Sarah Campbell:

They are PDFs, people can write to me and email, my email address will be, will it be linked?

Adam Smith:

We can certainly put it in the text

Sarah Campbell:

I don’t know if we have a link on the neighbourhoods and dementia website, but we probably ought to have.

Andrew Clark:

We ought to before this goes out

[laughing]

Sarah Campbell:

Yes, it’s made me realise that we need to have that

Adam Smith:

Ok so what’s the website for the neighbourhoods and dementia website?

Sarah Campbell:

Neighbourhoodsanddementia.org

Adam Smith:

.org? Great so by the time this goes out you’ll be able to see these online. Thank you very much, I think it’s time to end today’s podcast recording. I’d like to thank our panellists; Maria, Sarah and Andrew. I think the main takeaways for me are try to be innovative in thinking about how you consider disseminating the outputs of your research is important and there are, there are new and interesting ways to do that. Co-production has clearly benefitted this and it sounds to me like it’s not just benefitted, but it wouldn’t have been possible to do this without coproduction in this way. Think about evaluation and how you’re going to do that, and also as well put some thought into how you manage co-production so that everybody feels like they’re having the right amount of, of input. And then, enjoy the outputs from that. Maria will you, has this inspired you to do other stuff? Are you going to help with some other research studies?

Maria Walsh:

I’m already being involved in a number of years for other research. At the minute I’m doing, we’re called the day group, it’s with the Deep, it’s trying to do questionnaires, to shorten them to make them more appropriate for the dementia sufferers, so they’re not as long and they’re not asking 6 questions, so we’re just making the one question, so we’re simplifying them and we’re in the process of doing that at the moment.

Adam Smith:

Wonderful, it would be remiss of me not to say that Join Dementia Research, which we’ve done a podcast on before is out there for anybody listening to this who is living with dementia or carers or family members who might want to participate in studies themselves you might find if you register there might be something for you. Ok, thank you very much, if you have anything you’d like to add on this topic please do post your comments below the link on this website or in the Spotify or SoundCloud feeds, or drop us line on twitter using the #ECRDementia, finally please remember to subscribe to this podcast.

Thank you very much everybody here for contributing and allowing me to visit you here in Manchester, please do remember what I said before about visiting our website and we’ve also started to transcribe all of our podcasts for those who might have challenges hearing them so if you have any colleagues out there that can’t listen to our podcasts please do point them to our website where you can get a transcript of them today. Thank you very much everybody I really enjoyed talking to you and I’m really looking forward to getting a look at these zines before I leave today, thanks.

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