Podcast – Alzheimer’s Society Impact of Patient & Public Involvement on Research

Voice Over:

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

Megan Calvert-O’Hare:

Patient and Public Involvement, or PPI in research, is a philosophy whereby research is carried out with or by people affected by a condition rather than about, for or to people. Over the past 20 years an increasing value has been placed on including the lived experience of patients and the public in research. Covering the full spectrum of basic science through to Health Services. Upon this day, all work for were funded by Alzheimer’s Society. Alzheimer’s Society has pioneered the active involvement of people affected by dementia through their award winning research networks since 1999. More recently, over the last year, Alzheimer’s Society has been considering the evidence surrounding how it involves people affected by dementia in research. And moving the conversation about PPI forward from proving why it should be done to really improving how it can be done in partnership with researchers.

Megan Calvert-O’Hare:

I would like to welcome our three panellists today. Anna Smith, a research engagement manager at Alzheimer’s Society, has worked in the field of patient and public involvement for the last six years. Kirsten Moore, a senior research fellow at UCL and the Marie Curie Palliative Care Research Department. Kirsten’s current fellowship is concerned with the grief that carers often experience whilst caring for someone with dementia. And Jane Ward, an Alzheimer’s Society research network local area coordinator for Southeast England with a degree in Physics from Liverpool University. Jane cared for her mother Ella, who was diagnosed with vascular dementia in 2009.

Megan Calvert-O’Hare:

Welcome to you all. Should we start with a fairly simple but important distinction? What is the difference between involvement and participation? Anna?

Anna Smith:

Hi. Yes. Well, you said it in your intro basically. So participation is where the people involved are the subject of the research. So they’re providing the data for the research. It’s being done to them or on them in a way. Whereas involvement is working in partnership with people who are affected either as a person who has the condition or a carer of somebody who has the condition.

Megan Calvert-O’Hare:

Okay. So when you are having research done to you and you are participating, you I guess don’t really have any say in the research and at the end you don’t know any of the results. If you’re involved in it from an earlier stage, you have a lot more say in the research. Do you also get to see the outcomes of the research and feel more part of it that way?

Anna Smith:

Ideally, yes. Yes, that is good patient and public involvement. So it can start right from coming up with the question through to designing the research, addressing the protocols, talking about the outcomes of the research. So yes, all the way through there are ways that people can be involved.

Megan Calvert-O’Hare:

Okay, great. Kirsten, as I mentioned in the introduction, your research question focuses on the grief that carers often experience whilst caring for someone with dementia. Could you tell us a bit more about your project and also how PPI helped inform and maybe even guide your research?

Kirsten Moore:

Yes. Hello. My study looks at the grief as you mentioned, that carers often experience before the death of a relative with dementia. And this is a really sensitive topic so it can be quite difficult to engage people and talk about this topic. So my study was actually based initially on sort of quite a history of doing research. And interviewing as participants rather than as PPI participants about their experiences caring for someone with dementia. And through that I sort of became aware of grief being an issue that wasn’t being addressed a lot in research. So this is what sort of initially sparked the idea. But coming early on before I sort of applied for my Alzheimer’s fellowship, I was able to contact the Alzheimer’s Network, research network, and organize a focus group so I could talk to a group of carers. And present my research idea and see is this something that resonates with you? Is this something that you feel is important and will have an important outcome for you?

Kirsten Moore:

So they were able to sort of really review and sort of give me some input. I think one of the things that came up that sort of I had to adjust a little bit in my study was the impact of social support. A lot of the research hadn’t shown really the social support was an important factor. But I sort of felt like it probably should be included, but the focus group I had sort of really confirmed that that really needed to be included. So, that was included. And then after successfully getting funding, I was able to start the project and I now got an Experts by Experience group that I meet with from time to time and we review the study how it’s going. One of the important things I think is actually sort of trialling the research protocol with some carers.

Kirsten Moore:

So some of the members of my Experts by Experience group who are currently caring for someone with dementia are actually sat down with me. And we went through it as if they were a participant so they could see, is this suitable? Is it ethical to do this interview? Am I covering topics that are just too sensitive or how can I make that sort of an acceptable process? So that was quite a good process in terms of how you word your participant information sheet and things like that to make sure it’s accessible to people. And also in terms of implementation and outcomes and how we can disseminate the findings. And how people might be able to access this better is also a key part of it I think.

Megan Calvert-O’Hare:

So that was after the research has finished in a way dissemination to other people who could benefit from the research. Is that what you mean?

Kirsten Moore:

Yeah. So as researchers we tend to have fairly academics sort of ways of disseminating our research through journal articles and conference proceedings. But we need to think about, and we do. We look at sort of how can we engage with charities, how can Alzheimer’ Society sort of implement this. I’m also working with Admiral nurses because they are a key part of this in terms of support for carers. Also other services, memory services, care homes. How can we get this information out there. And also family carers so they can give us advice on where they sort of seek and obtain information so that we can tailor that message to them. I think as researchers it’s also a responsibility that we do provide feedback back to our participants regardless as to whether they’re PPI members or participants. That’s something as all researchers we should be doing.

Megan Calvert-O’Hare:

Yeah. And for your fellowship that you got from the Alzheimer’s Society, was it actually a requirement that you sought PPI or did you do that to inform your own work? Or was it a requirement?

Kirsten Moore:

It’s not a requirement, but it very much is becoming, and it’s not just Alzheimer’s. I think all funding bodies now have it as an expectation that you will do this. So, and I guess that’s where sometimes some of the limitations of it can arise. Because if you’ve sort of been told that you have to do it, then can become tokenistic. So I think in terms of doing it before you submit your application, the Alzheimer’s approach is recommended and it’s good to do. It’s not a requirement, but I think it does. I think it certainly will make your application more likely to be acceptable. But also it’s quite a major commitment that the Alzheimer’s society has in terms of PPI group reviewing all of the grant applications. So you know that carers and people with dementia will be reviewing your grants. So you need to make sure that it does apply to them. So it’s integral to the whole process that there’s that engagement throughout.

Megan Calvert-O’Hare:

Yeah-

Anna Smith:

Certainly does come up in the review process. Absolutely. Every single grant application is reviewed by [inaudible 00:08:08] members. So it more and more, doesn’t it Jane? It comes up that if PPI isn’t there then that is a concern to the people whoever representing through the society. Yeah.

Megan Calvert-O’Hare:

Yeah. And Jane, you have worked as a volunteer. How have you found working with researchers in general?

Jane Ward:

Oh, it’s amazing. It’s such an incredible experience. Obviously you mentioned I was a carer. That’s how I got into the dementia field. And it’s such a difficult condition to deal with. You feel completely out of control, things happen and you just don’t know what’s going on. And one way of getting control back is to actually get involved in the research. So that you have your voice about what should be researched and the Alzheimer’s Society is great about that. So we actually do look at priorities quite often. And so it is what the people affected by dementia think should be looked at.

Jane Ward:

On an individual project, I was on part of the focus group with Kirsten a few years ago, so we actually were involved in her forming her research. I’m now working with her on the project and it’s just great because you know you can help out, you can give some ideas. We can really make sure that what’s being done is appropriate. Both in it’s what needs to be looked at, but also from the individual point of view of people who are maybe interviewed. That the language that’s used the way the interviews go are the best we can make them for those people that come along behind us experiencing the condition.

Jane Ward:

And so you feel like you’re putting something back. Most of us are doing on memory of our loved ones because we did feel so helpless when it was happening. But now we can do something that actually… We’re making a difference and hopefully one day we’ll stop this happening to people.

Megan Calvert-O’Hare:

Yeah. So it’s really, you found a massive benefit from being involved in the research, not just taking part in the research. But actually feeling like you were developing the research along with researchers.

Jane Ward:

Oh yeah.

Megan Calvert-O’Hare:

Yeah. And you felt the same reciprocal benefit to your research, Kirsten?

Kirsten Moore:

Yeah.

Megan Calvert-O’Hare:

Yeah. Good. It’s amazing. Did you and your mother take part in… Did you actually participate in research?

Jane Ward:

Not when mum was alive. I was a member of the research network and I was mentioning the reviews. So I did review and that was probably three or four years before we lost mum. And I wished I had. At the time it wasn’t a lot that I knew of that was going down in Hampshire and mum wasn’t very good. She never was very good at traveling. She didn’t like to go on holiday. So, going too far afield wasn’t great. We did go to I think one of the Alzheimer’s Society conferences and we went to one a conference up at Nottingham. Really so I could learn a bit more about how to look after her well. But we were engaged with Hampshire County Council on a few things where she was actually able to give her views about how older people like to live.

Jane Ward:

And she thoroughly enjoyed it. And the great thing for her was that she did feel so often that she was a little bit stupid. A bit of a waste of my time and other people’s time. And she just didn’t understand what was going on in her life occasionally. But when she could go to one of those meetings and people listened to her and she felt she was making a difference, because she’d always been someone that wrote to her MP. Prince Charles was one of our favourites about the environment. I’ve got quite a few letters from him. But she was actually still doing something. She was making a difference. And we come home from meeting and she’d say to me, “I’m not sure what that was all about, but did I do something useful?” And I could say yes. And it made me feel happy and that stayed with her. So it was that thing of actually still being worthwhile.

Megan Calvert-O’Hare:

I guess it comes back to the thing that we said at the beginning, and Anna you also reinforced, is that it’s not having stuff done to you. You are doing stuff yourself. You are in it.

Jane Ward:

Yeah. So many carers and people with dementia feel like they’re having everything done to them and for them. And I think none of us want that. I mean it’s generally for older people I think they don’t like. And I’m getting that we don’t like to the thought we’re going to be put on a shelf and everyone’s going to look after us. We’re still valuable. You look at Japan and they still have older people doing a lot of things themselves. And their experience is very well recognized. And someone with dementia, if they help through it can still actually give an awful lot back.

Jane Ward:

And I work with the likes of Wendy Mitchell and Keith Oliver who quite famous. I sat on a panel with Keith. Keith in fact he’s chaired meetings and I think he may well be chairing something we’re doing at Dementia Congress in a couple weeks. You know he’s still able to because of his background, but why wouldn’t he. And I think he’ll be at Oxford working with Anna at the same congress who is another of our champions and ambassadors. Not everyone can do it, but if they can, let’s make sure they do.

Jane Ward:

And the ones that maybe can’t stand up and talk in front of a crowded room, probably can still have a view about something that research is looking at. And let’s encourage them.

Megan Calvert-O’Hare:

Yeah, definitely. I come from a basic biology background. Perhaps you could expand a bit more on the value of PPI on biomedical research, anna?

Anna Smith:

Yeah, that’s a really good question. And that’s something that we really need to address when we’re looking at improving patient public involvement through our research. It’s tricky. There can be lab based researchers who just don’t see where that benefit is. But when you’re talking about dissemination and communication and especially in current times, how important it is that you’re able to communicate your research. Especially if you’re going to get more funding or [inaudible 00:14:40] down the line. Or you’re trying to translate your results, who best to help you put that into plain English than someone who has a vested interest in the research being successful.

Anna Smith:

Or at least having an outcome that’s worth talking about. I imagine you go home to your partner, they’re probably not that interested in talking the high science, you know what I mean? So you can be in a little echo chamber with your fellow researchers and you speak a certain kind of language and that’s fantastic. But there are other people who are so fascinated by what you’re doing and they can help you to then broadcast that to the wider community.

Anna Smith:

And yeah. So I think that’s a big function of patient public involvement in that setting, working alongside people who are affected to bring that into the language that everyone can understand. Also, Jane and I were having a chat beforehand and she came up with an example that I hadn’t even thought of. Do you want to sort of explain in a nutshell what we’re talking about.

Jane Ward:

Yeah.

Anna Smith:

How the experience of someone affected can have an impact on yeah.

Jane Ward:

It was one of the projects that was monitoring and one of my fellow monitors actually brought his wife who was living with dementia along to the monitoring. And we did have that discussion about whether she should, because she wasn’t a monitor, but I think we all felt straight away, “Yeah, why wouldn’t she come?” And we had the tour of the lab and she joined him with a meeting, and we were talking about some behaviours that were exhibited while she was visiting. And it actually helped the researcher to think about the similarities between her behaviour and actually what he was seeing in the most models. And it’s just quite interesting that actually we then had a discussion, so opened up something that he hadn’t really thought about.

Anna Smith:

Yeah, I think you can become a bit closed off in the lab. And you forget. Although obviously you know because you write it in so many grant applications and you tell people all around the world that you work with Alzheimer’s. You forget that it’s people that you should eventually be helping.

Jane Ward:

And when you’re actually meeting the people who are living with it and you get to know them as individuals, suddenly it becomes I’m sure so much more real. Because actually I’m doing this for that person.

Anna Smith:

Yeah.

Jane Ward:

And I’m doing it because I know these people and I understand these people. So…

Anna Smith:

Yeah.

Kirsten Moore:

I think there’s sort of very different types of research and it’s not just research and not research. There’s such different levels of engagement in terms of how research is undertaken. And I guess just doing something very biological with cells is very different to perhaps sort of more action research approaches where you’re engaging with the community. And you’re sort of working much more collaboratively.

Kirsten Moore:

And we have co-production and things now, which is a totally different philosophy. So I think it also depends what sort of discipline you’re coming at it from. In terms of how much is naturally sort of engagement and involvement of people in your research anyway. So I think that’s important that it’s not just black and white, that you either got PPI or not sort of thing. And I’m going to think also researchers may not have good experience, but there’s also lots of researchers who do have relatives with dementia and do have personal experience. So, there’s sort of these grey areas as well I guess that we need to sort of keep in mind.

Jane Ward:

Yeah, I think the other thing you’ve got to remember is every single person, and it’s always sad, who’s living with dementia is different.

Kirsten Moore:

Mm-hmm (affirmative).

Jane Ward:

Once you’ve met one person, you’ve met one person. So I myself through fellow monitors, learn so much more about the condition. Just because someone else will have some completely different experience than my experiences. And that I think, that’s always very valuable.

Kirsten Moore:

Some of the carers too.

Jane Ward:

Well yes, carers. We’re all different.

Anna Smith:

And researchers.

Kirsten Moore:

Yeah, yeah.

Megan Calvert-O’Hare:

So a more practical question, Anna. You’ve worked in the PPI field for over six years. How can a researcher find people affected by dementia to support or partner with on their research?

Anna Smith:

Well, as a representative of Alzheimer’s Society and a research engagement manager, I work with the research network. So they are 270 people all either affected personally by dementia or like Jane have cared for or are caring for people affected by. So to anyone listening who is interested in contacting us to develop their patient public involvement, find out how they can implement that. They can contact us at research network at alzheimers.org.uk. And I guess we could put that on your website?

Megan Calvert-O’Hare:

Yes. We’ll put the link at the bottom, yeah.

Anna Smith:

So fundamentally I would say come to us.

Megan Calvert-O’Hare:

How did you go about funding people for your PPI, Kirsten?

Kirsten Moore:

Yeah, that was pretty much it. There’s different charities and different bodies that have different groups because I’m also within Marie Curie Palliative Care Research Department. So we’re linked with Marie Curie who also has sort of expert voices. And so there are sort of various different groups where these groups are already set up. That are already accessing people that… But also sometimes it just comes out of research participants that sometimes you just meet someone who’s really engaged and wants to be really involved. And so you sort of have a bit of a spark there and sort of thing, “Well would you like to be involved in the next step or in another research study?” And that can evolve that way as well.

Megan Calvert-O’Hare:

Okay. So we opened up the discussion on Twitter and we got a few questions back to us. Anna Feltman asked, “Any advice on how to include people with cognitive and communication disorders who are frequently excluded from this type of activity?” Maybe Anna you could answer this.

Anna Smith:

So yes, this can be a challenge and I guess you can break it into two things. How to include people being, if you’re trying to find those people. Again coming through the research network but that is an area where improvement is having to be made. So we are working on our recruitment of volunteers to make sure that we’re developing roles for people who can have a voice. And like Jane said, yes we do have some amazing people who are living well with dementia and are able to contribute on that level. But we want people who are perhaps not as mobile or confident to be able to contribute as well. So we’re working on that. But in the meantime, yes we do have a number of the network who are personally affected.

Anna Smith:

The second part of that question is how to include them. You need to be thinking about the practicalities of that. So if you are wanting somebody to physically come in and meet with you, then you really need to be thinking about working that into your budget. So say somebody affected by dementia needs to get a train. And then needs to navigate their way to a university and then around that university, I would really recommend thinking about obviously covering travel costs. But arrange a taxi perhaps from the station to the university. Make sure there’s a really clear map that you send to them ahead of time.

Anna Smith:

Perhaps buddy them up with someone who can meet them at a key place to get them to and fro. Make sure you incorporate breaks into your time with them. Refreshments. Definitely make sure that whatever room you’re in, you’re not ages away from a toilet. Just thinking really not too hard. I mean it’s basic fundamental human way of looking at things. But working in those sorts of practicalities. Jane, can you think of some more?

Jane Ward:

One of the panels we do, we’ve got a couple of people living with dementia on the panel and yes they have. I have someone that meets them. We always try and get into the same room so it’s familiar. And they’re sometimes sent some of the materials early on so they can look at them. But big thing to remember is if you’re doing a presentation to make it fairly clear. Think about the presentation that is not think things aren’t too sort of chaotic on the screen.

Jane Ward:

Particularly handouts. A big one is we want to save paper, so we tend to do double-sided handouts, which is fine if it’s portrait, but if it’s landscape, I think we’ve all had a meeting where we sat and you’re flipping the landscape papers over trying to work out the top and the bottom. And for most of us that can be a bit annoying. If you live with the dementia that can, I’ve seen people actually just put the sheet down because they can’t work it out. So having it single sided so that it’s very clear how you navigate through the materials. And just thinking about materials in a very plain language, not too small, not too busy.

Jane Ward:

We have rules of conduct. Trying to think of that sounds-

Anna Smith:

Rules of engagement.

Jane Ward:

Rules of engagement. Something sounds less officious. But generally the rules are that if the person living with dementia starting to speak, we’re all usually pretty good at not talking over each other. But if you’ve got a really good idea, you might want to jump in quite quickly as one’s finished talking. If you’ve got someone living with dementia, just learning to be very sort of patient, very quiet and very still. Let them finish and then not jump straight in because they might not have finished. Might sound like it, but if they thought of something else. And being very aware of them. I know the particular group we’re thinking about, we’re very aware of our members who have dementia. So if we see them starting to sit forward with obviously something good to say then we will all quietened down.

Megan Calvert-O’Hare:

Yeah. So just like rules for [inaudible 00:00:24:34], do you talk to other carers about this sort of thing? Because like you said at the beginning, finding yourself suddenly being a carer of someone with dementia. You weren’t given a rule book, you felt isolated, you didn’t know what you were doing. But you now have this wealth of experience. Do you take it out and disseminate this to other carers? Because this sounds like valuable insight

Jane Ward:

In all the work I do, I tend to. And I am actually just currently back where I live. Looking at doing some work with carers about just the basics of how to kind of cope with being a carer. I think definitely for this innovations and adventure based in [inaudible 00:25:15], CIC. They do an awful lot of work and again we can make sure you’ve got their website. They host a couple of groups I know and they also host the deep groups, which is the Dementia Engagement Empowerment groups.

Jane Ward:

And I’ve used their rules of thumb and I’m in contact with them whenever we set any focus groups up. But I suppose a lot of it is just what you’d like to do for any of us.

Megan Calvert-O’Hare:

Yeah.

Jane Ward:

But I think in the questionnaire you mentioned about dementia, but it’s people who’ve got language difficulties. Hard of hearing maybe. I mean the other one I know with sort of public meetings, we were always aware of people that might not be able to read the materials we’re providing.

Megan Calvert-O’Hare:

Mm-hmm (affirmative).

Jane Ward:

So having other things potentially available if they need to.

Megan Calvert-O’Hare:

Mm-hmm (affirmative). Yeah. I guess it sort of comes back to what you said, just being human about it and humane and thinking about your audience in a compassionate way.

Anna Smith:

Sure, yeah. And I mean it is something that you may not immediately know. You may not have had contact with anyone affected by dementia before. I mean I’ve met researchers who have been working in the field for quite some time and that is a moving first meeting for them. So it’s lovely, but they may not have those practical skills or knowledge already there. So that’s why it is a nice idea to come through the research network so we can talk through that as well. And that’s part of making sure that your patient public involvement is as good as opposed to being tokenistic. Going that extra little step to make it valuable, not just for the people that you’re involving but for yourself as well.

Kirsten Moore:

I think there is sort of a limitation. I work in end of life care and dementia with I’m looking at people with advanced dementia and have very limited communication. They may not speak at all. And I think we all as a society have difficulty understanding what their needs are and how do we reach them? So engaging them in research is very difficult at sort of a lot of levels and trying to meet their needs. I think that’s an area where we’re really still struggling and grappling with I guess. But I think in terms of people at milder, earliest stages of dementia, we’ve certainly improved engagement and involvement in the research process.

Megan Calvert-O’Hare:

Moving on to Mariam Piano asks, “How do you balance the different things your volunteers with dementia could give input on? Against the time and cognitive burden of being involved in all these different aspects of the study?”

Kirsten Moore:

I’m thinking I’ll hand over to Jane, but I think that comes down to personal choice really.

Jane Ward:

Yeah. I think it’s flexibility. Understanding that people can give you a real benefit. But making sure that you… I mean, in dementia we’re always talking about person centered. Everything’s got to be person centred. It’s just bringing that into the research. So some people are built to give more. Other people won’t be able to give as much. And I think that’s a big thing that the network are always involved in is just giving that input about things where maybe just thinking a little bit longer about how you involve people. I can think of something, few years ago I was involved in a focus group. And we’re talking about a whole bank of scans and EEGs and MEGs and all of this sort of thing being done to people over a couple of days. And they’re asking about the best time for these things to be done and just how you’d set up the itinerary during the couple of days.

Jane Ward:

And I think we basically said you’ve got to look at who’s going to volunteer to do it. Because, if you’re having sticky things stuck to your scalp. Gentlemen who maybe is a little bit older and doesn’t have much hair, it’s not going to matter too much. If you’ve got a lady who’s got a particular hairstyle and very conscious of how she looks, that is going to matter. So employing a hairdresser to pop in and just sort her hair out. Or doing it at the end of the day so that she goes back to the hotel and has a chance to do it herself. It can make a big difference. And talking to the carer about that person’s daily routine so that you can work out how you maybe can balance their needs during that day.

Jane Ward:

The same way quite often we were talking about, you know with meetings what time of day would be better. So if you’re going to do a focus group, probably not too early because you’ve got to get there. Not too late because people get tired. But also think about the transport, how busy it’s going to be, how much traveling they’ve got to do. Do you have a break? Where do you have break? But talking to participants. Finding out what their needs are, and then you’re going to have a better chance of meeting what they need.

Megan Calvert-O’Hare:

Mm-hmm (affirmative).

Anna Smith:

Clear communication definitely.

Megan Calvert-O’Hare:

Yeah.

Anna Smith:

Outline exactly what it is that you’re expecting of them and let them make that choice as to whether they can do it or not. And on one day they might be able to, and another day they might not. It’s a variable condition. So there’s just having that flexibility. Yeah, that’s what I would recommend.

Jane Ward:

But older people can get very tired. I think the other big thing is, and from my experience and what I remember with mom, is the power of being involved and feeling you’re doing something. And you’re making a difference and that you’re actually still quite important to people. I can imagine, okay, you might be absolutely shattered at the end of the day, but you’ve probably got feeling of I’ve done something really good here.

Megan Calvert-O’Hare:

Yeah. So not to worry about the tiredness in a way. Because you can wrap yourself all up in worrying about people too much and then naturally you’re not even listening to them in the end. You’re saying it was too much for you. You know, don’t worry about it.

Jane Ward:

So thinking about the balance.

Megan Calvert-O’Hare:

Yeah.

Jane Ward:

So there’s the physical risk of if he gets on too tired. But think about the emotional risk.

Anna Smith:

If not listening-

Jane Ward:

If not listening to them. Not giving them that empowerment. And just the legacy for the families, knowing that their loved one’s done something so powerful is maybe mentioned somewhere.

Megan Calvert-O’Hare:

Yeah.

Jane Ward:

Wow.

Megan Calvert-O’Hare:

Oh, okay. And then finally Alex Griffith has asked an issue that they came across recently was what are the responsibilities of researchers, where there are concerns about the wellbeing of individuals after the project has ended. Kirsten?

Kirsten Moore:

Thank you. So I guess we’d approach it the similar way that we would approach sort of our responsibility to research participants. Being very clear up front about what the expectations are as we’ve been talking about in terms of making sure people are understanding what they’re getting involved in. What the responsibilities are, what they’ll be talking about, what they’re expected to do. So then there’s kind of an expectation as to how upsetting or how much, whether they can cope with that. That sort of involvement.

Kirsten Moore:

Also making sure it’s just a friendly environment and I think we’re setting up rules of engagement is a bit… Sounds a bit formal as it was there, but it is kind of about the behaviour we expect. Not just of the researchers to the PPI or the carers or the people with dementia that we’re dealing. But amongst each other that we’re all respectful and give each other time and as he said, sort of waiting for people. And just being respectful and having a friendly environment should mean that people come out of this unscathed.

Kirsten Moore:

But I guess so expectations and having that friendly environment. But just sort of if they do feel distressed, I think it’s better keeping mindful. I mean when I’ve done focus groups, we’ve usually had a separate room aside. And made sure we’ve got a separate person that say if someone does get particularly distressed during a focus group or a discussion or a meeting that we can take that person aside. And give them space and to have a coffee or someone can go and chat with them and we can sort of break it up. So that’s not if they’re in a big meeting or something that we can take them out of that setting. Or we just sort of highlight resources that they might want to go to afterwards if it’s sort of the study is finishing. And it’s more about connecting them to available sort of resources or bereavement support or information services or whatever. Whatever might be causing them distress that we can link them in to.

Megan Calvert-O’Hare:

Okay. Now that this sort of movement is from proving that PPI is valuable to improving the experience, to ensure that it’s valuable, not tokenistic. Do you have any final words on the next steps for Alzheimer’s Society?

Anna Smith:

Yeah. So I touched on it before that we’re really looking at the roles that we have available for our network members. And really trying to make sure that we’re as accessible as possible. So if someone’s wanting to work from home as a volunteer, that there are ways that they can get involved. So that’s one side of things. The other is really sharing the impact of patient public involvement that the Alzheimer’s Society pioneered back in 1999. It’s all the way through to today and the steps we’re making. So recently we co-edited the International Journal of Social Research and Practice. And there’ll be a link to that. It’s an open access on the website and that’s full of fantastic articles by researchers who have engaged in patient public involvement, their experience of that as well as volunteers. So-

Megan Calvert-O’Hare:

So, that’s both sides. The impact for both sides.

Anna Smith:

… Both sides, indeed. Yeah. And we published an impact report earlier this year as well, which we’re talking about it various international congresses and things. So yeah, it’s two sides. It’s improving. The opportunities that we’re making available for people who are getting involved in the network. We’re working with researchers to make sure that they’re doing the same and they’re not doing it just as a tick box, but as something that is really valuable to them and is going to improve their research. And we’re communicating about it as much as possible. So people who perhaps haven’t even thought about doing it yet can see the impact of that.

Megan Calvert-O’Hare:

Yeah. Wow, that’s amazing. I am, as I said earlier, I come from a basic biology background, so this has been really informative for me. So it’s now time to end today’s podcast. I’d like to thank Anna, Jane and Kirsten and you can visit our website to look at their profiles and also the links to the journal. And how you can find people to be involved in your research. And if you have anything you’d like to add on this topic, please post questions in our comments section and finally remember to subscribe to this podcast through SoundCloud and iTunes. Thank you.

Anna Smith:

Thanks.

Voice Over:

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