Podcast – Evaluation and Implementation of Tech & Trials

Voice Over:

Welcome to the NIHR Dementia Researcher podcast, brought to you by dementiaresearcher.nihr.ac.uk in association with Alzheimer’s Research UK and Alzheimer’s Society, supporting early career dementia researchers across the world.

Dr Anna Volkmer:

Welcome to the Dementia Researcher Podcast, bringing together early career researchers and leaders within the field to discuss their research, hot topics and to share career tips. I’m Dr. Anna Volkmer, I am a speech and language therapist and a senior NIHR research fellow at the University College London, and it is my pleasure to be here to host the last, sadly, in our three-part special podcast series, exploring tech and dementia research with PhD students from the Pan-European distinct group. Today we will once again be discussing our guest projects and also focusing on how we can evaluate and move on to implementing the outcomes of these studies in real world settings, a challenge I have some experience in myself.

So, let us meet our guests. Today, our guests join us all the way from The Netherlands and Germany. I am delighted to welcome David Neal, Beliz Budak and Simone Felding.

Beliz Budak:

Hi.

Dr Anna Volkmer:

Hello, everyone.

Dr David Neal:

Hi.

Simone Felding:

Hello.

Dr Anna Volkmer:

Now why don’t you all introduce yourselves properly. David, do you want to go first?

Dr David Neal:

Absolutely, thank you. My name is David Neal. I’m originally from the UK and now working at Amsterdam University Medical Center in The Netherlands where I’m doing my PhD research in the Department of Psychiatry. I studied behavioral neuroscience and then clinical medicine, and I worked in the NHS in the UK for three years as a doctor, including in old age psychiatry and in general old age medicine where I had a lot of experience clinically with people living with cognitive impairment and dementia. That certainly inspired me to go further with this research. Thank you very much for having me today.

Dr Anna Volkmer:

Thank you for being here. I’m fascinated to know, usually we speak to researchers in English in our shows and everybody, no matter where they’ve come from, ends up speaking English in these podcasts. But have you learnt Dutch?

Dr David Neal:

I have. Actually, since I moved to the Netherlands in 2019, have also become a joint Dutch citizen.

Dr Anna Volkmer:

Oh, brilliant.

Dr David Neal:

Yeah.

Dr Anna Volkmer:

Very impressive. Now Beliz, can I come to you next?

Beliz Budak:

Yes, thank you very much. My name is Beliz Budak and I’m originally from Turkey. I am now working in Germany and working as a researcher in the topic of implementation. Originally, I’m a psychologist, a fully licensed psychotherapist. But working with people with dementia, that was something that I’d never done before, and it was very interesting so I decided to give it a go and it has been three years and couldn’t have been better.

Dr Anna Volkmer:

Fantastic, very exciting. Simone, welcome to the show. I’m going to ask you to introduce yourself next.

Simone Felding:

Thank you so much, Anna. It’s lovely to be here. I am originally from Denmark. I come from Copenhagen, and I studied anthropology in Denmark. Then in 2019 I moved to Germany to start at the German Center for Neurodegenerative Diseases in [inaudible 00:03:59], together with Beliz. We both work there as PhDs. During my studies in Denmark, I specialized in the anthropology of health, and I did a semester of field work, which was focused on dementia in a nursing home for people with dementia. On my first day there I talked to the director of nursing, and she told me, “It’s your first day in this dementia world,” and she was like, “There are two kinds of people. People who hate it and they just want to get out of it. They find it very tough, and then people who love it. And if you love it, you’re going to do this for the rest of your life.” And I loved it and here I am still working with dementia and really excited about that and excited about getting to know so many people who are also excited about dementia.

Dr Anna Volkmer:

Absolutely. Wise words, wise words. We can continue our podcast in German because I’m bilingual, so I speak German, but maybe we won’t because I’m not sure our listeners would appreciate that necessarily.

Let’s come back to the topic at hand, clinical trials. Clinical trials share a common aim with tech and dementia trials and research. They play a key role in developing a critical evidence base in healthcare and medical research. The outcomes of trials help determine whether new support tools, treatments, or procedures provide the intended benefits for people. However, the outcome evaluation alone often can’t answer all those questions about why some interventions work or some don’t. It’s increasingly recognized that the context in which trials are carried out will affect and interact with the implementation of the intervention, resulting in a variation of outcomes. Of course, there are also interesting questions like how do participants perceive the intervention or are the possible benefits from the intervention worth the resources used in terms of time, money, and other inconveniences? All of those are important questions, particularly when it comes to tech research.

Beliz, can you tell us, what would you say are the key things to consider around implementation of a tech intervention?

Beliz Budak:

I think the important thing to consider just when you’re starting off is how suitable it is this intervention and this technology to the intended user and also their environment. There are a lot of things to consider when you’re considering an intervention, whether you’re evaluating or you’re starting, is that what’s your product intend to, and does it really fit to the intended user or the customer in that sense? And would it be suitable for their environment, such as their house or if they’re living in a nursing home or to their cultural background or their physical disabilities? All those things you have to consider having a successful implementation.

Dr Anna Volkmer:

That’s interesting, your use of the word customer. I wonder whether there’s also an interim person. There’s the end user, the person living with the disease, is there also the person delivering the intervention that we need to think about in terms of implementation? They’re not the customers though, are they?

Beliz Budak:

Well, yes and no. If you consider something, a new technology for a person with dementia to use at home, they are usually living with other people, whether it’s their husband or wife or the rest of their family. They are the people who are often designated as the person who would push the button or plug it in or log into the internet. All these things need to be considered, but it doesn’t mean necessarily that people who bring the intervention, people who develop or sell the information are the important people to consider.

Dr Anna Volkmer:

I hear you. Simone let’s move on to you. What approaches can we actually use to understand all this? To understand how people themselves perceive tech interventions in everyday use.

Simone Felding:

Well, me being a social anthropologist, it might not be surprising that the first thing that I find important is participant observation. I think it’s really important to go to the places where the technologies are supposed to work and become part of everyday life and really try to understand not only how people perceive the technology, to not only asking them, but also to try to understand how they can fit into everyday life. What are the everyday practices? Who are the people? What are the informal hierarchies? What are the challenges that might come when you introduce something new into care work?

I think care work is very complex and you do very many things all at once when you do care work. You have to think about so many different things. So, if you bring in a technology that’s really great at solving one problem that seems great on paper, but then in practice it might create five new problems because five other things happen at the same time. I think really going there, talking to people, and experiencing things yourself, I think that’s important because my experience is when I’m in the nursing homes that people are so positive. They really say, “This technology is great, it’s going to solve our problems.” Then when I go there and spend time with them, they often turn out not to use it or to find that it creates new problems.

Dr Anna Volkmer:

Yeah. That makes sense. Yeah, my experience, having worked for more than 20 years in healthcare across England and Australia, the issues aren’t much different in any of those countries either. They’re very similar. People are desperate for ideas, so anything sounds useful but actually when it comes down to it, it’s difficult to use things. Makes complete sense. Beliz, what are some of the challenges in implementation research would you say? Can you avoid the challenges? Probably not.

Beliz Budak:

Well, it depends on what you’re trying to aim. I could think of two things that are important. The first one is the terminology because when we all started in our PhDs and I’ve conducted a scoping review as with a lot of us, and then we understood that it is important to have the terminology in the first place. Because when you look at research, there are different terminologies for the same thing over and over and over again, so you get very confused. You can’t compare them together. That’s one of the hurdles to achieve some success in implementation research. It’s also about the frameworks. How do you measure the process? How do you measure your success? If I’m using this framework or no framework at all, how do I know that I succeeded or not? This is the issues that I think it needs to be addressed in implementation research because otherwise it’s difficult to compare the previous work to what you’re doing right now and what works and what doesn’t.

Dr Anna Volkmer:

It’s very interesting, that completely resonates. You need a framework which also takes account of things that are out of your control. One of the studies I did, we looked at implementation, but there was a political shift in funding of national health services over that period of time. So even though we were doing a comparison, it was really hard because the funding system, what was happening was so different. I mean, of course COVID is another good example. It makes it hard to make those comparisons, right?

Beliz Budak:

Yeah, exactly. I mean you can always find the different challenges in that area in the first place. We desperately need some ground rules in that sense, or at least a terminology to be able to move forward.

Dr Anna Volkmer:

Yeah, absolutely. I love a ground rule. Might be the German in me. Questions about context and implementation though can also be systematically investigated during an actual trial, can’t they? Don’t necessarily need to do it outside of a trial using something called process evaluation studies. David, I understand you are conducting a process evaluation study alongside a clinical trial, is that right?

Dr David Neal:

Yeah, that’s absolutely right.

Dr Anna Volkmer:

Can you talk us through how you might go about this kind of thing? How does one go about a process evaluation? Is it an ongoing thing throughout a trial or do you do it end or the middle? When and where does it happen?

Dr David Neal:

Sure, absolutely. Well, I’m sure there are lots of ways to approach process evaluation. For our study we’ve chosen to follow some guidance from the UK Medical Research Council which helps us too. Beliz was just talking about frameworks, this is a framework that we have chosen that seems to be well represented in the literature to help us structure our process evaluation. You mentioned when does it occur? It’s very much in parallel to the clinical trial, to the main effect study. That means that at the same time that we were planning and setting up the effect study, we were also planning and setting up the process evaluation. Now as we’re getting towards the end of our study and getting ready to report the results, we’ll be reporting those results at around the same time. That’s really important because the results of the process evaluation, that’s the whole point of doing it, will really help interpret the outcomes of the main effect study and the main effect study outcomes also somewhat inform the process evaluation.

For example, if we find an effect of the intervention, then the interpretation of the process evaluation is more in the light of, okay, so what were the most important components of the intervention or what were perhaps some of the cause or mechanisms involved? On the other hand, if we don’t find an effect of the intervention, the process evaluation can become a postmortem, if you like, for why do we think we maybe didn’t see any effect of this intervention? What were the barriers or perhaps the assumptions about causality that were just not being met as this intervention was implemented in this case.

It’s very much something that we are doing in parallel. I think it’s very important to follow a framework, as we’ve said already. The MRC framework, that Medical Research Council framework is a very good one, very clear process to follow. Then just in terms of methodology, our process evaluation is really rooted in qualitative research. It’s semi-structured interviews with participants in the study and with people involved in implementing the intervention. Looking at all stakeholders involved. We do also use some quantitative methodology to back that up. We’re evaluating a technology, so it’s very easy for us to collect data from the technology itself about, for example, how often has the app in our intervention been used? That all goes into supporting that process evaluation as well.

Dr Anna Volkmer:

That MRC paper, Medical Research Council paper 2021, I believe. Yep, that is permanently on my desktop. I know, exactly, that’s a good paper, really useful. You already mentioned that if an intervention evaluates badly or if the effectiveness study suggests it’s not effectiveness, that you can do a postmortem. But does that actually mean the study was a failure? Does the process evaluation allow you to I guess, look at adaptations and [inaudible 00:16:49].

Dr David Neal:

Absolutely, yeah. There’s a broad question about whether negative results in science failure are. Certainly, I’m very much of the school that says no, negative results are as important if not more important than positive results. So no, a failure on the main effect study is not a failure and the process evaluation does in theory allow for understanding, as we said, maybe why, or at least hypothesizing about why an intervention has not shown an effect. That obviously could be to do with some aspect of the intervention itself or the context in which it was employed or even the research method.

For example, perhaps you just didn’t have a large enough sample size to detect the effect sizes that the intervention’s having. In theory, it does allow you to adapt. Having said that, if you compare this method to innovation in industry, I think anyone coming from industry would look at the way that we do this and say, “But it took you three and a half years to get results out of this process evaluation before you could start tweaking your intervention.” In industry, you’d be trying to get that information within days, weeks, or months maybe. I think it does allow adaptation, but it takes a long time for us to do that process evaluation and then get to the results that we have to then feedback to whoever the owner or implementer is of the intervention to say, “Well this is how you could try doing [inaudible 00:18:27].”

Dr Anna Volkmer:

I think that was a bit of a loaded question I asked you actually, wasn’t it? As you know, I’m come from a behavioral intervention background as a speech and language therapist and speech and language therapy interventions don’t work well in randomized controlled trials. Well, you can do them, there’s very few, but often then the process evaluation tells you a lot more about how people are using something. Whether they like it, whether they value it than the statistical does this. Often speech therapy interventions are also now increasingly delivered by apps, but often it’s that process evaluation that tells us and gives us more insight as to whether it’s worthwhile pursuing. Yeah, it’s not necessarily so black and white as an effectiveness study would tell you, is it?

Dr David Neal:

Absolutely. No, it’s definitely, it paints a much richer picture and I’m definitely a fan of randomized controlled trials because they’re very powerful for telling you about causality when they do find effects. But I don’t think you can do those in isolation from process evaluations or a broader understanding of how the intervention’s working. Because on the one hand, the risk of not doing a randomized controlled trial, it’s that type one, type two error. Are we going to accidentally spend lots of money on the technology that doesn’t work at all. So RCTs help to maybe avoid that sometimes when we see results that are useful. And the process evaluation I think helps us to avoid throwing away things that are actually really valuable. But we just haven’t seen an effect on the RCT.

Dr Anna Volkmer:

And I guess the power of RCTs is important and RCT informs guide policy and guidance more than a lower rigor, well I shouldn’t use the word lower, but more than a study that’s not an RCT often. And then if it forms policy and guidance, you’re more likely to get commissioning. If you get more commissioning, you can deliver more of it often. It’s a bit of a cycle, isn’t it? But let’s go back to implementation.

So, you spent three years designing, development and testing a tech intervention, it evaluates well, and this intervention could help people. What next? So, I want us to have a bit of a chat about that. What next? How do you move on? Simone, do you want to start this?

Simone Felding:

Yeah, so in my study I actually haven’t been designing or implementing an intervention. So, what I was really interested in is what happens after implementation. And I know that there is no after implementation, implementation is an ongoing process according to implementation science. But in practice what happens very often is that the funds run out, the implementation process stops, and the technology is left in a nursing home. And coming from a Danish context where a lot of technologies are pushed into nursing homes, I was really interested in going to a place half a year after their implementation process stopped and then seeing, specifically looking at these pet robots that I’m studying, what happens next? So, I talk to the municipality, and they’ve told me we have made this whole implementation process, we’ve had trainings, we have had these different guidelines that are in the nursing homes. And then I never managed to find this in the nursing home.

I spent five months in the nursing home and at first, I couldn’t find the pet robots. I did find the pet robots, but I never found any of the implementation material. So, I think what I really think is important and when you do implementation is that the papers you have, the guidelines, the cue cards, what you develop, that it is together with the intervention. So, the pet robots, they always came in boxes. It’s a very practical example, but to really have that in the box, I think it’s important and to follow up, to not just have these short projects and then when you run out of funding, you choose to buy new technologies or start new projects.

And of course, that’s also a challenge with research. I’m doing a PhD, I’m funded for three years, maybe four, and then the project ends. So, I think there’s a really big challenge here that I think it’s important to me to get the knowledge that I find in my PhD to get that out. So, I try to do different outreach, I try to do it myself, but in some ways, because it comes after the PhD, it also becomes voluntary. And I think there’s a structural challenge in that, that it’s something you then have to do more or less in your free time or next to whatever you’re doing after your PhD.

Dr Anna Volkmer:

Yeah, that’s really interesting. Yeah, so what you’re saying is we need to write peer reviewed papers, we need to develop more accessible recommendations, but all of that needs to be inside the same vessel box. You actually need to do that at the same time as handing over the robot, the pet robot and then keep it going. There needs to be some maintenance.

Simone Felding:

Yeah, exactly. And I think one of the things that were very meaningful to me to do was that I did a workshop with another one of the distinct PhDs, Way Chico, and this was with care providers in the UK. So, you had a lot of nursing home staff that came to this workshop and then Way and I presented our research findings, and I used my field notes and the dilemmas I experienced as a dilemma game that they could then play and discuss. And this felt so nice to really know, okay, what I found now comes to the people who have to work with this tomorrow, and I would love to do more of this kind of work.

Dr Anna Volkmer:

Yeah, that makes complete sense. Yeah, and I guess as you finish that sentence, I hear the passion as well and you talking about your free time and volunteering. So maybe is there’s an unfathomable ingredient which is about passion, enthusiasm, and motivation. I can see David nodding. What do you think?

Dr David Neal:

Yeah, definitely. I think it’s also how grants are awarded and what the conditions of grant funding are and whether funders find it important to build time and resources into funding structures to allow for this implementation work. So, in my project, it is actually a fundamental aspect of my PhD trajectory. It’s required by the grant funding that we investigate a business case for the intervention that we’re evaluating. So, I’ve spent some time already this year costing the intervention, doing interviews with stakeholders including managers of nursing homes for example, to understand from their perspective what the benefits are and also trying to then put some numbers behind that and to explore the options also for commercialization. And I think sometimes that’s a bit of a dirty word in academic research, but as Simone pointed out a minute ago, implementation is an ongoing process and if it relies on grant funding that by definition at some point in time will end and you have to have some other way of keeping things going.

And I think certainly the stories that Simon told from Denmark resonate very much with me from the UK and also from the Netherlands. I’ve been doing these stakeholder interviews trying to establish how this technology is going to be implemented and what kind of benefits it’s like to provide long term. And I’m hearing from managers of nursing homes, “Oh well we already have cupboards full of robots, screens, tablets, all of the other things that we have piloted, and no one knows how to use them anymore”. Or “The batteries are dead, and no one knows how to replace them”. And all of those kinds of things that sound maybe a bit silly and certainly not the grand theoretical concepts of how these technologies should be benefiting people with dementia that we maybe are interested in the introductions and discussions of our research articles but are fundamental to whether this works on an ongoing basis.

And I think the successful examples of implementation that I’ve come across most recently are from commercial companies who are going into hospitals and nursing homes every four months, every three months on an ongoing basis to provide additional training, additional notes, additional feedback on how to get the most out of the intervention. And they can afford to do that because it’s paid for. It’s a commercial product, but that’s what it takes because people leave the organization, people get new jobs, people just forget, batteries run out. So going back every couple of months gives them the chance to-

Dr Anna Volkmer:

And when a battery runs out-

Dr David Neal:

Organization wide, keep it going.

Dr Anna Volkmer:

If you need to spend 20, 30 minutes working out how to replace a battery, but at the same time you need to get someone out of bed, feed them, do their capacity assessment, do all the things that are basically perhaps on more important, you’re not going to deprioritize trying to change a battery because we don’t have a screw screwdriver going to… Yeah, I hear you. And I can see that, in fact I do that. We have some tech, there’s communications ATech that moves very quickly, changes very quickly in speech therapy and I can’t keep up to date. And the only systems that I will really invest in are the ones where I don’t have to keep up to date, that I can go to the person who makes the product and say, “I’ve got this person, can you do that”? It’s tricky, isn’t it?

Dr David Neal:

Yeah, and that also raises another interesting point. I’ve spent a lot of time in having these conversations, also not talking to care stuff, but talking to the facilities managers and talking to the IT managers because those are the people that actually then, as you said, I often have responsibility then. And a lot of the time the attitude that I hear is kind of, I’m kind of sympathetic to it. Well, the care staff have thought of this great new technology intervention that we’re going to pilot, but we have no idea what they expect from us. We don’t know what maintenance it’s going to require and yet it’s going to all going to come on our plate. So I think it’s also important to, as early as possible, really broaden your outlook on who your stakeholders are with it, especially with technology and to include everybody in the design and implementation process, because I think engaging people earlier on leads to a bit less of that sort of resentment of, “Oh, I’m getting something else on my plate”.

Dr Anna Volkmer:

So now that this is a little bit tricky as we know that you won’t have experience about this. So, this is just a chat really. Did you want to add anything more? I guess it’s something to think about and a topic I have blogged about, but Beliz do you want to add anything more to that discussion?

Beliz Budak:

The experience that I’ve had from the interviews that I’ve done in the Netherlands; I’ve also done interviews with the care workers. And the most important or the most common things that they’ve said about implementation is that it depends on the care professionals as well. It’s their capacity of working with the technology or if they’re afraid of technology, especially the care workers who are a little bit older and they apparently don’t feel so confident about this new technology or how am I going to do it and what if I break it? So, they avoid using it. And also, as you said, there are priorities in the nursing home or at home as well. So, you need to put the person or the residents first and then everything else comes next. If you consider that also the care workers, the necessary number of the care workers are never or rarely maybe achieved in a typical nursing home.

So, they’re always busy, they don’t feel confident about it and often they have something, but it is collecting dust in the corner because of all the reasons that Simone and David also said. So, I think it needs to be also reminded of the people how it works. And one of the things that I’ve heard consistently from the care workers is that if they were able to just call the company and ask what’s wrong with it, and if they don’t have to update it themselves, then it’s fine, but otherwise it is a problem. And even though they paid a lot of money to it just collecting dust in the corner.

Dr Anna Volkmer:

And I think the first comment you made, which was about anxiety and emotional reaction, tech does generate anxiety and emotional reactions, doesn’t it? I was just thinking my last problem with tech in a clinical setting was I couldn’t find a plug to plug something in because every single plug in that clinical office I was in was used and I didn’t know what to do. And it was really stressful, and I thought, I can’t deal with this stress, I need to just get on with things. And it’s those really simple things, aren’t they? But anyway, Belize, I want to hear about your research. So, you are exploring implementation of AAL technology, addressing communication and its impact on the underlying link between tech and the psychosocial effect of dementia on communication. So, can you tell us about your work? Can you define this concept? What is AAL?

Beliz Budak:

So that was a lot of description about, this is something actually a little bit simpler. So AAL is as a thing called Active Assisted Living Technology. So, they stand for active assisted living, and we use it to define the type of technology that you would use to deal with the consequences of the symptoms of dementia and make the life of a person that is affected by dementia easier. And these types of technologies can be used to manage all kinds of different symptoms. And my research is mostly about loneliness and how loneliness impacts the life and the health of the person with dementia and how we can use the AAL technologies to help them have a better quality of life, better social health and et cetera. And my research is based on the AAL technology implementation. So how does the implementation work, what works and what doesn’t work and what can we do about it?

So, I’ve done a scoping review and I’ve conducted an online survey with the European Alzheimer Associations to understand what’s happening in their own regions, what kind of technologies are they using, are they familiar with it, is there a communication mishap? And also, how does the implementation work in their region? Is using, for example, Parow as mentioned before, the seal robot, is it working for everyone? Do they use it for certain type of people, or does it have anything to do with the money that they have or is it personal features? Is it about the infrastructure of the building? So, it is mainly about that. And I’ve also done a series of interviews in the Netherlands with the care workers about a specific type of technology, it’s called EXA gaming. So, it’s exercise and gaming at the same time with an exercise bike. And in front of you there’s a screen that is interactive when you’re cycling, it feels like you’re cycling in the street.

And they have images of the streets of a lot of places in the Netherlands and sometimes around the world. And this is something that I haven’t really analyzed yet, but I can give a couple of pointers that people really enjoy the fact that they are seeing this place that they’ve lived before. Sometimes they have the old features or old videos and pictures as well. So, they apparently very enjoy that familiarity and it really motivates them to exercise more because it’s very important for the health of the person who’s living in the nursing home. So yeah, this is basically what I’ve done so far and hopefully we’ll do more.

Dr Anna Volkmer:

That sounds very exciting. That sounds like the type of thing that I would enjoy, cycling along with the real-life video. Perfect. So, I’m going to ask you, David, now, can you tell us a bit more about your work? You’ve already started telling us about your work, about the business planning that you’re doing, but cost and effectiveness evaluation, that’s the focus of your work, isn’t it? With Find My Apps, is that right? A tool to find my apps?

Dr David Neal:

Yeah, absolutely. So yeah, I already touched on the fact that I’m doing a clinical trial and I’m doing a process evaluation alongside that. Also, a cost effectiveness evaluation, and finally some implementation work and business case development. So that all revolves around this intervention find my apps. And the goal of the intervention is to increase self-management capacity of people who live at home and have dementia or mild cognitive impairment. And also, to increase social participation. It’s about teaching people to learn to use an ordinary tablet computer. So, there are all kinds of devices, apps, and things that have been specially designed for older people, people with less experience of technology, people with dementia. But the thing that we are really interested in is can we make everyday technologies more cognitively accessible, so more accessible for people with cognitive impairment. And the way we do that, the intervention has a training component, part of which is for the person themselves about the technical aspects of how to use a tablet and part of which is really more focused on the skills that are necessary around that.

So, building up self-confidence, building up familiarity with the tablet, putting it into the context of someone’s everyday life, and also including the people around them. So, caregivers and helping caregivers understand how they can best support someone with dementia to learn to use a tablet. And the second part of that intervention is a tool to help people find apps which are in general user friendly for people with dementia. So, we have a database of something like 200, 250 apps, which have been tested and evaluated as being in general easy to use people with dementia. And also, then a tool, an app on the tablet that allows people to, on the basis of their personal needs and interest, then select apps which they are interested in and motivated to use. So that’s how the intervention works. And said a bit about how we’re evaluating it already.

So far, we are expecting to have results from the process evaluation published by the end of this year. So, I can’t say too much about it yet before the results are public, but it’s been a really interesting mixed method study with interviews with participants, analytics data from the app and how the app has been used and also self-report measures which are more quantitative. And next year, hopefully in the first half of next year, we should be able to publish the main effect results. So, we’ll be able to say whether find my apps, so this training package and this tool to help find apps, is more effective in improving self-management and social participation than a regular tablet with just general tips on how to use a tablet. So that’s the thing I think is important about the study is that it’s a control [inaudible 00:40:13]-

Dr Anna Volkmer:

Yeah. Is it better than a-

Dr David Neal:

Is it better than anything else?

Dr Anna Volkmer:

Yeah, I hear you. Yeah, I’m fascinated. I’m fascinated by which apps are in that commonly used apps list. You probably can’t tell us yet, but I’m hoping the photo apps up there somewhere. You can silently nod or shake your head. [inaudible 00:40:37]

Dr David Neal:

I’m happy to give some general pointers. A lot of the most well used apps in the database, so bear in mind, this is in the Netherlands, so it’s Dutch apps, all of the apps are Dutch language at the moment. We’re interested in translating it to English. So, any researchers out there that are interested in little plug, but the apps that are most commonly used are walking routes, nature related things, so looking up birds for example. People sit in their living room, and they look out of the window, and they get their tablet and they’re like, “Oh yeah, that’s that bird”. And various memory games and things like that, which I guess is logical that people enjoy using.

Dr Anna Volkmer:

Oh yeah, that’s interesting. I wouldn’t have put that up there. I was thinking more of those totally universal, just take a photo on your phone, that app. But that’s interesting. Very interesting. So, Simone, your project involves robots. Tell us more.

Simone Felding:

Yes, I mean I can start by saying that I have an app for birds, so I’m one of the people.

Dr Anna Volkmer:

You’re one of those.

Simone Felding:

It’s so exciting.

Dr Anna Volkmer:

It’s not that. I’m not sure I’m ever going to get that app, actually.

Simone Felding:

I have the books, but also the app for on the way to work I see a bird. But anyway, social robots are where I wanted to start. Well, I look at these pet robots, so they’re little cats and little dogs and it sounds very cool and advanced with robots, but to be honest, I’m not looking at the most advanced robots. So, there are these little, not very big cats and dogs that are furry but also a little bit stiff and they can meow, and the dog can bark and has something like a heartbeat. You can hear and feel and then they react when you touch them. They also react a little bit, not that much, to sound and to motion. So, these robots, they’re being used in Danish nursing homes. So, I went five months, I did an ethnographic field work in a nursing home for people with dementia in Denmark.

And I just was sometimes, we call it deep hanging out, so I hung out in the nursing home every day and talked to the people with dementia, the staff, and talk to the family members when they were there and tried to see how the robots were used. And as I already said, they were not really used. So, at some point after looking at them not being used for what I thought was a decent amount of time, I decided to start using them and start to see what happens. So, I got nicknames such as the cat lady or the woman with the dog because I was always walking around with these pet robots. And right now, I’m in the process of analyzing the data. So, it’s still preliminary findings, but I found two things that I think are important and that I would like to bring to you today.

And one of them is that the robots do not work on their own. I think the staff were quite disappointed about this. I think they had really hoped that the robots could work without help, but it was quite clear that when I wasn’t there, they weren’t used or sometimes staff started to use them after seeing me using them. But after I went on Christmas holidays, I had to find them again hidden in different places because they were making noises, people didn’t know how to turn them off and it was disturbing when they had to put people to bed. So, they were hidden where you couldn’t see or hear them.

And another one, which is a little weirder maybe, is that I found that being of the robot, that what the robots are is extremely fluid. So, it changes all the time. And they have an ambiguous being where they’re both sometimes real animals that have real animal needs, they need to drink and eat. And sometimes they are toys that are fun to play with. Sometimes they are toys that are silly or infantilizing and not for me, for residents. And sometimes they are these pet robots and of course they are also ambiguous to me. But when you then use them with people with dementia, this becomes even more difficult and hard to differentiate what they are. And you might ask yourself, why is this important? Maybe this is too philosophical or theoretical. But the thing is that when you facilitate the robots, it’s quite important to know what they are.

There’s a big risk that you kill the cat. If someone thinks it’s real and you take out the batteries, it can be a very shocking experience, or you can be infantilizing or in one. And I also know this from failing. So, one day I gave the robot to a woman that I knew quite well, and I came with it, and it was on my arm. And then I told her, this is a mechanical cat. I said, so it’s also the ethical question, how do you present it? But I decided to call it a mechanical cat. And I asked her if she wanted to sit with it for a while and she told me, “No thank you, I have a cat allergy”. And then I told her, because I do have a cat allergy myself. So, I told her I also have a cat allergy and it’s actually not a problem because it’s not a real cat, it’s a mechanical cat.

And she’s told me, “Oh, are you trying to fool me saying that it’s a real cat”? And I was like, “No, no, no, no, no”. So, I thought we were both clear, it wasn’t a real cat. And then I gave it to her after she said yes. And then she started screaming that it was itchy. So, it’s just an example of how you can really make mistakes because this is such an ambiguous thing, and you really have to be careful when you facilitate it. And I think that says something general about technologies that we think there are these clear things that are definite. And when they then come into practice, they actually become together with the people who are in the nursing home. And we really have to understand that. And what are the practical and ethical and social consequences when you put these things into the nursing home?

Dr Anna Volkmer:

This might be a silly question and maybe I’m bit biased because I work in a hospital at the moment, most of the time, although it applies to nursing homes. There is the outpatient [inaudible 00:47:44] setting I work on; they’ve got a mechanical cat on the shelf. You can see it on the shelf. And I’m very loath to touch it because I’m mindful of infection control. Does infection control come in? I’m like, “Oh, it might be a bit infection control”.

Simone Felding:

Yeah. Yeah, that’s a huge challenge. And with these robots, you cannot take off the fur and that’s a big problem because you have to clean them, you can’t wash them, you can spray them, but they don’t really get clean. They also, some of them look really dirty because people feed them, so they brown around the mouth from some kind of sauce. And yeah, that’s a big challenge. And I’ve done field work during Covid at a time where the numbers were not so high, but still I was really scared that I would kill someone. I mean it’s really the consequence that can happen if you just move it from person to person without thinking about it. So, I had to be extremely aware of where I used it with whom and having long enough breaks in between and washing hands. Yeah, so this is a very big challenge and I think it would really be nice if you could take off the fur and if you could wash it.

Dr Anna Volkmer:

Yeah, pop it in the washing machine or something. Absolutely. So, there we are, three more amazing projects that could all clearly make a really practical difference to people’s lives, especially if we could take off the fur of those robots. Thank you so much for sharing. Now there are 12 other projects just like these and you can find out more information on them at dementiadistinct.com.

Now I’m afraid that’s all we have time for today. This is the last of our special three-part series. However, if you just can’t get enough of this topic, visit the dementia research website where all this week they’ve published lots of blogs and articles exploring tech and dementia research. Now I’d like to thank our incredible guests, Simone Felding, David Neal and Beliz Budak. I’m Anna Volkmer and you have been listening to the Dementia Researcher Podcast. Bye everyone.

Beliz Budak:

Bye.

Simone Felding:

Bye.

Dr David Neal:

Bye.

Voice Over:

Brought to you by dementi.researcher.nihr.ac.uk in association with Alzheimer’s Research UK and Alzheimer’s Society, supporting early career dementia researchers across the world.

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