Podcast – DISTINCT & Tech Intervention Research

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’m a speech and language therapist and a senior NIHR research fellow at University College London. It’s my great pleasure to be here to host a special three-part podcast series exploring tech and dementia research. Today, I’m here with some PhD students from the Pan-European DISTINCT Group or to give its full name, The Dementia Intersectional Strategy for Training and Innovation Network for Current Technology, part of Interdem.

In this first show, we’re going to set the scene for the week and talk about our guests’ individual projects, the DISTINCT program as a whole and how technology research is helping in dementia. In the next episode will move the focus onto how to set up and deliver tech studies. Then, on Friday we’re going to explore evaluation and implementation. But throughout we will also learn about nine individual projects being delivered by our guests.

Speaking of guests, let’s move on to some introductions. I’m delighted to be joined by three fantastic PhD students. We have Pascale Heins from Maastricht University, Leslie Garcia from the University of Nottingham, and Mauricio Molinari Ulate from University of Salamanca.

Hello, everybody.

Mauricio Molinari Ulate:

Hello.

Lesley Garcia:

Hello.

Dr Anna Volkmer:

Brilliant. For older people, carers and people living with dementia, technological change can mean the difference between dependency and independency. Many of these come straight out of science fiction films actually like AI and 3D bio printing, they’re amazing. But for the minute, the people most benefiting from these advances are researchers, in actual fact. On the Dementia Researcher website this week, you’ll find blogs and articles about those. But in these podcasts and for the DISTINCT program, the focus is on readily available technologies that we can use right now to help people living with dementia, many of which, I have to confess clinically, we are trying to use as well.

Now Pascale, Leslie, and Mauricio, three people working in this field. In the first part of the show, we are going to learn about the DISTINCT program and why tech is important. Then in the second part of the program we will hear more about each of your research projects. I’m going to start with Pascal. Could you please introduce yourselves and give an overview of what DISTINCT is for us?

Pascale Heins:

Yes, sure. Thanks for having us. It’s great to be here. I’m from Belgium and I’m a PhD student at Maastricht University in Netherlands. I’m an occupational therapy by training. I worked with people with dementia, but I was always interested in doing research and how to improve the lives of older adults with dementia and their caregivers. Yeah. That’s exactly what this thing is about. You already told [inaudible 00:03:51] of 15 PhD students. We are called early-stage researchers. We are carrying out different projects across Europe and all these research projects focus on improving the lives of people with dementia and their carers, through technology. It’s also a training network, so it’s to develop a training network in Europe for us PhD students. We all get training together. Some people are more from the psychology side or even a techie.

Dr Anna Volkmer:

Fantastic. What I’m hearing is you’re a subgroup within the Interdem group who all have in common that your research is focused on technology development and use in dementia, and you have the common aim of supporting one another on these journeys. Is that fair? Is that a fair summary?

Pascale Heins:

Yeah. That’s a very good summary actually. We are also collaborating with each other. We are working in eight different European countries, but there are also other partners included in the project, like for example, also enterprises for technology in dementia care.

Dr Anna Volkmer:

Thank you. Coming to technology, I wonder, can you tell us why we should be looking at technology? Why should your whole group be looking at technology? Who would like to answer?

Pascale Heins:

I can go first. I think that technology has really the potential to connect people. I think we all saw this in the COVID period, especially in the beginning, where we actually all had to isolate from our social network. Technology had become huge in connecting people, via Zoom, chats or via WhatsApp or whatever. I think that’s also very true for people living with dementia.

Dr Anna Volkmer:

Really good point. Really interesting. Now, Leslie, if I could bring you into the conversation, perhaps you could introduce yourself and then perhaps follow up on telling us a little bit about how older people might struggle with technology. Because I hear that Pascale was saying we’ve all had to deal a bit more with technology in the pandemic, but clinically I found lots of my clients who are older, I think, many of them struggle but many of them manage quite well. What do you think, am I continuing a kind of myth? What’s your opinion?

Lesley Garcia:

Thank you, Anna. That’s a great question. Thank you for having us. My name is Lesley Garcia. I am also an ESR, early-stage researcher, based at the University of Nottingham. I’m originally from Trinidad and Tobago. I’m also an occupational therapist by training.

Your question about older adults struggling with technology being a myth or not. I think it’s an interesting question and especially the way it’s been phrased. It gives me an opportunity to dive a little bit deeper into the question itself. When we ask; do older people struggle with technology, I think we first have to ask which older people. Older people are not one big group, they’re not all the same. This is the first thing I think that is the myth that we have to address. To answer your question, I would say some older people struggle and some older people don’t struggle. Just as you said, it really depends on who they are, where they are and what interests they have and have had and of course what resources and infrastructures support their interest in using technology.

Assuming we mean over 65, by older adult, my response would be any person over 65 doesn’t have to struggle with technology, they just need the support to be able to use it in any form the way they want, which I think Pascale alluded to this. We’ve seen this happen during the COVID pandemic; people have adjusted.

Dr Anna Volkmer:

That’s very true. When you were talking about the framework, that framework is often the people around them, isn’t it? Lots of my clients, clinically, have maintained their connection with their loved ones, because their children, for example, taught them how to use Zoom. That’s allowed them to maintain their interaction with Zoom. Actually, many of my clients have had families move overseas. We live further apart now, don’t we? I can see that depending on what your situation is, depends on how you use and access technology, no matter how old you are. My children would say I’m ancient. It’s not one size fits all, is it.

Now, Mauricio, perhaps you could introduce yourself and share some of your thoughts on the latest advancements. Do you have any examples of where tech research has already made a difference?

Mauricio Molinari Ulate:

Yeah. Well, thanks, Anna. It’s a pleasure to be here with you and my colleagues, Pascale, and Lesley. Well, my name is Mauricio Molinari Ulate. I am from Costa Rica, so another country in the DISTINCT network. I’m doing my PhD at the University of Salamanca in Spain.

That’s a wonderful question. Well, I’m also a psychologist so you can see the overview of the whole DISTINCT ESRs. I think we are at this stage where we are collecting data to know if the technology that we use in our daily activities actually have an impact on people with dementia and their carers. I think there have been several studies that have proved that voice reminders, text messaging prompts, it actually works for different conditions, brain injury, for example. It also have worked for dementia. There are some studies about that.

Advancements in technology, it’s so complicated, because we are developing constantly technology and research, we will always be behind of that technology. Maybe we can say, “Well we just proved that text messaging is wonderful for prompting memory,” but it’s been I don’t know how many years until we had the data. Maybe I can talk about health management system that actually I know the NHS has fund this study. I think it’s called TIMH, T-I-M-H, or something like that. It’s very interesting, because what they do is let’s say building smart houses for the patients. It’s full of sensors. What I know now is that they have already created this algorithm that they can detect urinary infection, which is wonderful, because urinary infection is one of the main reasons why people get hospitalized again in dementia. That means it could prevent and reduce this hospitalization. Well, that’s done through body temperature sensors and maybe sensors of how many times the person goes to the bathroom.

This system, it just gets this huge amount of data, current data of the person, and it just go to this clinical team where they just will analyze the data together. Well, I think that’s a great example. Actually, it’s related to my project, which I will talk later, but that’s maybe the most advanced I can mention until today.

Dr Anna Volkmer:

How fascinating. I didn’t know about that project, but I can envisage how it could easily link in with care. Somebody was telling me yesterday about something I didn’t know about in the UK, which is a gold system where if you have a complex patient, which most of our dementia clients are, then GPs are meant to meet within their practice once a month to discuss their gold level patients. I can imagine that kind of data being something that they’d flag up in these gold meetings to make sure they kept on top of those clients. That’s a wonderful system. That’s really exciting.

I’m going to come back to DISTINCT now though, because you’ve all spoken about, we technology a little bit, but I wondered a little bit more about how you collaborate. You mentioned, Mauricio, you are in Spain, Lesley, you are in England, Pascale, you are in another country. How do you collaborate and what are the benefits of working within this group? Perhaps, we could come to Lesley. Lesley could tell us a little bit about how you collaborate as a group.

Lesley Garcia:

We collaborate in a variety of ways. Because we come from different disciplines with various different professional backgrounds and experiences, it’s nice to have the cross fertilization where we work with people from other disciplines, and we can share. Every six months we have an official week where we get together and it’s supported by Interdem, and we have master classes together. We actually share and update our progress, as researchers. We get to share our approaches that span the gamut, from conceptually developing projects all the way to implementation, so we can share our progress that way. In some instances, we share within disciplines. The occupational therapists have worked together on papers and projects where we’re really basing it on a foundation of occupational science and what we understand related to dementia.

Dr Anna Volkmer:

Great. How many occupational therapists, by background, are there in this network?

Lesley Garcia:

There’s four of us.

Dr Anna Volkmer:

Amazing. It’s an occupational therapy, psychology. Are there any other allied health or healthcare professions? That’s fascinating.

Mauricio Molinari Ulate:

Healthcare, yes, I think there’s a doctor and there’s an engineer. I think there’s someone that study economy if there’s an economist.

Lesley Garcia:

Yes. We have a health economist, an anthropologist and two public health people, people with a public health background.

Dr Anna Volkmer:

What a fantastic combination. I’m always very biased, because as a healthcare professional myself, I’m biased towards thinking about how research can really impact on people’s lives quickly. The fact that you’ve got such a multidisciplinary collaboration sounds like that means there’ll be all of those things considered both the rigor and the research and the finances, the economy kind of component and the impact and dissemination.

My big question is, because we are talking about tech, are you techy? Are you all embracing technology in your everyday lives? Are you big techy people? Pascale, are you a techy person?

Pascale Heins:

Well, wouldn’t call me a techie. Yeah. When something with technology has to be done at home or something, then it’s mostly I am in charge of it, not my boyfriend, but I wouldn’t call me a techie, in general. I was just always so interested in the intersection of technology and dementia, so how you could help people with dementia through technology. In my Masters, I actually did some programming as well, but really, really basic.

Dr Anna Volkmer:

I like this rating scale. Who is in charge of tech in your house, Mauricio?

Mauricio Molinari Ulate:

Well, I live alone, so it would be me. Me or my dog.

Dr Anna Volkmer:

Oh, you or your dog, Mauricio. Great. Lesley?

Lesley Garcia:

I would definitely say I’m not the techy person in my household, which I think is a good thing, because it puts me in a position as a researcher researching people with dementia and people who also may not have been exposed to technology, digital technology per se. I have insight into what that’s like, because I don’t consider myself a techie or an early adopter at all. If I’m going to use it has to sing to me, it has to be easy, it has to be fun and sexy and really work.

Dr Anna Volkmer:

It sounds like a really multi-disciplinary team full of, not only different kind of professional backgrounds, but also people who are more or less techy so you can have all the different types of insight. That sounds fantastic.

Mauricio Molinari Ulate:

Yeah. I want to add something about that collaboration of DISTINCT. It’s not only that we have different backgrounds, it’s that we also have different cultures. Actually, the other day I was just thinking about it. We are representing four continents. That’s pretty amazing. What this gives to the network, it’s vision of not only … Europe, but it has also developed countries in general. You can see dementia different from a developed country which is full of resources, but then for example Lesley and me that we come from Latin American, Caribbean side, it’s completely different. Or maybe our colleague, [inaudible 00:19:13], she comes from Singapore. Seeing dementia from different positions and different social cultural backgrounds. I think it gives a lot of power to the network, in terms of what can we do for people with dementia around their different conditions, not just in certain areas that have more or less health resources. I think that that’s the really powerful thing about the network.

Dr Anna Volkmer:

I’m sold. DISTINCT sounds fantastic. Clearly, technology has the potential to make a massive difference, not just in the future, but in what’s available right now. I’m going to move us on a bit and get some examples, because I want to talk about your projects as well.

Mauricio, I’m going to come straight back to you first. Your project is about psychosocial applications of technology for health and wellness coaching. Is that right?

Mauricio Molinari Ulate:

Yes. That’s right. It’s meant to be for people living with dementia and carers, so it’s both populations. Yeah. Well, my project, it aims to develop a platform to monitor success and offer psychosocial interventions. That’s why I said before that the example I gave it was a bit related to my project. The idea came due to a current demographic situation that is happening here in Spain, that it’s called [inaudible 00:20:49], which means that the people from rural areas are moving to cities and especially that population that is moving is young people. What it remains is people with risk of cognitive impairment or dementia. Also, the carers are people that are also in these ages probably. Health service delivery has been declining because there’s less people there, so why we should have a doctor there, for example. They have to travel a lot to get to this primary health center.

We are trying to build this platform to come to these areas, offering … For example, in this case what we are working on its [inaudible 00:21:41] which is a platform that was developed by WHO, by the World Health Organization, to offer psycho education and support training to caregivers. We are adapting that to Spain. We co-design a platform with people with dementia, people from rural areas to help these people from the rural areas to get some service. At the moment, it’s like this magic trick of the magician that cut the body in half, because we have the legs and we have the head, but there’s nothing in between. The core platform is not developed, but we are adapting and starting the feasibility and usability of the psychosocial intervention, that right now is this [inaudible 00:22:31]. We already know which kind of assessment we want to include in the platform to monitor and assess the patients, that it’s a comprehensive geriatric assessment. Yeah. That’s basically my project about and the stage we are now.

Dr Anna Volkmer:

Exciting. I mean presumably you are focusing more broadly on dementia because I was … I have a colleague, Aida Suárez González, who you may know. Well, she’s from Spain, I know you’re not from Spain, but she is from Spain and does her research across the UK and here. She’s done something overlapping, but different but for rare dementias. I think hers has focused less on the kind of psychosocial and more on social interactional and support, I guess, and therapy. In terms of interventions, what kind of psychosocial interventions are you looking at?

Mauricio Molinari Ulate:

Yeah. As I said at the moment, we are working with this [inaudible 00:23:44] but we visualize is to have a kind of group in these rural areas, but that they do not need the health professional to be there. Through any kind of technology that we can offer the same intervention, that we are doing, for example, in the city with a similar group, that we can offer that to them as well. It can be just with a volunteer from the community. It doesn’t have to be with a health professional there, just someone that can organize it. That’s the plan. That’s very futuristic right now.

Dr Anna Volkmer:

No, I think it’s very exciting and valuable, because that will be very transferable, in so far as I think that phenomenon is happening across many countries, isn’t it? Where the young people are moving to the urban areas. It’s really valuable work. Thank you so much for sharing that. I’m going to come to Lesley next. Your project is about adapting recovery-orientated approaches and technology to dementia. Can you tell us a bit about that?

Lesley Garcia:

Yes. My PhD project is focusing on co-developing a digital, online intervention for people with mild dementia, to start, to help them plan with their main primary care partner how to remain engaged in their chosen meaningful activities. The conceptual foundation is based on the recovery approach, which is an existing, well-known model that’s been used in mental health practice for many years, decades. It leverages basic human needs. The research has found that there are five main subjective feelings that humans need in order to be resilient and have satisfying lives. Those things are a sense of connectedness, a sense of hope and optimism, a feeling of maintaining one’s identity, a feeling of having meaning in life, and finally a sense of empowerment. Together, these things spell out CHIME, which has been a simple acronym that I find very helpful. It’s basically what makes you chime in your life. What are the things that you wake up in the morning motivated to do? It’s a very holistic approach to the problem of quality of life in dementia.

It’s sort of going from the very high-level human approach to how to help people with dementia and their carers, as a dyad, create a lifestyle and structure their time in ways that will help them remain connected, hopeful, optimistic, feeling that they have an identity and meaning, despite the progression of dementia. I’m developing an app and a psychoeducational program that will help the dyad, the person with dementia and their carer, just become aware of these five important concepts and teach them how they connect to their daily lives. That’s the psychoeducational part.

The tech part is we will have them actually track, on a device, how their subjective feelings relate to the things that they’ve done on a daily basis. That way they can, one, see the connection and also possibly predict what they need to give themselves, almost like a daily diet of activities that provide hope and optimism and a sense of connectedness. The other interesting piece is we hope that the person will be able to know what they should really try to do on a daily basis. When they become unable to really verbalize or decide what they should be doing, their caregivers will already have a record of what is important to this person. If they change their environment, if they move from home to a nursing home or a care home, the new caregivers will also have a record of what makes Bob chime and what makes Georgina really light up in her life. What should we make sure to keep in her daily activities, or in her weekly activities, so that she has meaning in her life?

Dr Anna Volkmer:

I was going to make a really bad joke and so that really chimes with me. I’ve done it now. It sounds like really fantastic app with lots of … I think our theme outside of the technology today might be transferability because actually I can see the transferability of this app to populations outside of dementia. How have you developed this app specifically for, or to meet the needs, of people with dementia?

Lesley Garcia:

It’s wonderful that you say that, because it really is based on the concept that all people need to have CHIME in their lives, with or without illness or disease. But particularly with illness or trauma, it’s important to get back to the things that count, that are really the makers of personal health. People may want to get out of bed and stand up, but for what? What do they want to do? Do they want to cook? Do they want to dress? It’s very personal, but at the same time, it’s universal. It’s a tricky way to approach this research question. How do we develop an app that encompasses a very human, basic, profound need but can be personalized to each individual and how are the outcomes going to be measured in our very biomedical world?

I’m happy to use a concept of patient reported outcome measures. The patient themselves, and I mean patient but what I mean is the user. The user decides what’s important to them and how important each goal is. They determine their own scaling of meeting the goals or what are the thresholds that should become alerts for attention. For example, if someone says, “Well, it’s really important to me to be able to see my grandchildren or my children,” then they may say, “Well, I want to do that twice a week. Three times a week would be great. If it doesn’t happen over two weeks, then I’m probably going to feel disconnected.” If that can be tracked, then it helps the person with dementia and the families know we really need to organize a gathering, make sure granddad gets to see the grandkids and the cousins. I don’t know if that answers your question.

Dr Anna Volkmer:

Yeah. No, it sounds very familiar, almost like a modified version of goal attainment scaling, which is …

Lesley Garcia:

It is exactly goal attainment scaling.

Dr Anna Volkmer:

Which is really relevant to my research. We use that approach a lot. Clinically, I think goal attainment scaling has lots of value for people with dementia. It’s not necessarily been used much in the research field. I think we could use it a lot more effectively to show what you are describing, Lesley. I think that’s great. I’m really pleased to hear that.

Lesley Garcia:

I’m so excited that you say that, because it’s true, it hasn’t been used and it needs to be taken advantage of because really, it’s the user that really says, “Is this good enough for me,” or is it working? Goal attainment scaling is one of the theoretical approaches that I’m using in the research.

Dr Anna Volkmer:

Given we are working with people with progressive diseases, measuring outcomes is so challenging. Goal attainment is really person-centered and looks at individualistic perspective. I’m a big fan. I’m going to make sure that we talk to Pascale now, because Pascale’s been having a couple of techy issues, but actually your work’s the techiest from what it sounds like. I think your projects about improving social participation in dementia, with the geographic information system-based intervention called … Is it Vi Amigo? That sounds very techy.

Pascale Heins:

It sounds very techy. That’s true. Yeah. Vi Amigo, it’s actually mobile application. It sounds really techy in the title, but it’s an actually mobile application that has been developed by a university in Belgium, the [inaudible 00:33:47] university. They originally developed it for people with intellectual disabilities so that they can go somewhere independently while, for example, a family caregiver can monitor the route and see, okay, the person gets there safely. The Vi Amigo sees the location of the user and also sends notifications to the caregiver, for example. Okay. This is maybe a tricky zone, he has to get on the bus, does he get on the right bus or not?

Now, we want to see if that could also be something for people with dementia, in a very early stage, so people with dementia are living at home. What I often see is that traveling underestimates what a person with dementia can actually do independently. One thing is going outside, going somewhere, meeting someone alone, finding the way. With this application, maybe it could help to improve, on the one hand, the social participation of the person with dementia so that the person gets more in contact with others outside of their home, but also on the other hand that the family caregiver is less worried about the person, can see, okay, the person gets safe there.

Dr Anna Volkmer:

Fascinating.

Pascale Heins:

Yeah. That’s what my project is about.

Dr Anna Volkmer:

I think you are right. I think all of us here, we have experience of working with people with dementia. You hear families saying things underestimating their relative’s skills all the time, don’t we? That’s quite an exciting initiative. I think this idea of getting lost is huge. It’s one of the biggest fears, isn’t it? Is that fair?

Pascale Heins:

Yeah. Well, I think that orientation is something, in the early phase, which could become a problem for someone living with dementia to see where am I? How do I find my way back home? But actually, with some small cues, maybe you can help with that and facilitate that. Yeah. That’s why I want to try out, could this app be something for people living with dementia? What do they think of it? Do they think it’s useful? Is it easy to use? Yeah. That’s what it’s all about.

Dr Anna Volkmer:

Well, thank you so much, Pascale. This is so brilliant. Three amazing projects that could all clearly have a really practical difference in people’s lives. There’s so much transferability. I think that’s my second theme for the session. Thank you for sharing.

There are 12 other projects just like these. You can find out more information at dementiaDISTINCT.com.

Now, I’m afraid that’s all we have time for today. But before we go, I’ve got one last question for you all, just a quick titbit. What advice would you all have for anyone coming into this field of research? Let’s go with Pascale first. One piece of advice.

Pascale Heins:

I think the biggest advice that I have, maybe also coming from my occupational therapy perspective, focus on the individual. That’s so hard in research, because we really want to generalize findings through a big population, but every person with dementia is so different. How they experience, what they experience, how they manage their daily lives. Yeah. Also use research methods, maybe not only on the quantitative side, but also really look into their individual experiences.

Dr Anna Volkmer:

Thank you, Pascale. Mauricio?

Mauricio Molinari Ulate:

Well, I think my advice is that you have to know what are the needs and be familiar with this kind of people and their families, of course, because, well, at least I always have thought that we focus a lot on the person that is living with dementia, but there’s a whole bunch of people around that they also need some support. I will say that if you want to get into research in dementia, just go maybe volunteer or have some work with these people and with their families and just feel it. Just see what they need. I think that’s something that I have had the opportunity to work with these people and see what they need. Then you think about a lot of ideas that it might help. Yeah. That will be my advice for today.

Dr Anna Volkmer:

Lastly, Lesley, top tip.

Lesley Garcia:

Top tips for anyone wanting to do research in dementia. I agree with both of my colleagues, Pascale, and Mauricio, that the person is central in the research. We need fresh ideas. Dementia is a social problem. We need people who really can come at the research from a social science perspective, because we already have a lot of people doing great things, working on drugs and at the cellular level. That’s been the focus primarily up till now. But we need really a look at fresh social systems to take care of the increasingly growing older population, particularly with dementia, in ways that convey dignity and compassion. That spans research that’s in the social sciences, policies, implementation across the field. I would welcome the multidisciplinary approach.

Dr Anna Volkmer:

Well, I’m just going to do a bit of a recap. I think today’s podcast has really emphasized that technology research in dementia can break down boundaries. It can increase access for people who don’t have access to psychosocial interventions, to people living their everyday lives who need access to day-to-day support, to improve their wellbeing and actually support their carers to improve their wellbeing. Equally, support carers and family members to maintain the independence of the people with dementia. To do this, we need a multidisciplinary team in the broadest sense, not just kind of skill based, but also culturally. We need to talk to people living with dementia and talk to them individually, get to know these people.

I’d like to thank our incredible guests; Pascale Heins, Lesley Garcia, Mauricio Ulate. I hope I’ve said your names correctly. We’ll be back on Wednesday with three more guests from the DISTINCT program discussing their research and things to think about when setting up your own tech research studies. Now, I’m Anna Volkmer. You have been listening to the Dementia Researcher Podcast. Thanks, everyone. Goodbye.

Mauricio Molinari Ulate:

Thank you. Bye bye.

Lesley Garcia:

Bye bye. Thank you so much.

Pascale Heins:

Thank you. Bye.

Voice Over:

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