Podcast – Echos around the home – helping people with PCA

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:

Hello, my name is Megan O’Hare, and welcome to our podcast recording for the NIHR Dementia Researcher website. This week I’m joined by Emma and Nicholas from University College London. This week’s podcast title is Echoes Around the Home, and that is not a reference to living in a cave. People with dementia face many challenges to their independence as their condition progresses, often increasingly relying on their caregivers for tasks which have previously been simpler, such as managing appointments and shopping lists. Many studies are looking at how technology can help this. Emma and Nicholas are at the cutting edge of this latest work. Emma Harding is a research assistant and PhD student at UCL, working in the area of social science and psychology. Hello.

Emma Harding:

Hi.

Megan Calvert-O’Hare:

What year PhD student are you?

Emma Harding:

Final year, if all goes well.

Megan Calvert-O’Hare:

Okay, good. And Nick Firth is a research associate, also at UCL, with a background in computational chemistry.

Nicholas C. Firth:

Yes. I made a big career change and came into dementia research instead.

Megan Calvert-O’Hare:

Okay, we might discuss that later. Echoes around the home. Can the Amazon Echo be used in the home to help those living with dementia? Six people with posterior cortical atrophy, a rare form of dementia which predominantly affects visual functions, and their family carers were given Amazon Echoes to use at home for 10 weeks. Interviews were carried out before and after having the Echoes to capture the person with dementia and their caregivers’ experience of using the devices. As well as the qualitative data collected from interviews, the Amazon Echo also collects transcribed audio recordings, which I have just learned. It gives an average of 3,000 recordings per household. So maybe we can start with, Emma, you telling us a little bit about yourself, your PhD topic, and your funding.

Emma Harding:

Yeah. So, I am a PhD student at the Dementia Research Centre at UCL, and I am working on a project called Seeing What They See, which is funded by the ESRC and NIHR. And we’re looking at the experience of people who have a rare kind of dementia called posterior cortical atrophy, which mainly affects their visual perception and visual spatial processing. And I am involved on the qualitative arm of this project. So have been doing mainly interviews with couples living with this diagnosis at home, and also have been doing all-day observations in the home. So spending the day with people and seeing how their daily lives are impacted, basically.

Megan Calvert-O’Hare:

Okay. You said it’s Seeing What They See?

Emma Harding:

Yeah.

Megan Calvert-O’Hare:

So not limiting yourself to memory loss with that?

Emma Harding:

No, exactly. So actually, the memory function is relatively well preserved in the early stages of PCA, which is really unusual. So it’s also generally early onset. So it really doesn’t look like what we think of when we think about dementia. When people first start having symptoms, they have trouble maybe driving, staying on the right side of the road, getting lost on the page when they’re reading. So yeah, it definitely doesn’t look like typical dementia.

Megan Calvert-O’Hare:

So how come it is classed as a dementia?

Emma Harding:

Because it’s neurodegenerative. So it is caused by disease processes in the brain, and it does get worse over time. And eventually other functions like memory and language will be impaired as well.

Megan Calvert-O’Hare:

Okay. So when people present with PCA?

Emma Harding:

Yeah.

Megan Calvert-O’Hare:

Posterior cortical atrophy, is that normally further along the pathogenesis of the disease? So they would tend to present with memory loss by that point? Or are they captured earlier?

Emma Harding:

So they will get memory loss later on. But a major problem for them is getting an accurate diagnosis, because the first symptoms tend to be visual, and they tend to be in their mid-50s or early 60s. So they spend a lot of time in an ophthalmology route and without any memory problems. So it sometimes takes a long time for them to get to neurology and into memory services.

Megan Calvert-O’Hare:

So how did you recruit people to your study?

Emma Harding:

So, at the Dementia Research Centre we’re affiliated with the Specialist Cognitive Disorders Clinic at the National Hospital, and we also run support groups in conjunction with the National Brain Appeal called Rare Dementia Support. So we’re really privileged to have great access to people who have these rarer conditions.

Megan Calvert-O’Hare:

And of the people that were part of your study, were most of them early on in the disease?

Emma Harding:

Relatively, yeah. So everyone we’ve seen has been still living at home. So mild to moderate stages. Because yeah, we’re interested in how people are coping in the home environment, and that’s where a lot of care happens and that’s where most people would like to stay for as long as they can. So that’s where both of our waves of data collection have been focused.

Megan Calvert-O’Hare:

And so they at this point don’t have memory loss, or have mild memory loss?

Emma Harding:

Yeah, exactly. So there are some memory features, but they’re not the leading symptoms. So yeah, most people we would see would have some memory problems, but these are secondary to the visual spatial and perceptual problems they’re having.

Megan Calvert-O’Hare:

Okay, great. Nick, can you tell us a bit about yourself and your research?

Nicholas C. Firth:

I can. So I’ve been at UCL for just over two years now, and I was employed as a postdoc to work on a project called See Placid, which was to do with making the most out of cognitive data and using technology to measure cognition in novel ways. So, my background has been modelling, and I came in essentially to do a modelling project. So I was making use of huge amounts of cognitive test data, so pen and paper stuff, where people have sat down for like three hours and done neuro-psychological batteries, and trying to understand that better so we can predict prognosis and diagnosis a lot easier. And I got working on that, but then I got quite interested in the technology side of that project that I was on as well, and ended up working on eye tracking for diagnosis and prognosis, and also been involved in virtual reality environments for people that have got social disorders that are caused by dementia as well.

Megan Calvert-O’Hare:

So your eye tracking stuff, does that link with the visual disturbances seen in PCA, or is that totally different?

Nicholas C. Firth:

It does a bit, but we were really trying to see what we could measure. So we did, actually, we had a residency in the science museum in London where we got about 700 people through, and we were looking at lots of different tests and eye tracking. So for instance, memory tests, we were showing people pairs of pictures, and in the start of the eye tracking experiment, there’d be two pictures, and then at the end there’d be another two pictures. But one of them they would have seen before. And we were trying to see whether people spent more time focusing on the image they hadn’t seen. So it was almost like a memory test to see if they could remember that they’d seen it.

Nicholas C. Firth:

There were other things to do with reading, to see whether or not people had language deficits. So we put some nonsense words in the middle of sentences and looked at how … I realize I’m wagging my finger here. That’s completely useless for a podcast. But to see whether people read in a linear fashion or whether they had to skip back when they saw the nonsense word. But basically we threw everything we could out, because we had this sort of amazing opportunity to work in a science museum.

Megan Calvert-O’Hare:

And was that with the ultimate aim to use it as a prognostic tool?

Nicholas C. Firth:

Yeah, because, in particular in the late stages of dementia, we find that a lot of people will have issues with communication and even understanding the tests. So, this type of eye tracking paradigm could be instruction less. So we could sit someone down and say, “Just look at the screen,” which is a fairly simple command, and we could hopefully get some idea of disease severity from that.

Megan Calvert-O’Hare:

Okay. But that’s later on in the disease?

Nicholas C. Firth:

That was the idea, yeah, to see whether … But we have to start off in controls first and then mild stage, and then eventually we’d move on to that.

Megan Calvert-O’Hare:

Okay. And how are you funded?

Nicholas C. Firth:

How am I funded? Currently I’m on an EPSRC grant. However, that’s running out soon. And I’m moving on to another ESRC grant, which is the Simic Platform grant, which is an internal UCL fellowship.

Megan Calvert-O’Hare:

Oh, okay. Nice. Our listeners are very interested in how people are funded.

Nicholas C. Firth:

Rightfully so.

Megan Calvert-O’Hare:

Yeah, money, money. Right, let’s go straight into maybe talking a bit more about Amazon Echo and what you have found from this study. Emma?

Emma Harding:

So we decided to try the Amazon Echo with people living with PCA because they have a lot of difficulty interacting with technology. So navigating a screen or using menus like a dropdown menu would be really tricky. Or in putting numbers into a keypad, things like this, they have a lot of trouble with technology. So we were really hopeful that voice activation would bypass some of those difficulties. And a lot of people we speak to in support groups and in the first waves of the study I was involved in, people talk about audio books and general reliance on things like Siri. So that’s why we decided to try it. And we had different … We were interested in different things, I guess, and had our different approaches. So from my point of view, I was really interested to know how up for trying it people would be, and what they were excited about, what they hoped to get out of it and really how it would fit into their daily lives, how much they would want to use it, how they would navigate it with family members, and how motivated they would be. And then obviously how it went at the end.

Megan Calvert-O’Hare:

And were you more interested in the technology side? You seem to have fit into some kind of gender stereotype here.

Nicholas C. Firth:

Oh no, not gender stereotype, it’s very much the research subspecialty stereotype.

Megan Calvert-O’Hare:

Okay.

Nicholas C. Firth:

So I’m a computer scientist and Emma’s a social scientist, so we came at it from different angles. I was interested not necessarily in the technology but more on the disease progression modelling. So to see if we could actually track where people were in their diagnosis based on how they were using the devices and what their voice sounded like when they were using it, to see if we can pick up any patterns that could be used for either … The end game would be an early diagnosis tool, but that’s many, many miles away. But something that could maybe tell people where they are in relation to their disease.

Megan Calvert-O’Hare:

Did you find anything that surprised you?

Emma Harding:

I think we found something that surprised Nick. Can I say that?

Nicholas C. Firth:

Yeah.

Emma Harding:

Can I take the words out of your mouth?

Nicholas C. Firth:

Yeah.

Emma Harding:

Yeah, again, because we come from such different backgrounds, well, I think we had a number of questions when we went into the project, and aims. And we wanted to see if it would help with things like remembering appointments or maybe reducing caregiver burden in being asked some of the same sorts of questions repeatedly, which some of our support group members do mention to us. But I suppose I was more interested in how people would use it for enjoyment or hobbies or pursuing their interests and those sorts of things. And I think that was one of our strongest findings, was that most people it to listen to music and not some of the practical features that you might think typically a person with dementia might want to make the most of, like reminders or those sorts of things. So I might-

Megan Calvert-O’Hare:

Have you found in the general population, though, people that you know who have an Amazon Echo use it for anything but listening to music?

Nicholas C. Firth:

So yeah, we saw actually both in people with dementia and people without, so we used the spouse or the family caregiver as a control group, that they were using it for lots of things. Oven times is a big one. So people were saying, “Set the oven timer for 15 minutes.” Shopping lists were used a little bit. The smart home integration, so turning on smart lights, were used a little bit as well, both by, I use that myself as well, but also people with dementia. But the overwhelming number of things that people use it for was listen to Radio Two, or listen to this from Spotify. Because we gave people a Spotify account as well. So I think that really made a big difference. They really wanted to use it to listen to music, whereas before they had to navigate a CD case or something like that, would have been quite difficult.

Megan Calvert-O’Hare:

Oh. So it was a useful support tool, could you say that?

Emma Harding:

Yeah, my overall impression is that it was really useful for people. But I guess we also had a self-selecting sample, in that people who were interested in it and thought that it would be useful for them volunteered to take part in the study. So they were all quite optimistic about it. Apart from one thing that did surprise me, is that we had one couple who took part and he had no interest at all and was quite averse to technology.

Megan Calvert-O’Hare:

Did he have dementia, or was it his spouse who had dementia?

Emma Harding:

Yeah, he had PCA, and they lived with their grandchildren and their daughter as well. And he was mainly interested to see how it fitted in in the household. So he had a lot to say about how his grandchildren used it and his wife, but he maintained that he’d rather continue just asking people for help rather than this strange speaker.

Megan Calvert-O’Hare:

Okay. So he said he asks his wife for help. I guess getting back to a little bit what you said before about relieving carer burden, obviously that didn’t work out necessarily for him and his wife. Did you notice anything like that? Did the carers come back and say that this shopping list has actually helped?

Emma Harding:

I think it did help, but in a way people were much more on a team about it, kind of, than that, I would say. So even if a carer would say, “Oh, my partner’s had to ask me much less for help with such and such,” it wasn’t so much that it reduced their burden. It was more that they were both pleased that the person with dementia had been able to maintain their independence a bit more.

Megan Calvert-O’Hare:

Okay. So that’s a massive positive.

Emma Harding:

Yeah, Which was really, yeah, that was super nice to see. Yeah.

Nicholas C. Firth:

I think we also saw that people were using it together sometimes as well, where they’d be, in particular, playing little games on it and things like that, where they’d be taking turns to do things, which is quite nice. It’s almost like a little something that, if you’ve got that sort of visual interface problem, there’s very limited games, I guess, that you can play. So it was quite cool.

Megan Calvert-O’Hare:

Yeah, that’s true.

Emma Harding:

One thing that I would say is that, in terms of setting it up, often the person with dementia was super motivated to use it because they had a background in tech or they just were really interested in technology. But it would fall more to the caregiver to do the initial setting up of the accounts and getting the whole system up and running. And people did say that once it was up and running that that was great a lot of the time. But there were a few people who found that initial setup, I think, a little bit tricky. And Nick was on standby for emergency help with that.

Megan Calvert-O’Hare:

And I guess it also does rely on having a support network around. I don’t know whether it could ever replace that. Do you think that that would, is that one of the ultimate aims, that you could use technology in a way to … If someone lived by themselves, could they use it instead of having a carer come in a few days a week?

Emma Harding:

I think that is a really important consideration in terms of the timing at which people get it. And people mentioned this a lot, actually. They said they think it’s critical, there’s a really good window when it can be most helpful. And basically, the earlier the better. So yeah, I would see no reason why someone in the mild stages living alone couldn’t make great use of it. But we did see, the further into the disease or the particular profile of difficulties that people were having, they would often need some caregiver input at some point. Yeah.

Megan Calvert-O’Hare:

Yeah. And we touched on this actually before the recording, but obviously memory is affected in some of these people. And remembering the name of Amazon Echo, did that prove a problem?

Nicholas C. Firth:

We had a couple who had to change the name from … So the wake word, which is Alexa in most cases, they had to change to “computer,” because the person with dementia found it a little bit easier to remember, whereas Alexa was a little bit more challenging. But then conversely, we also had a person without dementia that often called it Alexia rather than Alexa, because I think it’s more of a natural name and we hear it more frequently. But yeah, I think even myself, I get confused actually because I’ve got multiple devices. I’ve got Google Home and an Alexa, and I often find myself shouting at them in different things and getting very confused myself.

Nicholas C. Firth:

But we found in general that the device is built as understanding the way that humans speak. But it doesn’t really, what happens is that humans learn to speak the type of language that it likes. And that is a learning curve for everyone, myself included, and I love technology. So I think it was really just trying to reassure everyone in the study that, “You’re not stupid, the device is stupid, and you should always remember that when you’re using it.” So when it says, “I’m sorry, I don’t understand what you’re trying to say,” you just persevere and eventually you’ll get there.

Megan Calvert-O’Hare:

I just take that so personally. So I guess you’ve used Amazon Echo because it is a commercially available tool. If you were ever going to approach Amazon and say, “Here are some things that maybe would help people with dementia,” there’s some tools or things that people came to you and said, “It would be useful if we had this or that,” did you get any feedback from them about what other technologies could be helpful?

Emma Harding:

I think at the time we did the study, there were a few things that people wanted it to be able to do that now it can do. Like I think the calling feature wasn’t available at the time that we did the study. And a few people said that the diary integration could be smoother, or I think it didn’t integrate with all types of online diaries at that point. Yeah.

Nicholas C. Firth:

But there were no specific, like, “We want this app developed” type information coming back. But it was something that we did try and talk to people about, but they just didn’t seem that interested in it. I think the device itself, it’s quite general. And I think it’s more, rather than being assistive technology, it’s more technology that is quite accessible for everyone. And I think that was part of the appeal, is rather than it being a lot of assistive tech, it’s like, “We’re going to put this watch on you and then we’ll be able to tell where you’re walking at all times so you don’t wander away,” this is something that these people were talking to their friends about, like, “We’ve got this cool new device, you should try it yourself.” And they were quite proud to have something like that. And it seemed like, when you get a new iPhone and you show all your mates.

Megan Calvert-O’Hare:

Yeah, socially acceptable technology.

Nicholas C. Firth:

Yeah, exactly. Yeah, it was quite nice. I think actually putting all of those things there for them is, aside from the reason why they liked it, I think if you start making it very dementia specific, then perhaps it wouldn’t be.

Megan Calvert-O’Hare:

Yeah, it is a bit of a turn-off. Yeah.

Emma Harding:

One thing I think generally that maybe people would have appreciated is if the window of time you get to get your phrasing right could be extended. I know we spoke about people forgetting the activation word, but another problem that people with PCA and other types of rarer dementias have are problems with language. So often people would, they’d remember it, but it would come out slightly wrong and they’d want to try again. Or they’d ask for things like a piece of music, and some of the words would be in the wrong order. And I think they often are quite anxious about that anyway. So this time pressure to get that right exacerbated that a bit for some people, I think.

Megan Calvert-O’Hare:

Yeah. From your point of view, Nick, you were saying you were hoping that maybe you could use what you found from it as a prognostic tool? How did that go?

Nicholas C. Firth:

Yeah, well, we’ve got quite limited numbers, which is the issue. Because although we’ve got a huge amount of recordings, only got really six individuals with dementia. And trying to understand the differences between these people was quite difficult. In particular we had an issue because we only had one female in the study with dementia. So trying to predict who had dementia based on their voice was very much a case of learning who was a man.

Megan Calvert-O’Hare:

Right.

Nicholas C. Firth:

And this is a problem that’s seen across a lot of studies, that men are more likely to be enrolled than women and women are more likely to be proactive caregivers. But at the same time, women are still more likely to get the diseases, which is pretty … But yeah, so the initial results …

Megan Calvert-O’Hare:

Do you think that that was because it was technology, whether that was more attractive …

Nicholas C. Firth:

No, I think in general we see, in the rare dementia support group and in particular the ones I’ve been to, we see more men with dementia being supported by female caregivers, or family members taking them along to these meetings and doing these things proactively. And I think that’s, so that’s where we recruited from, because we went to the meetings and started talking to people when they came and consented. But I think in terms of the prognostic tool, there’s definitely something there. There is some signal, but trying to get it out is proving to be a challenge at the moment.

Megan Calvert-O’Hare:

Okay. Yeah. N equals six, small.

Nicholas C. Firth:

Yeah, it’s a little bit small when you’re talking about voice data, which is this really big, confusing thing.

Megan Calvert-O’Hare:

Yeah. That’s interesting you said about that maybe men get recruited to studies more. We had a podcast another time, they talked about, they found it the other way. They found women were more likely to be recruited. So they were trying to do, how can we encourage men to? And they were talking about sports. So I don’t know, you said that they had more men at this group that you went to, which is interesting. Okay. So you’re both from quite different disciplines and backgrounds. Can you say anything about the benefits and challenges of working together?

Emma Harding:

No.

Megan Calvert-O’Hare:

We were looking at each other stumped there. Obviously we’re not working together very well at that moment in time.

Emma Harding:

We hadn’t decided who goes first. I will then. Yeah, so really different backgrounds and I think the benefit is that it’s … So a lot of my way of working is very manual. I do mainly qualitative analysis, so I work very rarely even with numbers. So working with Nick has given me a whole different type of data to work with. And obviously that can answer all different sorts of questions, things like the prognostic value, and just different ways of processing data that can save a lot of time and resources. But I think the benefit of doing that together is that we can … So for example, Nick would be able to figure out very quickly in an automated way what the men, which voices are male and which voices are female. But then you still need to kind of dig into that and get to, what are the differences in the content of what people are saying? So for me it’s been great that we’re working on this together.

Megan Calvert-O’Hare:

In my notes here it says, working with people from other disciplines is a great and challenging way to do research. Do either of you have any comments on that?

Nicholas C. Firth:

I guess I could, before Emma starts slating me, I guess I’ll comment on the benefit quickly. So as mentioned, I’m a computer scientist, and before that I was in a chemistry lab. So actually, I’ve never done anything with people before. I’ve never met a person with dementia until we started this study. And spending all day at rare dementia support groups with people that are sort of 55 years old that have got these dementias is quite mentally challenging. Because you feel a little bit drained. It’s quite sad at times when people are talking about what’s going on with them. And I just wasn’t used to that, and I found it really sometimes just a little upsetting. And actually, talking to Emma about it at the end of the day after listening to all these people, was really helpful. Because Emma’s got much more experience with it, a lot more bouncy, and was seeing the other side of it and talking about what’s going on with her research. And it was really great. I think otherwise I would have really struggled at the end of a long day with that.

Nicholas C. Firth:

In terms of challenges, I think the main one is keeping up with Emma’s need for highlighters and pens and notebooks and things like that, which is a …

Megan Calvert-O’Hare:

Daunting.

Nicholas C. Firth:

Yeah, and trying to get her to do some writing as well for me.

Emma Harding:

I have a challenge.

Megan Calvert-O’Hare:

Yes, this isn’t actually therapy, so …

Emma Harding:

I think one of the … Maybe this explains the lack of writing to date, the fact that we have such different types of data. I think finding a way to bring them together and knowing where to put that, and where that will fit, and the audience for that, will be quite a challenge. Our funding actually for the Echoes project was the Collaborative Social Science Domain.

Nicholas C. Firth:

Yes.

Emma Harding:

So that was perfect because we ticked those boxes, but it is, I think, another part of the process to figure out what we now do with those findings, and how we put them into one coherent story, and where that needs to go.

Nicholas C. Firth:

I think that’s the challenge with most multidisciplinary research, though. You find that you don’t quite fit one journal, you don’t quite fit another journal. It really can be hard to try and merge it into something that’s useful for people, but at the same time you are doing quite cool research.

Megan Calvert-O’Hare:

Yeah. This also seems to be the way a lot of it’s going, because it’s very interesting, and also you can’t stay in your little niche world. You would never have left the lab if it wasn’t for this.

Nicholas C. Firth:

No. Especially with technology research, where often it’s done by large companies as an afterthought, thinking, “Oh, this thing that we’ve developed, people with dementia could use it.” And it’s not done this way, where you really need to sit down with someone who has a great experience and understanding of how to get, from people with dementia, how to get what they want and really understand the way that they work in couples, like Emma does on a day to day basis. Whereas a tech company just wouldn’t do that. So yeah.

Megan Calvert-O’Hare:

Yeah. Okay. Do you have any advice or tips to PhD students who are planning on working with technology?

Nicholas C. Firth:

I think in general, advice to PhD students is just try and make friends and meet people from either outside your field or slightly outside your very specialist area as soon as humanly possible. Because it’s incredibly hard to get through a PhD without a strong network, both of friends and also with collaborators. Because in particular with technology, you can get so embedded into something so minor. Like for instance, I spent like a week trying to work out how to de-noise audio files from this project, literally moving silence. And you just get so into it. You need to speak to someone who sees the bigger picture or sees a different picture to you, and that gets you out and makes you think about different parts of it. Because I think it is so long and it is a challenging process. So that would be my advice.

Megan Calvert-O’Hare:

Okay, well, good luck, Emma, with writing your thesis.

Emma Harding:

Thank you.

Megan Calvert-O’Hare:

And thank you, everyone, for listening. We hope you enjoyed this podcast. Please remember to subscribe through SoundCloud and iTunes and share on social media with the hashtag #ECRDementia. Thank you.

Voice Over:

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