Podcast – Alzheimer’s Society Conference 2019 – Day One

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. Today I’m posting this special podcast recording for day one of the Alzheimer’s Society Conference in London at the Care Oval. So listen out for distant shouts of Howzat.

Megan Calvert-O’Hare:

This podcast is also very exciting and special for us as we’re approaching our 10,000th play. So to celebrate this milestone, we’re giving away a pair of high-end Sony headphones. To be in with the chance of winning, all you have to do is register on our website, subscribe to our podcast on iTunes, Spotify, or SoundCloud and complete a short survey. For details on the survey, visit our website DementiaResearcher.nihr.ac.uk, or check out our Twitter feed on @dem_researcher.

Megan Calvert-O’Hare:

We are recording our podcast on both days of the conference, for a two part special. Part two will focus on biomedical research and today’s podcast will focus on care and what we have seen and heard today. So, I’d like to welcome our three panellists, all of whom have been in attendance today.

Megan Calvert-O’Hare:

Gillian Harrison is an Alzheimer’s Society Research Network volunteer and a former carer for her mother. Claudia Cooper, professor of psychiatry of older age-based abuse here at Alzheimer’s Society Centre for Excellence and the lead researcher on the NIDUS study, which we’ll talk a bit more about later. And, David Sharpe, NIHR research professor at Imperial College London, and honorary consultant neurologist. In December 2018, he was announced as the new UK, DRI Associate Director for Care and Technology. Hello everyone.

Gillian Harrison:

Hi.

Professor Claudia Cooper:

Hi.

Professor David Sharpe:

Hi.

Megan Calvert-O’Hare:

Should we start with a quick round table on which sessions and speakers you’ve heard today that have particularly interested you? Gillian, would you like to start?

Gillian Harrison:

The one that opened, a general panel discussion was particularly interesting, because they were highlighting the importance of joined-up care, with CARE and NHS provision. I mean, we keep hearing this, but nothing too much has happened yet. So that was important for me. At least it’s being talked about. Maybe the more we talk about it, the better it’ll get. And in fact, we had the Minister of Health and Social Services just at the last session, we had just come up, and she was talking about the importance of having a credible statuity going forward on these lines, because it’s been part of the 2020 objective. I hope she means that.

Megan Calvert-O’Hare:

Did she mention the next five years?

Gillian Harrison:

Well I think within that she also highlighted another session which I found particularly interesting, on the role of the new Dementia Research Institute on the care side of that, not the biomedical, and the importance of technology is going to play, and the amazing things that you can possibly do with the technology moving forward. And she was saying the same. She thought there was a great move forward now. Technology can support people in their own homes, and carers. But I do think she did say, “Well we wouldn’t want to replace people carers,” and I do think that’s really important that can get very lost when you’re talking about technology. Is it just to save money, or is it really to improve care? Which does mean people to a large extent, I think.

Megan Calvert-O’Hare:

Yep. Claudia?

Professor Claudia Cooper:

Well, I was late because, I’m delighted to say that the Minister, Caroline Dinenage, started her day by visiting us at the ECL, Alzheimer’s Society Centre of Excellence, to hear about our work on the NIDUS program. But I got here in time to hear a very interesting session on some of the more biological research, which I don’t do, but a bit like the technology research, it’s useful to hear the cutting edge on that, so that you can see how what you’re doing fits in. And there was a really interesting presentation by Jemma Roberts from Newcastle actually, in which she showed videos of a man receiving a brain scan, and then receiving the… Did you see that one? Receiving a cardiac scan, which they’re suggesting would be cheaper and simpler. And as somebody, as a doctor working in a memory service that sends people off for tests, I think it’s really useful to see what a difference it makes having a less intrusive test at a difficult time.

Gillian Harrison:

It came out well, didn’t it?

Professor Claudia Cooper:

It really did, yes.

Gillian Harrison:

The heart one, it didn’t make must difference in the actual results, did it? It was quite, they were similar, and it’s cheaper and easier.

Professor Claudia Cooper:

And there wasn’t… I mean with the brain one, having this magnet whizzing around your head, I don’t think any of us would-

Gillian Harrison:

I wouldn’t like that.

Professor Claudia Cooper:

-take much after that. And there was also a talk in the same session by Harriet Demnitz-King about the world of biomarkers, and I think that’s again something we are going to be incorporating into care, no doubt, because those people want good care but they also want accurate information about prognosis and the best available treatments.

Gillian Harrison:

Yes, I think a thing like this, you get so many aspects of dementia and on that, the biomarkers, they’ve been trying to find these over years. And there was a really interesting one, I thought, Exeter University’s looking into the role of EEGs, and repurposing an EEG and using it in a different way for, as a biomarker does, as a diagnostic tool, which you don’t usually think of, and that’s being done with an Italian researcher in San Marino. So it’s great that there’s a lot of cross-fertilization of ideas and of research.

Professor Claudia Cooper:

Absolutely, absolutely. And then in the afternoon I spoke to session on co-production where a few of us described our experiences of working with PPI on research programs, and it’s really interesting to share ideas about how to do it really, and what works well.

Megan Calvert-O’Hare:

David, I think, just to quickly interject, but a lot of things that you’ve talked about have just been brought up here. Biomarkers to be, we’ll talk about that later, and co-productions. So there’s lots of things going on, and I know you work at the DRI so you’re bringing these things maybe under your umbrella, of care and technology?

Professor David Sharpe:

Yeah, hopefully. I mean, so it’s a very exciting time right at the moment. It’s brilliant to be able to come here and share some of the plans. So, the new centre is just about started now. I don’t think we’ve actually officially started but we’ve got six years of funding, so we’ve got some big plans over the next few years, really focusing on the development of new technology, bringing different strands of technology into the care space, and then evaluating them in a robust, scientific way so we can work out what the best tools to use are.

Professor David Sharpe:

And I agree, I think lots of those strands have come up for you today. It’s been an interesting experience. I was just saying before that one of the interesting things is there’s a new app for Alexa called My Carer, which is being funded by the Alzheimer’s Society, and I’d not seen it before but it was being presented in the session here, and that seemed to be a really interesting practical direction, because it was essentially a way to use the Alexa system to prompt, say medication use or eating, everyday activities in the home. But it was making use of some actually very innovative new technology, but in quite a practical way.

Professor David Sharpe:

And I suppose that illustrates some of the things that we’re planning to do and are doing at the moment, is repurposing some of the technology with the big technology have companies that bring tremendous resources into developing these new ways of doing things. And I think if we’re clever we can make relatively rapid progress by working out how we use those best in the care environment.

Megan Calvert-O’Hare:

I guess there’s two parts to using technology, isn’t there? There’s data gathering so you can understand the disease better, and then the practical side of it, so the DRI is also, are you doing data collection in a way?

Professor David Sharpe:

Yeah, so I suppose our job in the Care Research and Technology Centre is largely focused on the development of the technology and the evaluation of the technology. So we’re not funded actually to develop really big cohorts of people who were going to collect data from thousands of people, because they already exist actually. There are quite a lot of cohorts, a lot of money put into that.

Professor David Sharpe:

What we would like to do is add value to that work by providing tools that people could use, and a platform that we could use to integrate that information. But certainly the, part of the effect of what we’ll do is support people to live for as long as possible in their own home. Another bit of it is to work out the best tools to track how people are progressing. Whether we can get sensitive biomarkers of how are things changing, because I think actually what comes out of the way that you use your phone, or the way that you are operating in the kitchen, if we can measure that accurately then that will give us information about how things are progressing that’s much more precise than doing a MMSE once every six months or something.

Gillian Harrison:

Well what do you mean, if someone’s moving about in the kitchen, what does that show?

Professor David Sharpe:

Well actually-

Gillian Harrison:

What else could you-

Professor David Sharpe:

That’s not even the simplest measures that are informative. So if you simply measure how fast you walk, say you had sensors in your home that measures how fast you walk down the hallway, and you did that every day for four years, I mean it’s been shown that actually those very simple measures of speeds are very informative, and they are largely much better predictors of what’s going to happen over time than doing a paper and pencil test of cognition every six months, for example.

Professor Claudia Cooper:

They build on when people say, “Oh, I noticed my mother was doing this.” It’s in a way a digital reader of that.

Professor David Sharpe:

Exactly.

Professor Claudia Cooper:

You’ve noticed that she didn’t remember to do this, or she did start to walk slower, you will have a digital reader of that.

Professor David Sharpe:

Exactly. I mean, the traditional approach to doing this is essentially we’re looking at things that are abstractions of what we’re actually interested in. So you might do, I don’t know, a test of your working memory or something, that gives you some information about what people’s cognitive function is. What you’re really interested in is what’s happening in their lives, in their homes. How fast they can do things.

Gillian Harrison:

And how they’re coping with that.

Professor David Sharpe:

Are they coping. What we’re proposing using technology for is to get into that environment to give us those measures, which is what we really care about, I think in the end. We might work out which of the other measures relate to that best, but actually if we can just get directly at behaviour, I think it’ll be in the end much more useful in various ways.

Gillian Harrison:

Yes, because it came up. I think you mentioned the fact, for instance it’s very important to catch if people are keeping on getting infections, like urinary tract infections, and you might be able to pick up, they’re going to the toilet more, and therefore they’ve got an infection, or you can prove that they’ve got an infection, therefore the GP could deal with it more quickly.

Professor David Sharpe:

Yeah, exactly. So if you think about what brings people into hospital, it’s quite often the development of untreated urinary tract infections, which is quite, I mean it’s very common. It’s quite surprising in some ways. We have treatments, we just don’t use them quickly enough. The question is, why don’t we? I think when people are developing dementia, the ways we assess whether there is an infection there don’t really work so well, so we end up delaying that treatment for much too long.

Professor David Sharpe:

So, we think we can use the technology to one, pick up the changes in behaviour, if you’re drinking a lot or drinking enough, or going to the toilet too much, these sort of things. When you’re getting a temperature. So simple things that are not rocket science, but that also point to care diagnostics of the actual microbiology. So if you have a bug in your urine, that changes the likelihood that you’ll get an infection. If we have that information and we can test it in the home, then in the end we’ll have a much more accurate system, and then we can flag up that there is an infection and the GP is to post some antibiotics or something.

Gillian Harrison:

Because actually, there’s also been quite a lot of emphasis on, there was a session I didn’t understand all of it, but collecting data, and how important, how it can be used if you collect it properly and it’s reliable, like health, what are they called? National Health England, or… There’s all sorts of data hanging around that people can use. I mean, I haven’t really thought about it, but from big cohorts of information, and now you can download it, and you can work out what’s useful or not.

Professor David Sharpe:

Yeah, I-

Professor Claudia Cooper:

It’s an interesting human story though, isn’t it, about acceptance of this, because actually what I find fascinating is that it’s in some ways less intrusive than what we have at the moment, because people tell us they done want to do a MMSE every six months, and actually if you have data in your home looking at how quickly you’re moving up and down the corridor, on one level that’s less intrusive.

Professor Claudia Cooper:

I remember when I used to suggest falls monitors to people, and then I saw one. This was years ago. I thought, “I wouldn’t wear that.” It was a huge belt.

Gillian Harrison:

Oh gosh.

Professor Claudia Cooper:

“Have you considered a falls monitor?” Whereas actually now we don’t need that, do we? So it’s less intrusive, but I think for some people perhaps it feels more intrusive because it’s, I don’t know, more accurate? Where people feel that a lot is known about them. But I should imagine that we’re on a journey towards this being in many, many homes, and as being the much more low tech end of the dementia spectrum, we are developing manualized interventions to help family carers and people living with dementia to have the right information to think about behaviour management in the right ways.

Professor Claudia Cooper:

But if we’re successful and I think this clearly going to be successful, the technology aim, then we should be working together in the future. So I suppose I find it interesting to think about the environment in which we will still be caring and being people and thinking about relationships, but we’ll be doing it in a potentially more helpful environment.

Gillian Harrison:

It’s not amazingly intrusive, what you were suggesting in your talk. I mean, it’s not as bad as a chastity belt, I think. I mean, it’s not big, is it? You could put your monitors or whatever, it’s small, isn’t it, the devices?

Professor David Sharpe:

It is, I mean, well obviously we’re doing this with our partners and actually the feedback is, people don’t notice it, there’s nothing-

Gillian Harrison:

Well you soon get used to something, don’t you? You don’t notice the telly’s even on. That sort of stuff, so you wouldn’t notice it was there, I wouldn’t have thought.

Professor David Sharpe:

You wouldn’t, and actually I think the distinction between thing that you have to engage in, things that you have to wear or put on, or that are in some way intrusive or annoying. To me a lot of what we might do is in that realm, but actually we need to move as much as possible towards the completely unobtrusive and passive assessment. So we’re just monitoring the environment in a way that you never notice, then that’s where we need to be really, because then we don’t have problems with compliance and with engagement.

Professor David Sharpe:

And that’s true, if you think about the cognitive tests that you might do, the problem is that you’ve got to do them right, and if you want to track how people are doing over time you’ve got to get them to do it every month or six months, or whatever it is-

Gillian Harrison:

Then you dread going to have it done.

Professor David Sharpe:

Yeah, exactly.

Gillian Harrison:

My own dear-

Professor David Sharpe:

Yeah, it give us more information, but actually is much less onerous to engage in, I think.

Megan Calvert-O’Hare:

But going back to the point that you made, Claudia, about people might not actually want people to know that much about them, and you say passive in a good way, but it could also be in a bad way, like you’re just sending out all this information, and you have no control over it. If you go to a doctor you can control what you say, you can say, “I feel okay today,” so that you are giving the information. But having all the sensors in your house would tell a different story, and maybe you don’t want that story to be told.

Professor Claudia Cooper:

But there’s still a huge amount of health information about all of us in our GP records, electronic records, and so forth, isn’t there? And I suppose it is about how you control that. What I think is going to be very interesting is, I’m sure this is going to transform how we do research. So the study that I’m about to start, the outcome assessments will take over an hour. And that puts a lot of people off.

Megan Calvert-O’Hare:

And you have to come in to do them.

Professor Claudia Cooper:

One, they will go to anywhere you want, if you’ll take part in our study. But it’s an hour, and hour and a half of sitting there answering questions, and actually having sensors put in your house, I should reckon for many people would be far less onerous than that.

Gillian Harrison:

So there’s a great opportunity for research data there to be collected, and then acted upon.

Professor David Sharpe:

Yeah, I think we should view this as the same system can be useful or practical, or beneficial to people, but also gives us an opportunity to develop our research capability, and we can link those two things, they’re interconnected, I think.

Gillian Harrison:

What sort of timeline are we talking about there?

Professor David Sharpe:

Well, so we’re doing the data collection now. I mean, we’re working with our partners in Surrey, they have a group of patients who are being trapped at the moment, being monitored, and we hope that things will just roll on seamlessly so we’ll always have a group of people affected by dementia, carers and patients who are going through the system and we’ll just plug in new technology as it becomes available.

Gillian Harrison:

Because I think as a carer, ex-carer, people know I’ve gone through it and they’ll say, “Oh, what’s the latest? How long’s it…” And we know there’s probably not going to be any drugs in my lifetime, certainly. So this is a positive thing you can say to people. I’m always saying, “Well, they’re coming on. They’re finding out much more about dementia, but it’s not here yet.”

Professor David Sharpe:

But I think this is a really positive, practical thing that we are going to be delivering, things that are useful now. I mean, the dementia research is generally, the focus is much more on the development of new disease treatments, and that’s obviously a really important directions, but it’s going to take a while for the fruits of that to come through to the individual, but in the meantime we can have benefit by doing things in a more practical way.

Gillian Harrison:

And of course it, sorry. It came out very early on also in the amount of money that’s spent on dementia research-

Professor Claudia Cooper:

I was going to say, less than 5% on care.

Gillian Harrison:

It’s tiny compared with dementia care and charity money as well, and so it’s taking time, inevitably, to build up enough researchers to do the research. You can’t just suddenly do research, can you? No, so there is a time lag, and we’ve got to keep pouring money into helping the education of researchers coming into the field.

Megan Calvert-O’Hare:

Claudia, I just wanted to ask. You spoke about NIDUS today, did you?

Professor Claudia Cooper:

Mm-hmm (affirmative).

Megan Calvert-O’Hare:

So that’s the New Interventions for Independence in Dementia study. For our listeners who weren’t here today, could you give a brief-

Gillian Harrison:

Yes, I haven’t tired of it.

Professor Claudia Cooper:

Right.

Gillian Harrison:

Sorry about that.

Megan Calvert-O’Hare:

-summary of your theories?

Professor Claudia Cooper:

Well this one of the Alzheimer’s Society three Centres of Excellence, one that’s based a UCL, and we too really, it’s a similar aim, are trying to extend the amount of time that people can live in their own homes with dementia, and the way that we are doing that is to work, develop an intervention in which family carers of people living with dementia set the goals around what they think is important to enable them to stay longer at home, because we hear a lot at this conference about how dementia is an individual condition, and actually what the critical things are which are going to enable you to stay longer at home are also individual.

Professor Claudia Cooper:

So it might be about better care of diabetes, it might be about having more activities, accepting home care. It can be about a whole range of things. So we’re trying to be smart about how we deliver interventions so that rather than everybody having everything, it’s modular and depending what your personal goals are, parts of the intervention are selected for you, and then we’re going to look at whether or not over a year people who have our intervention to help them reach their goals are more likely to do that, and in the longer term, we will think about, look at whether or not it enables people to stay longer at home. But it’s very much about the human relationships really, and fundamentally about the fact that often there are resources around in a community, but it’s no good to someone if they don’t know what’s right for them, be linked up in a way that is helpful and have the right support in the right time.

Gillian Harrison:

Because one of the great problems with dementia is the fact that it’s so different from one person to the next. You might develop some very good technology for one person, but it won’t be helpful for somebody else, because every case is so different. And we’ve been talking to people here, you talk to colleagues or friends, and we’ve all been through different situations. It’s all dementia, but an individual approach is very important, or tailoring it to the individual.

Professor Claudia Cooper:

Well it’s an individual approach for a common goal, which is to stay longer in your own home, be that’s where almost everybody wants to be.

Megan Calvert-O’Hare:

I actually wanted to ask that, is that true? I mean, I assume it is, but.

Gillian Harrison:

I’m sure it’s true, yes.

Professor Claudia Cooper:

Well we should ask around, shouldn’t we?

Gillian Harrison:

We should, we ask around, yes. Well there’s statistics about those that wanted to stay in their own homes. I mean, it’s quite high, isn’t it?

Professor Claudia Cooper:

It certainly is, and most people say that they want to live and die with dementia at their home, and I’ve seen, my clinical job is working in care homes as well as in a memory service, and it’s such an enormous disruption, needing to move out of your own home, and often, if you think people who have lived 30, 40 years in their own home and have a lifetime of memories in their living room, but also in the local community, and people that know them, and I think often people never recover from the transplantation of this.

Gillian Harrison:

Yes, I’ve got a cousin who’s just died, and she was an only child, she’d been born in her house. Hadn’t got married. And then she breaks her hip, then she goes into, eventually into a nursing home, and you’re totally disoriented. Well, she never really recovered. It only caused her to be confused, and…

Megan Calvert-O’Hare:

But in a way can you harness some of the technology you’re talking about to use in people’s homes in care hopes to somehow help the transition, or-

Professor David Sharpe:

Yeah, definitely. We focused our initial efforts, our initial plans really on the home, just for exactly as you said. I think people in general want to stay in their home. I think if we can extend the time that they can live well in their home, then that’s got to be a good thing, right? But the technology is agnostic, obviously. It doesn’t care where it’s deployed, and of course deploying it into a nursing home or a care home would be potentially very valuable I think, and that is something that we’ll explore the best way that we can pilot that, or I’m sure we could add to the care home, and the carer, really.

Professor Claudia Cooper:

I think it would be incredibly helpful, because certainly in a lot of care homes I go into, you have when people are of great concern, they talk about one-to-one ops, and so what you have is a chronically dis-funded sector, with lots of people rushing around, looking after most people on the floor, and then maybe a couple of people that have somebody one to one with them, and actually that doesn’t work for anyone really, because that person will want some privacy, and also wouldn’t it help people be a little less stressed if those people could be a little bit more spread-

Gillian Harrison:

Used, yeah.

Professor Claudia Cooper:

And used, and I’m sure that that one-to-one ops could be very much assisted by technology. I mean, it would be an obvious use, wouldn’t it really?

Gillian Harrison:

And actually we also came across human rights for people in a general UN, human rights things, but with dementia we’ve got the right to not be pushed into a home. But I mean, what was the alternative, if there’s no one to look… That’s the only practical thing, but it all comes into this business of provision at home, and the practicality of doing it at home.

Professor Claudia Cooper:

And often one of the final things that leads to a care home admission is that people will not accept home care, and that’s a great challenge, and I think that what people are realizing is that the earlier you gradually introduce something and make it more acceptable, the more likely that is going to be acceptable.

Megan Calvert-O’Hare:

Do you mean technology, or do you mean [crosstalk 00:26:05].

Professor Claudia Cooper:

I mean a person, we’re talking about people now. I think if you’re somebody that’s led a very independent life, and often you hear, “She is fiercely independent,” but I’m quite sure I am going to be fiercely independent. Aren’t we all fiercely independent? And if you are fiercely independent and then you get to the point where things are completely broken down and somebody says, “You need care to come in four times a day,” you’re probably going not say no, because the chances are, you might not see things the way other people do. But if you have a cleaner once a week, if you have people popping in and having a cup of tea and gradually getting to know you in a way that’s acceptable to you, then it’s much more gentle to increase that.

Professor Claudia Cooper:

I mean, my grandmother would only accept the hairdresser, so she had the hairdresser every week, and she didn’t have to have her hair cut every week.

Gillian Harrison:

No, no.

Professor Claudia Cooper:

But that was an acceptable, because that’s something that she’d always done all of her life, and we used to, I’d say to the hairdresser, “Can you try to do a bit of a wash as well?” And that worked very well for a long time.

Megan Calvert-O’Hare:

Can you build on that and somehow make the technology more human, because one of the big things is feeling isolated and lonely. Is there some way you can make the technology help with that side of it, chat to that?

Professor David Sharpe:

I suppose one could say, linking with your work, is we don’t envision this as replacing people at all. This is augmenting the system we have. The reality is we have in some places a very low bar, where we have limited resources often, and actually we’ve got to work out ways to make the best of that.

Professor David Sharpe:

On the social side of it, in different parts of the world there’s different attitudes towards this. For example in Japan they’re very interested in social robotics, and social technological in reactions really, and people are much more open to the idea that you might use technology to augment or reduce isolation and things like that. They developed this seal called perusal which has some robotic elements to it, and it’s relatively widely used in Japan actually, for people with advanced dementia, as a way to provide companionship in some ways.

Megan Calvert-O’Hare:

It’s like a seal, the animal?

Professor David Sharpe:

Yeah, it looks like a seal, and it’s cute and-

Gillian Harrison:

Feels like a seal.

Professor David Sharpe:

Yeah, it feels like a seal. I mean, I won’t say that that’s necessarily what we should be doing, it’s quite expensive, actually.

Gillian Harrison:

We won’t be doing that.

Professor David Sharpe:

Yeah, but you can imagine, I think, some version of that kind of technology being useful to people who are growing increasingly isolated, which is what’s happening.

Gillian Harrison:

Actually the technology really is very important for the carers. You might be able to look after your mother in her own home more if you’ve got things to, well I don’t want to replace people my any means, but it might enable people to look after their father, mother, whoever, at home more if they’ve got more facilities to help them.

Professor David Sharpe:

And that’s definitely one of the things we’d like to do. We’d like to support the carers who are just as much affected in some ways, it has a massive impact. And I think if we were able to support carer so that they were able to look after people for three or four months longer, I mean across the entire population that’s a massive impact, so that’s-

Gillian Harrison:

And saving a lot of money, this comes into it.

Professor David Sharpe:

Exactly.

Gillian Harrison:

Because putting someone into a home, for them or the carer, is a very expensive business, and the state. So that should be told to people, that it’s very important to try and do this, to keep them out of hospital for that reason alone.

Professor David Sharpe:

Yeah, I think that is a message that the government are receptive to, they’re receptive to the economic arguments, only in the way they pass on some other things.

Professor Claudia Cooper:

We talked about that this morning actually, when the Minister came, is about how we implement this to make what we have now better, and actually if we have a way of delivering systematically good care, it’s not about there not being wonderful care out there, it’s about improving, I think, the average offer, because at the moment you hear wonderful and you hear awful, don’t you? And I think it’s about getting to a place where everybody has a-

Gillian Harrison:

And it’s very variable. Not only the person but across the country. I mean, this is what’s also come out today is that oh, Manchester I think somewhere, they’ve got an amazing system, and their statistics are much, much better than other places, if your diagnosed somewhere else, and you’re lucky if you see anyone for two or three months even to help you after the diagnosis. So it’s very, very patchy. That ought to be able to be cured somehow, shouldn’t it?

Professor Claudia Cooper:

Absolutely. I mean I think there’s also a lot of global learning, and that we’re all trying to solve the same problems. We’re actually, we’re going to Japan to do a NIDUS joint seminar, and we’ve taken Metropolitan University, and I think it would very interesting how I’m sure technology will feature in that, and there will be differences because currently think we’re quite low tech, apart from places which are extremely high tech. But it’s interesting to-

Gillian Harrison:

So have they done research on how effective high tech care is from the point of view of the person who’s receiving it? Do they like it, in other words?

Megan Calvert-O’Hare:

Oh, here’s a perfect one for you, isn’t it? Do they like it?

Professor David Sharpe:

Yeah, I think our experience in this project is that people do like it, and they feel supported and safer and empowered, and these sort of things. So in terms of a general quality of life effect, I think it’s generally positive. More we hope to do is to tailor the new technology to maximize those quality of life benefits really, to work out what’s going to have the biggest bang for the buck, really I suppose, and go that direction.

Megan Calvert-O’Hare:

And so on that same, you talked a little bit about co-production as well, and one of the examples you gave was about weighing scales. Maybe you could elaborate for us then.

Professor David Sharpe:

That was an example from the series for the dementia project really, and in that project they were really taking stuff that they’d manufactured for other reasons. Those are things you can just buy on the internet, and we’re linking up the companies, so it wasn’t at all made specifically for the dementia space. But for example, people were getting weighed once a day. The company delivered some black scales and there was a problem for quite a few of the patients because they perceived the black scales as being a hole in the ground, and so wouldn’t stand on the scales. That was obviously solved by providing some white scales, which were more fit for purpose.

Professor David Sharpe:

But also more difficult to solve, for example they had an iPad app that had been developed as a way to interact with people remotely, and a company had put a lot of time into developing this software, and they had an avatar, a face on the screen that would talk to people, and the problem was that nobody liked it. Everybody thought that the faces looked really weird. It was quite frightening. So the interesting thing there from a design perspective is that the company spent 100,000 pounds on getting it to that stage, and never really showed it to anybody. Obviously if you were to approach things differently and show somebody a picture of, you draw it and say, “What do you think about this?” You’ll make-

Gillian Harrison:

Didn’t you say that part of your development is getting the designer in right at the first thing?

Professor David Sharpe:

Yeah, so we have a design studio if you like, which is within Imperial, it’s called Helix, and it’s a partnership with the Royal College of Arts, and that is specifically about trying to do health design in a different way really, and that’s led by a guy called Lennie Nye, he’s working on this project. So he’s not an academic, he’s a designer from industry, and he’s interested in how we do this technology design in this space. So the idea is we bring people in right at the start, right now, who are affected or living with dementia, or people, GPs, or everybody that has a stake in it, and we bring them in at that start. And what they do is they mock up things that we might make, so this situation we might mock up an iPad face, just a very low tech, low cost version to show it to people and they interact with it, and then we get a feel for whether or not that’s going to be a good thing in the end.

Megan Calvert-O’Hare:

Market research, basically.

Professor David Sharpe:

Exactly, so it’s a typical co-design approach, but in a way focused at the start of this whole design process. But I think it’s just a really interesting approach to it, because what I see in here is we’ve got lots and lots of really clever engineers and computer scientists, and they’re typically working a long, long way from reality. A long, long way from people in the community, right? So they do lots of really cool stuff, and then a few years later eventually it might get into somebody’s hands and you say, “Well that’s not really what we want,” or, “It’s not going to work because it doesn’t look right.”

Megan Calvert-O’Hare:

You mentioned Imperial now engineering and the medical studies are going to be in the same building, is that right? [crosstalk 00:35:17].

Professor David Sharpe:

Yeah, so historically there’s been a problem because we’re on different campuses, so engineering in the South Kensington bit near the Royal Albert Hall, and the hospitals are scattered in different locations. And so the vision Imperial recently has been trying to bring them together, and we have a new campus which is on the old BBC Worldwide site by the A-40. And there we’ve got a number of buildings that are bringing the engineers and the medics and the technologists into the same space. And also industry, so a small industry are being given space, aligned with the university sector. So this is think is a great example of a target where people can really engage with it in a very practical way. I hope this will be a perfect project for people to link together in that space.

Megan Calvert-O’Hare:

Cool. I just wondered about, you said about the avatar and it didn’t go down well.

Professor David Sharpe:

Yes.

Megan Calvert-O’Hare:

I wonder over time of obviously new, different generations are going to come up to the dementia age, and like you were saying about in Japan it was very well accepted to see, but it might not be here because we just don’t have a similar culture towards technology maybe. So over time do you see it changing, and things becoming more acceptable, or do you find that most things are accepted, it’s just that avatar was weird?

Gillian Harrison:

Like the picture.

Professor David Sharpe:

No, I think it’s changing really fast, right? I think the way we live now is in some ways quite different technologically to say 10 years ago. It’s now in the way that we use our phones and how we communicate, Our Family WhatsApp, RealWear, everything’s shared and my seven-year-old son is sharing everything and taking pictures of everything and linking in with his grandparents the whole time. I mean, that’s very to me, a very positive-

Megan Calvert-O’Hare:

He’s very advanced, [crosstalk 00:37:08].

Gillian Harrison:

I have to go to my nine-year-old to make my phone work.

Megan Calvert-O’Hare:

I think that’s what I was meaning, not necessarily the technology, but the people will change, so you’ll get different-

Gillian Harrison:

I think you’ll still have the same problems with dementia, well less competent. We’ll have the same problems with the actual, and it can be very variable still, but you will probably be able to assume someone perhaps will be familiar with say, a smartphone which people aren’t at the moment. It’s no good saying to them, “Oh, you can listen to Alexa,” they’re not capable of doing that because the dementia has taken over, and they don’t want to do it, and the carers don’t want to be involved. But I think that will change to certain… They’ll see and they’ll be familiar with the technical things that we’re not really in my generation, so-

Megan Calvert-O’Hare:

And people are showing that in terms of caring for your long term conditions as well, that actually if you have a long term condition such as diabetes that you’ve had for a long time and you get dementia, you can often carry on administering insulin and so forth, for some time.

Gillian Harrison:

Oh, I see, because you’ve been doing it, yeah.

Megan Calvert-O’Hare:

Because you’ve been doing it for a long time. But if you develop diabetes after dementia then that’s much less likely. And certainly in our memory service, I’ve occupational therapy stories says you have to work with the smartphone people have, and if somebody has got something like that, and it’s amazing, they’ll use it.

Gillian Harrison:

They’ll use it, yes.

Professor David Sharpe:

And just a point about that. I think that idea of getting in early is potentially really valuable. No waiting until everything’s a disaster. But just an extension of the point you made, really, but I think from the technology point of view, if you have the system in place very early on when people have a pretty normal life, essentially the office of technology can learn what somebody’s normal routine is, which is often quite structured. I get up at 7:00 every day, and I go downstairs and make breakfast. I do things in a pretty regimented order, and although we all do things very differently, as an individual you tend to do exactly the same things again and again.

Professor David Sharpe:

So, I think one really interesting aspect is that if we can define the individual’s pattern of behaviour, it doesn’t necessarily vary that much from day to day, and as it breaks down, then the system can support that particular behaviour. We would’ve learned those patterns, because that behaviour would have been intact previously. So I think that turns what potentially is a really complicated problem into something from a machine learning perspective that is perhaps much more tractable, much more soluble, I think.

Gillian Harrison:

Let’s hope so.

Megan Calvert-O’Hare:

That’s great. I think it’s time to end today’s podcast recording, so I’d like to thank all of our panellists, David, Claudia and Gillian. If you’d like to see more reflections of the conference, check out the hashtag, #asac19. The team will be writing up blogs for our supporters and followers that you may find interesting too. We have profiles on all of today’s panellists on the website, including details of their Twitter accounts. Finally please remember to subscribe and leave a review on this podcast through Soundcloud and iTunes, thank you.

Voice Over

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