Health in a Handbasket - Episode 8: Who cares for me? Finding solutions to dementia care

Ferdouse Akhter  00:05

Hello and welcome to Health in a Handbasket, your podcast about the sexy world of Healthcare Engineering. I'm Ferdouse Akhter, and I'll be your host and the Marketing and Community Manager at UCL's Institute of Healthcare Engineering. And although I don't always understand what's written in the research papers published by academics, I know that what we're doing in the world of healthcare engineering is important and impactful. And I want to share that with you by speaking to those who know a bit more about him than me. From today's handbasket we're looking at who all this tech us for? Is it all just tick boxes, shiny new gadgets and devices? Is that useful? Does your post code impact your care? I have quite a vested interest here as a brown woman from a lower socio economic area of England. So it'd be good to hear how technology can impact your health care. So hello, Bea. How are you?

Beatrice Taylor  01:03

Hi, Ferdouse. I'm good, thanks. How you doing?

Ferdouse Akhter  01:05

Yeah, good. So Bea is a PhD student specialising in the field of neuro degeneration, where her research focuses on developing computational models to gain a deeper understanding of disease progression. She's also the editor at chalk dust magazine for the mathematically curious. Let's start with something easy. What's your research about Bea?

Beatrice Taylor  01:26

Okay, so my research is about using techniques kind of from machine learning, mathematical modelling, to try and understand how a disease evolves in people living with rarer types of dementia.

Ferdouse Akhter  01:41

So what kind of dementia? How rare are we talking about?

Beatrice Taylor  01:44

So dementia is kind of like this overarching term, or most common form is Alzheimer's. So that's over 60% of all dementia cases in the UK. But then there's other types of dementia, which affect things which aren't memory. So Alzheimers is typically associated with initial problems with cognition and memory. So forgetting things or not understanding things, but there's different types of dementia, which affect different parts of the brain. So for example, one of ones I look at is primary progressive aphasia. And it's a bit of a tongue twister, it's marked out by initial problems with language and communication. So your memory and cognition is probably preserved. But one of the first symptoms you're going to present with is struggling to speak and communicate and also understand how others speak and communicate.

Ferdouse Akhter  02:31

Okay, and how are you using AI to kind of tackle primary progressive aphasia? progressive aphasia?

02:39

yeah, it's a great question. So what I'm interested in is once we've got these datasets, so we've got all these observations of symptoms, or MRI scans, is how can we use that to inform our understanding of disease. And I do that through developing models. So it's a bit of a mix of mathematical models, but then also with machine learning, or AI used in there to try and improve these models. And how well they describe datasets in question.

Ferdouse Akhter  03:07

And what exactly is a computational? What exactly is a competition or model?

03:13

Yeah, it's a good question. I think the word model mathematical model, computational models can seem really daunting. And I kind of like to think of it as being a little bit like a train set. So like a model train, in that, when you have this train set, the model maker is trying to sort of approximate reality, it's a version of what you see. But it's not a perfect representation. And a mathematical model is a little bit like that. My equations are like a train set. And I'm trying to mimic reality, but it's never going to be a perfect representation.

Ferdouse Akhter  03:47

So you're going to use the models you create, to kind of track people and the Aphasia, and then use that to find solutions to it.

Beatrice Taylor  03:57

Yeah, that's the hope. The hope is that these mathematical models give us a better understanding of maybe the sequence of things occurring. So if you're able to say which area of brain you start to see dementia, or atrophy, and first or perhaps if you're able to say which symptom occurs first, then you're able to better target drugs and care, and how you look after these people.

Ferdouse Akhter  04:19

Okay, that's so interesting. And why is it important to know about these less common forms of dementia?  Well, to me, one of the really important thing is that they're a lot harder to care for. So they tend to be diagnosed earlier. So a lot of people are going to be diagnosed with these before the age of 65. So we call them a young onset dementia, and then also because of these unusual symptoms, they can be quite hard to care for, and also to experience living with, but in particular for the caregivers and the carers understanding how to deal with these more unusual symptoms can be quite tricky. Is that because it's not common? It's not seen in like, media and stuff like that?

Beatrice Taylor  04:56

Absolutely. So like the doctors awareness of it is less A and yeah, we don't have representations in media with these types of dementia.

Ferdouse Akhter  05:05

You mentioned the carers are caregivers. And that's something that you're really passionate about in your work and in your motivations as well.

Beatrice Taylor  05:12

Absolutely. I think it's so important because I think caring for people living with dementia is a very difficult thing. And it's also a job, which often falls on certain people in society just proportionately. So I guess there's two main types of caregivers we see. And this is kind of across healthcare, not just in dementia, but maybe we can talk about specifically in the case of dementia. So we see paid caregivers. So that's the sort of people who'd be working in nursing homes or care homes. And these are disproportionately women, but normally on really bad work contracts. Also, disproportionately people from certain backgrounds, and we're not really valuing them or paying them what they're worth, because this is a really important job, how do we care for the elderly in our society. And then I guess the other type of caregiver really is the unpaid caregiver. So the family members, the daughters were wives or husbands or children of people living with dementia. And then this is quite a sort of feminist problem, because these also tend to be disproportionately women. And it's another example of how women tend to take on a lot of caregiving roles, and taking care of the family and the home roles in society. So we see that this is mostly women, it's unpaid, and it's kind of undervalued.

Ferdouse Akhter  06:27

So I guess that's where your AI, and your modelling comes in, because then you can see who these people are.

Beatrice Taylor  06:34

So to me, one of the really exciting things about this is that I can use my background, which is in mathematics, that's what my undergraduate was in, in a way that really helps people who are disadvantaged in our society, which is something I'm super passionate about. And as I was just saying, this sort of issue of who does the labour and who's the caregiver is a feminist issue. But it's more than that it's an intersectional issue. It's also related to who gets cared for, who gets the right health care they need through our NHS. It's sort of tying all these different ideas together. So a big part of the modelling done by me and the research group by men, is how can we kind of spot these initial symptoms of dementia. So trying to pick out patterns from MRI scans or symptoms, which might indicate someone has dementia earlier than they currently would based on presenting in a clinic where we try and get diagnosed by a neurologist.  Back in July there was a big headline about a new dementia drug which has been developed, it costs actually over $80,000 a year for a single person of treatment. So this drug isn't very accessible. But also beyond that, it has to be used in the first like, very initial stage of someone having dementia. So this drug isn't really that useful if you start receiving it post diagnosis, we almost need to be able to identify if people have dementia 5-10 years earlier than we currently do for stroke to really be viable.

Ferdouse Akhter  08:03

So that's quite a big problem, then, how are we helping people in the UK right now? So those without access to 80,000 pounds a year? per person?

Beatrice Taylor  08:14

I think I actually don't know the exact figure, but I think it's upwards of $80,000 a year, which is shocking. That is so much money.

Ferdouse Akhter  08:22

I didn't think it cost that much to kind of like give drugs to people.  Well, I don't think it does. It's not the real cost. It's it's the pharma companies profit and to recoup the money from those years of research. Shocking. So how do we how are we helping people with dementia right now with that type with the type of aphasia you talked about? How are we helping them

Beatrice Taylor  08:43

With the type of aphasia I talked about? Specifically, when I work with a charity here at UCL called Rare Dementia Support who are able to offer help with it? We don't currently have any drug treatments. So it's all about how do we care for these people. And that's actually quite a big problem in the UK because we have a shortage of caregivers. And there was a statistic I read online, I'll read it out for you. So I read that Dementia UK, one of the big dementia charities said that this year, they are expecting nine times more safeguarding calls than they were two years ago

Ferdouse Akhter  09:16

What's a safeguarding call?

Beatrice Taylor  09:18

So this is people ringing up and saying like, they have they really worried about that person who's living with dementia, like there's a risk here, that they're not getting the help they need. They're not getting the care they need? So these are pretty serious problems. Yeah. And I think this kind of links in with sort of the cost of drugs. And it's all to do with the privatisation of our healthcare system. And also austerity, meaning that the government spending less money on these issues.

Ferdouse Akhter  09:45

This makes me think of - Do you remember during COVID, there was all these headlines about Matt Hancock, and how he gave the green light to elderly people going back to care homes, and then infecting the people in those care homes if they had COVID. Just Sounds like a similar thing to that.

10:02

Yeah, absolutely. It's a great example, Ferdouse. I think that was really an example of how little our government cares about a lot of society, in this case, specifically, sort of the elderly and people living with dementia. But it was a complete sort of mismanagement of COVID. But I think sadly, it also came from a political perspective of, you know, they didn't really care about getting most people's vote at the next election, because at the end of their lives, and that's really dark.

Ferdouse Akhter  10:30

Yeah. I also think that we live in a bit of an ageist society, where there's not that community aspect there's not - it's a bit of a lack of care - coldness. When people at the beginning heard that COVID, kind of like maybe affected, the elderly, people didn't seem like they cared. And I remember during COVID out here, have stories of like friends of friends and stuff like that, of how the young people in the household would be going out doing whatever they wanted, meeting friends, all of that stuff, but they had elderly parents or grandparents at home. And it's like, Do you not care? Do you not care that you could be infecting your family, regardless of your family, your your family, the people around you, all of that stuff? People just did not seem to care?

Beatrice Taylor  11:15

Yeah, it's, it's really sad. And I thought it was really interesting you used to work community a lot. And I think this is kind of where it goes beyond sort of these tech solutions we have to how we care for these people, and then showing a bit more societal and political, like, how do we look after people as a community? And how do we care for people? How do we even envisage, we should be caring for these people. And a big part of this is to do with government funding, like if the government's not gonna put any money into the NHS. In fact, it's depleting it of resources every day, and privatising chunks of it, then it becomes much more difficult to care and it becomes sort of shifted on to the community to take up responsibility for that.

Ferdouse Akhter  11:58

Yeah. And I guess that's where those female family carers or whatever, come in, where they're not paid. But then they're like, oh, but then my mum doesn't get any care or, like my, you know, grandparents don't get any care, because there's no funding for it. But then it's an extra burden on those people, isn't it?

Beatrice Taylor  12:18

Yeah, it is. And we don't really value that as work.

Ferdouse Akhter  12:21

Yeah, you don't get paid for it. And it's like, Oh, you shouldn't be looking after them. But okay, but why is it only the females, mainly the females of the family doing it?

Beatrice Taylor  12:30

Yep, absolutely. So this is saying what happens when we like privatise the NHS, we push that burden of care more onto the individual. So we see this and other things like, as it's becoming harder in the UK, I think, massively in recent months to get doctor's appointments, it pushes that sort of burden of self diagnosis and care onto the individual. And the same thing is happening with the elderly and caregivers. So the burden is on these family members. It's unpaid workers, and this sort of complete lack of respect for the labour which goes into it.

Ferdouse Akhter  13:02

It doesn't mean it's like the childcare thing, though, isn't it? It's like, apparently, childcare in the UK is one of the most expensive and people so then you have to like either stay at home or you go crazy, because you can't afford it. Because it's economically unviable. Like, it doesn't make sense. And none of us like economics here, like, how do we realise that? It's so expensive to raise a kid or look after a family member? But it'd be cheaper for the government to just pay?

Beatrice Taylor  13:31

sort of socialism?

Ferdouse Akhter  13:33

Not the S word, you can't say the S word but yeah, that's what I mean. I think people forget that socialism has done amazing things for this country. In terms of like free education, the NHS like you mentioned, our roads being catered for, you know, potholes being potholed over. I don't know the right word - filled in with tar, right?

Beatrice Taylor  13:54

I like potholed over!

Ferdouse Akhter  13:57

 No, I only said that, because I'm from Luton and in Luton they've done like a really good job filling in potholes, for some reason, unlike the last like 10 years, where it was a mess. But this summer, a really good year for potholes. Yeah, not the tangent we wanted. But yeah, socialism has done a lot of many great things for this country.

Beatrice Taylor  14:23

I think it gets a bad reputation, right.

Ferdouse Akhter  14:26

it's been kind of like used as ammunition these days.

Beatrice Taylor  14:31

Absolutely. Especially. Yeah. But I think socialist theory really has a lot of ideas as to how we solve these problems. How do we care for people? How do we think of care as a society? Which is all in the socialist literature.

Ferdouse Akhter  14:50

Like bringing it back to the community instead of like, individualism and yeah, you make your own money kind of thing. But that doesn't always work because you need a community around You to support you emotionally, sometimes financially, yeah, to help you make your own money in your own way kind of thing. And I think people forget that a lot.

Beatrice Taylor  15:08

I think it doesn't happen. It's not just about having better communities, it's also about having better government provision in the first place. If you have a really strong national healthcare system where everyone's able to access what they need, and it's free at the point of use, then I think it becomes easier to also form the communities and sort of care as a community as well, because you don't have this sort of individual economic burden and stress related to accessing health care.

Ferdouse Akhter  15:35

So you don't have that everyday stress of like, oh, like, I've got this ailment. Yeah, I don't know if I'm dying or not. Well, it's true, because people can't go to the doctor has my friends always telling me about how, you know, they've got this issue. They're like, Oh, it might be this really serious thing Or might just be nothing, but you just don't know. And that's a stress inducing time of your life.

Beatrice Taylor  15:57

Yeah Exactly. And so if you can't access your GP, or get an appointment at the hospital, then that sort of stress and burden goes on to the individual. And I think that's something we're seeing increasingly. So I've actually I read something really interesting the other day about how sort of people saying that it's a, the increase in self diagnosis can be a positive, because it's giving you the power to make decisions about your own health, rather than it always being in the hands of doctors who often sort of people from a specific background, like maybe quite wealthy, white men, stereotypically historically would have been doctors. But I think there's also this negative in that it makes it it's it's sort of more of a sort of personal responsibility to be able to diagnose and think about it. And I think being able to access healthcare for your health care provider is so important, because it externalises That fear.

Ferdouse Akhter  16:35

But also to affirm what we have. I remember, I had a thyroid infection a few years back, and I looked up all the symptoms on Google. And it was a thyroid infection. And I went to the doctor, and I was like, I think I have a thyroid infection. And these are the symptoms I have and use your prescribing antibiotics. And he did. And then I was fine. So it was a thyroid infection. So I think it does help us all. But I needed the doctor to affirm that diagnosis or what I thought. So having that kind of person. And it also just helped it was just helped me going to the doctor speaking to and not just having get home and just worrying.

17:27

it's like you just worry, right?

Ferdouse Akhter  17:28

yeah you know everytime you have a lump  on your throatIs it cancer? Like it always goes to like the worst thought.

17:38

Yeah, like, really? Yeah. You fear the worst. Right?

Ferdouse Akhter  17:42

Yeah, you feel the worst. And right now now is I'm just talking myself into a little tizzy. But yeah, you're right. That community care, like even the talking to the GP? That's a sense of like, is the community is like, interaction, which is nice. And which we're losing? Which a bit sad.

Beatrice Taylor  17:59

Absolutely. I think so. And there's a lot of ideas sort of within socialism about how we care for people as a collective, and it being a group level thing. So rather than sort of you having individual responsibility for your grandmother, or your father spreading out this responsibility amongst a group of people, yeah. And then we can sort of share the burden and responsibility.

Ferdouse Akhter  18:23

Definitely, and I don't think it's just like, you know, when you start labelling things, I think people get scared off. And I don't think it's, it's not even just a socialism thing. It's like, people do want to care for each other, but we're slowly losing things like community centres, and, you know, libraries, and all of these places that people used to hang out in, especially the elderly, as well, like, yeah, you know, they don't have that kind of care anymore. And like, with young people, as well, it's like, you see a rise in like knife crime and this and the other, and you're like, okay, but these kids have nowhere to go. So then they go into like bad places or with bad people. And you wonder, okay, why is this happening?

Beatrice Taylor  19:00

Well, I think the government has lost definitely answer for her because it's all austerity. Yeah, it's these constant cutbacks to public services, like hospitals, libraries, community centres, which is driving this.

Ferdouse Akhter  19:11

And it's not for a lack of money, because we all know, this government has money. Yeah. We spend money on PPI on boats or whatever that thing was, you know,

Beatrice Taylor  19:20

Over floating boats for migrants? Yeah, yeah, exactly.

Ferdouse Akhter  19:23

Like, like, okay, yeah.

Beatrice Taylor  19:27

Yeah, we spend money on all sorts of ridiculous thing

Ferdouse Akhter  19:29

And that plane as well, during COVID to re paint the plane in the in blue, red and white and stuff in it? And like Boris Johnson spent like, a million pounds on that.

Beatrice Taylor  19:43

Yeah. And yeah, we do have this money and we're spending it on particular things. Yeah. And it's just this sort of lack of prioritising the right commitments. If you have sort of 40 odd years of austerity, which is basically what we've had in the UK since the 1980s of cutbacks followed by cutbacks, then you see the NHS and the states and today,

Ferdouse Akhter  20:06

and I think it kind of like goes back to what he said, like with increased rates of dementia and so on. So if you isolate people that you need that social interaction, you isolate people they're at an increased risk of dementia. I think I read a UCL study on that.

Beatrice Taylor  20:22

Yeah, Like having good social interaction is one of the biggest sort of buffers to actually loads of different diseases . It's actually so important for our health, having people around us and having social interactions.

Ferdouse Akhter  20:33

So we're not meant to be individuals just chasing money. Yeah, I think I think I don't I don't see the full happiness in that, like, you need people around you. If you think about what brings you happiness? It's the people around you Rather than money. It's never money, well, I mean, money makes you comfortable. And then you're like okay, who are the people around me? And who do I love and all of that kind of stuff?

Beatrice Taylor  21:01

Yeah. It's very sweet anti capitalist message Ferdouse?

Ferdouse Akhter  21:05

Yeah, I didn't realise I was that. But yeah, it's nice to have nice people around you instead of and supportive people around you. And that's what we should be chasing.

Beatrice Taylor  21:16

Yeah. And it's really important.

Ferdouse Akhter  21:19

Like you said, like, is good, you know, to help stop us. increasing rates of dementia, and all of that kind of stuff is to have good people around us and be happy.  Bea all this talk about socialism is super interesting. But do we have any solutions to the problem?

Beatrice Taylor  21:37

I think it's a really tricky thing to answer. Because the problem is, these are big problems. These are big societal problems. And we've sort of in this conversation, we've gone from just like, how do we care about poor people with dementia to sort of how do we fix society. And that's the thing that these really big societal intersectional issues and fixing them is going to take time, and probably people with much better ideas than I do. But I think coming back to sort of dementia and how we care for people dementia, I'm quite optimistic. I mean, I think we often see like this bad rep for AI and machine learning and complete, other topic to talk about is sort of the pitfalls ahead for that, but I'm optimistic that we can use it like in the work I'm doing to try and learn more about dementia, be specific forms of dementia, and hence sort of how we care for people with this.

Ferdouse Akhter  22:32

Thank you. Bea. I think that's a nice note to end on with solutions to a problem, and I really enjoyed our conversation. I think you know, we should all be happy and find happiness in this life outside of money and caring for each other is such an important thing, because it makes you happy

Beatrice Taylor  22:49

Absolutely. So you're ending on a note of collective action? Yes.

Ferdouse Akhter  22:55

And yeah, really people listening in draw inspiration and kind of like, chat to that friend or knock on a neighbour. But yeah, thank you leaving.

23:03

Yeah, thanks. It was really good conversation.

Ferdouse Akhter  23:13

Health in a handbasket is produced by UCL's Institute of Healthcare Engineering and edited by Cerys Bradley. The Institute of Healthcare Engineering brings together leading researchers to develop the tools and devices that will make your life better. Were using this podcast to share all their amazing work taking place. You can learn more by searching UCL health in a handbasket or following the link in the show notes. So share with your friends and family if you found this interesting, where available everywhere, especially where you just listen to us