This week we ask how we can fix the way we treat people living with dementia.
By 2030, more than a million people are expected to be living with dementia in the UK. It is among the most feared conditions — and yet a new book challenges the dominant tragedy narrative surrounding it, proposing instead a vision of social justice and equality for those living with the condition.
What does it mean to treat someone with dementia as a social equal? How should care be reformed to better secure that equality? And what are the practical changes — in policy and in everyday life — that could make a real difference?
Joining host Emily McTernan is Dr. Matilda Carter, Lecturer in Applied Ethics at the University of Leeds, to discuss her new book published by Cambridge University Press.
Mentioned in this episode:
[00:00:04] Emily McTernan: Hello, this is UCL Uncovering Politics, and this week we ask how can we fix our treatment of those living with dementia?
Hello, my name is Emily McTernan, and welcome to UCL Uncovering Politics, the podcast of the School of Public Policy and Department of Political Science at University College London.
According to the NHS, by 2030, more than a million people are expected to be living with dementia in the UK. And studies suggest that dementia is amongst our most feared conditions. Most of us really don't want to get it. But a new book challenges the tragedy narrative of dementia, and it proposes an account of how to make society more just for those who are living with the condition.
And so today we're joined by its author, Dr. Matilda Carter. Once a PhD student in this department, and now a lecturer in applied ethics at the University of Leeds. I had the immense good fortune of supervising Matilda's PhD. She's got this brilliant way of completely upending the things you have just assumed are obviously the case. So it's a particular delight to have her back with us today to challenge the way many of us are thinking about dementia. Welcome to the podcast, Matilda.
[00:01:17] Matilda Carter: Thank you for having me.
[00:01:19] Emily McTernan: Tell us about the roots of your project and your experience as a professional carer for those living with dementia. What about that work led you to write this book?
[00:01:27] Matilda Carter: Yeah, so I worked in a kind of series of dementia care services, social care services for just about 10 years from the age of 17. And this is the kind of job that you take on when, you know, you are at school and you need a bit of extra money, and it works really well around the school day because you can work in the evenings, you can work at weekends.
It worked really well for me when I was a student because I could come back at Christmas or in the summer when people were off on holiday and fill in some shifts. And I don't know that I ever thought about it in a particularly deep way when I started working there. Over time, when I gained a lot, you know, some more experience working there and started taking on more responsibilities in dementia care, I started to feel like my kind of practical moral decision making capacities were under severe strain.
This was particularly the case when I was working in a leadership role in a dementia care facility, so involved in planning the care shift, writing care plans, organising the day, working out solutions to particular problems we were having. And at that point, all of these pressures, these kind of resourcing pressures, these sort of issues with regulation, issues with training, all these started to kind of come to a head and I started to feel really lost.
And it so happened that at the same time I was taking a part-time master's course here at UCL in legal and political theory. And I guess what I would've assumed was reading about kind of different ethical political theories would give me some guidance of what to do, how to get myself out of this position of feeling completely under strain and not being able to make good moral decisions.
But what I found was it was surprisingly unhelpful. And work on these issues was surprisingly absent from the literature and eventually I kind of resolved to do it myself and that was the PhD project.
[00:03:14] Emily McTernan: Fantastic. And now book, of course. So let's pin down what you describe in the book as the tragedy narrative of dementia. So what's the narrative that the book then goes on to attack? But let's start with the narrative itself.
[00:03:27] Matilda Carter: Yeah, I think you illustrated part of it in the introduction which is that people really fear getting this condition. Of the conditions, diseases, illnesses that are associated with old age, international studies, so we're not just talking about the UK here, they repeatedly bring back the result that this is either among the most feared among the general population, or the most feared among the general population. And the listeners to this podcast may share those fears and they may think they have good reasons for fearing dementia.
They may worry that through the process of the condition that they'll lose vital parts of themselves. They might feel that it will spoil or impair the quality of their life in some way, living with this condition. Or they may feel that it's a kind of fundamentally undignified way to live.
And these are all claims that you find made in the academic literature on dementia, repeated in our kind of cultural images of dementia, repeated in non-academic work on dementia. The phrase, the tragedy narrative is something that comes from critical dementia studies. I found it through the work of Rebecca Dresser, but it's something that you see coming up over and over again.
And I suppose the emphasis that's being placed on tragedy here is really important. So it's not just that people think that this condition's a kind of bad thing to live with, is that they think it's this sort of unbearably tragic thing to happen to you, that it's something that's so unfortunate.
[00:04:44] Emily McTernan: So you've given us this really nice description of the tragedy narrative and it sounds like one of the objections you are raising to it then is that it's making life worse for people living with the condition that we think of it in this way. Is that your main challenge to it?
[00:04:56] Matilda Carter: It's a significant challenge to it. I think it's something that we need to take seriously and a kind of outgrowth of the tragedy narrative is that we start to, because we're so sure, or people tend to be so sure that they're right to view dementia in this way. Any kind of testimony to the contrary, any self-advocate saying, actually, I don't think that this is significantly worse than my life inherently it's just made my life very different. It's kind of dismissed. And so that ends up being a kind of outgrowth of that narrative, this sort of slightly dismissive, inegalitarian set of disrespectful attitudes towards people that live with the condition.
It's not the only problem with it, though, it's also just kind of wrong, it's inaccurate in really important ways. Firstly, it's inaccurate in the sense that lots of people living with dementia report very high levels of wellbeing. In fact, it won't take you long if you do a kind of cursory search to find testimonies of people who say that their relatives living with the condition are suddenly much happier, much more prone to spontaneous enjoyment, much more prone to enjoying close family connection.
So it doesn't seem to allow any space for that, that, you know, there could be a possibility that ling with dementia could make your life better in some ways. But this idea of loss of self that underpins it, that, that's if you'd like, kind of the core of what's wrong with the tragedy narrative.
So, Christine Bryden, who I mentioned already, she kind of singles this aspect of it out as being something that's particularly stigmatising and oppressive. Both because it affects the way that people treat people living with the condition, but also it affects the way they feel about themselves.
She talks about feeling this immense sense of panic and disillusionment when she had her diagnosis confirmed because she had these ideas that she was gonna lose herself through the condition. And in part this is a kind of philosophical dispute I have with the tragedy narrative, which is about what it means to be yourself and what it means to lose yourself.
But it's also a kind of factual dispute that I have with it. That many of the things that people think about dementia, many of the things people think dementia will do that will cause them to lose their selves are slightly off base. So the idea that you will stop recognising your family and friends, that's a very common belief about dementia. It's true that some people that live with the condition mix up significant people in their lives and will apply the wrong names to them or not be able to quite place them, but most evidence suggests that these kind of strong emotional feelings that we have towards people that are important to us don't tend to disappear through dementia. So the kind of emotional, relational self doesn't seem to disappear.
And another thing that people start to worry about, which is that you'll lose your understanding of who you are, you'll be lost in your self conception, or you won't be able to recall who you are and how you relate to the world around you. I mean, most of the evidence again, suggests that people that live with dementia have a strong sense of themselves being a kind of continuous I, a continuous present self, in particular relations to other people, even if that might from the outside, look like they're changing their mind about who they are and how they relate to others minute to minute.
So there's no real evidence that suggests internally you lose a sense of who you are and nor is there really any evidence that you will lose the ability to identify emotionally significant people in your life, even if you might misapply labels. And given that those are two of the things that people most often refer to when they think about losing yourself through the process of dementia, it just seems like there's something factually misleading underpinning this that's leading to all the ethical and political problems.
[00:08:26] Emily McTernan: I wonder if we could press on that a little bit. So I guess some listeners might be thinking, but they do lose the narrative self.
[00:08:32] Matilda Carter: Mm-hmm.
[00:08:32] Emily McTernan: Right. So most of us tell these stories about our lives and who we are and what's a significant memory for us.
[00:08:37] Matilda Carter: Yeah.
[00:08:38] Emily McTernan: And that does go with dementia over time, I take it. People forget key memories, they can't tell those stories that they used to tell that we take to be a fundamental part of our identities.
[00:08:48] Matilda Carter: I'm not even sure that that's necessarily that well evidenced. I think it depends on the type of dementia. This is a condition that's referring to a kind of range of different syndromes, disorders, diseases. Alzheimer's disease is the most common, but there are other types like vascular dementia, frontotemporal dementia, dementia with Lewy bodies that kind of present slightly differently.
It also depends on the individual case, but I would question not just how common that experience is, but also the interpretation of what's going on that leads us to come to the conclusion that what's being lost is a sense of narrative self in a way that's very distinct from the way our narrative self changed throughout our lives, right?
So if you were to talk to me at the age of 14 playing in rock bands and youth centres in rural Sussex and you showed that person a vision of the future. The portal opened up now, and me at age 13 was looking at me in the studio right now. For all sorts of reasons there would be a kind of lack of recognition, right?
Because my life has changed in significant ways in the years since. I won't say how many, and it's changed not just in the sense that lots of things have happened to me, but also that my values have changed in important ways. It's a lot of work to trace the narrative of exactly why the values changed in the way they did, what were the inciting incidents.
So I think we sometimes assume that we have a much tighter, well scripted, internally, coherent narrative about ourselves than we actually do. I think most of us who have undergone any kind of self-reflective process for a long period of time, like intensive psychotherapy, we realise that actually a lot of the time we're just kind of making it up as we go along. It's kind of a convenient, for the purposes of the moment, way of describing the narrative of our lives. And I'm not sure that that's any different to what's going on in dementia.
[00:10:32] Emily McTernan: Before we move on to your positive vision, one last question on this. What about the experience from other people that they lose something when the person that they love deeply is living with dementia? So I take it that's a very common experience of family members, loved ones, friends. I was recently talking to someone who has two of her friends now have dementia fairly severely, and she experiences it as a loss of the conversations that she was able to have with that person of the activities she was able to carry out with that person. How does that square with your picture of dementia? Is it just that she's failing to see these are new people she could form new relationships with? What's the story of the loss there? Because they're seeing it as a loss of the person that they loved.
[00:11:14] Matilda Carter: Yeah.
[00:11:14] Emily McTernan: In important ways.
[00:11:16] Matilda Carter: I think there are two things that I wanna say about that. So, one thing is to say that, my view is not that there are no losses involved in the process of developing dementia and living with that condition. My quarrel is with the idea that that's what living with dementia is fundamentally defined by. That's the kind of central defining characteristic of it. Of course there are losses, right? I say in the book, diagnostically and also politically salient characteristic that unites all these different health conditions that we label dementia is progressive cognitive decline. And I don't think you can say something's characterised in part by decline without pointing out that it involves losses, right?
But these are kind of local losses. This is in the language of Elizabeth Barnes who is a philosopher of disability. These are kind of local losses, so specific kinds of losses like you are losing certain cognitive abilities. And then because of those cognitive abilities you've lost, you might lose certain experiences or ways of experiencing the world, and your relations might change in ways so you'll lose the way the relation was gain a new way of relating.
Of course, I'm not arguing about any of that. I think that's true, and I think it's also really emotionally difficult. But the second thing I wanna say is I think more often than not, it's most emotionally difficult for people on the outside. It's most emotionally difficult for people that are watching this person that's significant to them change.
And I don't wanna deny that that's an emotionally taxing experience. I have family experience of dementia myself from my grandparents and it's kind of undeniable that it is an emotionally fraught experience. I just think we have to be really careful about projecting the emotions that we are feeling when someone's significant to us is experiencing dementia and living with dementia onto them and their life and the way that they're feeling about living with the condition.
I think we should be empathetic towards people who are dealing with this big disruptive change in the way that we're empathetic with people who are dealing with lots of big disruptive changes in their life, moving house, having a child, changing careers, all these things can be really emotionally fraught.
We shouldn't deny that it's emotionally fraught. But also what we should be doing as we are in all those cases is supporting people to be able to come to terms with the change and to see what's valuable about the way the world now is once they've come to terms with that.
[00:13:34] Emily McTernan: And so, given this background, you say we should move away from thinking about dementia in terms of threats to welfare and wellbeing, and start thinking instead about social equality.
[00:13:43] Matilda Carter: Yeah.
[00:13:43] Emily McTernan: Talk us through this big idea in the book.
[00:13:46] Matilda Carter: The big idea is kind of inspired by the things that self-advocates say about living with dementia. What I wanna highlight is why dementia is a very politically significant experience. It's significant politically because lots of the ways we relate to people living with dementia look really problematic from the point of view of social equality.
It looks like in lots of our cultural representations of dementia, because of this pervasive tragedy narrative, that we are perpetuating reductive stereotypes that lead to certain kinds of prejudice, certain kinds of discrimination and therefore place people living with dementia in a position where I think it's appropriate to label them an oppressed social group.
I also think when we look specifically about dementia care, which is how I first started getting interested in this stuff, it looks like there are some really problematic relations of power and status in the dementia care relationship. It looks like carers have a lot of power to interfere in the choices of people living with dementia.
And the way we've structured dementia care services makes it very difficult to restrain carers from using those powers in abusive ways, but also more than that, places them in positions where they have to, even if they're well intentioned, engage in slightly neglectful or suboptimal care practices, because they feel they need to prioritise safety and basic wellbeing and then this can lead to lots of kinds of more subtle abuses of power than the news stories we see of really abusive care homes that are involved in kind of denying choice, rushing people through interventions and behaving in ways that hasten the decline of cognitive capacities over time.
[00:15:28] Emily McTernan: We are all familiar with these news stories about violent abuse and neglect of patients living with dementia, but your case is of more subtle kind. So what kinds of things are we thinking about here?
[00:15:39] Matilda Carter: Yeah, so one of the things I say in the book is that one of the core interests that everybody living with dementia has is an interest in being placed in a position to meet their own vital needs as far as they're able to do so. And by vital needs, I'm referring to kind of health, nutrition, basic hygiene.
And the reason why I think all people living with dementia have that interest is we've got a lot of evidence now that suggests that your effective capabilities, so not the underlying neurodegeneration, but the effective capabilities if you're living with dementia will decline faster if you're not placed in circumstances in which you can use them.
So when I'm talking about being placed in a position where you end up violating and frustrating the interests of people living with dementia, using your power in that way, even though you're well-intentioned, is kind of this core interest that I'm thinking about here. And I can think of examples from my own experience of working.
These are the kind of practical, moral decision making quandaries I had that led me to try and write this project. So when you are placed under significant time pressures, when you know you only have an average of 15 minutes to get to every single residents of a care home, or every single person on your list if you're a community carer. You're not gonna have the time to work at the pace of the person living with the condition, you're not gonna be able to think about how can I structure this environment to best support their cognitive capacities. How can I make it less overstimulating? How can I make it more familiar? How can I make it more comforting? Because you are being placed in a role where you have a specific job to do, which is to ensure basic hygiene, nutrition, basic kind of health.
So what that looks like concretely is if you are, for instance, trying to care for somebody who is struggling to understand why they need a carer coming in to help them. Somebody who is a bit confused and disoriented in the mornings and somebody who is uncooperative with the care interventions that you are trying to impose because they're not really quite sure why they need them.
What that looks like sometimes is the care company will assign two people and they will effectively force that person through that intervention. This is the kind of thing that's not really supposed to happen, but it happens as a result of the restrictive time and the lack of staffing.
Sometimes there aren't enough staff members and so it looks like forcing someone through an intervention or it looks like manipulating them, looks like misleading them. It might look like, if you know somebody really objects to being washed by a carer in this kind of forced way, it might look like misleading them as to the purpose of why you're taking them to the shower room. I've seen that happen a lot in care.
There's a kind of infantilisation, there's a kind of objectification, almost, treating someone like an object. And all of this is an outgrowth, as I say, of being placed in a position where you don't have the resources, you don't have the time, and very often you don't have the training to work out how to position people so they can meet their own needs.
Now, you'll notice that everything I've just said is a social and political construct. It's a consequence of decisions we've made about how to organise these services and how to fund them. None of what I've said is inherent to living with the condition. What's inherent is this kind of increased dependency on others to help you meet your vital needs but we've chosen to structure services in a way where we cannot help but instrumentalise, objectify, rush people.
[00:19:10] Emily McTernan: So if we had more time, more resourcing, people would be able to carry out these basic needs themselves just by structuring their environment in the right way. Is that the thought? Encouraging them, talking them through it? What's the concrete suggestion?
[00:19:23] Matilda Carter: Yeah. So I don't wanna overstate this case, right? So it's definitely true. That there are gonna be some cases where basic kind of health interventions you will need assistance with, right? What I'm saying is that there are possibilities to maintain agency or enhance agency that are being missed because we are rushing. Because we can't, cannot help but rush.
So one of the things I talk about in the paper is this idea of environment shaping interventions. So I have this kind of slightly grandly titled idea of the indirect first approach to dementia care. But basically what I'm saying here is because people living with dementia have this interest and being able to meet their own vital needs in so far as they can, we should be trying to prioritise interventions that make it more likely that they can meet their vital needs themselves rather than just directly trying to fulfil those needs.
So you mentioned environment shaping. This is really important. So we have some pretty promising social scientific and hard scientific evidence now that spatial organisation, so the way the room around someone with dementia looks, feels, sounds, a big role in their ability to access their effective capacities.
There's also some pretty good anecdotal evidence of this too. Again, stuff that comes from my experience in care too. So I can give you an example and I'll try to anonymise this so that it's not identifying. So when I was working in a care home, this was while I was doing my master's degree, there was a gentleman living in that home who I had been warned had a tendency to object to carer interventions in a kind of physically violent way. And after weeks of trying to work out what was going on, another carer and I started investigating whether there was anything in the environment that might have been contributing to this distress that he was experiencing in the morning.
And we started making simple changes. Trial and error changes to see whether this would have an effect. So the first thing we did was, you know, this was a care home where every room had an individualised thermostat. So the first thing we did was just increase the temperature in his room in the mornings and immediately there was a different experience. So it clicked to us that, oh, part of this is gonna be because we're coming in and being like, you need to get up and taking the covers off you, and you are cold. I don't know if you've ever been in an experience like that. I think it's quite understandable to object to that in a sort of robust way.
And what was really interesting is that after he made this one change, the possibility for making other changes started to arise, right? So we started being able to have conversations with him while we were trying to help him through morning routines.
And I asked him, in the morning would you like to put on any music? Because I knew that some residents felt kind of safer and calmer if they had familiar music on their room. And he said yes. And so I went and put the first CD that was available on and went back and talked to him about it and he said, nah, I don't like this. So it's more jazz than anything. It, it was a jazz lady. And I was like, okay, what type of music do you like? And he told me he liked opera. Now there's a kind of side note there that's really interesting, which is that if you'd asked me to predict what genre of music this man would've liked, I would never have guessed opera.
And so this is what a good illustration of why it's really important to engage in these indirect interventions where you start being able to support the effective capacities because you learn important things that will help you to care well. And so I put on an opera CD that was kind of buried underneath these other CD that his family had left him and then, you know, he was singing along, he was telling me about memories that he associated with these songs and then something really great happened, which is he started being able to do things that people had long assumed he wasn't able to do anymore. You know, buttoning his own shirt, washing his own face, brushing his own teeth.
So my thought is given that there's lots of anecdotal evidence that these environment shaping interventions can help people into a position where they can meet their vital needs in this way. And given that there's some good scientific evidence or promising scientific evidence about this too, that this is clearly the sort of thing we ought to prioritise. This is clearly the sort of thing that will avoid us frustrating, those core interests that people living with this condition have and will allow us to kind of fulfil it and help them pursue it.
[00:23:32] Emily McTernan: So there's this indirect care first aspect. The other thing in your book, one of the other conclusions you reach, one of the things I found more startling is this thought that we should often prefer professional care to informal care from relatives, a loved one for those living with dementia. And that might come as a surprise to some of us, right? You often get people reporting that they really want to stay in their own homes. They don't wanna go in the care home. They really want their loved ones to do the work. What's your story there as to why professional carers better?
[00:23:58] Matilda Carter: Well, I mean. You know, one quick clarification I ought to make for the listeners, is that I'm not saying necessarily that we should prefer it in this world, given everything I've just said about professional care. In situations where professional dementia care is really suboptimal, I can see why the least worst option would be to care informally is the language used in the field. So, not being paid a wage to care, you know, you're somebody who knows that person already.
Nevertheless, I'm very concerned about informal care and I'm very concerned about our attitude towards informal care that we think it's kind of the gold standard. I'm concerned for some clear reasons that are based on data. So if you look at Alzheimer's Disease International statistics on informal carers, you'll find that most informal carers report feeling highly stressed. They report feeling like they're not able to meet the needs of the person that they're caring for and they also report that they don't have anybody who can relieve them of those care duties when they need to be relieved.
That kind of stuff is gonna be unsurprising when you also realise that the majority of people who are caring for people living with dementia informally are spouses, who are themselves elderly, may themselves have care needs that end up being unmet when they dedicate themselves towards this role.
So there are reasons why I think it might be bad for the informal carers to do that, but what I'm mostly worried about is the effect on the person living with the condition. And what I argue in the book is this is consistent with the criticisms we have about professional care.
So if you think about the things I've said so far, I've talked about underfunding. I've talked about a lack of staffing. I've talked about a lack of training. I've talked about the fact that there are not enough staff to properly meet the needs of people living in care homes or people living in the community who are receiving community care. I've talked about the fact that there aren't enough staff necessary to relieve people from those roles. Lots of carers worked 12 hour shifts regularly. I did when I worked in care. I've also talked about how you, actually I don't think I've mentioned it in that much detail in this podcast, but I talk in the book about how our training systems are kind of minimal and they're certainly not giving people the skills they need to engage in these sort of indirect first interventions reliably. You know, we just did this stuff through trial and error.
And I also mention in the book a kind of lack of proper regulation. So unlike the term nurse, unlike the term doctor, dementia care is not a protected regulated term by law. This has really significant consequences when you combine it with the fact that recruitment standards are quite low across the field of dementia care.
So, you know, somebody can be fired from a care service for doing a really bad job, maybe even being actively abusive and pick up a job somewhere else. Someone can be working in a care home for 2, 3, 4 years without ever receiving adequate training. This is especially the case in England, unfortunately. There's a bit more training in Scotland, a bit more training in Northern Ireland as well. There are very few statutory standards that you have to meet. If you're an employer of dementia carers, and they're mostly to do with health and safety and learning how to deal with fires or fire training more generally.
And so if this is what we're worried about: understaffing, a lack of training, a lack of funding, a lack of proper regulation, why on earth would we think that informal care would be better? Because if you're in a situation where you have a limited number of family members. A limited number of friends. It doesn't look like the staffing quote unquote issue is resolved. It looks worse. It looks like there aren't gonna be enough people around, certainly not enough people to relieve people of the care duty so that they can recuperate and do a better job elsewhere.
If someone is informally caring, I'm presuming that they're not gonna be required to attend training courses. So people are just gonna have to be doing this off their own backs, figuring things out as they go along. So that's not gonna fix the training issues.
And of course, there's not gonna be the kind of robust oversight that we might think we need to kind of reliably protect people living with dementia from the abuses of power that I've mentioned if what's going on is informal care, I mean, there might be a social worker involved, there usually is, but this kind of regular oversight.
Sending people to training courses when it seems like there's a particular part of their practise that's lacking, this kind of thing's not gonna happen either. And then as far as funding goes, we can provide a carers allowance, which we do, to support people taking time out to care and we can maybe provide some adaptive equipment. But all of this is gonna happen through individual advocacy. And it's gonna rely on the informal carer knowing what's needed and being able to argue for it with local authorities or whatever body is charged with this.
So it just looks like on every metric that's gonna make us worry about the social and political effects of the care settlement as it currently is, informal care is just inherently more risky for the person living with the condition. And that's before we even start to talk about what might be like particularly wrong with informal care. And this might be the strongly counterintuitive bit for people, I think. Nevertheless, it's something that I argue in the book.
So I'm very, I'm kind of deeply worried about the idea that it's a good thing to mix existing familial or friendly relations with caring relations. I'm worried about what that might do to the ability of the person living with the condition to be treated as a peer or treated with respect in the group. I'm worried about whether it might violate some of the boundaries of those relationships in a way that makes them unsustainable.
There's more than one person I know of who has had to assist like their parent to use the toilet who talks about how deeply distressing and violating that felt to the relationship, not just their own emotional sense. They felt the relationship changed in ways that, that it wouldn't recover from.
And actually, this is something you say in your own work, something valuable about being able to negotiate how you present yourself in the public sphere. And if you are reliant on those closest to you to help you through very deeply intimate moments in your life. It seems like you lose a lot of your ability to be able to negotiate there.
[00:29:57] Emily McTernan: So some fantastically deep challenges there, I think, to how we think about dementia and what care should look like or what the best kind of care looks like. Let's wrap up with some upshots. So if you had to pick a couple or one policy change to improve things for those living with dementia, what would it be?
[00:30:13] Matilda Carter: Great, thank you Emily. I think I said to you before we started recording, that those were horrible questions. What I mean by that is, uh, you know, they're kind of high pressure questions and to an extent I don't think I know specifically what the right answers are. And in fact, in my current research, I'm starting to think more about the public policy aspect of social care and I only have some really early thoughts on this stuff.
But something that I feel relatively confident, it would be good to change right now and that we could do relatively quickly concerns the status of people living with dementia under the law. So one of the things that's really interesting about the Equality Act, which for international listeners is this kind of composite piece of legislation that governs anti-discrimination legislation in the United Kingdom, is that the section on disability rights it name checks in the explanatory notes, like a few different conditions, but not many. And so most of the decisions about whether or not a particular disability counts for the purposes of the Equality Act have been established through case law.
Now that might not look like a problem on its face, but at the moment, it's the case that there has been no case law establishing that dementia counts as a disability for the purposes of the Equality Act.
[00:31:29] Emily McTernan: That's fascinating. That surprises me.
[00:31:31] Matilda Carter: Well, I, I mean, it surprised me at first, but then when you think about what would be required for that, for us to get to a case law decision about that, it starts to become less surprising, right? So, you know, a lot of this anti-discrimination case law arises out of workplace tribunals.
Now if you're someone living with dementia in a workplace, you've got an early diagnosis of dementia or you're pursuing a diagnosis of dementia and you are living in a culture like our own, where we have this tragedy narrative about dementia where you know there are cultural images or cultural interpretations of dementia that suggests that anybody living with that condition kind of lacks insight fundamentally. You don't have to take what they say seriously, that this may be dangerous to give them any responsibility at all. I think there are some pretty strong incentives against you even declaring that you're experiencing these issues in the workplace, let alone trying to request reasonable adjustments from your employer, and if they don't provide them, let alone, taking them to a tribunal for it, right?
So I wanna be clear, I'm certain that dementia would count as a disability under the Equality Act, right? But the fact that it isn't stipulated means there's this huge barrier to people living with the early stages of dementia to advocating for their own political rights and for their own ability to access work on fair terms which I think is just one clear component of an inegalitarian set political settlement that could be changed so easily by just secondary legislation in the House of Commons. So if you ask me right now, am I certain about one thing, it would be about that.
[00:33:08] Emily McTernan: Fantastic. Thank you so much, Matilda, for coming on.
Today we've been discussing Matilda Carter's book Relating to People Living with Dementia as Equals: Towards Social Justice in Dementia Care published in 2025 with Cambridge University Press.
As ever, you'll find full details in the show notes for this episode. Next week we'll be discussing the effectiveness of activist frames combating homophobia in Zimbabwe.
Remember to make sure you don't miss out on that or other future episodes of UCL Uncovering Politics. All you need to do is subscribe. You can do so on Apple, Google Podcasts or whatever podcast provider you use. And while you are there, we'd love it if you could take a moment of your time to rate or review us too. I'm Emily McTernan. This episode was produced by Matthieu Dinh. Our theme music is written and performed by John Mann. This has been UCL Uncovering Politics.
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