Dementia, Equality, and the Future of Social Care
This year, Dementia Action Week runs from May 18–24. Throughout the month, we'll be discussing dementia and the ethics of care on the blog. In our first post, Luke Brunning sits down with Matilda Carter, Lecturer in Applied Ethics at IDEA: The Ethics Centre, to discuss her latest book, Relating to People Living with Dementia as Equals (Cambridge University Press), as well as how her former career in adult social care has shaped her philosophical research.
If you'd like to learn more about Matilda's work, you're welcome to register here for the full-day workshop on her book on May 14. The event will include talks from Emily McTernan (UCL), Costanza Porro (Lancaster), Danielle Bromwich (Leeds), and Andrew Stanners (Leeds/NHS).
Luke Brunning: Thank you for joining me, Matilda. I've heard you've recently published a book. Can you tell me what it's called?
Matilda Carter: Yeah. It's called Relating to People Living with Dementia as Equals.
LB: Fantastic. So, I can gather from the title it's about dementia and the status of people with dementia in our society. Can you say a bit more about the argument and what you were trying to show?
MC: Yeah. So, what I was interested in was thinking about dementia as a social and political issue. There’s an awful lot of work that’s been done on the neurobiology, the neuroscience of dementia. There’s work that’s been done on dementia as a health issue, as a public health issue. But I felt that there was a gap, especially in the philosophical literature, around thinking about people living with dementia and their entitlements as members of our society, and whether or not we’re complying with our obligations towards them in the way we deliver social care, in the way we structure care services, in the way we structure our communities more broadly.
So I wanted to bring this relational egalitarian point of view, which is the point of view that says what matters for equality is that we relate to one another as equals. I wanted to apply this to the social and political position of people living with dementia to see whether we are relating to people living with dementia as equals and what we can do about it if we’re not. And we are not.
LB: So, can you maybe say a little bit more about the ways in which we’re not relating to people with dementia as equals?
MC: Yeah. Quite a lot of the work I do in the book is inspired by my time working as a carer for members of this group, which I did over about 10 years, mostly part-time while supporting my studies, but then a few years where it was my full-time job. It was an eye-opening experience to be in that role and to realise just how much discretionary power you have as a carer that’s given to you, at the same time as you are restrained by the norms of social care practices such that you can only really use that discretionary power in at best suboptimal and at worst actively oppressive ways.
You’re put in positions where you only have about 15 minutes to rush someone through a care intervention. One of the things I say in the book is that I think people living with dementia, for all sorts of reasons to do with the etiology of the condition, have a general interest in being free to try to meet their own vital needs if they’re able to do so. That interest is not really respected in care services because it takes a long time to indirectly encourage somebody, remind them, shape their environment so that they’re more likely to be able to get through that task to meet that need. It takes much too much time in a system where we prioritise speed and efficiency and getting things done quickly.
Quite a lot of what I’m talking about is in social care, but I’m also interested in substitute decision-making, and I’m also interested in representations of people living with dementia in the media and in society more broadly.
LB: Would it be fair to say we need to change all of those aspects to allow people living with dementia to relate as equals with other people in society and their caregivers, or are there certain aspects that are more important than others?
MC: I think the thing that we need to address most urgently is the care aspect of all of this. All people living with dementia are going to interact with social care services should they live long enough to need them, and we just haven’t set them up in a way in which we can have equal relations. So these are the most pressing injustices if we want to think about priority.
But I think these flow from some broader social structures, some broader social images we have of dementia, some misconceptions we have about what dementia is. People tend to think that there’s only one kind of thing called dementia, there’s only one way it presents, they have a stereotype in their minds. People tend to adhere to what’s been called by some dementia self-advocates a kind of loss of self narrative—this idea that the key diagnostic feature of dementia is that you lose your identity over time. There are also broader social injustices in the way we think about disabled people, people with cognitive disabilities, that I think are contributing to this disregard and neglect.
LB: So the book, I’m assuming, is doing a lot of work to try and diagnose these problems. Do you have an account of how they might be solved?
MC: I have some suggestions. When I think about care, the main argument I make is about a change in approach in dementia care. When I say a change in approach, I don’t mean that people aren’t doing this stuff already, but there’s less of an emphasis on this. This is what happens in care services where people are well staffed enough or well trained enough to engage in these practices.
So I’m interested in what I call indirect first strategies. This is related to this interest that I said that people living with dementia have in being able to meet their own vital needs should they be able to do so. There’s all sorts of really interesting anecdotal evidence but also scientific research that shows that the ability of people living with dementia to exercise their functional capacities is highly dependent on the environment around them.
Quite often you’ll find working in a care service that the impediments towards people being able to meet their own needs are not internal impediments, they’re external impediments. It’s because an environment is extremely noisy and it’s causing disorientation. It’s because we aren’t making use of the tools we have to structure and design bedrooms to be more welcoming and accommodating and friendly. We aren’t trying to interpret the sorts of things that the people we’re caring for say that sound like they’re based on misconceptions.
This is a classic thing—I call it in the book elements of parallel subjectivity. Someone with dementia expresses a belief that, as far as we know, is not true or is based on a misunderstanding of the situation. But what you often find is those statements are expressing genuine needs through the tools that the person has.
These indirect strategies, these interpretive strategies, these environment-shaping strategies, what I argue in the book is that these have the best prospects of allowing us to constrain power relations over people living with dementia and allow them to make use of their agency.
LB: Can you say a little bit more about some of the philosophical influences here? You talked about relational equality. I’m hearing notes of non-domination, non-ideal theories of consent, and so on. Could you say a bit more about those influences?
MC: Yeah. I say in the book I’m taking what I take to be a standard relational egalitarian approach, which is an approach that says we need to identify these paradigm instances of intolerable relational inequalities wherever they arise and do our best to ameliorate them.
Domination is a key relational inequality that relational egalitarians want to oppose. I’m also interested in oppression. I have a chapter in the book where I justify the claim that people living with dementia should be thought of as an oppressed social group. I’m using Iris Marion Young’s model of oppression there. One of the things I argue is that they’re almost unique among oppressed social groups in that all five faces of Iris Marion Young’s account seem to apply here: powerlessness, exploitation, cultural imperialism, marginalisation, violence. You can see this throughout the way we treat members of this group in society.
LB: For people listening to this and worrying about what you’re saying, is there anything they can do—any advocacy, campaigning, practical steps—to raise this as an issue and address it?
MC: That is a good question. One of the things I say in the book is that here in the UK we have the right components for institutionally and legally supporting the social equality of people living with dementia, but there are all these ambiguities or ways in which the institutions and the laws don’t connect up that mean their status is uncertain under the law.
If I were to prioritise a political campaign around dementia, I think one of the most important things would be to clarify the status of members of this group under the Equality Act, because it’s not clear that dementia automatically counts as a disability under the Equality Act. It seems like it probably should, but while that remains an ambiguity that needs to be worked out in case law, you’ll find that people with the early stages of dementia in the workplace will be reluctant to disclose that because there is prejudice and bias. People worry about losing their jobs. Also, going through an employment tribunal is a really difficult thing to do. So trying to clarify this through legislation rather than through judicial interpretation would be really important.
In terms of what you can do at a community level, there are lots of great charities that support people living with dementia, like the Alzheimer’s Society, but there are also charities that people don’t necessarily know so much about that work on providing the tools for self-advocacy for this group. Alzheimer’s Disease International is a really important group there, and so is Dementia Alliance International.
What happens sometimes in these charities and political movements is we reinforce the idea that people living with this condition universally lack insight into their own lives by having people who don’t live with the condition advocating on their behalf and speaking on their behalf. What these self-advocacy organisations do really well is they try to centre the voices of those living with the condition and develop vehicles for political agency. So I think getting involved in those is really important too.
LB: And as a final question: it’s great that you’ve had this book published recently. Is this part of an ongoing project for you, or is this a self-contained piece of work? How do you see it fitting in with what you’re doing next?
MC: Thanks. That’s a really helpful question for me. I think of this as the first phase in a broader project looking at social care. What’s really interesting about social care is it’s something that we tend to agree is in crisis across the political spectrum, and people tend to have very strong views about it. But when you really drill down into what people think social care is and what the purpose of having it is, you find this all really vague.
I find that really interesting as a scholar, but I think it’s also interesting from a political point of view, which is there’s no other sphere of public life that’s so prominent yet so ill-defined. I think a lot of the reasons why we’re struggling to tackle the social care crisis and reform social care to become the service that its users deserve is that we haven’t agreed on what the point of it is.
So that’s what I’m focusing on right now—making this political argument about what social care is, from which a series of recommendations about how it ought to be reform should follow.
LB: I look forward to seeing those. Thank you for talking to us.
MC: Thank you.
This conversation has been lightly edited for clarity. And, if you'd like to hear more, listen to Matilda's conversation with Jim on the Ethics Untangled Podcast.
