Dementia, Human Rights and Social Care with Suzanne Cahill

Join us for a conversation with Suzanne Cahill on 'Dementia, Human Rights and Social Care', hosted by Jeremy Dixon. 

Find out more about Suzanne's upcoming book 'Human Rights in Dementia Care: A Good Practice Guide' (2025): https://uk.jkp.com/products/human-rights-in-dementia-care

Purchase 'Dementia and Human Rights' (2018) by Suzanne Cahill: https://policy.bristoluniversitypress.co.uk/dementia-and-human-rights

This podcast was recorded as part of our Spring 2025 conference 'Dementia Support in a Diverse World'. Find out more about our conference on the ExChange Wales website and sign up to the webinars in this series: 

https://www.exchangewales.org/dementia-support-in-a-diverse-world/

Transcript

Jeremy: Hello, everybody. Welcome to the Exchange Podcast. My name is Jeremy Dixon and I'm part of the ExChange program at Cardiff University. And this podcast forms part of our March conference, which is called Dementia Support in a Diverse World. So I'm really pleased to welcome Professor Suzanne Cahill today. Suzanne is an adjunct professor of social work and social policy at Trinity College.

She also holds an honorary professorship in dementia care from the University of Galway. Suzanne's got over 35 years of experience working in the field of social work and social policy, and she's worked as a practitioner, a lecturer and a researcher. So I'm really pleased to welcome you here today, Suzanne.

Suzanne: Thank you. Jeremy.  

Jeremy: Great. And yeah, just looking at your CV, it's impressively large. So I just wonder if you could maybe tell us a little bit about yourself to start off with. So can you tell us about when you started working in the field of dementia studies and, and what attracted you to this area?

Suzanne: Okay. Well, I guess, my first post in Australia when I left Ireland in the 80s was, in the University of Queensland, where I was coordinating a major longitudinal study on the cost of care on the cost of dementia care.

And that work entailed my interviewing, I think, over 200 family carers looking at the direct and indirect cost of dementia. And, in those days, people - There was this sort of therapeutic nihilism in evidence about dementia that was doom and gloom and no hope. 

And the work really made me realise that, people living with dementia and their carers needed a lot of support and, had plenty to say for themselves in terms of, the cost of care and the indirect cost of care. And I found it an exciting area and an area that really I wanted to continue working in. 

Jeremy: Okay. So obviously you've been working in the area for quite a while now. Can you tell us a little bit about, what the biggest changes are that you've noticed in the last 20 years or so? 

Suzanne: Okay. I guess there have been several major changes.

I mean, in the 80s and even the 90s, there was a huge focus on the I mean, we use the biomedical model and a huge focus on the kind of organic illness and everything about dementia was seen - Everything about the person was seen through the dementia. So, all the individual's behaviour once they were diagnosed with dementia was sort of assumed to be a symptom of dementia.

But since Tom Kitwood's work and since the probably the 90s, we've a much broader understanding of dementia and an understanding of not just the biological factors, but the social and the psychological and emotional factors that impact on the subjective experience of dementia. And our understanding has also been very much heightened by the authentic voice of people who have dementia themselves, the self-advocates.

And again, like over the years, there's been huge progress made in drug treatments, even though the earlier drugs were not disease modifying. But we are currently witnessing a new era where drugs are being developed that are actually removing some of the amyloid plaques that cause dementia. And this is an exciting time. 

So huge changes in terms of, both the authentic voice of people who have the illness and drug changes, the works of Tom Kitwood and Steve Sabbat have been hugely influential in broadening our understanding of dementia.

So the whole area has changed very significantly over the last 30 years.  

Jeremy: Okay. So let me just, dig into a couple of those points. So you mentioned about Tom Kitwood and Sabbat as well’s work. Can you just tell us about what was particularly important about their work and how it changed things?

Suzanne: Well, Kitwood really challenged the biomedical model. He argued that, there was a lot more to, dementia than just the, cognitive brain disorder. And he was one of the first, writers to describe dementia as a disability and to argue that, people with dementia were the key experts rather than the medics or the laboratory people or the health or other health service professionals.

And the challenging behaviours ought to be seen as an expression of unmet needs. They weren't necessarily - I mean, obviously, the dementia could contribute to challenging behaviours, but the environment was a very important factor, too. And, he encouraged practitioners to come to terms with their own feelings and emotions as well. Whereas in the past, practitioners were encouraged to, eschew their own emotions and feelings about dementia.

So clearly he pointed to the importance of all the other factors that impact on the subjective experience of dementia. And he was a person who had worked in dementia care settings. And so what he described as the malignant social psychology or, interactions that actually aggravated the dementia or caused excess disability. Steve Sabbat from, the US was also a very influential person, and he talked about the self and the importance of it, a bit like, Tom Kitwood with personhood, but the different, levels of selfhood and how, this was so important in terms of our interactions with people with dementia, understanding the person.

Jeremy: Sure. When you're talking about Kitwood in malignant social psychology, what does that - what was he thinking of when he said that? Was he thinking of particular types of practices as being unhelpful?  

Suzanne: Sure. He was, really referring to the way we don't treat people with dementia with respect. And, practices that actually brought out the worst in people rather than practices that actually worked with people's retained abilities.

So how people with dementia could be humiliated, how they still have the amygdala at that point of the brain that experiences emotions still working and, practices that actually, you know, as an example, the environment if a person with dementia is in a noisy environment, this can be very, very traumatic to the individual. So he was pointing to all the the other factors that impact on the individual.

Jeremy: Okay. And a little bit earlier on, you also mentioned self-advocates had changed things. So, self-advocates being people, who are living with dementia and may be speaking up on, on behalf of other people. Can you tell us a bit about who those people were and what kind of things they've done to change thinking about, living with dementia?

Suzanne: I mean, the self-advocacy movement probably started in Australia in the 90s and was led by Christine Bryden. And basically these are people who, on a day to day basis, experience the difficulties that disability that dementia causes. And started speaking out both individually and collectively through organisations like the Dementia Alliance International, lobbying for their rights and lobbying for better services for more inclusion in everyday society for, their rights really, to be treated with dignity and respect and, they've I mean, over the years they have done amazing work in informing not just the public, but health service professionals as well about what the experience of dementia is like.

Jeremy: Okay. Thank you. So I'm going to just move on to your first book. So you've written a great book called Dementia and Human Rights. And in that book, one of the key things you argue is that dementia should be seen as a disability. And that's something you mentioned a bit earlier as well. One of the things, that occurs to me is that, maybe members of the public or even practitioners might not necessarily see the connection between dementia and disability.

So why is it that some academics and some self-advocates are kind of saying that dementia should be thought about as a disability? 

Suzanne: Well, dementia, as we know, causes impairments as for example, impaired memory, impairments in new learning, impaired judgment, lack of insight, that acute sensitivity to the environment, I talked about. And these impairments, result in inabilities to do things that most of us take for granted and do everyday, like, you know, dressing ourselves appropriately or using money or driving a car.

I guess to get back to your question, people with dementia may not always want to also be regarded as having a disability, but I think there are advantages to be gained from framing dementia as a disability. One advantage is that the person can avail of disability services, as for example, home modifications, assistive technology, and legislation like, as an example, if a person has the more rare type of dementia, like a young onset, there's legislation like Employment Equality Acts that actually ensure that an employer should continue to employ the person with a mild to moderate dementia, despite their disability. 

And also, with the framing of dementia as a disability, the individual and practitioners can look to the UN convention on the Rights of Persons with disability, to, to again improve practice and lobby for better services and help, really, have a person enjoy better quality of life.

Jeremy: Sure thank you. So the UN convention on the Rights of Persons with disabilities features quite heavily in your book on dementia and human rights. I just wonder if you can tell us a little bit about what that is and how it operates, because, it's again, something that is started to be talked about, I think, by people, with dementia and dementia organisations, but maybe it hasn't filtered down, to practitioners on all occasions.

Suzanne: Okay. So it was a convention or a treaty that was established in 2006, and it took years to develop. And, the I mean, there were different groups involved in its development, but, people with a disability themselves had a huge input into its establishment. And it sets out rights that again, we all take for granted. But so often in the past, people with disabilities were denied.

So the right to participation, to community living, to independence, to dignity, to, equality, nondiscrimination, etc.. And in that book, because I frame dementia as a disability and of course, I'm not the first person to do this, but in, in really reconfiguring dementia as a disability, I argue that people have rights as in the convention, and we know that governments that have ratified the convention really must, change their legislation and must ensure that all their policies and a dementia strategy and all their regulations are in compliance with the UN convention. 

Now, the convention doesn't have a legal standing, but the European Convention on Human Rights does. And many of the rights contained in the UN convention are also in the European Convention. And people have a right to go to Strasbourg, to the European Court of Human Justice if they have grievances. And countries have a responsibility to, as I mentioned, ensure that their legislation is in compliance with the UN convention and with the European Convention on Human Rights.

So both are very important. 

Jeremy: And do you think that it has shifted, the way that countries have, dealt with people living with dementia in practice? There can sometimes be a difference between the treaties being there in theory. But it could be that, you know, people sometimes ignore it or don't do it or kind of sidestep it.

How far do you think that countries have gone with putting these things into practice?

Suzanne: I think they've gone, a long distance. And if you look at the dementia strategies across the world, many of them nowadays have a very strong rights based approach looking at equity, looking at nondiscrimination, looking at dignity. And that human rights based approach is also encapsulated in standards for nursing homes in the UK Care Commission, Quality Commission.

It's very, very strongly embedded in people's code of ethics as well. So it's nothing really new. But practitioners don't tend to think about the rights of the individual. We tend to be thinking about, needs. And so it's really building on in dementia care, a person centred care principles. And it's providing a more robust, legal and political framework to care practice.

Jeremy: Sure. I guess that brings this nicely onto your new book. So, it's not yet out, but, your new book is called A Good Practice Guide on Human Rights and Dementia. And I believe that in that book, you’re trying to give some practical tips or tools for practitioners about how to work with people living with dementia.

So can you tell us a bit about how the book is different and what the key messages are?

Suzanne: The book is different from the first one, which was more theoretical. The new book is very practice focused. And as you've mentioned, Jeremy, in it we provide a diverse range of tools for the practitioner to use to, adopt a more human rights approach in their practice. 

So we, for instance, in the opening chapter, we talk about the two conventions I referred to. But then as we progress through the journey in dementia, we use case studies. We have, questions posed for the reader. We draw on, examples from our own practice space. We, provide additional tools, like we talk about the importance of advanced care plans, of, advance care directives, of enduring power of attorney as an example, we talk about the WHO's toolkit for dementia friendly communities. 

We refer to the importance of life story books. And again, also reflect back on Sabbat's contribution to dementia care. And Kitwoods, too. So there's a whole combination of different both tools and approaches we use, providing examples of good practice and also practices that violate human rights. 

And you know, so often when we think of human rights violations, we think of macro issues. But even the smaller, more, micro issues are so important and can actually even the tone of the practitioner's voice, the absence of a knock on the door or the, sometimes, disregard for privacy rights of people, all these things can be very, very damaging for the person psychologically.

Jeremy: Sure.  

Suzanne: And in busy environments, it's so easy to, to forget about these kind of, issues. 

Jeremy: So one of the things that, you were talking about was, about the problems that might occur when practitioners are working with people. So you were saying that a lack of respect, can often occur. So what kind of things might agencies do to try and fix that?

Suzanne: Okay. I think training is so important. And, again, in this new book, if we were to draw out three major themes, one is dignity, another is training, and the third is looking at the autonomy rights of the person. So often, the person with dementia. Well, certainly historically their, their autonomy rights have been denied of them.

And there's an assumption that because their thinking may no longer be that rational, that they are incapable of engaging in any decision making. And that's so wrong because, I think with the right attitude on the part of the practitioner and the right understanding of the person, certainly if they have a more mild to moderate dementia, that person can still have some input, can value one thing over another, and has retained the ability to actually express their preferences and, have some choice in their everyday life.

And this is so important to anyone's quality of life. Being able to exercise choice and control.

Jeremy: So the follow up question to that, you were talking about the importance of choice and control and to play devil's advocate here a bit. Some people might say, well, the person I'm working with lacks capacity or they find it really difficult to make decisions. How is this approach towards human rights relevant? Isn't it just some kind of academic exercise? And, you know, how could I apply it in my practice?

Suzanne: Well, I think we need to realise as practitioners that mental capacity and equal capacity are two different issues. And that even though a person may have impaired mental capacity, they still have legal capacity.

And so this is why it's so important for us working as practitioners to work with the individual when they still have some retained, capacity to, engage in advanced decision making, to develop advanced care plans, etc., or to, establish an enduring power of attorney so that when their capacity becomes completely impaired, then their will and preference is stated. And, the family members or practitioners know what their, will and preferences. 

Jeremy: Great. Well, thanks ever so much for talking today, Suzanne. It's been really great to hear from you, and I really look forward to reading the new book.

Suzanne: Thanks indeed Jeremy.