Ash de Neef: Jason. Thank you so much for joining us today on the podcast.
Jason Burton: My pleasure.
Ash de Neef: Can we start with maybe a bit about you and the work that you do?
Jason Burton: Sure. So I work for Alzheimers WA over here in Western Australia based in Perth. And my background has been over the last thirty plus years now, really working with people with dementia and their carers across a whole range of different environments. So I was a mental health nurse by training, back in the day.
I guess how I fell into this career was really – My very first experience of, dementia really, and certainly dementia care, was in a big old psychiatric hospital in the North of England. And it was just at the time when we were closing those big old Victorian institutions down. But I was actually waiting to go in the RAF surprisingly, and so I had a few months to kill until the next intake and got myself a job as a nursing assistant in this big old psychiatric hospital. My first experience was walking onto a dementia ward where, there was 18 people living with dementia on this ward and the care was pretty dire.
The environment was terrible. Really they were just being warehoused was probably the best way I could put it. They were on an anti-psychotic medication, high levels. There was very little engagement with people. And so I was distraught at this environment I’d walked into. But after a few days there, I started to get to know each individual. And as I got to know each individual person who was living there, I started to see beyond the dementia and started to see beyond the drugs and the, sedation that they were under to actually just get glimpses of a person behind all of that.
And then I started to meet the family who would come and visit them and learn a little bit more about their background. And this was a 17 year old, very wet behind the years. No idea what I was doing. But I guess I was brought up to connect with people. So that really lit the fire for me because I suddenly realised that we could actually be doing an awful lot more.
And as practitioners, really the experience of dementia is only partly related to the damage to the brain. And it’s largely related to what’s going on around the person and for the person. And so from there I decided, okay, this is something I can do. And I seem to be able to connect with these people on the ward.
And I thought, maybe this is where I should be. So I then went on to do my mental health nurse training, at the end of it decided you had to decide which area you want to work in. And I, and said to my, my nurse tutors and I was a bit of a bright young thing, they said to me, “where do you want your last placement? And where do you want to work?”
And I said, “I really want to go back to the dementia ward”. And they were like, “what, why? And that’s what you want to go back there. It’s a dead end career for nurses, you know?”
And that was the attitude.
And, they said, “you go into child and adolescent mental health or drug and alcohol. Because that’s where the research is. And that’s where, the excitement is”. And I said, “no, I think I can make the biggest difference where it’s most needed”. So, that’s kind of how I ended up in dementia care.
And then I specialised after qualifying in dementia, doing a lot of clinical practice work, particularly around diagnosis. That immediate post-diagnosis journey of people, worked on setting up some of the first services for younger onset dementia in the UK.
And then I moved to Australia 20 years ago, got fed up of the rain in Yorkshire and decided that we’d come to sunnier climes. So, found myself in West Australia 20 years ago, and found myself with Alzheimer’s WA basically, as I’m getting off the airplane. Wasn’t the plan, but sometimes these things work out.
And so for the last 20 years, I’ve worked across all of the different parts of our organisation really. And my role now is leading our, education and consultancy. Our research, our innovation – but also helping support our practice and our services and our service models and making sure that as an organisation, we truly live the person centered value system.
And then we translate that into our practice on a day-to-day basis in the work that we do. So I’ve got a very wide remit and role these days.
Ash de Neef: And going back to those early experiences in dementia care and the psychiatric hospitals, that’s a pretty stark contrast to the direction things are going now. Are there still things that you feel like a remnants from that era that need to be addressed?
Jason Burton: Yeah, absolutely. I mean, I think it’s hard sometimes because I get very frustrated. Because as I say myself and many colleagues around the world have been really trying to change from that old medical paradigm into a person centered paradigm for the last 35 years. And so we get very frustrated at times that it seems to move so slowly.
But then we have to think about how far we’ve come and we have actually come a long way. But yeah, there’s certainly a lot of stuff you don’t have to scratch the veneer to deep, to see that old paradigm of dementia is still pretty prevalent. The human rights of people living with dementia are still not recognised really .
We still take away people’s choice, autonomy. We’re very paternalistic, in our care of people living with dementia often. We still focus on the lived experience of dementia as a consequence of neurology. As opposed to the consequence of actually, living with the condition and all the things that are going on in a very complex environment for a person.
And I guess the best example of that is the way that we view behaviour of somebody living with dementia. And, that’s probably going to be my, I think my litmus test for how far we’ve come and whether we’re actually getting there is how we actually really genuinely view the behavior of somebody living with dementia. Because fundamentally there’s two things to it.
If you truly believe in person centered care one is that, people living with dementia are no different to anybody who’s living without dementia. As a human being, as a fundamental needs of a human being, we’re all the same. And yet when somebody gets dementia, we seem to stop seeing that. And we just think that people don’t need that anymore.
So if you or I, without dementia, have a really bad day, our boss has been horrible to us. Our partner is just sick to death of us because we don’t clean up after ourselves. The kids are going wild. The dog is sick, whatever it might be, we’re going to be annoyed and frustrated or anxious, or need to get out and get some fresh air just to calm ourselves down. If you do that with dementia, because you’re having a really bad day because the staff haven’t treated you well or because you bored or because you’ve got a really bad tooth ache and nobody’s doing anything about it.
And you behave in that way suddenly we label it and we say, you’ve got BPSD. We say you’ve got behavioural and psychological symptoms of dementia. No, but it’s just having a bad day. So we still have this, us and them attitude, that’s still very prevalent, really if we’re honest with ourselves.
And that’s probably one of the key things that I think when we get to a point where we change that, then we’ll be really moving in the right direction. Yeah.
Ash de Neef: It sounds like with the BPSD diagnosis there it’s an unwillingness or inability to understand what’s being communicated. And a lot of the times people who are living with dementia, struggle to express themselves in ways that people are used to interpreting.
Jason Burton: Yeah, I think, that’s a big part of it. The thing is, there’s three components to being a practitioner. In working really well with somebody living with dementia in my experience. One of those is knowledge. So you need to know, you need to have a good knowledge base around dementia about what it is, how it affects people, why it affects people, things like apraxias and agnosia. And all of that stuff that is the brain part that makes up in the type of dementia.
Because when you’re living with different types of dementia, it can be a very different experience as well. And we lump it altogether often, there’s lots and lots of different types of dementia and they all have their individuality in the way that people live with them.
So there’s a knowledge base that people need. Then there’s a skills base. And so there’s a lot of skill and it’s simplistically complex I like to say. Because it’s an art form in many ways of being with somebody. And so to be able to step out of your space and step into their space and be with them in their world and be with them in their time.
And not be judgmental in that and not want to drag them into your space and not want to manage them in any way, shape or form. All of those things are really skill based.
So you need really good communication skills, verbal and nonverbal. You need really good observational skills. You need good reminiscent skills.
You need good validation skills. All of these are skill sets that you need to be a really good practitioner with somebody living with dementia. And then the last part of it is for me is emotional intelligence -who we are as people. If you don’t have great empathy, if you don’t have great ability to leave your baggage at the door and just be who that person needs you to be in that moment, if you don’t see distress as distress and can’t then work with that.
Another really important part of it is your own resilience within emotional intelligence, because this is really hard work and it’s stressful work. And, we grieve and we, all of those things as practitioners, when we’re working with somebody living with dementia. So you need your own resilience as well.
And to be able to manage your own stress and your own grief and deal with that in a positive way. So those three areas, the skills, the knowledge, and the emotional intelligence, if we can put all of those things together, in a support worker, a nurse, an OT, a doctor, whatever it might be.
Then we’re going to have in my experience, practitioners who can really deliver top quality person centered care to somebody living with dementia. And make a real difference to their life. A lot of my work over my career has been trying to find ways to help deliver those three things so that we can build capacity to do really good person centered care.
Ash de Neef: Just circling back to something you mentioned there about the rights of people living with dementia are often not respected. Perhaps some people would argue that this happens, but this is a product of needing to get things done or needing to provide a certain amount of care for people. Is this necessarily the case or why are the rights not respected and why should they be respected?
Jason Burton: I think, okay. Let’s start with why they should be. And I guess, for me, it, again, it fundamentally comes back down to – do you see a person living with dementia as the same as you, as a human being who has the same rights as you, without dementia? And if you don’t believe that, then we’re off to a rocky start.
So if we believe that, then we’ve got to look at well, why, doesn’t it happen? And let me give you an example, a really stark one. And again, we’re into space here that’s – black and white really doesn’t exist. So we’re in shades of grey and depending on where you sit on the spectrum of this .
For somebody living with dementia, that probably the only person in Australia who can be locked up for the rest of their lives against their will with no legal protection.
Yeah. And that’s a really stark example, I guess, of the fact that we still see that as okay. Why do we still see that as okay? And as I said, I, I’m not saying that shouldn’t happen or it should happen. I just think it’s something that we really need to think about in terms of how do we protect the rights of people living with dementia?
And especially because we are in very complex space here. So you have the rights of the family and the carer main carer as well. and they’re on this journey as well. So that’s the other thing about dementia.
It is a symbiotic relationship.It’s not just affecting the person it’s affecting their main carer, their family, their friends, the community around them. So that’s why it brings this level of complexity. The carer has rights as well.
So that’s where it becomes challenging in the balance between. How do we balance so that people live with dementia’s rights are protected, that we see them as whole and full human beings and therefore they have the same rights as everybody else. But understanding that we’re in a very complex situation that is degenerative and it is changing and that brings it’s own challenges with it.
I think in aged care, we’re still a fair bit behind disability generally. And so when I look at the disability movement over the last 30 years, we tend to lag about 15 years behind in most things.
So I’m always looking to disability to see where they’re at now, because I think that’s where we’ll probably be in a few years time. And so if you look at, [the] big push in this country around restrictive practice, for example, in disability. And some really, really strong safeguarding around the rights of people with disability and restrictive practice, that’s coming in.
That’s the sort of movement that we need for older people generally, but certainly for people living with dementia as well, where their rights are recognised, protected, and enshrined in law. The funny thing is they are actually enshrined in law already. We just circumvent it and nobody challenges it is the reality.
But alongside that is the challenge that we have as both service providers. Because we have a duty of care as ethical practitioners. We don’t want to see people come to any harm. This is the challenge in it is that, we have those sort of pushes on us around that, but then we also have the push that we want to make sure that we’re protecting the rights of people living with dementia.
And somewhere in there is the balance of it all. And as I said, depending on who you are, what your service organisation culture is. What your country’s laws are, all of those things, determine where along that spectrum you sit really against risk versus dignity versus human rights.
Ash de Neef: And what do you think it would take to make dementia, move up to the level of disability? The way disability is at the moment and in the way that people with disabilities are respected.
Jason Burton: Look, and I’m not saying disability is perfect and I’m sure if you spoke to many people who have a disability, they feel stigma. They feel excluded, all of that stuff.
So don’t get me wrong it’s a spectrum, we’re on a journey to movement. But they’re certainly ahead of us. So when I look back over my 30 years, some of the biggest changes I’ve seen, which I think will bring about the biggest changes that ultimately is people living with dementia, having a voice and having a forum for that voice and actually advocating for their own rights.
And I think when we look at disability, a lot of the movement in disability has come from very strong advocates living with disability who have pushed and said “this isn’t okay. This isn’t okay for me. It wouldn’t be okay for you. So why should it be okay for me?”
And I think in the last, certainly in the last maybe five or six years, so we’re still very early, I’ve seen more and more people living with dementia, standing up and saying, “this is not what we want. We want better than this.”
And I think if anything pushes us faster, it will be those voices saying, “this is not okay. It’s not okay for you to sedate me. Because you don’t have enough staff, it’s not okay for you to lock me up in a unit for the rest of my life, because you don’t have an enabling environment.”
I think, when we start to hear those voices stronger and stronger them, we’ll see movement much quicker.
Ash de Neef: Do you think that any part of that, enabling of those voices might come through the family as well and families becoming more aware that it’s possible to speak up about these conditions?
Jason Burton: Yeah, absolutely. I mean, the carers are in a really difficult situation and I’ve been a carer as well. I cared for my grandma who had Lewy body dementia. I was the main carer for her. So I’ve been on both sides of the fence with this one. So they’re dealing with trying to do the best for their loved one trying to survive.
Yeah, being with someone with dementia is very tiring and draining. If you’re doing it really well because you’ve given so much of yourself. And so to be with somebody 24 hours a day, seven days a week, Being there to support the person, also dealing with your own grief because this person is changing, dealing with your own stress because you’re struggling to get the systems to work for you.
All of that is just immense and I just have such great admiration for families because what they do is just amazing really.
But it’s very challenging for them. And again, we just don’t have the systems and the supports and the structures that make it easier, not easy, cause it’ll never be easy, but making it easier for them.
And I think if we did, then again, the journey of the person with dementia would be different because of the journey of the family would be different.
Ash de Neef: Something that might change the experience of the carer and the person with dementia is a dementia enabled environment. You’ve done some research with professor Richard Fleming from the University of Wollongong about dementia enabled environments. What is a dementia enabled environment?
Jason Burton: Okay. So yeah. I guess what we’re talking about here is physical environment. So we’re talking about the design of buildings, physical accessibility.
The work that Richard and I did was really around, building on his immense knowledge and long experience in this space and the research that he did through his work at the University of Wollongong and Hammond care.
And what we did was really taking the research that we know exists around what makes good design for somebody with dementia, and then trying to get that information out there.
Because we were just so frustrated that despite the research being there, we were still seeing buildings that were terrible. Really, really badly designed buildings. Really basic, badly designed features in buildings.
And so we knew there was a certain level of research and evidence-based around what good practice was. But we knew that the architects and the designers and the aged care organisations were not using it. So we set about a project that was really to create a series of resources that would get the information out to the people to make good decisions, who were designing and building these environments.
And so we created a really amazing website that’s got so much information on it across a whole range of different physical environments. From aged care to hospitals, to your own home, to public buildings. And we’re working on the next section of it, which will be urban design. And so that website is really our portal for information for the world.
And it gets a huge amount of hits from all over the world, which is wonderful to see because it means the information’s getting out there. But in terms of what does it mean? I think, one of the interesting areas that started to emerge is looking at dementia as a disability.
So dementia is always had a bit of a funny placing in that sometimes it sits in mental health and sometimes it sits in neurology, and sometimes it sits in aged care. And, now we’re talking about it as a disability.
So it’s kind of always had this really strange positioning and hasn’t really had a home of its own. But I think when we put it into a disability framework and we think about the cognitive impairments and the disabilities that it causes somebody, we can then start to build buildings that help to overcome those disabilities. And the same way that we do with physical disability or visual impairment or auditory impairment.
Whatever the impact of your condition might be in your day to day life, we can do the same with dementia.
So some of the key things that happen to somebody because of cognitive change – we can look at things like spatial perception. So we know a lot of people with dementia because of certain part of the brain getting damaged, have difficulty perceiving 3d spaces.
And so their eyesight’s fine, their eyes are working fine, but the way the brain’s interpreting the actual signals is impaired. And for somebody with spacial perception problems, as an example, if you had a dark grey chair on a dark grey carpet. The person with spacial perception problems would have great difficulty in being able to define that chair within a 3d space.
So if you think when you walk up to a chair, your brain is actually interpreting its 3d location. And then you can reach out and grab the chair and sit in the chair. But if you’ve got spacial perception problems and the chair is the same colour as the background, it’s very difficult for a person to actually see the chair.
The reverse of that is sometimes the brain can misinterpret contrast. So let me give you an example, and this is why we often have some difficulties around disability access and standards. Because some of the stuff that’s good for other disabilities is actually really bad for somebody with dementia. Let me give you an example.
If we think about, say the tactile senses that we use. At thresholds on crossings of the road and things like that. So if somebody’s got visual impairment problems, they can feel the tactile sensor. I know that they’re coming to the edge where they need to stop to cross the road.
The problem is some of the guidelines suggest the better colour contrast of them helps for somebody who’s got poor eyesight problems. The problem is if you’ve got spatial perception problems, if you’ve got a black tile sensor on a light grey concrete background, and you’ve got spatial perception problem, it looks like a hole in the ground. So you’ll see somebody with spatial perception problems, walk up to it and walk around it. So there’s a good example. I guess this isn’t easy because different needs have different needs. But, that’s an example of spatial perception. And then if we look at the other impairments, like short term memory loss and the impact that can have on way-finding and being able to find your way around the building, line of sight orientation becomes really critical.
So if you can see something, someone with dementia is much more likely to use it. So we can set up our environments for really good line of sight orientation to the things that we want the person with dementia to engage with.
So there’s a whole raft of opportunities within the physical environment to do some really simple and non-expensive changes that will actually make a big impact on people’s autonomy. Peoples feeling more comfortable, feeling safe within an environment being engaged by the environment, feeling included and inclusive of the environment. There’s lots of changes we can make to do all of that for somebody living with dementia.
Ash de Neef: You mentioned urban spaces. Can you talk about a little bit of some of the ideas that would be helpful in urban spaces to make them more dementia, friendly or dementia enabling?
Jason Burton: Yeah. Sure. So again, if you think of a local space, like a Circular Quay in Sydney or an Elizabeth Quay in Perth or a Federation Square in Melbourne, these public spaces that we want to be accessible for everybody, need to put those principles of good dementia design over those spaces and look at what can we do.
That’s not going to be high cost cause nobody wants to spend more money. but will make a difference. And it can be very simple things like signage. Signage is really critical because as I said, we’re finding orientation to place is often impaired for people living with dementia.
So really good signage that uses symbols and words because some people see symbols better than they can read words. Making sure that the font is really readable, making sure there’s good contrast between the font and the background, making sure the signs are in an obvious place. Some signs I see are just like either so abstract that even without any cognitive impairment, I kind of look at it and go, “is that a men’s toilet sign or is that a peacock?”
What’s that mean? And, that they’re in an obvious place to see. So I see signs that are 16 foot in the air and I think, “ a 75 year old person who might be a slightly stooped because of their age and things, he’s never seen that sign.” Just as a simple thing, like using road signage in a different way, and an orientation signage within public spaces can make a real difference.
I think getting a balance between aesthetics and good disability design generally is always a challenge. I see a lot of things that are aesthetically beautiful, but terrible for people living with any type of disability. In fact, they’re terrible for most people, but they look beautiful.
So I think looking at a bench seat, for example, I see some beautiful, amazing aesthetically designed bench seats. But if you’re 75 and you’ve got some level of physical impairment, and you’ve got some level of cognitive impairment that bench seat doesn’t look like somewhere you want to sit.
So then we’re suddenly in a space, that’s got nowhere for me to sit and now I’m starting to feel, I really need to sit down in some way. So either I’m never going to that space again, or I’m going to fall over somewhere. Or I’m just going to find some way to pitch myself that might not be appropriate and I might fall off.
I often say to people who come to me for advice around design, I say, “let’s see if we can get some people living with dementia to come and walk through your park and they’ll tell you what works for them and what doesn’t. And then we can build on that.” So I think getting that first hand experience is just vital.
And again, I think it’s a little bit, of our paradigm of dementia. People are afraid. “Oh, we can’t include people with dementia. What if they say something silly or what if they say something really weird or what if they do something that we don’t know how to deal with?”And so there’s kind of a bit of a fear and stigma still around people living with dementia.
That means that they don’t often get asked. And my experience is even people with quite significant impairment can contribute their insights. You just need to go about it in a certain way. And we’re back to our skills again, about being able to connect with somebody, make them feel comfortable and then pose questions in a way that actually their brain can work on. Because we tend to put, yes and no questions generally, and that’s often quite difficult for somebody with dementia.
Whereas I find if you make it more conversational questions, then eventually you’ll get the bits of information that you were really hoping to get. It might take longer and it might take a bit of removing the padding, but then you’ll get the insights in there.
So there were techniques around consultation with people with dementia, particularly with more impairment, that we can use to get them involved. And having somebody walk through a space is a real eye-opener. It really is. I’ve done it a few times in Perth city, with people living with dementia, with specific types of impairments, and it’s a real eye opener to see through their eyes, what they’re seeing.
Ash de Neef: That’s definitely echoing something that we’re hearing a lot on the podcast. This move towards engaging people with dementia, a lot more. In the design process and in understanding what services and environments are going to be best for them. Instead of just consulting experts or research, but really involving the people who will live with those environments.
Jason Burton: Yeah. And again, I think this is part of that movement I was talking about really. If I think about even probably 10 years ago, certainly 15 years ago, people living with dementia were very much a passive recipient of everything. And again, it comes back to that paradigm of what do you understand and think about when you think about a person with dementia?
Most people have this stereotype in their head of this very frail, very old person in a nursing home who needs feeding and is incontinent. And that’s kind of the image that people have of somebody with dementia. But of course, it’s a spectrum. It’s a journey from the point of day of diagnosis where you were no different on that day than you were the day before.
Right through to that end stage of life. But through that journey, it’s very different. And shifting that stereotypical thinking I think is, one of the movements that I’m seeing. And people starting to go, “we can engage with people living with dementia to help us co-design this in a genuine way.” And that “we can get their insights and that they have a lot to give.”
And nobody is more of an expert in that condition than they are, And I think that’s a big shift, I think for many years, as professionals, we’re the experts and we build our careers on being the experts. And I’m seeing a slow but subtle, but getting there shift where we’re starting to take a step back as professionals and say, “you’re the experts you guide us, as opposed to the other way around.”
Now, that’s going to take a long time. but I’m seeing that movement happening and it’s a big shift. It’s a big paradigm shift.
Ash de Neef: And we were fortunate on this podcast to speak to Christine Bryden, an ambassador for Dementia Australia. Who’s, she’s got so much to say about her experience and living with dementia, and she’s written multiple books about her journey with it. And that was a really eye-opening experience for me to, to have the conversation and to understand the way in which it affects their everyday life. And how articulate she can be of the experience and the ways that she’s found to work around it and work with it.
Jason Burton: Yeah. Yeah. Christine’s an incredibly inspiring woman. And we’ve got Kate Swaffer in South Australia who likewise is an amazing advocate. And she represents people live with dementia on the world stage at places like the World Health Organisation, the United nations…and we’ve got many more.
In WA we run a dementia advocates network, and that’s for people living with dementia and family members who want to put their hand up and say, “yeah, I want to be involved. I want to have a say.”
And so that’s a growing group of people who front up to the media to tell our story or educate students, or get involved in research or help me write policy submissions.
Again, there’s just a movement happening and it’s partly generational I think. I’ve been fortunate enough to have worked with three different generations of people living with dementia now, because I’ve been around a while.
And I’ve seen subtle shifts in each demographic group in the way that they’re responding to their dementia. And I think the group that are coming through now who are, they’re 70 to 90 year olds generally. I mean, there’s obviously younger people with dementia as well, but the mass of where the most people living with dementia
Those people have had a very different life to the last generation who were the people who fought in the first and second world war that I worked with. They’re very different and they’ve had a very different life experience.
They’re much more used to choice. They’re much more used to spending their money, how they want to spend it. They’re much less passive in what works for them and what doesn’t. And it’s great to see because, we’re seeing a lot more people with dementia of that generation put their hand up and say, “yeah, I want to make a difference.
I want people to know what this is about. and I want to be a voice for this movement.”
And so I think that will just continue over the next 10 or 15 years.
Ash de Neef: Now, online, Jason, you’ve spoken out about the use of deception in caring for people living with dementia. Why is deception still such a feature in the way that some people relate to dementia and people living with it?
Jason Burton: It’s a really interesting one. And, I do have strong views on some parts of this, but they’re also tempered with, as I said, the complexity of the situation as well. I think as a fundamental human rights issue, and as a values and ethics based issue, we’ve got to keep talking about it.
Again, there’s no black and white. I’ve used deception at times in different ways. I know many practitioners and many families have – I’d have been surprised if anybody hasn’t, to be honest.So this isn’t about sugarcoating anything or being, some altruistic thing it’s about challenging ourselves to understand why we do it.
And is it okay to do it? And I don’t have answer to that. There’s much more intelligent people that would probably give different answers. But, I think it’s important that we continue the conversation around it. There are some things that I’m pretty much against, I have to say because, but that’s my personal belief and personal values base around people living with dementia.
Because I think often some of the stuff that we do that is deceptive, is in many ways, just trying to mask a shortcoming in the way that we’re doing things at the moment.
I’m not saying it’s an easy out for us as practitioners, but I think unfortunately sometimes the way our services and systems are set up, means that we create a lot of distress in people.
Rather than try and validate what’s causing that distress we use deception to try and divert people. That’s been a very common tactic for practitioners working with people with dementia. Having said that I also, as I mentioned before, I believe they art of being with somebody with dementia is to get into their world because they often are in a different world. Especially as the impairment becomes greater and their dementia journey moves on.
They are often in their world and their world makes total sense to them. And our world makes no sense to them. So I think it’s quite cruel for us to want to drag people into our world. Now I sit here and say this and, think back to my early days as a practitioner and I used to run groups for people living with dementia.
And at the time we used to believe that reality orientation was really important. And so I would have a group of 12 people with dementia who were living in a home and I’d sit around in a circle and I’d do these reality orientation sessions with them where I’d say, “what day is it today, Mary? what’s the weather doing outside?”
And so we try and ram reality into the heads of people living with dementia. And these poor people were so embarrassed and so uncomfortable and got so distressed because they couldn’t remember what day it was. And do you know what? It didn’t really matter to them. It kinda mattered to me that they knew it, but it didn’t matter to them.
And this was very early in my career when. And I didn’t know a lot better and that’s how I’d been taught, but it still felt really uncomfortable to me. And I just couldn’t wrap my head around why we thought this was a good idea.
As I got older and wiser, I came to realise – and, Dr. Al Power in the United States who’s written quite extensively about the use of medication for people living with dementia.
He’s one of my mentors and he was one of the people who have really helped me understand that, really dementia is just a change perception of the world around a person. And so if we’re going to be truly person centered and genuine practitioners, then we need to leave our world and get into theirs.
And sometimes that means deception, in a different way. “I’m not going to challenge your world, even though I know that might not be my world or the rest of everybody else’s world, but for you, it’s real. So I’m not deceiving you in a sense because for you, it’s very real.”
And so for me to try and drag you into the reality of what is really my world, It’s just, it never works in my experience. It just creates more distress and ill-being. We’re not doing what people with dementia really need us to do, which is to be with them in their space and time. So deception is, it’s a very complex area.
We could talk for hours on it. I’ve had lots of interesting ethical debates with lots of different people around the world around deception. And it stretches right through dementia care through doll therapy, fake bus stops in nursing homes, pretend villages. It stretches right through, telling people, “don’t worry about going home to your husband because, he’s fine when he died 20 years ago.” Is that okay?
It stretches through our world. And as I said, there’s no right or wrong answers. We just need to keep challenging ourselves to understand is this the best we can do for somebody living with dementia? And I think if we keep challenging ourselves with that question, the rest of it will fall into place. I hope.
Ash de Neef: What I’m hearing is that it’s not necessarily that the action of deception is a problem, but rather the underlying intentions. And instead of trying to use it as a way to make the job of the carer easier, or the cost of care, cheaper, trying to think of if it’s being used for the best interest of the care recipient at heart.
Jason Burton: And is it the best we can do? That’s the other thing, that’s the real challenge. And so if we look at doll therapy. Let’s take doll therapy, which has been contentious for my 30 year career. There’s always been debate in the journals about whether we should use doll therapy for people living with dementia.
Because, is it infantising [sic]. Is it deceptive? Are we just paving over cracks? And so that’s been a 30 year debate, as long as I’ve been around for.
And some people will say, “it works, so let’s use it.” And some people will say, “we’re only using it because we’ve created such sterile care environments where people have no opportunity to care. Where people have very little human connection, and where people have no sense of identity and meaning.”
So you get these two opposing views and somewhere in the middle of all that probably sits where it is. Is there a right or wrong answer to it? No, there isn’t. I guess the work that we do tries to look at why would we use a doll with somebody living with dementia?
What is the need there that we’re going to try and meet by giving somebody a doll? And then, is there a different way of meeting that need? Is there a better way, in fact, because the doll might be fine, but is it really deep? Is it a really deeper, meaningful experience for the person? It might be, but it might not be, it might just be very superficial because there’s nothing else.
I liken it to giving a starving man a mouldy biscuit. He’d love the mouldy biscuit because there’s nothing else. So I often wonder, the sterile care environments we create, where we take away opportunity for engagement and meaning and purpose and relationship and love and all of that stuff.
That’s so intrinsic to us as human beings, then we see distress often communicated through behaviour. And then we either use medication, or we use things like dolls. And I think if we step back to look at that environment we’ve created both as a social environment and the physical environment, and we did that differently. Would we need those things at the end of it?
So for me, that’s probably the another piece of my career as work is trying to understand that and then trying to build our environments at Alzheimer’s WA to really nurture people when they come to us, to really enhance wellbeing.
I’m looking at those demands of human need and wellbeing and then try and make sure that our physical environment supports that. But more importantly, our culture of care, our staff expertise, all of that stuff, creates this environment where people’s needs are met in a really genuine, true way.
Then maybe we don’t need to bring in these therapies and these responses to deal with the problems when that’s not there. So, it’s a long and complex, space. I’m not saying doll therapy is bad and you should never use it. I’m not saying doll therapy is good and use it for everybody.
I’m just saying, think about why we use it. And then look, if there’s a more meaningful way of doing it. And I’m seeing really great stuff happening around the world. Here in Perth, we’ve got a nursing home being built at the moment that’s going to have a childcare center, slap bang in the middle of it.
Yeah, I get the sense they probably won’t need doll therapy in that nursing home because they’re going to have daily interactions with real children. I’ll give you probably one of the moments that sort of started to sway me a certain way very quickly. I’ll tell you the story of a lady who educated me.
She was a lady from Poland who came to one of our houses for the day, two or three times a week. And she didn’t speak any English, and I didn’t speak any Polish, but we had great conversations together as you often do when you can get into a space with somebody. And she used to love her doll.
And so she had a doll and she would strip the doll and braid the doll’s hair and sing to the doll in Polish. And we thought, you know, maybe she’s seen it as her own child, or she was always a very nurturing person around children. And so that went on and that was fine. And she seemed to get a lot out of this doll.
And then one day one of the staff brought a new dog that they’d got. So they’ve got this little Bijon-Frise, white, fluffy puppy, and then I have the puppy in my hand and I went to see this lady. And she looked at me and she had the doll in her hand and she looked at me and she smiled and their eyes lit up when she saw the dog.
And I sort of motion to say, would you like to hold the dog? And she took the doll and she just dropped it on the floor and she took the dog. And then spent the next hour with this dog, just face alight. it just made me really think that we just assumed that she’d seen this doll as a real baby.
And that’s why she was nurturing it. But clearly she wouldn’t have done that to it if she’d seen it as a real baby. You know, we’ve gotta be really careful in what we assume, I think. And just try and find better ways of doing it in the future. And we’ll just keep evolving and getting better at this
Ash de Neef: Yeah, fantastic. Jason. We’ve covered so much today. We’re pretty much out of time. Is there anything you wanted to talk about before we go?
Jason Burton: Not really. Just that, whilst I’m frustrated at the slowness of change, I also have great hope. I think this is one of the most exciting times for dementia care, people living with dementia, the whole movement in Australia. I think we’ve got an amazing opportunity here. We’ve got the Royal Commission that’s been really painful as a practitioner to see the Royal Commission.
I think it’s been really painful to hear the stories, but it’s cast a light on just what we need to improve. I think the way funding is going with consumer directed care means that people are going to be much more empowered. To have the services that they really want and they really need.
And that’s very exciting. And I think, we’ll get rid of BPSD one day – I’m sure. We’ll start to really understand the human condition of dementia. We’ll build our environments that really support that.
The strength of, aged care generally and especially dementia care is the staff. They’re wonderful, caring, amazing people. We just need to give them the right organisational culture, the right care models, the right care environments and let them do their stuff.
And the lives of people living with dementia will be very different. So I have great hope for the future. Yeah, I’ve got a few more years left in me yet to keep banging the drum.
I’m always inspired by people living with dementia and family carers, and they’re the ones that keep my flame burning bright. And, yeah, I’m sure we’ll just keep moving forward, which is what we need to do.
Ash de Neef: Fantastic. Thank you so much for your time today, Jason.
Jason Burton: My pleasure. Thank you.