David Cummins: G'day and welcome to the AHDC podcast series, Health Design on the Go. I'm your host, David Cummins, and today we're speaking to Professor Claire Craig, who is a Professor of Design and Creative Practice in health. Professor Claire is a Senior Lecturer and Researcher at Sheffield Hallam University in the UK.

She has written several articles on the topic of dementia whilst was also managing to find time to co-write several books, one of which I found particularly interesting called 'Creativity and Communication in Persons With Dementia'. We welcome Professor Claire here today to our podcast as part of our Mental Health Week, and look forward to hearing all about dementia and what we can do in the world of health design.

Welcome, professor Claire. Thank you for your time to be here.

Claire Craig: David, thank you so much for inviting me. It's wonderful.

David Cummins: It's good to finally catch up with you and I have to really make sure that everyone does know you're not just a Professor, you're a Professor x4, which is basically that the head of the army of professorship in the world of dementia, I imagine it's a very, very impressive title.

Claire Craig: Wonderful, and as I don't often use it David.

David Cummins: It's very impressive because I've been reading your articles recently and certainly looked at that book and I really enjoyed it. because I used to work in aged care in a Dementia ward and some of the things that you're talking about is just so obvious, but also some of the things that talk about are so innovative.

What drew you to be such a passionate defender and pioneer in the world of dementia, especially in health care?

Claire Craig: It's really interesting, so I began my journey working alongside people living with dementia about 30 years ago. And I trained originally as an occupational therapist and the very first encounter that I had on my very first placement on day one of my course was on ward for people living with dementia.

And when I started, people lived in long-term care with very little stimulation and I arrived on the ward and at that time, there was a real negativity around what people understand about who people living with dementia were and what living with dementia meant.

And so it wasn't a place that very many people wanted to work. And I arrived on the ward and I had this incredibly amazing experience of meeting people who I felt were more in touch with their emotional dimension and more open than many people that I'd ever met in my life.

And I just felt immediately drawn, almost like a coming home feeling. And at that moment, all those years ago, I decided that this was a place that I really wanted to work.

And for the last 30 years, that's exactly what I've done and, people with dementia have really made me into who I am now. So it's been completely reciprocal and an absolutely extraordinary experience.

David Cummins: And what an amazing journey, especially in the last 30 years because education of dementia care, especially in the world of health design pretty much has only changed because of people like you, because the research I've done when I was at uni 20 years ago, it just didn't exist.

Claire Craig: Completely. The landscape has changed beyond recognition, and that when I started, there was such a prevailing negativity around what a diagnosis meant that people didn't really look.

And didn't really see or really think about who the individuals were that they're working alongside because there was so much stigma and real notions about what dementia was and who people with dementia were.

And that design has played really important part in demonstrating that actually, if people are given those opportunities and we create environments and spaces and places that promote stimulation, support people in their experiences of living with dementia that actually people can continue to achieve and to develop and to thrive in the midst of really significant disability.

So there has been a really significant shift. When I started on the notes, it would say, "not for rehabilitation" if you had dementia. And that I was really immediately shocked by that. And I remember the very first thing that I did, I noticed that people were spending about maybe 18, 19 hours on bedrest, which comprised of almost living in a white coffin.

So literally you had two white cot sides, either side, no stimulation. And then there was a real question about why people were responding in certain way as well. The first thing that I did was I hand sewed, basically covers for these cot sides as they were, and and created really stimulating images and pictures.

And suddenly staff noticed that people responding more and moving more and then that almost gave people hope that maybe there's something else that was happening. And then as a consequence of that, that then fed into people thinking and maybe doing things differently.

From that moment onwards, I just knew that design was integral, absolutely integral not only to the experiences of people having dementia, but enabling people not with dementia. People who are caring for people to have a very different perception about what could be achieved and who people were.

And that became really my life mission, just to challenge those preconceptions.

David Cummins: It's amazing because I was a physio in dementia care and certainly as a student (with no identifying hospital when I say this), the common treatment would be to put them in a seatbelt to make sure that they didn't move because there was a risk of a fracture, well there's plenty more risks associated with keeping someone in a seatbelt in a chair for 12, 14, 15 hours a day.

So luckily over time, as I continued as a physio, that was taken away, which is great because it was it was awful. But then a lot of people with dementia are just so happy to be walking and be out in nature. So even in that short period of time we did see improvements.

What would be some of the biggest challenges and opportunities and risks associated with your journey for the last 30 years?

Claire Craig: I guess that.. and again, it's really interesting that you're in Australia ...and again, the other really big shift that occurred was because people like Christine Bryden, 'the voice of people with dementia', that that has been real extraordinary.

And changing that mindset has been such a huge part of the challenge of what I've really tried to do and.. The difficulties.... I mean, I've spoken at conferences where people have basically said, "we don't believe that people with dementia can do that". Working with John Killick, looking at the role of creativity, poetry.

The profound statements that people living with dementia actually make when you hear, and it's really interesting. But that questioning from the medical profession at times of, "well, actually, does this person really have dementia"? So a big part of it has been the attitudinal shifts and changes and happily, we're in a completely different place now, certainly in the United Kingdom and I guess, hopefully in Australia.

I do think that that is a really significant barrier. Other challenges that we currently face, I mean, Covid was a really difficult time for individuals. Again, we know that people lose their skills incredibly quickly, and that notion of being really shut down during Covid not having stimulation, existing services not been available was a real challenge.

Again, we responded, we created a web platform called 'Connecting People, Connecting Support' that enabled people to continue to find ways and engage and we created structures for family members to really look at ways of bringing in, and using creative opportunities in the home during that time.

Again, we're going to be seeing quite a lot of the impact of that now for a few years to come. But then the opportunities are so big because actually over the last 30 years things have shifted in huge amounts and we are really recognising the richness of things that we can learn from people living with dementia.

About what people with dementia are really shaping maybe how we think about living in the moment, how we might need to redress maybe what some of our priorities are and how we think more closely in terms of places we live, the environments that we inhabit.

And from a design perspective, when we design with people with dementia and really draw on their expertise and their knowledge, not only does that make it better for people with dementia, but it makes it better for everybody.

The huge movement around dementia-friendly community makes it fantastic for anybody and I really think that, again people with dementia, have helped us to maybe rethink some really fundamental elements of the way that we design environments and everyday experiences.

David Cummins: Yeah, and that's good to hear. Keeping in mind the design element of your profession, how important is design, not only to the ward, but to the intrinsic detail of a room, and you talked about interior design before, and obviously you can go to the level of detail of the carpet and the pillows and cots and all that textile benefit and even a sensory room, how important is design to people with dementia and dementia wards?

Claire Craig: Yeah, it's absolutely huge and there's a massive body of literature, which demonstrates the importance of that.

The challenge that we have a lot, in the context, people living with dementia is, lots of those disabilities are hidden. And particularly around perception, the way that people are actually reading an environment, understanding an environment, navigating an environment, the place where they sit in space.

And as a consequence of that, we have to be really mindful when we create spaces is whether that's in a hospital, on a hospital ward, or whether it's in the home or in public spaces. Really thinking about the hidden challenges that people might have in terms of understanding the role of, like materials for example.

Reflective services are really difficult for people to navigate. We understand the challenges where the foreground is the same colour as the background. It's very difficult because of some of the changes that occur during dementia for people to be able to distinguish between those facets.

But the results, when you do make changes are amazing. I remember again, something as simple as having a different colour toilet seat, for a person with dementia walking into a white bathroom with a white toilet seat and a white basin and a white base, I mean, it might look the height of luxury, but let me tell you that for somebody with really significant perceptual problems, you can't see where the toilet is.

And yet something as simple as maybe changing the colour of the toilet seat, changing the colour of the basin, enabling those things to stand out makes somebody completely, far more independent.

And that restores a huge level of dignity and I think so few people know that. And I guess my question has been why is it that maybe a very small number of health professionals and designers, well, not even designers, but maybe health professionals know that.

But that knowledge isn't passed on necessarily to designers. It's not passed on to architects who are building and designing hospitals and spaces, and it's certainly not passed on to people living dementia and their families in terms of designing their own homes.

 Design has got a really important role, and we in health who are working in design, also have a massive role in communicating these really simple changes that we can make also to future proof our homes.

So that if people do experience, not just dementia but any form of cognitive challenges as consequence, for example, a stroke or head injury, that those facets are in place and ready for individuals. So that people can continue to live a good quality of life for as long as possible.

David Cummins: Yeah. I must admit, I didn't know that one and I thought I knew a lot... so even though I'm leaning something in this one, which is the whole point of the podcast, but why is it that some people don't know that. I know you've written a few articles about 'Policy for Change' and I know you do a lot of work with Scotland Government for Health and a lot of other governments.

So how important is it to make sure that government policy is part of that change. What are those principles to try and bring it forward?

Claire Craig: Government policy is really important. We've done a really big piece of work with Scottish Government and with the Alzheimer's Society in Scotland and with the lead for Allied Health, Elaine Hunter and that work... again, about 20 years ago, I've been doing this for a long time.

So about 20 years ago, I asked that question about why is it that, often we work with people at point of crisis when we know that people can get along really well, but then there are these key touch points and that point of crisis often ends up with people ending up in hospital and then ultimately in care.

And my question was, suppose we started working with people at a really beginning of their dementia journey, giving them design thinking skills, providing solutions, helping people to redesign their environment, thinking about ways that we could redesign communication, building creativity, and meaningfulness right from day one.

And then maybe as a person's progression through dementia develops that some of those skills are retained or that at least people can start to future plan. And that program was called 'Journey Through Dementia' and as I say, we started that research about 20 years ago. Brilliantly, it Was incredibly successful.

And as a consequence of that, and through the work that Elaine's doing, it then formed part of the dementia strategy and dementia policy, which then gave the green light to occupational therapists working in health services in Scotland, in the Health Boards to actually have that as part of their remit of opportunities that they could offer patients coming into their services.

So it's really important to operate at that level. And what was really lovely about that whole relationship is, it works really well because obviously.. I offered the research dimension, Elaine brings the policy perspective and she's a fantastic promoter, and working nationally with all of the allied health professionals across Scotland.

And then we have amazing service leaders at Kate Lawson who really pioneers that work and makes it work in practice. And then equally then we work with families, with people living with dementia who are advisors, and then spread the word that way.

So actually we're working at these four or five levels. So constantly it's feeding through and it becomes then part of a whole systems approach.

David Cummins: And you touched on it a few times there, but the importance of not only research, but the importance of sharing of research.

 Obviously we're in Australia, you're in the UK and I'm very familiar with your work here, but I don't know if your work does reach the likes of Southeast Asia or wherever.

Yeah. It may be Africa or even Canada, I'm not too sure, but it is important to be sharing this information and share research because dementia isn't something that just happens to people in the UK and Australia. So how important is it to get your research and to get your message out there?

Claire Craig: It's vital important and I think as well, what we focus on. Again, around dementia, there's so much element of cultural understanding. And dementia means things that are very different in different places.

And again, in some places there's no such word for dementia and in other places there's a very different understanding of what dementia is and what that means. And again we're massively always learning about that and that's the joy of doing what I do.

But for me, there's so many things that dementia still carries in terms of stigma, in terms of the unspokeness of it. And so it's enabling people to see that there is really positive research, that there are things that we can learn, but most importantly, that that knowledge is owned by everybody.

And actually, people with dementia need to own that knowledge, and health practitioners need to own that knowledge.

And so as a consequence of that, and again, I think that a real strength of design is the way that we can translate what can be really dry in terms of some of the academic papers that we might offer, to create opportunities like this, which is amazing, where we can reach a lot more people in ways that are far more accessible and that offer this opportunity to really spread the word and create positive and lasting change that is owned by the communities for whom our research is intended.

We do the work because we want to make a positive difference to quality of life and that's what makes me get out of bed every single morning, this drive to try and do something that makes a difference. And so finding ways to do that, it's absolute central.

But thinking about the medium through which we do that. Universities and research departments need to think far more creatively about the methods and methodologies that they use in communicating.

And we're definitely up for finding new ways. And hearing the voice of people living dementia who are telling us, when people need to hear it, how people need to hear it, and trying to create those opportunities to enable that to happen.

David Cummins: So if I'm a, student or if I'm a designer in the world of health design and I'm especially interested in rehabilitation or age care or even, dementia wards, what's a take home message that you would be saying, "Hey, you absolutely have to do this is something we always miss, it's basic principles and it will make a life-changing impact to people living with dimentia.

Claire Craig: So the first thing I would say is... every person that you meet living with dementia is different. And a person with dementia said to me "once you've met one person with dementia, you've met one person with dementia".

The importance is, we need to look at each person on an individual basis. What we need to do is we need to begin where the person is. Wherever you are and whatever you're doing with someone, take time to step back to pause for a second and to try and see the world through their eyes.

Try and think about the environment about where they're sitting, try and hear what they're telling you about what they're seeing and what they're experiencing, and then really pause for a moment, draw on all your amazing clinical knowledge and expertise and your design knowledge and expertise.

But most importantly, just stop and listen and pause and just be with somebody and move forwards then together. Because that the biggest challenge that we have is that often we come in with a preconception, with an idea about what we're going to do, how we're going to do it, and we forget actually that the expertise sits somewhere with that individual.

And that person is the beginning and the end, but they're incredibly the starting point. And what we're not very good in busy, busy, busy services is to give people time and space. Find an environment that's quiet, that's peaceful, where somebody can feel relaxed.

Because again, we know that stress causes people's memory and cognition to be compromised. Really think carefully about what those encounters are going to be and design each encounter to really maximise the opportunity to enable that person to get the most out of the encounter that you're going to have with them.

And remember that you are human too. And you'll bring a lot of things with you also. I always say to my students when I'm teaching design, " You bring yourself. You're not just going to bring this abstract knowledge, but you as a person are an incredibly valuable and important part of this equation. So bring yourself into that moment too".

David Cummins: Yeah. That's beautiful.

Beautiful words and good advice. I know we're going over time, but it's too interesting an interview to stop on time. I am a bit concerned about the next seven to 10 years where the aging population is basically going to double. And obviously with that brings a lot more incidence of dementia.

How concerned are you, and what can we do as designers to help prepare for that more noting that the incidence of dementia is most likely going to increase over time. And we are running outta spaces, running outta beds, and we are running outta staff.

And we're on a trajectory of disaster if we don't start putting some strong systems in place, whether that be government policies and so forth, or into Artificial Intelligence and digital control. What advice do you have for the designers designing for the future, which are pretty much in planning now, basically?

Claire Craig: It's a great question and it's a really important question to ask. I'm going to approach it very briefly in on two levels.

The first level is that's some really powerful and important research that might not serve the next 10 years, but will certainly serve the next 30, 40 years if you like.

So there's a lot of research at the moment around brain health that saying actually there are lots of things that we can do at a really early point throughout the life course that can really decrease the instance of dementia, right from childhood that we can massively take those opportunities and make change.

And that's really, really important and design's got a huge role to play in that in terms of communicating those messages, in terms of understanding those messages, in terms of thinking about broader environment. So I'd say that there's a body of work that's happening there, but for this current generation and certainly the next decade, and I might very well fall within that. So I'm making sure it's going to be good.

I would say, what I love about creativity and design is that often functions best at a point of crisis, where you really need creative, different thinking. And what I'd say is that the thinking that we've got at the moment, the way that we are thinking about dementia, thinking about where people with dementia are cared for, we are thinking about who people with dementia are absolutely needs to shift and change.

And that needs a radical rethink. And I know that you had your Royal Commission around Age of Care and I know that that has been a really significant part of what you are looking at. But we've got to really think carefully about..

Again, we are still putting people with dementia in boxes, we're still not enabling people to take simple steps to enable people to actually live really well. We're not thinking about the way that we empower people living with dementia or an early point in their dementia journey to actually do something to maximise function, to maximise the quality of life that people are experiencing.

And so what I would say is that we need to use design thinking, share these design thinking skills and really focus on communities and environments because that's where people are living. There's a massive movement around compassionate communities, which is saying, actually for a long time we've medicalised real significant issues.

And in some ways we've medicalised. We're saying that's the remit of the hospital or the care home. What compassionate communities and compassionate cities are saying is actually, let's look at the whole community. Let's look at the whole environment. Let's look at building these social networks that massively support the way that people function.

And it's through that, that we will maximise quality of life and cognitive functioning and Slow down those processes of crisis because people with dementia live well. It's just that these pinch points that people actually then have these crises.

If we can prepare people for that, then actually we can do something about it but we absolutely need to shift this really passive view and the way that we're thinking about dementia. And design can do that, and design can do that on scale.

David Cummins: Yeah, very good advice and it certainly inspired me. My brain's ticking with some of the stuff we can do on some of our hospitals because a lot of planning is happening now for the next seven to 10 years so it's a good challenge for us all to take up.

I just wanted to say thank you so much for your time. Your research is literally world famous. You are a multi-time Professor. Without people like you, we would still be probably 30 years behind in our knowledge and research with the world of dementia.

It's absolutely a pleasure to meet you and I've tremendously enjoyed our time. It's been well worth going over time because it's such an important topic and I have a strong feeling we'll be touching base again in the future as well. So thank you so much.

Claire Craig: I would love that. Thank you so much again for the opportunity.

Wonderful.

David Cummins: You have been listening to the Australian Health Design Council podcast series, Health Design on the Go. If you'd like to learn more about the AHDC, please connect with us on our website or LinkedIn.

Thank you for listening.