Colm Cunningham: 0:12

Hello to you and welcome back to The Dementia Podcast, and to my guest Professor Mary Marshall as we continue the conversation. In part one, you heard much about the life story of Mary, which I think is really important, as we understand what led her into her passion in dementia care and into design, which will be our topic today. Now, we shared a little bit about the story of what led Mary to be the director of the world's first Dementia Center at the University of Stirling. But she was also the first person to set up a master's in dementia Studies at the University and I was one of the students who learned from her and many other people. Indeed, it led me to come to Australia as part of those studies to look at HammondCare's Meadows facility, which had been designed for people with dementia. In 2004, Mary became my boss as I became the senior field worker at the dementia center under Mary, following in the footsteps of Dr. Carl Archibald and focusing on the needs of people with dementia in acute care. But let's go right back to that first phone call where we left our last conversation in part one, about design and the help that was being asked of Mary and the newly formed dementia center. So Mary, welcome back. Tell me about that first phone call and the work of the DSDC in design.

Mary Marshall: 1:40

I mean, I should start by saying design was always a very small part of the dementia center business. For many years, it grew. But it was certainly not significant at the beginning. It's just that I was interested in it. And I realized that we knew nothing, absolutely nothing except what I picked up in Australia. The lucky thing was I headed off to the Alzheimer's disease International Conference only weeks later in Dublin, and met Richard Fleming, who like me was searching for knowledge and expertise because he was being commissioned to do the CADE units. And we also met Uriel Cohen. The theoretical history of what's called environmental gerontology, started with a guy called M. Powell Lawton, in the 70s, who was very interested in old age and dementia and his invent came up with all kinds of interesting principles about the most impaired people are the people who are in a sense of the most likely to be victims of poor design. Other people can deal with it. And so we learned a lot at that point from Uriel Cohen and we really didn't look back the pair of us in in learning about that the time Uriel Cohen was writing books with Wiseman and with Day and then along came a woman called Maggie Calkins, who's just done a superb interview for the Alzheimer's disease international focus on design well worth watching. So there was a sort of theoretical and to some extent, research based developments going on in the States but the actual practical doing it was elsewhere was Sweden, were the first people to have small group living for people with dementia in the 70s. As was Victoria and then Brian Kidd did wonderful things in Adelaide, designing hostels. So I was going back and forth to Australia at every possible opportunity to learn as much as I could about real life examples. And then we began to have them in the UK.

Colm Cunningham: 4:00

And who would you say in the UK, so stood out for you?

Mary Marshall: 4:05

Well, there as always, there's two things going on at once. One is imagine if people are developing new ways of thinking and providing so the first ever specialist nursing home for people with dementia was in Northern Ireland. But the design of it was a racetrack. And at the same time, you have imaginative architects who are doing remarkably good buildings, like Peter Phippen, did wonderful buildings for some major charitable bodies in the southwest of England,

Colm Cunningham: 4:43

"Race Tracks" are that dreadful term for a path that assists somebody with dementia who needs to walk or sometimes that negative word of wandering, and it's a continuous loop. And I guess the criticism today is it's probably not good to send somebody on a track that has no meaning or purpose or stop points. I guess racetracks are a good example of how much we've learned, though the practice of having a track was well intentioned, we now ensure that if someone with dementia wants to walk, that they have access to different areas of the building, that they can access it independently, and that there are other things that they can do and engage with. What are your thoughts on that now, Mary?

Mary Marshall: 5:25

I mean, they were outdated. As soon as they were happening, that people get, get bewildered and confused and go round and round and round, and you get a horrible kind of pacing, which is quite debilitating to people with dementia.

Colm Cunningham: 5:41

So I guess in those early days, there was a lot to learn about well intentioned, and in some ways a race track does seem logical to me or, but then you suddenly realize about the reality of it, as opposed to the concept.

Mary Marshall: 5:56

I think it's easy to lose sight of the important principle in all of this, which is about stepping into the shoes of someone with dementia and imagining what they're experiencing. You can talk highfalutin design terms and design models, but actually empathizing with what it must be like to be an older person, with diminishing sight, diminishing hearing painful joints, combined with an increasing failure to understand and make sense of what you're living in. It's not that difficult to know what is a humane and decent environment for people in that position.

Colm Cunningham: 6:38

But Mary, one of the things is that, of course, unless you gather some of the evidence or experience around it, people will view some of those things as motherhood statements, even though I 100% agree with you. So what did you do then to actually build up the knowledge and the evidence?

Mary Marshall: 6:55

Oh, well, yes, well your right Colm. And when we realized it had to be written down. The first thing we did was have been all kinds of things happened at once I was involved in a housing association, which had to do small housing units for people with dementia. And through that I met Ricky Pollock, who was an architect who was actually designing these buildings. And we commissioned him to write us our first handbook on designing for dementia. And we didn't look back after that we did two or three week long design schools every year, which are very much about people learning from each other, and mixed up clinicians and architects together, which is always the most fruitful way forward. But the important thing, which is what Uriel Cohen, and indeed, M. Powell Lawton was saying from the beginning, you've got to start with principles. You've got to start with what it is you're trying to provide. And design follows principles, it doesn't come first.

Colm Cunningham: 8:03

Right. So and that's probably important that we should share those and we'll make sure that we actually link one of the publications where you set out principles so that people can access those because I realized there's there's quite a few

Mary Marshall: 8:19

or there's a every person who has written in this field comes up with principles. Uriel Cohen has his, Richard Fleming has some wonderful ones. And all I've done in that book that you're referring to is pull a whole lot of them together. That No, people aren't saying different things one from another. They're expressing it sometimes a bit differently. But the principles are very well established.

Colm Cunningham: 8:44

So there's, of course many weird and wonderful ways that you sought to demonstrate things 1994 and the Winter Olympics in Lillehammer, if I'm saying it right in Norway as one of them.

Mary Marshall: 8:57

Yes, I was very fortunate in the early 90s, the Scottish Government had a Concordat with the Finnish government for the exchange of health expertise. And they had had it for a long time for exchanging health expertise about alcoholism. And they added in dementia for three years, and I was dispatched to Finland. And that led to fruitful links with all sorts of with Norway and with Sweden, about result coming out of that, that I was invited by the Norwegians to help them design. There's a sort of log cabin really a bungalow for people with dementia as an exemplar because they were designing a whole set of these for the Winter Olympics. They wanted to make sure that things they designed, suited all disabilities and they wanted to include dementia. So I went out to help them do this and it was extremely useful because what it was effectively was a small dwelling And there's not really been enough focus even now on how we design housing for people with dementia. The principles are the same, but it's just slightly more difficult if you've got to include things like a working kitchen. I learned a lot because the one thing about the Finnish people at least is having decided when I first went, people with dementia were cared for in truly dreadful clinical massive nursing homes. They embraced the small group home model with overwhelming vigor and in no time at all. There was units all over Finland that I was invited to look at and advise on. Wonderful, some of it clusters of bungalows in Oulu. Outstanding,

Colm Cunningham: 10:53

Mary a free download linked to this podcast is that first book from Hawker in 1998 with Stephen Judd, Peter Phippen, a book focusing on design and dementia. You featured 20 case studies demonstrating the art and science of design for those living with dementia. Tell me what the story is behind that book.

Mary Marshall: 11:15

The story of that is that I was absolutely infuriated that the Americans, I mean, it's stupid to be infuriated, because it was wonderful work. But there was always this claiming that that was where the innovation was. And Uriel Coen and Day produced this book of design exemplars, without a single European, or I think there was one Australian European building in it was a lovely and extremely useful book full of practical examples of real buildings. But I had been all over Scandinavia and knew there were things just as good. And I had knew there were some outstanding examples in Australia. So I was over in Australia to conference with Peter Phippin, and Steven Judd, and I was holding forth exactly like this. And we said, well, let's do a book. But that book was successful, in part because it led to others. Jamia Latin, then, who was working for Pezoni, then got some study leave and did a book of further examples. And he did include some American ones, but I think people learn particularly architects from real buildings with real plans and real photographs, rather than theoretical stuff.

Colm Cunningham: 12:43

And I picked up on a lot a from 1999 work. So Glasgow was the city of architecture in 1999. You did some work related to that dementia, just another disability was a project there. What was that about?

Mary Marshall: 12:59

You're quite right Colm. That was this was the city of architecture and design, and they decided to have a disability theme and chose to focus on dementia. And they recruited a little Board of which I was one, and we recruited a set of architects to produce exemplar buildings. Ricky Pollock refurbished a unit in a care home. Someone called Gareth Hoskins refurbished their unit and along state psychiatric facility. There was some prototype nursing home examples. And a set of publications came out of that, along with, oh, an international conference. I mean, it was well resourced and a really important learning experience for everyone.

Colm Cunningham: 13:49

Another important milestone was then the building of the Iris Murdoch building to be an exemplar and help teach. What did you learn from that experience?

Mary Marshall: 14:01

Well, I The thing about the Iris Murdoch building is that it's a public building. It's not a place where people live. And that presents different challenges. But again, the principles are the same. The principles of high levels of visual access, good contrast, matters of light, managing of noise. One of the lessons was that you have to educate the not just the architect, but the builders, the tradesmen, the project managers and the contractors. And I learned that from Hammond and The Meadows where you did that. The other thing you learn is you always make mistakes. Not while you learn. Yes, that's one and you have not big ones, little ones you put the wrong tops on your kitchen units. Bitter mistakes we can't believe you have made. And what I did was put speckled kitchen units because everyone had speckled kitchen units, because they don't show the dirt. And what you get is people with dementia picking at them, they. And the other thing that you learn is that there is invariably what they call Value Engineering, which means reducing the costs for some reason or other. And we had some very tricky conversations, which I'm sure true of all buildings about, we have to reduce the costs here. And I said, I'm not prepared to compromise at all on light or sound insulation, right, you can do whatever else. And I don't regret that at all. And the Iris Murdoch Building is flooded with light. And it is always quiet. But it does have or did have extremely cheap carpets, and some less than brilliant wood features. But that was that was a compromise.

Colm Cunningham: 16:05

Because as we know, you need double the level of illumination. For somebody who's older.

Mary Marshall: 16:10

Well, they went for three times, absolutely. Because we went to show the absolute very best practice and also the importance of natural light. That building is flooded with natural light through rooflights. And through big windows all the way through.

Colm Cunningham: 16:27

Now I said in the introduction that I had the privilege of coming to work there and with you. One of the things I would also say is that we have to also message Well, the point we're trying to make if we are trying to demonstrate something, because as you know, there's a whole lot of places out there that have red toilet seats, where is the point you were actually illustrating was the importance of contrast. And so nowadays, I often talk about what does the whole VISTA look like, because you want the contrast to work in this context. So the obsession with red toilet seats was never about red toilet seats. It was about the importance of the contrast of the toilet seat in this setting it was in.

Mary Marshall: 17:13

And it's important to say that Colm because one of the things people criticize endlessly about dementia design is it looks childish, because people have done very dramatic primary colors. Yeah. And I don't it, it's a real struggle to get over the doesn't need to be really strong primary colors. You need contrast. It's not just for people with dementia that aging eye and I have an increasingly aging eye needs ever more contrast to see things.

Colm Cunningham: 17:45

Well I'm pleased at the end of this, we'll come back to talk about the toilet talk book so we can make sure that we right right that with our audience today. But I guess I also wanted to come to so you're talking about the evidence of which there is much nowadays, why are people not designing places? Well, when there's so much evidence out there?

Mary Marshall: 18:06

there's two things that one is the nature of the evidence. There's a whole lot of evidence that is not just about dementia design, but is simply about aging. And it's absolutely infuriating that people don't even know that. I think people get scary when you're scared when you talk about evidence and think there's fancy research. Yeah. Whereas what there is, is we know people sight diminishes, that's just a fact. Yeah, I think that are the thing that I struggle with AI is who makes the decisions about design. And a lot of people who I'd have a friendly but very crossed dispute with a chap who said, Well, I wouldn't have that in my house. And he said, I want to design places where I feel comfortable, completely white bathrooms, this expensive nursing home company. And he didn't seem to grasp that he wasn't designing for himself, or his peers, or indeed, even for the relatives of the people who are going to be living there. He had to make somewhere that was understandable and safe and familiar for people with dementia. And that was different. Yes. So his motivation, he kept saying to me, but I want it to be as good as I would like, I would like to live here. And I think, you know, it's not always bad motivation. Sometimes it's about profit and appealing to relatives, rather than to the best interests of their people, their mothers and fathers with dementia. But it's very hard to get that over.

Colm Cunningham: 19:51

Yeah. And I think you know, you're talking about things. I I'm so happy about the world. work that was done here in at Flinders University, on the economics of small domestic familiar models. But again, why did it take us until 2016? to actually have that evidence? Why has it taken us to revisit what Richard and others were doing in terms of kitchenettes. And I have the specialist dementia care programs that are doing in many ways, some of those important things are already being done.

Mary Marshall: 20:25

I don't know Colm because of the Flinders research is wonderful, and it's thorough, but it's not the first way back in the early 90s. They were looking at the relative costs of small versus large in a London health trust. I don't know that it takes so long. I think it's that things slide backwards The moment you take your eyes off them. Yeah, I having been at this a very long time, I'm astonished to be I've just written a chapter for a nursing textbook to be writing exactly the same things I would have written in 1990. Yeah, basic stuff about we're dealing with people with impairments. And there are very simple consequences of that. M. Powell Lawton. He wrote environment and aging back in 1980. And was saying similar things. It's almost as if you have to keep at it.

Colm Cunningham: 21:24

But then that's obviously what good design is, is about making things obvious and intuitive that people can see and sense there's two other things I'd like to talk to you about is that you are the author of a recent book that we produced, and again, thankfully, is a free one, which is about toilets, "Toilet Talk", which is often a cause of great hilarity when people talk about my favorite is those white bathrooms are you seem to find all over the place? And absolutely, where is everything. I recently had somebody who was being described as challenging because he was urinating in other places. And our consultant walked in and said, when he opens the door to that bathroom, firstly, there are pads piled up there on the shelf above. So he sees it as a storeroom. And secondly, the toilets white to toilet seats, white, the walls white, the lights nice and bright. But actually, it's making it even more white. And then on the floor is pale. So it just looks like this blur, and he can't spot the toilet in there. So no wonder is voiding elsewhere. But tell me about"Toilet Talk".

Mary Marshall: 22:33

I don't think you can work in the field of aging, which I have for now an extremely long time without having to talk, incontinence, and toilet difficulties. I think that toilets are a neglected issue because they're very personal spaces. They're very private. And people don't like talking about them. But it is unless we provide understandable and usable toilets. We disabled people very fundamentally, indeed, we've just been, I think HammondCare was involved in a research project in Edinburgh, where we focused on the extent to which not having usable and accessible toilets on transport actually removes people's human right to participate. Because if you can't find and use a toilet, you can't go out. It's just as simple as that.

Colm Cunningham: 23:34

So as we consider the role of design going forward, one thing you seem to be saying is we need to keep beating the drum and not assume people know we will continue to do here at the dementia center. Absolutely. What are the other things that you need to challenges and the people who will follow on from me? In terms of the design, what do they need to be persistent, or challenge?

Mary Marshall: 24:03

One of them is the paradox that large scale is not always cheaper. I think there's a myth in the nursing home sector that doing larger units is cheaper than smaller units. And Hammond has refuted that wonderfully by actually producing data that says that's not necessarily the case. And because there is always a counter flow thing, there's a there's always a pull towards larger scale. It's cheaper, you need fewer senior staff. But what you end up with is either greater use of medication, or more troubled and distressed residents who cause more difficulties for staff. I think there is probably a need to focus more on what helps the staff Because a lot of decisions are made by staff that and actually I don't think always helpful for them, but for the reasons that they need to be able to not have exhausted colleagues and stressed colleagues, so maybe if we focus more on why is it that a really good dementia building makes life easier and pleasant for staff, we might get further. The other thing I think we need to focus on is what do these buildings these principles look like? And we are all aware of the principles in every country. There's no doubt about that. They don't differ. They don't change over time. But what do they look like for different cultural groups? Yep. And Kirsty Bennett's done some wonderful work on what they look like for Indigenous Australian communities. Yeah. And we need to ensure that the principles are there as increasingly there are developments for people with dementia in other countries. And there is a thankfully a focus on that and they in Alzheimer's disease, international materials that came out, which are really excellent.

Colm Cunningham: 26:17

Yeah, I know it was a brilliant piece of work here in refer Mary's referring to Alzheimer's disease agenda rationals 2020 reports. Which of which there were two It was so substantial. So it's an excellent resource along with those pod video recordings. So the Culkin interview, and others are well worth it. And we actually get to see our old friend, Peter Phippen as well in those recordings. Mary, as we conclude our discussion on design, I'd love to know, one absolute stroke of genius and design that you've seen over the years and one of your pet hates. And I'll definitely give a pet hate if you don't use it,

Mary Marshall: 26:56

just one that springs to mind because I was thinking about it is Kirsty Bennett's consultation with Indigenous Australians. And their view of what a building is for and a building is not where you live, it's where you go if you need protection from the sun or the rain. And I remember being in a nursing home in the wheatbelt, of Western Australia, with enormous verandas. And I said, what this is about Oh, because our people like to sleep on the veranda when it's hot. And it's and I was in a nursing home for Indigenous Australians in Kalgoorlie, which had a fire pit, which people sat around and rooms which were shared. And I said, Surely you can't have shared rooms, people will only live in small groups in shared rooms. And it's I think that's what fascinates me these days is how we translate the principles. And when you see it done well, you think, Ah, yes, that's what it's about. And the same will apply for different communities here, of course,

Colm Cunningham: 28:15

absolutely. I can't resist bringing up one that is, is a bit of a challenge. And it's probably one of my pet hates, which is murals. So while I've come to the view, and I was glad that you did a paper for us on thinking about where and when these are used, I cannot call out more loudly the fact that sometimes the murals well intentioned can actually be contributing to people's problems. So again, a gentleman referred for unwanted exiting, I think that was the behavior that was being described. And this beautiful mural of a beach. Not only was that, but the pathway to the beach, started at the foot of the door, and it was in Australia. Now of all of the nations I can think of who love their beaches, the guy was wanting to go walk down a path to the beach, and why wouldn't he but it actually was being used on a door that they didn't want him to go out. So it was having the counter effect. But suddenly everybody's time and energy being spent in trying to stop him going out became that he was the problem. Whereas actually the mural, and actually the lack of engagement and activity that was happening as well, was the problem. But that would probably be one of the ones that I get very vexed about because that started I'm saying never, never never, but very, very carefully thought about.

Mary Marshall: 29:43

So I do find my I think that's an interesting example of when technology, people get excited about technology and don't think carefully enough about this application. It became possible to do cheaply and affordably wallpaper grade. photographs, and people have gone berserk. And there's a need in that whole world to stop and think, is this really helpful for people, you get people who are terrified of woods and woodland, but the whole of the whole has got a lovely treescape along it. And I think somewhere in there is a, an issue about are you designing for individuals or for groups of people, we're looking after people who are very, very different individuals, which means we should be constantly modifying and adjusting, and watching to see what's helpful for individuals and what isn't?

Colm Cunningham: 30:48

Well, Mary that might have looked scripted as a perfect ending to this podcast in our conversation. But of course, your message comes from the heart that we have to know the individual and begin our work and always be centered in our work with a person and their story. Thank you so much for joining us on the dementia podcast. It's been a privilege to have you as our guest. Thank you also to the team for the coordination and research at the dementia centers podcast team. We've linked many helpful resources this time around including the design for dementia book that we talked about earlier, as a free download. And "talking murals", which is another product that is free from the dementia center for you to be able to use them for mural work and so very timely given the last point in our discussion, and a great report from Alzheimer's disease international in 2020. A lot of really good reports and importantly, some great videos including with Peter Phippen, who's one of those authors who wrote that first dementia design book with Mary. These are of course, able to be used for free and hope they inform your work. Thank you so much again for joining us. And most importantly, thank you to Total Construction for their sponsorship and support of these two podcasts with Mary. It's so important to have Steve and the team's passion for supporting us in our work. So thank you for making this podcast possible. And to you our audience. Thank you so much for listening, and I look forward to catching up very soon. Bye for now.