Community and Design

Ailsa Wild: 0:09

This is the Dementia Podcast. I'm Ailsa Wild. I'm at the Wurun Senior Campus in Fitzroy. It's a brand new building that feels at once very modern, but also very Melbourne. We're in a room with big floor to ceiling windows that overlooks the city. I'm sitting with my back to them. My attention focused on the students coming through the doors. They drift in in groups of two or three. There end up being around 10 students all up. I think they're in VCE. That for anyone not in Victoria is in the age range of around 16 to 18. I'm tentative at first. What are they going to think? Are they going to want to talk? I don't want to push them. But I really want to hear what they have to say. Very quickly. There's a sense of openness and generosity in the room. I forgot how much I love teenagers. Okay, do you want to talk? Does anyone want to talk about why you think dementia might be worse than cancer?

High School Students: 1:14

I feel like with cancer, you know, I mean, it's all the time in you know, it's much more survivable. I feel like just generally. Also, you know, with dementia, you get your you lose your sense of self and your surroundings and all that sort of thing, at least with cancer, you know if you're gonna die from it, you're aware of what's going on, like generally, I think, and, you know, you can recognise your family members and all that kind of thing. Whereas with dementia, it's a lot more, I guess, probably I imagine, like isolating and lonely, that sort of thing.

Colm Cunningham: 1:47

As Ailsa was talking with the kids sharing turned into questions.

High School Students: 1:52

Do we know much about where it comes from? Does it come from different kind of things? Like do certain behaviours, like I know with other stuff, like epilepsy, which is a completely different thing. But you know, it's something that affects you mentally and physically. You know, you can get that from lots of stuff like stuff like childbirth, can, you know, trigger it. Or like, Yeah, certain like behaviours, or substance abuse early in life can trigger that stuff. But it also can be like genetic. So I was just wondering if dementia is one of those things, or if it usually comes from something? Yeah.

Ailsa Wild: 2:27

That's a great question. That's a really good question.

Colm Cunningham: 2:30

Well, dementia, as a word is an umbrella term used to describe many different types of dementia. You'll hear people most often talk about Alzheimer's disease. But when we talk about where it comes from, it depends on the type. Often there can be genetic causes. There can be family histories, there also can be environmental causes. So for example, with vascular dementia, you've got circulation problems that are cutting off areas of the brain, which means if we look after our heart, our weight, our diet, then we can really help our brain remain healthy.

High School Students: 3:05

I know like a lot of people when their family has dementia and stuff are like very loving. But I just think like, there are probably sort of, especially with like, some workers it's very difficult to like, care for someone who has dementia and like, do everything that's right for them. Because it's like, it is a lot of work. It's like, I just, I don't know, what I was like, really how to say I just feel really bad. And I feel like I wonder if there was like, if we cared for people with dementia in a different way, and like respected the things that they said more and kind of took it more seriously, because I feel like a lot of time, they're like, kind of not taken seriously anymore. Like if that could improve their experience at all? I don't know.

Ailsa Wild: 3:49

It's a really good thought. It's a really good thought. And the organisation we work with has people who live with dementia who work as dementia advocates, so they still have dementia, but they're kind of early in their diagnosis, and they are being advocates for people living with

Colm Cunningham: 4:01

I think the first thing to do is be present dementia. with the person. That means trying to get all other distractions or things that are affecting you out of the way because the person will be picking up on those things. So if you're feeling stressed, or anxious or even distracted, so put down that mobile phone, turn the screen down the other way that you're not looking at it so that you're actually paying attention to them. The second thing is to take time with your communication. So if you're saying too many things, the person's got to process all of those slow everything down a little bit, so that the person has the time and importantly, sit in front of them that they can see you make sure that light's in your face so that they can see you well and just sometimes be present with them. So it doesn't necessarily need conversation because the person may be struggling with that. It could be that you know their favourite type of music and sitting comfortably together or reading a book that or a chapter of a book that they like, or looking at some pictures and memories of their lives, and having those conversations all help them be part of being present with you.

High School Students: 5:11

You can't really ask a person with dementia, what it's like having dementia. How are you supposed to help improve their experience, like Mia was saying, if they can't tell you, you know, or if they're just not equipped, and like, they're expressing that they might want to, like, they might want to say, you know, I'm not okay, today. I don't want to get out of bed. But they might be forced to by a nurse or something like they just you know, how they're supposed to communicate?

Colm Cunningham: 5:39

This is such an important question. I'm glad that was asked. Because we do need to often if we've been doing 101 things, it's easy to just suddenly jump in and start providing care when actually the person isn't prepared for that. And quite rightly, they might well react to that negatively. A good example of that, is thinking about getting somebody up in the morning. If they've got some pain related condition, moving them before you've actually given them assistance with their pain relief, actually could mean that it's really sore for them. And they react by pushing you away or saying something that's upsetting to you. And suddenly, the whole day starts badly. So thinking about how we prepare in that context, is by providing some medication with enough time for it to work. But equally, how do we all like to start our days? A cup of tea and a cup of coffee, and a bit of a conversation about what's about to happen next, will always help that person be prepared and engaged. And an important thing that we're all in a habit of doing and I find myself doing it myself is avoid putting on a funny voice, you know, we'd suddenly change our tone, just talk to the person normally, and make sure we're calling them by the name they want to be called by. So all of those little things matter.

High School Students: 6:54

You can't ask them about their personal experience, necessarily, because they might not be able to vocalise what they're experiencing, depending on how bad it is. They're expressing that they might want to, like, they might want to say, you know, I'm not okay, today, I don't want to get a bed. But they might be forced to by a nurse or something like they just you know, how they're supposed to communicate?

Ailsa Wild: 7:15

And sometimes, that communication is through their behaviour rather than their language.

High School Students: 7:19

Yes. And it'd be really hard as well, because if they have to communicate through their behaviour, like what if they become aggressive?

Ailsa Wild: 7:26

Hey, thank you so much. I really appreciate you all kind of just bringing your vulnerabilities and your thoughtful brains to the room. It was really Yeah, I just feel grateful that you were here and that you came and chatted, thank you.

Colm Cunningham: 7:44

Community perceptions of dementia are often negative, and shaped by media and myth. Listening to the students talk about their understanding of dementia is a reflection on the community's education of dementia as a whole. Especially when you compare this knowledge of other conditions like cancer. We heard them describe dementia in general terms as an older person's disease, that it's scary

High School Students: 8:09

Yeah, I think also like my mom had cancer, but she wasn't. It didn't get, like serious and it wasn't like it wasn't really scary,

Colm Cunningham: 8:18

And freaky, isolating and lonely, where you'll lose your sense of self.

High School Students: 8:24

It's just really are harrowing, like shocking to sort of see, like just how much it affects, you know, not just physically, I mean, sorry, mentally, but also I think that dementia is pretty scary, because you're like physically. losing all your memories. And your memories are kind of like, what make you who you are. And so it's like, when you're losing, like you just forget everything. Like my Pa has dementia, and he doesn't remember anything. We have the same conversation over and over and over again. And he just deosn't remember anything. It's just so sad.

Colm Cunningham: 8:57

There's no doubts, the later stages of dementia are difficult in terms of a person's physical and emotional needs and capabilities. However, there's a significant amount we can do to support our citizens with dementia to be part of their communities and to live independently. And as dementia advances to ensure that people are involved and engaged in the care and support they receive.

Ailsa Wild: 9:24

When I think about people living with dementia in the community, I think back to Donna Lee, who I met at the International Dementia Conference, she talked with me about what she calls her"dementia family". People like her who are living with dementia that she often meets with at a local cafe.

Donna Lee: 9:44

What it is that we all are living together with the same with the same say disability they call it we all got dementia. We're doing life together and we support and encourage one, one or another, but also saying they can express really, how they are feeling how they're travelling on their journey. And they finding it hard. I think, bringing them out. And doing cafes coming out is the important, you know with other people mingling. And knowing that their support is there. Yeah, you're not alone. We're in life. We're doing it together. And we and also and it's like the we do the "Matter Forums" as well. It's like we matter.

Ailsa Wild: 10:38

Yes

Colm Cunningham: 10:39

Design of the community and care environments is just one of the ways we can make major impact on the way a person with dementia sees and senses the world and the choices they make. But if we as a community don't know anything really about dementia, how can we design for dementia? Now, you probably didn't expect me to be talking to you about kitchens, as I'm not known for my culinary skills. But the owner of the kitchen we're about to visit has a lot of features I will be putting in place when I upgrade my kitchen. Professor Mary Marshall was the director of the world's first Dementia Services Development Centre at the University of Stirling in Scotland. I was privileged to study for my MSc under Mary, and then work with her in my first job focusing on hospital care for dementia. I'm blessed today to have Mary as a friend. And this episode gave me the perfect excuse to duck over to her place for a cup of coffee. And one of our scones. Mary lives near the Dean Village on the west side of Edinburgh. And I always love looking down from the Dean Bridge at that view. We head into the beautiful kitchen and get settled around the wonderful big kitchen table filled in the middle with jam scones and all the things for my coffee as we settled down to our conversation. It's a lovely open plan design. And I can see into Mary's garden on a rare Edinburgh sunny summer day, which Ailsa assures me in our conversations does not sound warm at all. After wrestling with some technology with the mics, I get to asking Mary why she designed this space that way.

Mary Marshall: 12:20

I think some of it's because I've never had a good memory. But they started doing it systematically was when I was on the board of a housing association and they got commissioned to provide small flats for people with dementia and the director and Ricky Pollock, the architect, came round to my flat for a conversation about dementia design. And after a while they said, Let's evaluate your flat as far as dementia friendly concerns, which was a bit startling because I hadn't tidied up or anything. But anyway, they gave my kitchen an A+ for dementia design. Because absolutely everything was visible. All my pulses and frying things were in glass jars, all my pots and pans are visible. There's no drawers and no cupboards. Now, I've always liked that because I can, at a glance, see what I need to buy and where things are and can reach them quickly. Doesn't mean, it's not a tidy kitchen, but as far as I'm concerned is a very efficient kitchen.

Colm Cunningham: 13:29

So that's an interesting point. Because of course, there is an issue of people thinking that things need to be tidy and tidy can mean everything being hidden away and flush.

Mary Marshall: 13:44

Absolutely. And I remember when we had glass cupboard doors at the Iris Murdoch building, and we used to always make a point of inviting people with dementia to come and visit and indeed had training events for them and show them around and one carer said to me that is exactly will exactly solve the problem me and my husband has he's no longer able to help me in the kitchen and it's driving me mad because he keeps saying where's this where's the other but of course if I had glass doors or no doors, there wouldn't be a problem.

Colm Cunningham: 14:21

And it's these solutions simple though they may seem that can make all the difference. Now of course we're always learning and one solution for one person isn't necessarily a solution for another. Mary has a story about disregarding speckled worktops. Something most people wouldn't think twice about.

Mary Marshall: 14:39

Yes, I mean, as I always say it's all about empathy and occasionally you just don't think things through and you say let's have nice speckledy worktops so they don't show the dirt. Well, nice speckledy worktops like nice speckledy floor coverings, are very problematic for some people. And we used to show people with dementia around the building and watch them picking away at the speckles, because they thought it was dust or crumbs or litter. It was a very salutary lesson in how not to do things.

Colm Cunningham: 15:14

And this kind of thing is very common. Recently, I had a few people tell me about a relative who couldn't make a cup of tea anymore. So I gave it a go and asked, Could I have a cup of tea? and watched as he went and pulled out three traditional jars, looking at each one. One was the sugar, the other tea, and the final one had coffee in it. He pulled each one out and open the lids up to look inside. And one of the obvious problems was the words in the jars didn't contrast with the jars.

Mary Marshall: 15:47

And as in the case of my father, many people with dementia no longer have the ability to read. So yes, contrast, the big neglected issue in dementia design is fundamental. But also, different people have different impairments, and some people can't read at all. My father used to sit there reading with the newspaper upside down.

Colm Cunningham: 16:09

Right?

Mary Marshall: 16:10

Because he'd always read the newspaper but he plainly wasn't reading the newspaper.

Colm Cunningham: 16:22

Tell me, one of your focuses more recently has been about how the world outside helps people with dementia. You've been involved in informing that not least in the frustration at how toilets are designed in public spaces.

Mary Marshall: 16:38

Fortunately, there's increasing research interest in designing and public spaces, cities, neighbourhoods, and some very, very interesting research, consulting older people and people with dementia about what makes cities safe and navigable. And interestingly, why is it that some people with dementia get lost? I was at a very interesting seminar with the police about the way that people with dementia get lost and what a terrible worry that is. And what I don't think anyone had really thought about is many people with dementia can navigate their way on a familiar route, for example, to the local corner shop and back. Or around the block with a dog and back. But what throws them completely is if suddenly there are roadworks, or a very familiar landmark, like a block of flats or something is demolished. And then someone who has been independent, is suddenly unable to navigate their way back home. And what people searching for them need to understand is to walk their route, see what's happened and see what they might have done, gone straight on rather than gone left, because that particular landmark has gone. You're right, the research that we did was on the availability of toilets when you're travelling. And there's two issues one is finding them because signage is invariably either cluttered or non existent. And the second is having found them can you use them? Are they in any way understandable and straightforward, or absolutely baffling? For example, one of our researchers, the researchers were all people with dementia. One of our researchers couldn't deal with the fact that there was a mirror on the back of the door of the disabled toilet. And he had post cortical atrophy this guy. Absolutely freaked at thinking there was someone else in the toilet with him and simply couldn't use it. Yeah, that was utter chaos for the poor man and his wife.

Colm Cunningham: 19:08

Thanks for listening. Mary's four decades of learning and wisdom in dementia, continue to challenge and inspire. And once we get talking about design, there's no stopping us. But for now, that's where we'll leave it. The Dementia Podcast is produced by Joel Martin. Editing by Sally Grosvenor. Mixing and technical support for the podcast is done by Neil Blanco. Fact checking and research by Gina Pirello. Dr. Narelle Yeo manages the music team with compositions supervised by Erin McKellar, who's the composer of the dementia podcast theme and the music for this episode. Our website is dementiapodcast.com. The Dementia Podcast is a production by HammondCare's Dementia Centre.