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Dementia is not just a leading cause of death in this country, it is also a condition that demands a rethink. One town on the south coast is doing just that.
For number three in our series on living differently, we have to venture into the world of dementia. Don’t worry, it is not going to be scary. No, let me rephrase that: first I have to put the wind up you, then we can focus on some solutions. So here we go: in Australia, dementia is the second leading cause of death. For women, it is even the first one. There are more than 425,000 people who live with dementia now. In 2025, there will be 540,000. In 2056, 1.1. million. Worldwide, 50 million people have to deal with its consequences and in 2056 that will be 131.5 million. Most of us see dementia as a death sentence. A long, slow, torturous one, where we will lose our mind before we have to give up our body. Nothing but sadness and loss from the moment of diagnosis, only decline and withdrawal from the world.
Well, this portrayal needs a bit of updating. And the people leading the charge are those who are living with the disease. What they tell us is that although they’ve got some problems, the world does too. And while dementia can’t be changed, the world can. So why don’t we get cracking? That is exactly what happened in a small town on the south coast of NSW. On the initiative of Dementia Australia and Lyn Phillipson, dementia research fellow at the University of Wollongong, a pilot project was set up in Kiama in 2014. The aim was to see if it would be possible to turn the town into a dementia-friendly one, following encouraging examples abroad. And (spoiler-alert), the answer is yes. So let’s listen how they did that.
“The dementia-friendly movement took off in the rest of the world, but there was really nothing happening in Australia. Then I was contacted by Dementia Australia, who wanted to develop a pilot program to see what could be done here. Kiama was one of the first towns that came to mind. We had limited resources, so a small-ish community seemed like a good idea. And Kiama had an active council that was interested in how they could turn their town into a healthier environment. They had a strong history of community participation and presented themselves as age-friendly. They had to, because they had an older population. Another good thing was that the general manager of the council also ran the –then only– aged care facility in town. We were hoping that this would mean that any conclusions that would come out of the research could be implemented straight away.
We found that a lot of people with dementia wanted to say to the world: just because I make a mistake once in a while, doesn’t mean I don’t want to participate.
“From the start, I was adamant that we had to include people with dementia themselves. Or as it is called these days: ‘nothing about us without us’. Only if we knew what it was like to live in Kiama would we be able to change it for the better. So we started interviewing people with dementia, and their carers and family, if they had them. And we involved the broader community, both the broader dementia community and the one in Kiama itself. We established a Dementia Advisory Group, made up by people with dementia. So we didn’t only listen, we also involved them in the governance of the project. The first thing they told us was that there was a lack of understanding in the community about dementia, and that this was a problem. They felt they were being stigmatised. By others, but also by themselves. Often they felt embarrassed and ashamed about their diagnosis, and a lot of the time health practitioners had told them that this was the end of the road for them. ‘Go home and get your affairs in order’, that kind of message. Nobody was helping them live a good life, there was only doom and gloom.
“That was a problem, because many of them had started to understand that dementia is a long-term illness. From diagnosis to the end can take ten years or more. And of course, in the advanced stage of the illness people need a lot of care. But before that, most people live independently, and are trying to adapt. That was the story they were telling us: we are still here, we only need some understanding and some help to adjust. We found out there are support groups for carers, but not for people with dementia themselves, and that a lot of people with dementia wanted to say to the world, the people in their choirs or walking groups or at work: just because I make a mistake once in a while, doesn’t mean I don’t want to participate.
“So first we addressed the information and education part. We asked people with dementia to deliver programs to the community, explaining what dementia was and how people could deal with it. They were the experts, so that made complete sense to me. Although this was the first time it happened. People with dementia had never been asked to participate in the planning of facilities, or consulted in how to build or organise a town better. But once we started listening, it was clear that there were a lot of practical things we could do. Some problems were around inadequate signage, confusion around pedestrian crossings, bad access to public transport. Mostly they were easily solved. Then we started engaging businesses, libraries, the community college, the Business Chamber, to see what they could do. The message was that dementia was everybody’s ‘problem’.
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“So, Dementia Australia, in close communication with the people themselves, developed a Dementia-Friendly Business Toolkit. First of all, we asked shops to train their staff. Talk to them about dementia and about how they can assist customers with dementia better. We also wanted them to look at their physical environment. Signs, access, the ability to find the things customers were looking for in the shop. People with dementia told them that reflective surfaces were a problem, that it would be nice if the information desk was visible from the moment you came into the place, that it would also be good if there was staff willing and able to help them find their way. There were also issues with noise and smells. People think that dementia only influences your memory, but it is a brain disease that wreaks havoc on your vision, your ability to estimate distance, your balance, the way you hear sound. Carpets needed to be changed, because patterns can be really confusing. What looks like stripes to us can look like a hole to somebody with dementia. Doors had to be different in colour from their surroundings, so people could recognise them as doors.
“And then there were, of course, the forms and processes. All the paperwork you have to fill in, the boxes to tick. Were they simple enough so anybody could deal with them? Something else was public transport. None of the bus stops in Kiama had names, or even numbers. So people got lost all the time. That is now changing. Then we did some training with the taxi-drivers, to help them recognise the signs and symptoms of dementia, and to keep talking about the price, and where they were, and how long the trip would still take. All in all, we were trying to be more enabling instead of disabling. We all know how difficult it is these days to use a toilet in a shopping centre. Often you can’t flush anymore, and there are no taps next to the sink. There is nothing that is familiar. That is annoying for us, but a real problem for somebody with dementia. If they don’t recognise something, they can’t use it. That is why we are now replacing new mixing taps with separate ones for hot and cold, with clear colours on them, so everybody knows how they work. If doors are the problem, we put a sign above them or take them away altogether. In libraries it can be very helpful to make some more space between rows, or lower the height of the helpdesk so people can see there is somebody behind it. What was also seen as difficult were the new payment devices in shops. There is no texture, no buttons, no instructions, the screens are reflective, and they are all different too.
What I have seen of the applications is that they don’t all come from small communities like Kiama. That, of course, is the next step. What do we do in Sydney, or Brisbane, or Melbourne?
“So we were thinking about social, physical and organisational environments and what we could improve to help people with dementia and, through them, make life a little easier for all of us, because what is good for them would create more liveable spaces for everybody. At the moment we are in the process of writing a plan about the development of cities and what can and should happen there to future-proof them against the dementia-wave that is coming. Because doing this in a small town like Kiama is fine, but how do you make it happen in Sydney? To answer that, we looked at what Kiama taught us, for instance, that a village centre, grid-like road structures and clear walking paths made a massive difference to people. So we are saying to the planners: don’t build these mega-suburbs, but think about them as clusters of villages. We now know what an ideal community looks like. It is all about scale. And within a big building, or a big city, you can minimise the scale. At the moment, newer aged-care facilities are already doing that. They’ve got 200 beds, but cluster them in small bunches of 16 or 20, with their own kitchens, gardens and facilities. This way people feel they belong, they feel safe and can find their way much easier. Human scale, even in the context of big development, is possible. You just have to accept it as a principle, the principle.
“From Kiama we developed an auditing tool for public buildings that is being used internationally now. It is a checklist to figure out whether a building is dementia-friendly or not. Of course, we would prefer people use it before they build something, but even afterwards there is a lot that can be done. We would like this to be mandatory one day, but it isn’t yet. That is where we need people, to advocate and demand change. What is being taken up more and more is our model of participatory research. You have to include people with dementia themselves, you can’t do it top-down. On the back of Kiama, the Department of Health has funded a national dementia-friendly strategy and communities all around Australia can now access funding, support and education to do something similar. What I have seen of the applications is that they don’t all come from small communities like Kiama. That, of course, is the next step. What do we do in Sydney, or Brisbane, or Melbourne? Part of that answer lies in small things. Virtual communities where people can support each other. Dementia-friendly cinemas or even film-choices, with movies from the era when people were in their prime. Programs in art galleries, in music venues.
“There is so much we can do about dementia. And it isn’t just about improving diet, exercise and medication. It is also about social stimulation, taking them seriously, involving them in their community. Then their cognition and their memory improves, and they feel better. Things are changing nationally. But still: how do you do it in Redfern, or Blacktown? Basically the same way as we’ve done it in Kiama, I would say. Get a group of people together who want change. Ask people with dementia what the problems are. Map your assets: find out what routes people walk, for instance, and which areas they avoid and why. Use people’s social networks. Go to the businesses and local governments involved and ask them for help. The dementia-friendly principles are the same wherever you are. And even Redfern consists of a whole lot of little villages you can tackle that way. Try it out. And if you need assistance, ask for it.”