Roundtable: Ramps for the brain, Disneyland and Antarctica
Conversations about how the built environment can assist the increasing number of people living with dementia are pressing. Guy Luscombe convened a roundtable with experts working in the field – who are all hopeful about the future but see a need to rethink the traditional approach.
“Dementia” is the collective term for several degenerative brain diseases, with Alzheimer’s disease being the most common. Of all age-related conditions, dementia is perhaps the most tragic.
It is the second leading cause of death in Australia – the leading cause among women – and 30 percent of people over 85 years currently live with it. There are about 450,000 people with dementia in Australia and, without a medical breakthrough, there could be 1,000,000 by mid-century. That’s the tragedy. The good news is that dementia is potentially curable and, for the vast majority of people living with the disease, it is manageable, with about 70 percent currently living at home (not in an institution).1
It is clear from evidence-based research that architecture and design have a direct influence on the experience of dementia patients. Architecture can’t cure dementia, but it can greatly assist people living with it. For this roundtable discussion, we assembled four people – an aged care provider, a researcher and two architects – who have all been pushing the envelope to improve the built environment for people living with dementia.
Guy Luscombe: Richard, can you give us a brief summary of how space affects people with dementia?
Richard Fleming: In general terms, people with dementia face certain issues and challenges every day; amongst them is making sense of the world, and we can create spaces that make it easy for them or more difficult. At a very basic level, things like whether they can find their way around – for a meal or to the toilet – become very important. As dementia progresses, a person becomes increasingly confused and if the environment doesn’t assist them to find these places, they can become irritable, or apathetic and depressed. It’s so much more pleasurable for all concerned when the built environment supports them in finding those things they need.
Beyond that, a building which is aesthetically pleasing, with a clearly stated vision embodied within it that says “You are here to really enjoy life and maximize your potential,” is a whole different domain of the building’s personal interface and I think that’s what we have to do. We have to start at the beginning and talk about reducing the disabilities that go with dementia. But as soon as we can, we need to guide the conversation towards helping someone to live as full a life as possible, not one just founded on being able to do the most basic things.2
GL: Jan, do you have anything to add?
Jan Golembiewski: A lot of that is my perspective too – but as an architect,
I am never happy with what’s already there, I’m always looking ahead. The concept of resident-centred care has been around for a while but is now just being understood. It means that the facilities that we provide actually have to fit the resident’s real needs for them to live a full and wholesome life. We need to encourage people to continue to do the things that they want to do and offer them those things. Rather than big dining rooms where people have to go,
[we need to] create beautiful places people want to go … where the smell of fresh bread being baked and fresh coffee being roasted is the first part of the dining experience. It encourages the need and the action, meaning that people stay healthy for as long as possible. As long as people can do things themselves, even slowly, it’s better that they do it – and when people do need help, it’s there. We can use design to enable action by creating opportunities to act that are positive. The model that I use is Disneyland: we have to keep smiles on our faces!
GL: Yes, Hans Becker from Humanitas, a Dutch aged care provider, said he was in the business of human happiness, not aged care. He even brought an elephant into one of his places, just to make it something memorable!
Natasha, as a care provider, you have a very particular vision. Can you talk about that?
Natasha Chadwick: We developed our micro-town approach on the principles of having a normal life. Many older people have disabilities, so we just treat dementia as a disability. We talk about building “ramps for the brain,” just like building physical ramps. One important way is to create inclusiveness and community. It’s really important that we re-create a community so that when someone comes into residential care, they feel included.
One of my biggest concerns is that our society is building what may be described as “aged care hotels.”
They might look very nice but they’re not the way that people live on a daily basis. Our community [at Bellmere, Queensland] is a small town with all the shops and services that mimic what people are used to. There are areas where families can continue to visit and do the things that they’ve always done. More importantly, it has small homes that form the larger community. There is a lot of unobtrusive assistance. Everything’s been built on the basis of drawing people out into the community and helping them move around. Those kinds of concepts are really important for us if we’re going to meet the future needs of people who are ageing and people who are living with dementia.
GL: And how successful has it been so far?
NC: We started the concept back in 2013 with two houses and a small community in Tasmania, and we tested everything there. It wasn’t just about a building. If you don’t
change the behaviours, you don’t get the change that’s required – so it was about everything. New Direction Bellmere opened in 2017 and it has been fantastic. We’ve got a waitlist and we’re seeing incredible outcomes for people. We don’t use any physical or chemical restraints for people that are living with dementia or cognitive impairment. Our residents are mobile; a third of our community come to the wellness centre every single day to take part in some form of activity. When I visit at 8 o’clock in the morning, there’ll be a group of people sitting in the cafe, waiting for family and friends to come and join them. It’s a thriving community, just like the communities where you and I live.
GL: Allen, I’d like to bring you into the conversation. You’ve also designed some interesting buildings that aren’t in the mould of a traditional aged care building. Can you talk about your approach?
Allen Kong: I got into designing for the elderly and people with dementia through designing for elderly people who are homeless. Homeless people have a great range of needs and so we looked at how we could provide the best environment for people with social difficulties as well as physical disabilities. We also saw that people in residential aged care are a bunch of unrelated people who happen to live close by each other. We had to create an environment that met all their physical and psychological needs and understand their previous environments, which aren’t your typical family home but still a familiar place. That was the start.
Wintringham CEO Bryan Lipmann3 and I arrived at the concept of not having any internal circulation. Bryan had the image of a farmer too old to work the farm but sitting on his verandah “overseeing” activities. This linked up with the Australian Antarctic Division’s findings that for best health and performance outcomes, the expeditioners needed to have unavoidable everyday contact with the outside. It was a very interesting parallel between Antarctic expeditioners and people living in aged care and it took a bit to get it through the health department, but that is how we came to design aged care facilities that were different to the norm. Ideas for designing for dementia were included in that mix.
GL: Yes, I was fascinated by De Hogeweyk, that very influential dementia facility in the Netherlands where people have to go outside their houses to go anywhere in that community, even when it snows. I’ve suggested that a number of times here in Australia but have always got pushback: “It’s a security risk,” “It’s the middle of the night,” “It’s freezing.”
We’ve talked about these great examples of better dementia design and there are some excellent evidence-based tools to help designers get it right.
But where do we go from here? What are the things that we can do now to improve the lives of people living with dementia from the built-environment point of view?
RF: I think both the aged care royal commission4 and COVID have shown that there are a number of challenges to be addressed – fundamental questions like who thought it was a good idea to put a lot of old people together in the first place? I think the future of aged care has to start by confronting that question and answering it in a new way. Natasha’s approach is the way we have to go. I do have a sort of hope that we are seeing the end of the era of large-scale institutional care. We’ve been thinking about this for at least the last 30 or 40 years and I hope these twin challenges would be the final nail in the coffin of large-scale institutional aged care. Because to be perfectly frank, I’ve never been happy with a large-scale old person’s place.
GL: Natasha, as a provider, do you think this is realistic? From what I understand, the funding is very limited and while the royal commission has made it very clear that funding has to improve, can we get rid of large institutional aged care?
NC: I think it’s about rethinking it, rather than just thinking that what we’ve done in the past is the way that we have to do it in the future. Rather than thinking in terms of everyone under one roof, where you’ve got 120 people living together, we created a community that still has that – but they’re living in separate, seven-bedroom houses, where they can walk straight out onto a pathway that takes them where they want to go – just like you would in your suburb.
Our vision is around normalcy for an individual – how to create that for them and is it achievable? We’ve done it with smaller houses but there’s lots of different ways. We knew that the funding was not going to be able to cover what we wanted to do and so we found another revenue stream. We did that in the hope that we could demonstrate that the outcomes were better and that governments and the community would react. And it’s pretty clear that they have.
One of the recommendations from the royal commission is to go small, to have house-based models, and so we expect to be funded appropriately. It’s like anything: if you want change, sometimes you have to find a way to make that happen without relying on the normal way. The funding was never going to do what we needed for our micro-town at New Direction. But it’s getting there now and it will in the future.
GL: Build it and they will come?
Jan, how do you see this moving forward. Is the research pointing to anything?
JG: We’ve been talking about accessible design, and even Universal Design, but the real talk now is about inclusive design. We design for everybody. But we do so by looking at their really specific needs and matching them.
GL: I think the Universal Design crowd would say that they are one and the same. But it is not just an equity thing, there are cross-benefits – ramps suit prams and trolleys as well as wheelchairs.
JG: Siri on our mobile phones is one example. It was designed for people who are blind, but it turned out to be this amazing thing that everyone uses and no one remembers that it was there for people who are blind. That’s how we should be coming to think about dementia and
aged care design: we design for everybody by addressing specific pain points.
GL: Allen, if you were going to design the ideal dementia-care building tomorrow, how would you approach it?
AK: It would depend on where it was. I live at the beach and thought it would be nice to set up a dementia-friendly place there. There are a lot of people who live in little houses and they’d probably like to have a spot somewhere close to where they’re living where they can go up the street or get food delivered. It could be anywhere but it’s going to be small-scale, part of a real town. It’s going to have features that make it easy for people to move around in. There will be some communality, so you have the social aspects of living in a group, or not, as you choose.
Spatial aspects and lighting are important, whether it’s inside or out. We designed a long verandah flanked by deciduous trees – the closeness of the trees and the seasonal change of light was fantastic! Part of the joy of having gardens is the quality of light. Lighting is mostly given by a formula, but where the light is coming from is important. That joy of spaces is something that’s often hard to get in the nuts and bolts of building aged care places, but we’ve been able to put some of our buildings together by concentrating on the joy and generosity of some aspects and toning down other parts.
GL: I wanted to finish by looking to the future. Where would we want to be in
20 or 30 years’ time? What will the built environment for people with dementia be like? Is it going to be small places?
Is it going to be people living in their homes and having stuff brought in for them? Is it going to be institutions that have a mixture of different forms of living for different sorts of people? Is it multi-generational with different ages interacting?
RF: I think there’s a difference between what I would like to see and what I think is actually going to happen. I think the future is already upon us. We can see the trends that already exist in residential care. We know that, in general, people are spending less time in residential care and that time is really the end of their life. So, we need to address that shift. Residential care will need to be more home-like for end-of-life care. But more and more people with dementia will receive care at home, so we’ve got to be thinking about how we design ordinary housing that is suitable for elderly people with dementia and generally.
GL: Yes, we haven’t even talked about the 70 percent of people with dementia who are currently living at home and what that will mean for the broader built environment. We could have another whole discussion about that! What changes do you see, Natasha?
NC: Personally, I’d also like to see more people living at home and being supported by unobtrusive oversight, monitoring and design to guide them into places and spaces. But I probably don’t feel exactly the same way as Richard. I still believe that families who are living with severe dementia just don’t know how to cope. And until we can really support families at home – through architecture and everything else that’s required, including skilled staff – I think that there’s going to be a need for smaller-scale aged care or smaller-scale communities. We all talk about a dementiafriendly community, but we actually need to start doing it! I’d like to see a person with dementia walk out the door into a local community that knows who they are and has a level of understanding about what they need and what’s happening for them. Unfortunately, I’m a bit of a realist and, knowing the Australian community and people in general, I don’t see that happening except in some smaller towns, which might be where we all decide to move at the end of the day!
JG: There are a couple of ways this can go. Because people want to age in place, or near to, we’re going to have to work much more carefully with models of medium- or high-density aged care design. I do believe that those models will work better if they’re integrated with non aged care residences, intermixed with other things.
GL: Like a “healthopolis” or a place of wellness?
JG: Something like that. I would also like to see aged care become an urban problem rather than a problem of a site and a building. Where malls are becoming more residential, so they’re much more humancentered, they could also be designed to assist people with dementia. People could then live abutting one of these pedestrian areas in the city centre where there are parks nearby, it is all connected and people are safe to roam around. And, if they start wandering, there are mechanisms to deal with that. I’m seeing a lot of hope in the future, especially when inclusive and really good person-centred design come of age and enter all typologies of architecture, from the urban right through to the individual home.
AK: The future? Apart from climate change and feeding the global population? From a building point of view, one future is going to involve the current age-care facilities because they’ve got a whole infrastructure. What do we do with those to create a better place for anybody to live? Another future is the medical and technical change, where dementia will be dealt with differently – if there is a breakthrough, for example.
This might mean that a future environment has to be flexible with how it deals with the current issues of people living with dementia, and how that might change and adapt for other future needs. Buildings always have a future beyond the uses that they might have now.