Heidi Benham from the Royal College of Art in London spoke at MuseumNext Indianapolis about designing Museum experiences for people with Dementia.
Heidi: Wow, you all look tired! Sorry, I didn’t mean to start by insulting you all, I’ll try again. Good afternoon. I’m Heidi Benham and I’ve just graduated from the Royal College of Art in London with my Masters in Information Experience Design and today I’m going to talk about sensitive spaces, designing museum experiences for those who live with dementia.
When I began writing this, I said to my friend ‘How on earth am I going to fit everything I know into 15 minutes?’ And she said ‘Heidi, just speak very slowly.’ But I won’t because I know everybody’s about ready for a glass of wine or two so I’ll get on with it.
When I woke up this morning, I had that horrible fear of not knowing where I was. I think most of us have had it at one time or another. It’s weird when you open your eyes and you haven’t got a clue where you are or how you got there and you carefully piece together the jigsaw puzzle of objects around you gradually recalling where we are and we get on with it. Of course this all happens within a few seconds, all those emotions – confusion, fear, vulnerability, comfort and finally relief washing over us in that tiny moment. This experience is similar to one that people who live with dementia have to deal with often several times a day. Imagine that, blinking and then not having a clue where you are or who the people are that are around you.
A couple of years ago, I would’ve said what many of you are perhaps thinking already. What’s the point in designing an experience for someone if two minutes later they will have forgotten it already? Well, I’d like to talk to you first about two bookcases. We all know that our memories are created in the most complex of ways but this simplified model shows just two. Memories of personal events and general facts are managed by the hippocampus represented here by the bookcase on the left. And memories of feelings and emotional memories are stored in the amygdala represented by the bookcase on the right.
Recalling an experience often combines these two types of memory. We remember places, faces, feelings and so on. Just like when we try to make sense of the world or that jigsaw puzzle room we have woken up in, we use logic and reasoning to combine what we sense with the information we can remember. And we’re also greatly influenced by what we feel. Dementia can change all of this.
Let’s imagine that on the top shelves of the bookcase, we store our most recent memories descending down to our childhood stored on the bottom shelves. For a person with dementia, the bookcase for memory of events and facts, the hippocampus, the one on the left is often the first to be damaged. So imagine dementia has just hit the bookcase. It shakes a little and begins to sway. In the early days, there may be a small amount of damage to the most recent memories, the ones up there on the top shelves. This may mean that the information is still there albeit a little muddled or hard to find. For example, dates and times may be a little confused. Over time, this bookcase will start to collapse resulting in the loss of events and factual memories and the order of time.
If recent memories on the top shelves have been damaged, then the person’s strongest memories will be from many years ago and this could mean that the person believes themselves to be much younger than they are and, if so, they may have difficulty placing those around them in their lives. If information and the ability to use logic and reason are lost, it is much more difficult to find and make sense of the memories that do remain. Although in later stages of dementia, both logical and emotional responses are damaged, emotional memories remain intact for much longer. So although a person with dementia may not remember who you are or that you’ve been talking to them for the last five minutes, they will know how they feel about you.
For example, someone who makes them happy can create a feeling of comfort and security. Similarly, someone who has reduced ability to use logic and reason may make sense of a place, not by where it is but by what it feels like. So if you wake up in a hotel room you’ve never stayed in before, you will feel immediately less comfortable and safe than if you’re surrounded by your personal belongings in a familiar space like your bedroom at home.
For people with dementia, we need to see all behaviour as a means of communication based on feelings not facts. As experienced designers, we need to respond to people with dementia on an emotional level and this needs to happen in all situations – at the supermarket, on the bus, in the pub. The world in general needs to be a more dementia friendly place.
One example I will never forget is of an elderly gentleman in the UK who used to visit his local pub every week. He developed dementia and as it worsened, he began to lose the ability to use money, an ability most of us take for granted every day. One day he went to his local pub for a pint and he went to pay for it and handed over the wrong change. The landlord, instead of being helpful and understanding, told the man he was wrong perhaps believing him to be drunk rather than just confused. The man became agitated and the situation resulted in an argument with the landlord kicking the man out of the pub and banning him for life.
Now I believe that with a little more understanding and awareness in society, we can change this outcome and I call upon museums to drive this social change. The fundamental purpose of designing an environment which takes into account the person with dementia is to compensate for the symptoms and effects of dementia and to support, retain the function, skill and ultimately an individual’s independence. And why is this so important? The reality of the disease is that the number of people developing Alzheimer’s, the main cause of dementia, is rising fast. Statistics tell us that roughly one third of us in this room today who will live to the age of 85 will die with Alzheimer’s or another dementia. This is according to the Alzheimer’s Association. In fact, every 67 seconds someone in the US develops Alzheimer’s disease. By 2025, the number of people aged 65 and older with Alzheimer’s disease is estimated to reach 7.1 million, a massive 40% increase from those affected in 2015. By 2050, this number may nearly triple to a projected 13.8 million. In short, a huge proportion of society will be living with the disease.
And it’s not just older people who are affected either. People are now developing the disease much younger. A mother as young as 39 years old in the UK has developed the disease and she now finds herself unable to take her young children out to experience and learn new things just because the world is not prepared for her yet. And it’s not enough just to say ‘Oh well, they will have found a cure for it by the time we reach that age’ because the reality is that with such a rapid increase, there will be too much pressure on the healthcare system to cope with such a large number of people.
So as designers, we have a new responsibility to develop new environments inclusive of those who currently live with dementia and for those of us in this room who will develop the disease and whom I have no doubt want to retain a high quality of life for as long as possible. We must find ways for people to live with dementia rather than suffer from it.
So what can we do? We can start simply by saying that those who live with dementia should not be banned to a care home. Let’s forget about care homes. Let’s pretend that the whole world is one big care environment. What would that mean? One example of how this might work is Hogeway, a nursing home in the Netherlands that has been designed to give people with dementia freedom and independence within a safe controlled environment. And it’s working. Forget the image of a row of chairs facing the television. Forget the waiting room for doom. This is what a care environment should look like. It’s fun, full of life and inspiring.
The Hogeway complex is set out like a village with a town square, supermarket, hairdressing salon, theatre, pub, café, restaurant as well as the 23 houses themselves. The village has been designed specifically as a pioneering care facility for people with dementia. The benefit of using all day reminiscence therapy at Hogeway compared to a usual nursing home is that residents with dementia are more active and require less medication. So we have evidence that thoughtful, spatial and experienced design works so let’s do it in museums. Through sympathetic and creative design methods, museums have the opportunity to create truly engaging spaces making time for reflection, for feeling and for a sense of connectivity. It just takes a bit of understanding to make a space sensitive but let’s think about it practically.
Of course, I’m not an expert in dementia, I’m a designer and that’s why I recommend that when designing museum spaces, environments or experiences that a dementia specialist is employed to advise on how the spaces can work for those with dementia. You can even invite people with dementia to become part of the design process. From my research, I have come across some very simple methods that we can employ that can dramatically change an environment for someone with dementia. These visitors face a variety of difficulties including memory loss, physical difficulties, visual problems, task sequencing, problems with recall, problem solving and balance and spatial awareness. Simple design solutions can be used to approach each of these.
We need to create areas that are interesting to explore paying particular attention to the touch and feels of different materials, the use of music and light and the use of colour. Spaces should be made easy to find with identification clues and reminders and access to hazards or hazardous areas should be controlled. We don’t have time to go through all of these today so I’ll just mention some key ideas and I’ve divided this up into categories. First we’ll just talk about general spaces. Corridors are essentially places of movement and need to be broken up with blocks of colour and visual, possibly sensory stimulation. Pathways should be clear offering clues and reminders in bright colours. They should be brightly illuminated and sound absorbing materials should be used to avoid echo. Design should be clear to eliminate unnecessary complexity.
Furniture. Furniture should be sturdy to provide support. It should be arranged mindfully to allow for clear circulation routes. You may not be able to move walls but you can move furniture to create smaller spaces for different purposes.
Decoration. Flat, non-reflective paint should be used to avoid glare especially on floors. Mirrors should be carefully placed especially near pillars and other architectural elements where reality may be confused with reflection. Clutter should be avoided as it over stimulates.
Colour. Use of colour can alter perception of space and temperature. Colours that could be described as within the blue range appear to recede and so make small spaces seem larger and cooler. Warm colours in the red/orange range appear to advance making a large space seem smaller and an unfriendly space seem warmer. Red environments, however, have been shown to raise blood pressure, stimulate the adrenals and make people sweat and blink more frequently and heighten anxiety whereas yellow stimulates conversation and is warm and friendly, an optimistic colour suggesting sunshine and good company. Vibrant blocks of colour at the end of the corridor can make them appear shorter.
Switches and control buttons. Good contrast should be used between adjacent surfaces, features and their backgrounds and between controls and their backgrounds. All buttons including lift buttons should be strongly contrasted to the supporting wall colour.
Doors and glass. To encourage someone to open a door, use a handle with a contrasting colour. Locked doors at the end of corridors should be hidden by removing obvious handles or painting doors and handles the same colour as adjacent walls. Glass panels should be covered so that people do not think that they can get through them. Sorry, that confused me a bit, I thought I haven’t been talking for six minutes have I? It’s counting down isn’t it!
Signage. Easy to find general facilities like toilets give people with dementia and carers the confidence to go out and also to spend longer in a place meaning that they can become more engaged.
Activities. People will not take part in activities if they cannot find where they are taking place, if the room makes them feel claustrophobic or if they cannot see or hear what is going on.
Outdoor areas. Sensory gardens can be designed to stimulate the senses of touch, sight, sound, taste and smell enabling visitors to enjoy the fresh air and sunlight whilst engaging with their families or others engaging in group activity.
Some additional design elements. Create spaces that have the ability to adapt to suit each person’s needs or a range of needs. Design of all external and internal layouts should be simple and logical to assist with orientation. You must consider the impact of light, colour, contrast, texture, aroma and sound to optimise the use of all five senses. Of all stimuli, noise has been proven to be the most significant and damaging impact on the person with dementia. Now I’ve got an extensive list of these and more so I’m happy to send them over to anyone, just get in touch.
We’re all here because we’re passionate about the future of museums. For me, the museum of the future is a proactive empathetic space that can facilitate conversation, activity and generate a sense of community, a place where we can reflect on information, the past and use it to inform our ideas for the future. Museums can generate progression and drive change so let’s push that, let’s prove it and let’s create museums that truly welcome everyone, even if they might forget that they’ve been.
Thank you. The bit I was most looking forward to, questions!
Female Voice: You touched on something that’s important to me, noise. This can be very damaging. Working in a contemporary art museum, a lot of artists and curators are bringing in practices that tend to be loud and are supposed to be loud. How do I combat that?
Heidi: I think of course with situations like that, you can’t close those sort of events off because everyone else needs them. But I think just by making sure that you can have signage that allows people to see what kind of experience they’re going to have rather than making it a surprise is a good way to inform people before they involve themselves in something that might be upsetting. Similar to how we warn people about strobe lighting and things like that in experiences. If we have more information before the experience starts for people with other diseases or disabilities, then I think we can make the experiences a bit more inclusive.
Female Voice: Have you seen any particular museum exhibitions that represent really good practice for designing with people with dementia?
Heidi: Nothing that springs to mind but I was reading today about some projects in the Netherlands, someone informed me about it earlier, who are creating events especially for people with Alzheimer’s. So I think some of you guys are here, I’d like to talk to you later about that. But I think the V&A is really good at creating comforting spaces and also The Wellcome Trust in London. If any of you have not been, it’s a really good visit. They have small spaces where people can talk and meet and then other places where you can sit isolated but still be engaged in the exhibition and it’s welcoming and accommodating to a lot of different people.
Female Voice: You talked about design. I’m curious if you ran across anything in your research that indicated how museums could use collections to satisfy those early memories. So if we have very deep historic collections of photography or ephemera or objects or things along those lines, how can that play a role in supporting a stimulating or a positive environment for patients with dementia?
Heidi: I think using those things from collections can be a really positive thing. I haven’t gone too deeply into researching about that but I have come across some projects. I don’t know if you’ve heard of memory boxes where some artists and designers have collated different objects that are reminiscent and allow people to remember things that might’ve happened in their childhood, for instance, old types of sweet wrappers and packaging and things like that and newspapers so that people can sit quietly and go through these objects. I think those kind of projects are really nice. Museums do have that opportunity, if they’ve got a big collection from that era, it might be quite nice to include some of those things in workshops or activities specifically for people with dementia and their carers.
Male Voice: Are there similarities between the needs of people with dementia compared to autism? I’m familiar with some programs, there’s a commercial chain of movie theatres that has special showings for guests with autism where they don’t dim the house lights as much and they don’t turn up the sound as loudly. I’m wondering are there similarities for people between autism and dementia?
Heidi: Definitely in the way that both demographics need different environments to feel comfortable in. I don’t know in depth what each of those groups need but I think that you can try and make experiences that are specifically for people with dementia in the same way you can make them for people with autism. I wouldn’t say it’s the same experience but you can design those experiences in the same way with understanding and awareness of each circumstance.
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