Who or what inspired you to take this path?
I was motivated to become an occupational therapist (OT) after seeing how they worked with my aunt with multiple sclerosis. I was incredibly impressed, they were very much with her where she was, in her home, with her family – I thought, that’s what I want to do. Whilst training to be an OT I went on placement in a long stay hospital for people with dementia. At that time dementia wasn’t seen as a place where people wanted to work. I felt that I’d almost ‘come home’, and knew that I wanted to spend the rest of my life working with people with dementia.
How did you end up in your current role?
I worked with dementia patients as an NHS practitioner and I worked at Sterling University with Mary Marshall (the Director of the Dementia Services Development Centre) looking at the role of the arts and design in dementia. During this time I was invited to apply for a role at Sheffield Hallam University. I was given a split post half teaching occupational therapy and also researching active ageing and how we can support older people to get the most out of life. I became absolutely hooked on research, the impact it had and how it could effect change. We now have projects in New Zealand, the Netherlands, Switzerland, China, Sweden, Portugal, and even run a design for health conference, for people from all over the world. It’s a joy, I love it!
What does it feel like to suffer from dementia?
There’s a lovely quote “Once you’ve met one person with dementia you’ve met one person with dementia.” Everybody is different. By listening to people with dementia talk about their experiences, we now know that by the time you have been diagnosed with the biggest thing you’ve lost is your confidence. Their struggles with memory, navigation, and perception erode their confidence. That’s one of the biggest challenges people initially face. Sadly there’s still a lot of stigmas associated with dementia. In many ways, dementia is still seen in the same context as cancer was about 20 years ago.
How does the condition affect peoples’ quality of life?
Living with dementia varies enormously depending on a person’s biography, previous life roles and physical wellbeing. If you’re an older person with lots of physical problems you’ll experience dementia in a very different way. Depending of the type of dementia, people will have different levels of insight but speak to people with dementia and they talk about living in the moment – which is ironic now when we talk about mindfulness. People with dementia have taught me how it’s about ‘just now’ and we can be there and with people, at that moment that’s when don’t feel the loneliness, the social isolation and the stigma.
What do you believe is the best way to communicate with people with dementia?
Communicating requires a lot of sensitivity. Dementia is a long-term neurological condition and when living with any long-term condition we’re still drawing on our memories and resources – that’s not changed, but we might need to be reminded that they’re there! Reflecting on the things we have engaged with in life is an important part of who we are. For staff and family, finding ways to tap into peoples’ strengths in terms of long-term memory, is a fantastic thing. When talking, the transition from the past to present can be difficult. I’ve seen groups with reminiscence bags talking about the past and then the session ends and the bag is put away. There’s the assumption that people can suddenly return to now. However, people need time to switch from past to present, otherwise, it can be very confusing.
Having multiple ways of providing the same information is important. Because of the way dementia affects them some people won’t recognise words or may lose the ability to read but they’ll still understand the pictures. When we go somewhere we’re often looking for clues, not just signs of reference. We try to identify the function. Tables, plates, cutlery clearly identify the function of the room. People forget the basics when communicating with people with dementia and although people age differently, in different places and systems, the fundamental needs people have don’t change, we mustn’t forget that.
Why should good design be considered within the living environment of those with dementia?
There’s a train of thought that says we can help to mitigate against some dementia symptoms by creating social and physical environments that support people. If you’re disorientated in an environment that’s incredibly orientating then it won’t be as frightening and you’ll be much calmer. Research tells us that people don’t talk about the fact that dementia impacts social isolation, self-esteem, and feeling a loss of control. If we provide environments that are designed well it will give people the opportunities to engage in things that are important to them. A well-designed chair and table will potentially enable somebody to eat independently, engage in a creative activity or hold a conversation with someone else in an engaging space.
Have you any practical advice for people looking to utilise design to support people with dementia?
Many people with dementia will experience perceptual problems. Distinguishing objects that are the same or a similar colour to the background can be problematic. For example, a person with dementia may struggle to see a white grab rail on a white wall, a white plate on a white table or a white toilet base in a white bathroom. Using contrasting colours will help a person to distinguish these. Familiarity is also important. Placing objects in strategic places (for example a plant in the corner) can act as a way-markers and help people navigate their way around an environment.
What myths are out there about design for dementia?
That there are ready-made care environments for dementia, that everyone is the same and everyone needs the same things. Don’t think that everyone with dementia is the same. A dementia environment should be a flourishing environment, not a contained one. Design should not make assumptions (a fireplace does not make a room ‘like home’ for people) but rather engage the person in design decisions and provide a person-centred approach that enables every individual. Defining individual space can be reflected in the little things, it’s the difference between sleeping in a hotel room or your own home. The design will enable us and determine what we can do. Work with people with dementia, discuss with them, and draw on their expertise. Older people and people with dementia have a wealth of experience. We need to recognise this. They are really the experts and we need to take time to listen to them.
Who or what inspired you to take this path?