(Above: A ‘reminiscence room’ filled with vintage furniture, photographs and art at a Bupa care home)
In 2013, an estimated 44 million people around the world were living with dementia. By 2030, it will likely be 75 million. An umbrella term for over 100 diseases affecting memory, language and cognition, dementia is a progressive condition, and one that has a devastating impact on individuals, as well as placing an enormous financial burden on global health services (currently estimated to be around $600 billion per year).
In 2012, Prime Minister David Cameron launched the Dementia Challenge, which aims to improve dementia care and support and make the UK a world leader in dementia research by 2020. The UK held a G8 summit to discuss dementia in 2013 and in March this year, the WHO launched its first Conference on Global Action Against Dementia. In her opening remarks, director general Margaret Chan spoke of a desperate need for a global action plan to tackle the condition, while Cameron has described the rising number of people diagnosed as a health challenge “as big as that posed by cancer, heart disease and HIV/AIDs”.
Although the statistics are bleak, it is possible for people with dementia to live an enjoyable life for years after being diagnosed, provided they have access to the right care and support. And while much of the focus on fighting dementia is on finding a cure or treatments, there are huge opportunities for designers and creatives to help raise awareness of the condition, make communities more dementia-friendly and improve daily life for people living with it.
From 2009 until 2012, healthcare charity the King’s Fund ran a series of schemes in UK acute, community and mental health hospitals to assess how they could be better designed to meet the needs of patients with dementia, as part of its Enhancing the Healing Environment Programme. (Around 25% of people admitted to acute care wards have dementia, and tend to experience longer stays in hospital than other patients).
The study found that making simple, low cost changes to environments – such as improving signage and wayfinding, removing visual clutter, creating designated social spaces and quiet places and introducing artworks and photographs to help patients reminisce – could have a significant impact on their wellbeing. Other recommendations included practical tips for avoiding reflective surfaces, using contrasting colours on walls and floors and installing better lighting to avoid glare and shadow, all of which can create ‘visual barriers’ for people with dementia.
Each of the hospitals that took part in the project reported a tangible impact on patient experience, leading to a reduction in falls, length of stay and incidents of violent behaviour (often a sign of stress or confusion), plus lower levels of sickness and absence among staff.
The King’s Fund has since published a report on the project, titled Developing Supportive Design for People with Dementia, which provides best practice guidelines for hospitals, and an assessment toolkit allowing carers and health professionals to assess layouts and identify areas for improvement (both are available to download from the King’s Fund website). Former EHE programme director Sarah Waller says its guidelines have been downloaded over 7,000 times in the US, Europe and South America, and the University of Worcester’s Association for Dementia Studies, which has since taken over the project, is now using them to create an app. In Scotland, the University of Stirling has also been working with architects, planners and health professionals to devise dementia-friendly hospital layouts at its Dementia Design School.
As we’ve covered in the past (CR April), good art and design can have a huge impact in hospital and care environments – PearsonLloyd’s Better A&E system has significantly reduced aggression and threatening behaviour in A&E departments, and Vital Arts’ work for the Barts Health NHS Trust, which includes large-scale installations
and participatory arts programmes, has helped brighten clinical and unsettling environments and make patients feel more at ease.
The Kings Fund’s work is focused on minor, low-cost adjustments but as its research has shown, even these small changes can make a big difference. “Practical, low cost changes are much more likely to get done than expensive ones – it’s just a matter of doing things differently with the money you’ve got, which can still have a significant impact,” explains Waller.
In the private sector, Bupa has conducted considerable research into how care home environments can be redesigned to better meet the needs of residents with dementia: it recently worked with Gregor Timlin and Nic Rysenbry at the RCA’s Helen Hamlyn Centre (see p32) on a research project which resulted in a series of prototypes for furniture, crockery and everyday items created specifically for people with dementia (a report of the project, titled Design for Dementia, is available online).
Designs included white ceramic mugs designed to reduce spillage, offering an alternative to the childlike cups often used in care homes, and colour coded plates to help residents distinguish between foods. The centre also devised ideal layouts for dining rooms, kitchens and outdoor spaces, and prototypes for flexible wall storage systems to help residents customise their rooms. The project is documented at bettercarehomes.org, and Bupa says it has since introduced several dementia-specific design features in its care homes and dementia centres, from new signage and colour schemes to customised front door-style bedroom doors, ‘reminiscence rooms’ and memory boxes designed to spark conversations.
Of course, many people with dementia continue to live in their own home, meaning there is also a growing need for products and services which can help make everyday life easier and safer and reinforce daily routines (the King’s Fund and Alzheimer’s Society are currently working on guidelines to help people make their homes more dementia-friendly, designed to help people stay in their own communities for longer).
Spring Chicken, a website which sells products for older consumers (see p58), has a number of items designed for people with dementia, from a 2 3 watch fitted with GPS tracking to discreet home alarm systems and tablets which provide daily medication reminders and allow users to make video calls at the touch of a button.
In 2011, the Design Council teamed up with the Department of Health to launch Living Well with Dementia, a challenge which awarded £360,000 in funding to five winning projects and products designed to help people with dementia. Submissions included job matching service Trading Times; Dementia Dog, a scheme providing people with dementia with assistance dogs, which can help remind owners of sleeping, walking and eating patterns, while encouraging them to be more active; and Ode, a product which aims to stimulate appetite by releasing three food fragrances a day, reminding people with dementia to eat. (The device is now sold in the UK, Norway and the Netherlands and in trials, 52% of people who installed it gained weight.)
The Design Council hasn’t launched a specific dementia project since, but through its Design for Care programme, aims to develop new products and services for older people, including those with dementia.
“Our population is not only ageing, with those over 85 the fastest growing demographic in the UK, but our expectations of what it is to live well have changed from those of 50 or even 30 years ago,” says chief design officer Mat Hunter. “We need to design more attractive and aspirational choices for the forms of support that enable us to live independently – and dementia is one of the important considerations [of that initiative],” he adds.
Given the amount of people living with dementia, however, it seems surprising that there aren’t more initiatives set up to fund or support new products, technologies and services for people with the condition. Hunter acknowledges this hasn’t received as much funding as perhaps it could have – “certainly more money has been spent on dementia research,” he says – but he believes the Dementia Challenge has identified “that every part of society, from employers to retailers, banks and transportation, to recreation and entertainment, needs to understand how to design their communications, environments, products and services so that they better support those with dementia and their carers.”
George McNamara, head of policy at the Alzheimer’s Society, agrees that more could and should be done to develop new products and services: “There’s a growing market for this, as well as a real social need, because the reality is, we’re all getting older. I think innovation is still at quite a low level, but there is huge potential – we have some of the most creative people in the world in the UK, and if we have a clear focus around how we can respond to an ageing population, we could trigger some really beneficial ideas. Responding to the Dementia Challenge isn’t just a matter for the Department of Health, but all of Whitehall, and we would like to see government looking at innovation funds to promote businesses and support people in the creative industries who are looking at ways to improve life for people with dementia,” he adds.
As Hunter and McNamara explain, there are several challenges with creating products for people with dementia: with so many different symptoms and conditions, people’s needs vary wildly, and adopting a one-size-fits-all approach can be problematic, particularly given the lack of current guidelines on dementia-friendly design. “There are few design guidelines available. From bath taps to signage, most designers don’t know what works and what doesn’t,” adds Hunter.
Aside from working with experts on dementia and health professionals, one way designers can work around this issue is by adopting a more user-centred approach to design – a method currently being adopted at the LUCA School of Arts in Genk, Belgium, which runs a design for healthcare module encouraging students to spend time with residents in care homes and develop products or projects tailored to their needs.
The course is co-run by Andrea Wilkinson, a lecturer and researcher at the school’s InterActions/Social Spaces research group, who also works part-time as a graphic designer at a care home, where she creates activities and materials for residents. Products devised by Wilkinson and students so far include a personalised pendant for a woman with dementia and a colouring book created for a man with Parkinson’s and dementia who was required to colour in drawings as part of his daily exercise.
The colouring book is filled with images of 1950s memorabilia, and was made by a student for her grandfather to provide a more appropriate alternative to the childlike ones stocked in his care homes. It has since gone on sale in Belgium, with a US version planned for later this year. The pendant, a one-off prototype, was designed for a woman who would often get lost while out walking and due to speech problems, struggled to articulate where she lived. Her disabled husband was terrified he would lose her, and had made a sign for her to wear around her neck showing her name and address but understandably, she no longer wanted to go out with it on. The solution, devised by Wilkinson, was a discrete gold pendant engraved with the woman’s address and a map of her neighbourhood, designed to jog her memory and reassure her husband without drawing attention to her condition.
“It’s a strange way that we work as usually, you’d start out with a design in mind, such as ‘I want to create an interface for someone with dementia’, then test what imagery people respond to and create it,” explains Wilkinson. “We have no idea what we’re going to make with people, but we’ll see opportunities for designs through the time we spend with them, and through talking to care givers and family members,” she explains.
While adopting such a bespoke approach to design has limited economic potential (and as a result, limited potential for funding), it can lead to prototypes with a wider appeal. Plans for some of the research unit’s projects have been made available via open source software for other facilities to download, and products such as the colouring book are being adapted for audiences around the world. “Apple’s not going to hire us to spend hours in a care home to develop a smartphone interface for one person, but what you might find is once you’ve designed that based on a real person’s needs, who you have spent time with, that it can actually be useful for other people too,” adds Wilkinson. “We don’t just create one-off prototypes that die, but designs that can live on.” And as Wilkinson, Hunter and McNamara agree, listening to and engaging with people with dementia to really understand the challenges they face in daily life is key to devising products that can help them overcome them.
Beyond helping improve life for people with dementia, Wilkinson hopes the design for healthcare module at LUCA will help encourage students to think about how they can use their skills for social good, and apply them outside of traditional commercial applications. “I don’t think all the designers who take part in the course will say, ‘now I want to work in a healthcare environment’, but I think its about creating a sensitivity – saying, ‘You’ve got these skills, how can you use them in other contexts to make your neighbourhood better?’ The world is full of designers, but not everyone can be making logos and interfaces and for me, this kind of design is very rewarding. I don’t just think about the designs I’ve created, but about the people using them,” she adds.
As well as creating better products, services and environments for people with dementia, there is still a real need to educate the public about the condition. The Alzheimer’s Society recently launched the Dementia Friends campaign, a government funded programme that has recruited 1 million volunteers to receive dementia training and in turn, raise awareness of it in their local communities. The scheme has also attracted support from celebrities and businesses including M&S, Asda and Argos, and aims to recruit a further 3 million volunteers by 2020. Alongside this, the Alzheimer’s Society has been running education programmes in schools, not just explaining symptoms and signs of dementia, but showing that people can still live well with the condition.
The Joseph Rowntree Foundation, through its Dementia Without Walls project, has also been working with dementia campaign groups to give people with the condition a stronger voice in society and challenge the way dementia is discussed in the media. Alongside studies into public attitudes toward the condition, and research into people’s experience of living with it, the initiative recently worked with the Dementia Engagement and Empowerment Project (DEEP) to publish guidelines for journalists and broadcasters on talking about the condition. The project also resulted in a short film, Words Matter, which is published on JRF’s website and outlines the negative impact of describing people as ‘patients’, ‘sufferers’, or people who are incapable of living fulfilling, independent lives (guidelines are published on DEEP’s website, dementiavoices.org).
“The Dementia Without Walls programme is really about trying to shape the UK as we’d like it to be for all of us who might experience dementia in our lifetime,” explains Katherine Blaker, community development manager at JRF. “One of the main challenges we face in doing that is the fear and stigma that’s associated with it – people might not seek out diagnosis because they fear what life will be like afterwards and many of the people we’ve spoken to have lost lifelong friends after being diagnosed, because people aren’t sure how to react. I think it’s very difficult for people with dementia to have their voices heard in society, and we need to talk about it more and listen to their experiences,” she adds.
Since the launch of Dementia Friends and the Dementia Challenge, Blaker says there has been a notable increase in public awareness of dementia and a growing number of schemes aimed at helping people with the condition make their voices heard in their communities. “Lots of neighbourhoods are now working closely with local volunteer groups, and I think the Dementia Friends campaign has encouraged a lot of people to talk about dementia more openly,” she adds.
The Foundation has run several projects aimed at making cities and towns more dementia-friendly. Its work in York, for example, has included cooperating closely with people with dementia to improve public spaces for them, from community centres to train stations – and Blaker says she hopes more communities will adopt similar initiatives.
In terms of improving daily life for people with dementia, there is still a lot to be done – awareness of the condition remains relatively low and it is often still feared or misunderstood – but with support from voluntary groups, local communities, businesses and industry, there are huge opportunities to help people with dementia live well in the UK and the rest of the world. The creative community has a key role to play. 1
For more information see alzheimers.org.uk, jrf.org.uk, designcouncil.org.uk, kingsfund.org.uk, bettercarehomes.org, dementiavoices.org and dementiachallenge.dh.gov.uk