While researchers focus on finding effective treatments and diagnostic tools, museums across Cambridge are using their collections to enrich the lives of people with dementia and their carers. Becky Allen reports
You come together, experience together, so you have a break from the dementia, rather than a break from each other.
Edye Hoffmann, Founder and Director of dementiaCOMPASS
It’s a bright spring morning when I meet Barbara and Roger Goodden at the café in the Fitzwilliam Museum. They’ve agreed to speak to me about Portals to the World, an art appreciation course for people with dementia and their care partners.
“You’re freezing!” Mrs Goodden exclaims when we shake hands. As we look at the menu and decide on tomato soup – and before anything like a question forms in my mind – she adds: “My memory’s not very good you know – but Roger will fill in the details.”
Filling in the details is something Mr Goodden has had to do increasingly often since his wife was diagnosed with Alzheimer’s Disease four years ago. Walking around the museum after lunch, we stop in front of some of the exhibits, from Papal bronzes to Monet paintings, they covered during the course last year. “Coming here you don’t feel alone,” he says, “because you can talk to others – customers and staff – who understand.”
In the UK, 850,000 people have dementia. The disease costs £24bn a year, much of it met by an army of 706,000 unpaid family carers. And while we currently lack biomarkers to diagnose dementia and effective therapies to treat it, what we can tackle now is the isolation that accompanies the disease.
Which, five years ago, is what Edye Hoffmann decided to do. Having worked in the dementia community since 2003, first as carer for her mother-in-law, and then as a care home activities coordinator and trainer, Hoffmann realised she could make most difference by offering the support she had sought while caring for her mother-in-law.
So in 2010, she set up dementiaCOMPASS in Cambridge, and the following year developed Portals to the World.
“People with dementia are doubly stigmatised. They are older and have a complex condition that’s a mental health issue. It’s a double whammy,”
she explains.
An isolating disease
“People say the thing they never expected was the isolation. We have to understand, earlier in the journey, ways of connecting people to communities and one another in order to serve them better in later stages where we see crisis and breakdown. If we can do that as a community then our situations will be much better.”
A series of annual, intensive art appreciation courses piloted at the Fitzwilliam in 2011, Portals to the World is now expanding into other University museums, including the Polar Museum, and holds regular alumni events at the Museum of Archaeology and Anthropology, Kettle’s Yard and the Museum of Classical Archaeology.
The courses are intimate – each caters for eight couples – with around 20 attending alumni events, but it has been so successful that people travel from across the region to attend. The course runs for nine consecutive weeks, each two-hour session offering a 20-minute talk or handling session followed by a tea break and a creative activity linked to that week’s talk.
At the Fitzwilliam alone they have covered everything from fans and angels to Japanese prints and exotic tea pots, but for the museum’s Outreach and Access Officer, Joanna Holland, one particularly memorable session featured a Roman sarcophagus.
“Dr Lucilla Burn, our Keeper of Antiquities, talked about the Pashley sarcophagus, an ancient, carved marble extravaganza that engages people in a really special way,” says Holland.
“Afterwards, we worked with clay to focus on a key part of the sarcophagus, this amazing elephant. We asked people to create their own, and they produced some exquisite and beautiful things. Having something to take home, a talking point for where they’ve been but also beautiful in its own right, is a critical part of Portals.”
Respite – together
The other defining feature is what Hoffmann describes as ‘respite together’. “You come together, experience together, so you have a break from the dementia, rather than a break from each other. It’s a different type of respite, and the idea is to discover and rediscover things you might have had an interest in before the diagnosis.”
As well as being popular and enjoyable, the course has longer-lasting benefits. Over nine weeks people make new social connections, learn from each other and share resources, all of which reduce isolation.
Crucially, by focusing on what people can do, rather than the things they cannot, it opens up opportunities that the diagnosis and isolation have foreclosed. Many alumni have become Friends of the Fitzwilliam, others visit the café or attend lectures, and two have signed up for painting courses, says Holland: “a lot of things that are really important in terms of their world not being as small as it was.”
Rachel Sinfield, Head of Communications and Engagement at the Fitzwilliam has watched Portals to the World grow since its inception. “What’s so important about this project is that the focus isn’t on reminiscence, it’s creating an enriching experience that can happen now – a new experience and something to share,” she explains. “That’s important because for many people, the onset of dementia is a time when they feel constrained and acutely aware of what isn’t possible.”
Dementia-facing staff
Making sure the programme achieves its ambitious aims is not easy, and success depends on meticulous planning. Noise, lighting and reflections from cabinets are all considered to create as familiar and stress-free an environment as possible. There is a high ratio of volunteers to participants, and staff, speakers and volunteers are all fully trained.
“It’s been good for staff,” says Sinfield. “We all have different needs and learning styles, something in the learning department we think about all the time. But it’s been very good for collections colleagues who are very sensitive to audiences to be able to receive that training and learn to speak a little slower, smile, and use eye contact.”
It’s a determination that Roger notices and appreciates. “I felt so conscious of the care, attention to detail and genuine concern that the people involved have for the participants; all the thought about what’s appropriate and how unhurried it all is,” he explains.
Hopefully the research across Cambridge into the nature, causes and treatments of dementia will in future make significant improvements in the lives of those with the disease.
Until then, the University can use its rich collections not only for teaching and research, but also to enrich the lives of some of our community’s most isolated members.
“I’m a passionate advocate of the fact the Fitzwilliam is here, it’s free, and we have a responsibility to work with everyone in our community – not just those who can do it easily”, says Holland. “For me, it’s all about a sense of entitlement and ownership, and that it doesn’t just belong to the University – it belongs to everyone.”