As we live longer, inevitably more of us will develop dementia in older age. STEPHEN LEWIS reports on York’s progress in becoming a dementia-friendly city.
MOST people meeting Peter Jones for the first time probably wouldn’t guess he suffers from dementia. The 73-year-old retired architect is fit, sociable and friendly.
He can hold a long conversation with someone, says his wife, Avril – and only afterwards will he admit that he couldn’t remember their name, even though he knew who they were.
Peter also has poor short-term memory. If a lot of people are talking at once, he finds it difficult knowing who to focus on. Nevertheless, he and Avril maintain an active and independent life at their home in Wigginton.
Even for someone such as Peter, a journey into York can be confusing. “It is a busy place for someone with dementia,” says Avril. “It can be overwhelming. Peter will not go into town on his own.”
Last year, a campaign was launched to make York a friendlier, more welcoming place for those with dementia.
York Dementia Without Walls is led by the Alzheimer’s Society and the Joseph Rowntree Foundation. It involves local businesses, community groups, public services and individuals all trying to become more aware about the needs of people with dementia, so as to make it easier for them to get out and about in York.
“People with dementia should be able to go to the theatre, walk around town, or enjoy live music,” says Philly Hare, of the Joseph Rowntree Foundation.
Often, it is the everyday things – shopping, taking the bus, visiting the bank –people with dementia find confusing. Impatient people in the queue behind don’t help, says Philly, and if we could all learn to be more understanding it could make a huge difference.
For Avril, this comes down to being friendly, helpful, and patient. If you see someone who is confused or lost, don’t ask lots of questions – that will make them more confused. And don’t look in their wallet for identification.
“Peter carries a card, but he wouldn’t let a stranger look in his wallet,” she says.
Instead, try being gentle and patient. Ask if you can help. And if they are confused, perhaps suggest having a cup of coffee together. “People then start to talk – and once they do, they may reveal something that will help.”
The good news is that a range of people and organisations in York and North Yorkshire have started to try to be more dementia friendly.
The Joseph Rowntree Foundation has prepared case studies to give an idea of what people are doing. Here are a few:
• To find out what you can do to start making your organisation more dementia friendly, contact Dementia Forward on 01765 645904 or email firstname.lastname@example.org
• To find out more about the Dementia Without Walls programme visit: jrf.org.uk/dementia
Fiona Andrews, British Transport Police, York
Dementia Without Walls first got PC Fiona Andrews thinking about the issue. Fiona was determined to find out just how accessible York Station was. She arranged for people with dementia and their carers to visit the station to review signage and facilities.
She organised day trips, with free travel from the train companies, to try to make those with dementia feel more confident about travelling by train. “I was quite surprised… that some of the persons who travelled with us had not used the railways for decades, up to 30 years in one case.”
She also arranged for Dementia Forward to give awareness training to staff at the station.
“This I hoped would encourage persons with dementia to continue to come to York station, whether to travel, buy a paper or just have a coffee,” she says. “It would take away the stigma of dementia and give staff the knowledge to identify a person who may need some help and the tools to be able to communicate with them. It would also hopefully prevent police being called and the person with dementia having to be spoken to by an officer.”
The results have been positive.
“East Coast staff have said they can recognise the signs better now and are confident when dealing with persons with dementia. Our officers here are also more confident.”
Now Fiona is seeking dementia champions for every North East station.
Sam Farooq, visitor information and sales assistant, Visit York
When her manager suggested dementia-friendly training, Sam Farooq had to Google what dementia meant.
Going on the course gave her an insight into what living with dementia involves, and made her more aware of the signs. She realised that without knowing it, she had already been helping people with dementia.
“One lady came in every day with the same question,” she says. “I wondered why she didn’t remember what I’d told her the day before. Now I think she was probably living with dementia.”
About seven million people visit York each year. Whether they live locally or on the other side of the world, many pass through the visitor centre.
Sam tells how one woman came into the centre in distress, having forgotten why she was in York. Staff were able to reassure her, find her address in her handbag and arrange a taxi home.
The big difference is simply having more awareness, taking a little more time. “If someone comes in five times a day asking the same thing, it doesn’t matter,” says Sam.
Linsey Wood, operations manager, Fenwick
When her store director asked her to attend a dementia-awareness day, Linsey Wood wasn’t sure what to expect. But the course reassured her that the store already had good practice in place.
“We’re always talking to customers about what they want. After all, we have to understand our customers’ needs,” Linsey says.
With about 250 staff, the main difficulty is getting everyone together for dementia-awareness training.
The managers went first; they are training staff on the shop floor. Feedback has been good. “Lots of staff have a personal link with someone living with dementia,” says Linsey.
She’s now considering how to build dementia awareness into induction training. The next stage will involve staff from the concessions stores. “The fashion floor is full of concessions.”
Jayne Gledhill, voluntary project manager
Jayne Gledhill had an idea to help people with dementia: a film bringing together students from York’s Joseph Rowntree School and residents with dementia from Hartrigg Oaks, the retirement village next door Her proposal won funding from GeniUS!York.
Jayne briefed arts company Inspired Youth to produce a nine-minute film called Tune Into Dementia. The students imagined how their own daily lives might be with dementia and talked about what they’d learnt.
In the film, clever use of cutting and colour evokes the confusion dementia can bring.
Working with teachers, Jayne drafted a lesson plan to go with the film, providing a ready-made resource for York’s nine secondary schools.
With the film on YouTube, Jayne is looking at ways of sharing the lesson plan more widely. “There’s no reason for this to be York’s secret,” she says.
Liz Sweeting, specialist mental health nurse, York Hospital
Ward 37 at York Hospital is a light, open space where colour coding helps people find their way around. A spring flower – daffodil, tulip, snowdrop – identifies each side bedroom. Raised lettering and symbols mark toilets and showers.
“Coming to hospital can be overwhelming for everybody. For people with dementia, the environment plays a key part,” says specialist nurse, Liz Sweeting.
Ward 37 is a mixed medical and mental health ward, freshly redesigned for patients with dementia. But Liz and her team don’t restrict their work to one ward. They are always available to anyone with concerns about dementia, visiting any ward to provide advice and support. Liz also runs awareness sessions alongside Dementia Forward for non-clinical staff such as porters, kitchen staff and volunteers.
Staff are also introducing iPads to supplement more traditional activities such as jigsaws and dominoes. “Simple arts apps are an amazing way to engage with people creatively, even those with quite advanced dementia,” Liz says.
Liz takes her work beyond the hospital too, liaising with GPs, care homes and the Alzheimer’s Society to connect acute care with community care. “It’s about raising awareness for everybody,” she says.
Emily Abbott, director, here:now dementia, York
As a hospital patient, Emily Abbott was struck by how music calmed distress. This led her to think about how art might help people with dementia.
After working on York’s first Alzheimer’s Society ‘Singing For The Brain’ sessions, Emily approached York Museums Trust to explore more arts-based activities. She now directs here:now dementia, developing ways of living well with dementia.
Projects have included a weekly group at the National Railway Museum and film-making using iPads with artist Claire Ford. “The iPad project is a lovely reminder that people with dementia can engage with things that are modern and changing,” says Emily.
Emily is now setting up a cycling project and also preparing recommendations for York Castle Museum after ‘dementia-testing’ it with people with dementia.
Catriona Sudlow, older people’s physical activity officer, City of York Council
Why can’t people with dementia be as active as anyone else? asks Catriona Sudlow. “They’ve just as much right to keep doing things they’ve done all their lives.”
York’s Sport and Active Leisure runs the first course in the country helping sports and leisure facilities become dementia friendly.
“It’s about understanding the signs and symptoms that go with dementia, so people can do their activities knowing someone will help no matter what the situation.”
For coaches, Catriona’s advice is simple. “Be flexible. Don’t treat everyone the same. Everyone’s an individual.”
Sport and Active Leisure is busy rolling out the work across York. Bowls, tennis, golf and cricket, sports popular with older people, top the list.
Catriona is planning a database of dementia-friendly clubs in York.
Nigel Prince, North Yorkshire County Council Libraries
Nigel Prince wants libraries to be welcoming, supportive and safe places for people with dementia.
He’s been working with the local Alzheimer’s Society, training staff and volunteers in dementia awareness. Little things – such as not finishing people’s sentences – make all the difference.
But it’s also about promoting what the library can offer.
“A library is about much more than just books,” says Nigel. ‘Pictures to share’ publications are designed to spark conversations around common interests such as gardening. The library’s free online subscription service allows people to use tablets and home computers. Those who can’t read can borrow Talking Books.”