“When I first told people I had been diagnosed with dementia, I got a lot of the same reactions. People told me they were sorry, that they had heard horrible things about it, and, while I never believed them, that they wished it could have been them instead.
“I could see that people pitied me, and to an extent, that made it worse.”
At 74, Beryl has lived with her dementia diagnosis for over a decade. For her, the solution to making every day better is simple:
“All I want is for people to smile at me and help me with what I am trying to do (…) I am still a person, who just wants to have fun.”
As a nation, the UK is terrified of dementia; and, to an extent, rightly so. According to Alzheimer’s research UK, the disease that around 45 percent of people cite as their greatest medical fear, is also the UK’s number one killer of women, and number three killer of men. Within Hackney, it is overtaken only by heart disease and cancer, according to council statistics.
Every minute, three people in the UK develop dementia, and with an increasingly aged population, this statistic is expected to rise exponentially: prediction studies by Alzheimer’s International calling mental deterioration diseases “the epidemic of the future”.
Day to day knowledge of dementia focuses almost entirely on its negative side effects, which, according to the Alzheimer’s Society, has created a public unaware of how to support sufferers, and a network of people in need with no positive place to turn.
In Hackney, however, this may be about to change. From May 21 to 25, the borough is hosting its first ever Dementia Arts Festival: five days of dementia-orientated events and activities, focused, not on what the disease can take away, but on all the joy it can leave behind.
“A lot of people know that one of the most major symptoms of many types of dementia, is severe short-term memory loss,” Sandra Cater, Dementia Friendly Community Coordinator in Hackney, told Eastlondonlines.
“An elderly gentleman might go out for a lovely day with his daughter, she might take him to the seaside and have a wonderful time, but by the time he gets home and sits in his chair, he can have forgotten it all”.
However, what most people don’t realise, Cater explains, is what dementia doesn’t take away from days like that: “The emotions and the feelings”.
“While the events of the day may be gone, how they made him feel will still be there. He may not remember why, but he will remember feeling loved. He will remember having a good time. He will remember feeling happy.” And it is the potential for memories such as these, that Hackney’s first Dementia Festival works to build upon.
Drawing from years of research and experience, the festival offers 15 different activities in venues across the borough, each with the potential to trigger happiness in their own unique way: working “to fill sufferers with a warm glow”, Cater explains, that they can take home, and keep, far out of dementia’s reach.
Events, such as ‘Singing for the Brain’ and ‘Swimming for the Memory’, hosted in Hackney’s ‘London Aquatics Centre’, evoke positive emotions by stimulating parts of the brain unaffected by dementia’s deterioration, such as those turned on by music and movement.
“We sing well known songs to evoke emotional memories,” Singing for the Brain coordinator Joe Everett tells Eastlondonlines, “Even when many memories are hard to retrieve, things like music can sometimes still be recalled (…) Our sessions help people with dementia communicate, improving their mood and leaving them feeling good about themselves.”
Other events, such as Pauline’s Memory Bank Workshop in Shoreditch Town Hall, root them themselves even more deeply in nostalgia. Providing old coins, or movie ticket stubs for attendees to handle; bringing them back to days before they were defined by their diagnosis, and sparking lively conversation in the process.
In almost all types of dementia, long-term memory is far less affected than short-term. According to Cater, memories from 60 years ago can be far more vivid, and thereby far more real, than ones from earlier in the day.
“You hear people say ‘Oh my dad, he can remember everything he did in the war, or when he was an apprentice in the thirties, but he can’t remember what he had for breakfast’, and that’s because he really can’t,” explains Cater, “because the part of his brain doing short-term memory is gone.”
“That’s why sometimes it’s nice to reminisce and really go into the past because, for many, that’s what’s real.”
Other events take day-to-day activities, usually too stressful for people with dementia to attend, and tailor them to the needs of their attendees: giving sufferers a door back into lost activities most of us take for granted.
Hackney Picturehouse’s ‘Dementia friendly screenings’, design a day out at the cinema with the needs of sufferers at the very front.
“People that are invited are people with dementia, and their friends, carers and families,” explains Cater, creating an understanding atmosphere in which people know how to act, “and there’s usually a cup of tea and biscuits for about half an hour before the film starts”, giving everyone a chance to get to know each other and relax.
A lot of thought is put into what film to play: “Usually something old,” says Cater, “with music and singing. Something to help them reminisce and get involved.” During the festival, ticket holders will have a choice between the music of George Gershwin in An American in Paris, and 1954’s classic, Carmen Jones.
During the show, the lights are left on, helping people get around, and exit signs are kept clearly lit to relax the audience further. Chatting and signing will not be met with shushes or pleas for silence, but answers, and a round of applause; giving everyone a chance to ask what is going on when lost, and join in with the characters when the mood takes them.
“Everything involved”, says Cater, “is just very dementia friendly”: ‘dementia friendly’ being the important phrase.
In addition to giving sufferers a comforting, encouraging experience, the festival hopes to educate the wider community on how best to care for those with dementia, for the remaining 51 weeks in the year. Building, in part, on a commitment made by Hackney council in January, to “create a truly Dementia Friendly community”, and the ‘Prime Minister’s challenge on dementia’, launched in 2015, to make the UK the world’s first “dementia friendly nation” by 2020.
According to Cater, the term ‘dementia friendly community’ refers to a group of people adequately educated on the nuances of dementia. Commitments, such as these, are effectively promises to educate the public: explaining the realities of dementia, the needs of its sufferers, and dispelling the fear and misunderstanding currently so closely linked to the disease.
“Being dementia friendly is about educating your area,” explains Cater, “this could be your street, your family, or, in our instance, our borough (…) Working with people with dementia and their carers to figure out what they need to make their community an easier, more understanding, more accessible place to live.”
With a relatively young population, dementia is currently a comparatively small issue in Hackney. However, Cater believes, that laying the groundwork for a supportive community, is never a bad idea.
“There are more of us living longer,” explains Cater, “meaning there will be a higher incidence of dementia in the near future. At the moment there are about 1,300 people diagnosed with dementia in Hackney, but of course, others will be coming along.”
“It’s a very good idea that a borough like Hackney has begun to prepare,” says Cater, “and is using events like this festival to think about what a dementia friendly borough looks like.”
“It can only be a good thing,” says Beryl, “and to be honest, I can’t wait to attend.”
For assistance and advice on dealing with dementia, contact the Alzheimer’s Association on their 24/7 helpline at 1800 272 3900, or for local Hackney services, visit the Hackney Dementia Action Alliance website, or call 0208 533 0091.
For further details on Hackney’s Dementia Arts Festival, including times and locations for events, visit the Hackney Council website.