Let’s open dementia cafes to help keep sufferers active
Her mother’s battle with Alzheimer’s inspired Emily-Jane Stapley to raise funds for a network of meeting places for the country’s 850,000 elderly victims and their relatives
IT WAS an anguished telephone call from her father a few years ago that prompted Emily-Jane Stapley to embark on a fundraising mission to build Britain’s first designated Dementia Cafe. “He was really upset and what he told me really shocked me,” says Emily-Jane, whose mother Joan, 79, had been diagnosed with Alzheimer’s five years earlier.
“He confessed to me that he just left mum in front of the television all day, every day because he was so overwhelmed by caring for her, doing everything from washing, cleaning and cooking to dressing her. I was living in London and working hard so wasn’t aware of what was happening on a daily basis.”
Emily-Jane, 36, who is the cofounder of a recruitment business, said the call spurred her into action. She returned to the family home in Thorpe-le-Soken, Essex, suspecting rightly that her mother’s condition had deteriorated rapidly since she’d last seen her.
“I spoke to a neighbour who told me about dementia cafes, or memory cafes as they are sometimes called,” says Emily-Jane. “They are run by the Alzheimer’s Society or local charities, mostly in church or village halls.”
She and her father Tony took Joan to a cafe: “Everybody was really friendly and very kind to mum but after speaking to some volunteers it was clear they encountered many obstacles.”
Chief among them is the reliance on hiring the venue, which means that meets have to be cancelled if the room is not available, often at the last minute. Many venues are not accessible for wheelchair users which excludes a large number of elderly dementia sufferers.
And Emily-Jane points out that church and village halls, built to amplify voices, have the wrong acoustics for dementia sufferers. “I didn’t realise before we took mum to the cafe about the impact of noise on sufferers. They are unable to block out ambient noise or loud conversation and therefore cannot concentrate on the person sitting in front of them.”
Emily-Jane tried taking her mother to regular cafes, choosing ones that were small, quiet and cosy. “It was fraught with problems. Unless I went with someone else, as soon as I went to the loo or was in the queue to get drinks, mum would wander off.”
It was these experiences that prompted Emily-Jane to start fundraising to open a designated Dementia Cafe. The demand should certainly be there. According to figures from the Alzheimer’s Society there are 850,000 people with dementia in the UK, with that total set to rise to more than one million by 2025.
“My vision is for the cafe to be split in two, one side will be a regular cafe where customers buy drinks and food which in turn pays for the other side of the cafe which is a space for dementia sufferers and their families,” she says. “If the business model works my idea is to roll them out nationwide.”
Emily-Jane’s cafe will focus on the small detail which she hopes will make a difference. “The acoustics will enable people to hear what the person next to them is saying. There will be an entry system so that family and friends can relax in the knowledge that their loved ones cannot wander off. The cafe will also have full disability access.”
Matters came to a head one day for Joan and her family when she disappeared. “I was living in London by then and mum must have decided to come to visit,” says Emily-Jane. “She was trying to get on a train but got lost in woodland and was eventually found by a police helicopter.”
JOAN’S GP instructed the family to lock her in – advice which incensed Emily-Jane. “I told him that I would not lock my mum in but unfortunately then she went missing again and fell in the road and broke her wrist.”
It is a far cry from the bright, independent working woman Joan used to be. A private secretary to a stockbroker in the City of London she spoke several languages. Tony, 77, is no longer able to care for his wife and so she has recently moved into a care home, back in her native East End.
“Mum is a proper Cockney,” says Emily-Jane. “She was born in Mile End so her life has come full circle and she is back where she began.” In recognition of her mother’s roots, Emily-Jane wants the first Dementia Cafe to be in Docklands, close to where she works.
With a budget goal of £500,000 to either build or rent and refurbish an existing space EmilyJane is hoping that a philanthropic investor will step in or they can raise the £5,000 a year necessary to qualify for charitable status and attract government funding.
Emily-Jane has raised £2,200 so far with a variety of fundraising initiatives such as craft sales at fetes and donated prizes from local businesses. She has a number of fundraising projects in the pipeline, including a sponsored 2km swim in Switzerland and she is determined to fulfil her goal of opening the Dementia Cafe by next year.
“The longer someone with dementia can remain active, the more chance there is of slowing the disease,” she says. “If those who can get out do so by coming to the Dementia Cafe as often as they can then it could potentially hold off going into care.”
To donate to Emily-Jane’s fundraising page or for more information go to justgiving. com/crowdfunding/emilyjanestapley-2/ or dementiacafe. co.uk/donate/