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Tea and sympathy

For those with dementia and their loved ones, a café with a difference is providing a lifeline in a confusing world. Emily Jupp goes to visit
  • @EmilyJupp

The first rule of the memory-loss café is you must tell as many dementia sufferers as possible about the memory-loss café, and hope that a fraction of them will actually remember it. Considering its target market, getting the word out about the new, much-needed service in Southam in Warwickshire, to support people with memory loss and their carers, has been difficult. It doesn't help matters that the name itself is still under debate.

Moira Keddie, who cares full time for her mother, says: "I tell people it's a café and they say, 'Oh, there are loads of cafés already in Southam. What do you need another one for?' They don't understand what the point is." Eileen Picken cares for her husband, Richard, who has Lewy-body dementia, which is like a mix of Parkinson's disease and dementia. "You've just got to face up to reality. There's no use hiding it by calling it something else. It's for people with diseases that cause memory loss, and their helpers, to get together and moan about it."

The Dutch psychologist Dr Bère Miesen pioneered the idea for an "Alzheimer's café" in 1997. In his research, Dr Miesen found talking about memory loss, even between close couples, was often a taboo topic. He tried to create a forum where discussion became possible, and the café, which was empirically shown to improve mental well-being, was created. Alzheimer's cafés have existed in Britain since 2000, but this new project is more of a therapy group than a café and the people here have a wide range of problems relating to memory loss, not just Alzheimer's. It's part of a deliberate move to take Dr Miesen's template and add other elements. The project is run jointly by Age UK, the Alzheimer's Society and Orbit Heart of England (a property-management company), and if successful, it could be rolled out across the country.

"They all have different problems and different needs at the beginning stages," says Orbit's living-area business manager, Rebecca Davies. "They don't talk much, but we think the groups do help, they must help, because they bring people together."

"My one has dementia," says Dorothy Warner, nodding to Rex, her husband, who munches placidly on his third chocolate biscuit in a row. "You have to watch them all the time. Rex and Richard come here with us because we haven't got anywhere else to put them! We can't leave our husbands alone, as they tend to wander off," Dorothy laughs. "Rex also forgets he's eaten and just keeps eating. He loves choccy biscuits. Sometimes in the night he sneaks off and you find choccy-biscuit crumbs in the bed… and sometimes even sticky marmalade." She fixes Rex with an expression of mock severity. Rex nods solemnly in agreement, and then Dorothy bursts out in giggles. "If you don't laugh with them, you'll cry."

The venue for the memory-loss club has a sense of existing outside of any particular time or place. The large windows frame a verdant view, while inside, the wood-panelled sloped ceiling evokes a ski lodge. Porcelain plates adorn the walls, with images of badgers, dogs and woodland creatures. At least 30 high-backed, mismatched comfy chairs are scattered across the space. The retro feel may be deliberate. A new scheme in Weesp, near Amsterdam, provides a village for people with degenerative brain diseases; it is designed to feel "familiar" so as to reduce anxiety in its guests. This lodge may be based on similar principles. Although large, it has the distinct decor of a grandparent's living room.

Guests of the club are encouraged to buy their own tea and coffee, rather than being served at their seats, and each session has a section where someone will give a talk about a topic relevant to the carers. As the club grows, they intend to add music, quizzes, games and dancing to the itinerary, to stimulate the memory-loss sufferers, and remind them of happier times. Today's talk, given by a local solicitor, is about the importance of making a will while you are still compos mentis. "When's my birthday?" interjects Rex. Dorothy gently reminds him of the date, and turns back to chatting with the other carers. These groups are important, she says, because, as Dr Miesen predicted, they allow the carers to meet other people in a similar position, and discuss their worries. Carers are often a relative or partner of the person with dementia and the experience can feel very isolating.

Fiona McFall, area scheme manager for Orbit Heart of England, who drew up the proposal for the project, spoke to people in Orbit's housing schemes, and found that 14 per cent of them were living with some degree of memory loss. Feedback from elderly tenants also showed that they fear dementia. "My father is in the later stages of dementia," she says. "I attended a similar group with him when he was in the early stages and it was like a lifeline. When a relative gets dementia, it can feel like you've lost them – it's like they've died. When I took him, he went very quiet, but you could see the difference in him; he was always very content and settled after we went. He was a leading factor in my choosing to set up the group."

Coverage of dementia support groups in the country is quite sparse. The Alzheimer's Society provides around 138 groups of this kind around the UK and several more are run by local authorities or other charities, but there is a clear need for even more of them. People aged over 65, who are the most prone to suffer from degenerative mental diseases, also have difficulty travelling long distances to get to a support group. Linda O'Sullivan, a freelance service-development consultant who works with Age UK and Orbit, explains that couples sometimes have to split up in order for one to move somewhere that offers support for their illness. "It's really upsetting when people have to split," she says. "Before there was a service here, one couple I know split up and they now live in different places. The wife stayed here. She still sees her husband occasionally when her family take her to visit, but it's not very often."

The carers here say their sense of isolation has become more severe as their husbands', wives' and parents' conditions have deteriorated. "At £16 an hour for a carer you think twice about going out anywhere," Moira says. "If you are earning £100 a week or more or you get a private pension that gives you that same amount, then you don't get Carer's Allowance. If I got some allowance I would use it to get someone to help out so I could leave the house and visit my son occasionally. But because we've saved up, we're penalised. So I say don't save – spend it all!"

"The day I turned 60," Eileen says, "Richard became ill. We had been saving for a comfortable retirement. Everything I had saved was then spent on his care. I don't believe in living off the state, but they should help."

"It's like being trapped," Moira says. "The local council says, 'Get your neighbours to drop in.' But you can't ask. They wouldn't know how to deal with it. We could ask a family member but we're a long way from home, and besides, I can't imagine our children helping them to go to the toilet."

For many of the carers, the memory-loss café, or whatever name they finally decide on, is their only chance to get out of the house and speak to someone other than their ward. "You come along and meet people and find out you're not as bad off as you thought," jokes Eileen, while Rex asks for yet another chocolate biscuit.