When you care for someone with dementia, it can be hard for other people to understand the impact it has on your life. But in Putney, just a stone’s throw from the River Thames, there’s a monthly opportunity for carers to get together to support each other. The Sunflower Dementia Café is a place to make friends, share worries and even smile at the challenges of life.
“None of the sinks in our house have any plugs now,” says John Shirbon. “It’s the only way to stop the house being flooded because my wife will forget that she had started to run the water.”
Just five years ago John and his wife, Ursula (pictured), were running a Yoga school in Tooting. Since then, Ursula has been diagnosed with Alzheimer’s and vascular dementia and requires round-the-clock support.
“It’s been a very stressful time,” says John. “Following a care assessment, Ursula had a week’s residential care and I got some respite. But although it helped me to unwind and refresh my batteries, I felt guilty when she was away.”
Everyone in the group recognises the mix of exhaustion and guilt that comes with being a long-term carer. Michelle* and Honore* have family abroad but travelling with partners with dementia is almost impossible.
The café gives people with dementia so much pleasure and they are so animated afterwards”
“My husband is a lovely man, but he has had dementia for 10 years now and it’s made him lose his inhibitions,” says Honore. “I couldn’t even think of travelling with him now but if I leave him with a carer he can be abusive and insulting. He needs to be looked after 24-hours-a-day.”
The friendly and relaxed atmosphere allows carers to talk frankly about their experiences without fear of being judged.
While the carers are chatting in the lounge, their loved ones can enjoy a programme of gentle activities, many of which are music related. This afternoon the Wimbledon-based Songs on Wheels group are putting on a nostalgic singalong – from music hall favourites to Shirley Bassey.
Laura Breadon, a carer support and development officer, manages the Sunflower Café for the Wandsworth Carers Centre which has been responsible for the project since 2014. She says the get-together has a transformational effect on people with dementia, especially when it involves singing.
“We try to find out as much as possible about an individual’s background so that we can best support them,” she explains. “The café gives people with dementia so much pleasure and they are so animated afterwards. It’s mentally stimulating, and it gives them someone new to speak to.
“The carers say that getting together is a real lifeline. Most of the time they are in a one-to-one situation and it can be very isolating.”
It is a marvellous opportunity to meet with people who understand what you are going through”
Libby Asher, who leads the Songs on Wheels troupe, says that familiar tunes and simple melodies have a unique associative power to engage people who, because of dementia, normally seen unresponsive.
“Things that have been learned when you are young are fixed in your heart,” she explains. “People like singing. It’s a group activity and it makes people feel good. We always get the best response when we make eye contact, and we can see their appreciation. Even a person who may not be able speak coherently is able to sing along.”
The pandemic was tough for everyone but especially for anyone with dementia
As the afternoon café ends in smiles and fond farewells till the next time, John Shirbon loops his arm through Ursula’s and leads her gently to the door: “The cafe is a marvellous opportunity to meet with people who understand what you are going through and what you are dealing with,” he says.
“The pandemic was tough for everyone but especially for anyone with dementia or supporting someone with dementia. It gives us something to look forward – it feels like a lifeline.”
The Sunflower Café is held on the second Saturday of each month at Mount Court in Putney and is part of Wandsworth Carers Centre’s service, jointly funded by Wandsworth Council. People living in the south of the borough can also visit the Iris Dementia Café at St Luke’s Church in Balham. Both cafes begin at 2.30pm.
* Michelle and Honore are not real names, their stories have been anonymised.