FEATURES: SIDING WITH THE VOLUNTEERS HELPING DEMENTIA SUFFERERS –
As the Alzheimer’s Society’s Side by Side service launches in Leeds, and with a need for hundreds more volunteers nationally, Laura Reid looks at how the service is making a difference.
He looks forward to visits with Bob. They are like friends now. Michael’s got something to look forward to. It’s wonderful – and after Bob goes, Michael seems to be more alive.
Ella Robinson, wife of Michael Robinson.
MICHAEL ROBINSON sips coffee from his seat beside Alzheimer’s Society volunteer Bob Bird. Michael speaks little more than a handful of words in the hour we spend at a country park cafe, but when asked if he enjoys their days out together, he is quick to offer an enthusiastic “oh yeah.”
The duo were paired with each other back in August, as part of the society’s Side by Side service. The scheme, which aims to tackle loneliness and isolation, helps people living with dementia to lead fulfilling lives by linking them with volunteers, so together they can get out into the community and take part in activities.
For Michael and Bob, fortnightly meet-ups involve going out for meals, walking in local beauty spots and visiting Yorkshire attractions such as Brodsworth Hall and the Air Museum at Elvington.
On a bitterly cold November morning, they drink warming coffee at Pugneys Country Park’s Boat House Cafe, in Wakefield.
“As we’ve met regularly, I know for instance, that Michael likes sugar in his coffee,” Bob tells me.
“I also get to understand where Michael’s at in his condition. He chats a bit more each time.
“We say a few more things. I still do most of the talking but Michael is talking more and more.”
For Michael’s wife Ella, the difference is marked. “He looks forward to visits with Bob,” she says.
“They are like friends now. Michael’s got something to look forward to.
It’s wonderful – and after Bob goes, Michael seems to be more alive.”
Michael, 69, was formerly managing director of Wakefield-based video game developer Team17, departing from the multi-award winning firm several years ago.
He was diagnosed with dementia in his retirement, in 2016, and the condition has had a huge impact on his ability to communicate.
Ella struggles through tears when she describes the life-changing diagnosis: “It was really, really devastating for us,” she recalls.
“Up until Christmas, you could have a conversation with him and it was not as bad as it is now...the worst thing is when you see your loved one and they know what they want but can’t say it. They find it so frustrating.”
For 66-year-old Ella, the Side by Side service provides respite from caring for her husband around the clock.
“If it wasn’t for volunteers like Bob, people like me would be really struggling.
“I’m a carer 24/7 and it is challenging. It’s very tiring. I love my husband and we go abroad and do a lot of wonderful things together. But if you’re caring for someone 24/7 and you don’t have anybody to care for you, you get exhausted. When Bob takes Michael out for the day, it gives me chance to catch up on things like paperwork and going out to run errands.
“It gives a full-time carer like me a break. It gives me time.
“If Michael’s here, I feel guilty for not being with him and not talking to him, not caring for him. If he’s being taken out for three or four hours, it means I can get my head down, concentrate, do what I need to do.”
In Wakefield, where Michael lives, the service has 23 people with dementia paired with Alzheimer’s Society volunteers – and there are more waiting for a match.
People can sign up to be supported by the service themselves or can be referred by family, friends and medical professionals. Funded by the charity, there is no cost for people with dementia or for the volunteers.
Bob said: “It’s very rewarding and I like to feel I’m contributing. The work the professionals do is tremendous and if I can support them in whatever way, that’s got to be a good thing.”
Bob, who lives in Holmfirth, first came into contact with Alzheimer’s disease whilst working for care home provider Anchor. “When I first started working in the care homes – and it was a long time ago – there was a lot of ignorance about Alzheimer’s and even doctors and medical professionals weren’t really switched onto it,” he says. “They’re a lot better now.
“I used to go and work in those homes where we had people with dementia so I could see first hand what the difficulties were...one of the biggest elements of people with dementia is no two have the same journey. Everybody is completely different. You can’t say because somebody has dementia, they’re going to do this or going to do that. It’s very individual. You never make assumptions.”
For Bob, who retired from the care home sector eight years ago, discovering what Michael most enjoys and responds to is often a matter of trial and error.
“Our relationship is developing the whole time,” he says. “As I get to know Michael better, I know what he likes and doesn’t like, it’s important I let him make as many decisions as he can – I don’t assume anything and never do what he doesn’t want to.”
The Side by Side service aims to help people to keep doing things that they enjoy – and try new activities – following dementia diagnosis so that they can lead more of an independent life.
The service operates in certain areas of the country, including six in Yorkshire and the Humber, and is now being launched in Leeds, with volunteer recruitment underway.
But the society hopes it can be rolled out nationally so that every person with dementia has the opportunity to access it. Nearly 1,000 people are missing out on the service around the country as there is a shortage of volunteers.
Side by Side coordinator Teresa Batty explains why the service is so important.
“It’s about breaking down isolation and getting people out into the community so they aren’t sitting down in the same four walls.
“It gives people something regular to look forward to and helps them to maintain their interests and hobbies. It’s getting them out and about meeting people and because they’re with the same volunteer every time, they can build up a relationship.”
Just three months in, and the bond between Michael and Bob is clear to see – not least for Ella.
“Bob tries to have a conversation with Michael and tries to develop confidence in him. If Michael is in his home environment, he feels very comfortable but if he’s with strangers, he feels very shy because he’s aware of what’s happening [to him].
“By being with Bob, who is outside the family, he is beginning to develop confidence and feel like yeah
I’m okay...he’s really happy going out with Bob. He’s really flourishing and seems to be so much more alive when he comes in.”
It is not just Michael and his family who are reaping the benefits of the scheme, but Teresa believes his story carries a crucial message: “With the diagnosis of dementia, you can still live well and I think that’s a really important thing to put across to people.”