Carers take pride in empowering people with new dementia support service
A group of dedicated carers has set up a non-profit centre to provide activities and companionship for dementia patients, and respite for their carers, after a Cardiff day centre was closed. John Jones reports
Four carers are setting up their own dementia support service after a day centre closed, leaving patients and exhausted families in Cardiff without respite care.
The Alzheimer’s Society day centre at Oldwell Court in Penylan closed in October after the service was suspended in March 2020 and did not re-open again due to coronavirus restrictions.
The loss of the centre, which supported and provided activities for around 65 people with dementia while also taking pressure off their carers, has been huge – with many families struggling to replicate the service they received at Oldwell Court.
But while the old centre has shut its doors, some of its former employees are determined to support those who relied on it by setting up their own service – operating initially out of a church hall.
Marion Hand, Michelle John and Carol Mitchell were all carers at Oldwell Court and say they were “absolutely gutted” when the centre closed for good – but they knew they couldn’t sit idly by as those they cared for struggled with the lack of respite.
Just a few weeks on from the centre’s closure, they and another colleague, Gareth Bishop, are now set to start running their own non-profit service at St Thomas’ Church in Birchgrove, giving carers a break for two and a half days a week.
Starting small means there’s a lot of challenges to overcome, but the group are determined to get started and help those who need it most.
“We’re so passionate about rebuilding this service because we all know how important it is,” said Carol. “My dad had dementia and that totally changed everything for me, I was his main carer.
“When he died, I knew I had to give back and help people who have been in my position. I know how frustrating and upsetting it can be, but being able to help these people who really need the respite is so rewarding.”
Oldwell Court had been at risk of closure for many years, with more than 1,000 people signing an online petition to save the centre after Cardiff council proposed to withdraw funding from it in 2016.
Those who used the service said closing the centre would “take a huge toll,” with Gavin & Stacey star Ruth Jones among those who backed the campaign to save it.
The level of public support that the centre received was of no surprise to those who worked there, who described it as a “little community”.
“It wasn’t huge, but it absolutely did the job,” said Marion. “Everybody loved it – people would be able to relax, get some lunch and there would be entertainment, jigsaws, table tennis, pool, all of that.
“It was very free and we could be ourselves, if someone wanted a cuddle they’d get a cuddle. It was a very happy, warm environment.”
“We used to do a poetry week,” added Michelle. “And a lot of people loved that, some of those we were looking after really got into it, others just wanted to sit and watch.
“There was no judgement anywhere, everybody treated each other the same and were accepting of everyone’s condition. We were just empowering people.”
“When they came through that door, they became one of us, they were like our mates,” said Carol. “I think that’s why everyone loved Oldwell Court, and why it was such a blow when the service ended.”
On October 18 the Alzheimer’s Society “took the difficult decision” to close the service permanently after it had been suspended for more than 18 months, a move which the group said was “devastating”.
“We were hanging on a string for a while,” said Marion. “We knew that it was always going to come but we didn’t want it to. The Alzheimer’s Society have decided they want to go down a different path now, and they’re amazing with research and providing training – but I couldn’t understand part of the decision.
“Why weren’t they thinking about the people who are suffering with dementia at the moment? Why break something that’s working perfectly? But that’s just the way it is.”
The outbreak of coronavirus not only saw the service suspended, but – as Michelle suggested – contributed to its permanent closure too.
“We were gutted to hear it was closing,” she said. “Back in 2016, people were signing the petition from all over the world, but I think Covid dealt it an extra blow this time around. People weren’t as involved and the support probably wasn’t there as much – in normal circumstances I have no doubt that the support would have been as huge as it was before.”
After the service was suspended, the carers at Oldwell Court provided support to service users with regular welfare calls, and quickly realised that Covid had made the difficulties of caring for someone with dementia even harder.
“We were put on welfare calls and phoned them every week,” said Marion. “We were there for them, of course we were, even as late as 10pm – because they had nowhere else to turn most of the time. Being in isolation means they had little to no respite.
“We were listening to the tears and you could hear the anguish in their voices, these people were at the end of their tether. A phone call often didn’t feel like enough – they were really hoping that Oldwell Court was going to open again.
“Families were really upset about it,” added Carol. “They were really missing having that physical, in-person support. One of the families we worked closely with said they didn’t want a phone call, they wanted a place where their loved one can be looked after. And we all knew that that’s the very least they deserved.”
The group had previously discussed setting up their own respite
It was very free and we could be ourselves, if someone wanted a cuddle they’d get a cuddle MARION HAND
service while they were still at Oldwell Court, but when the centre’s closure was confirmed, they knew it was the time to act.
After securing a space at St Thomas’, they are now looking to get the service up and running, with their overwhelming emotions a healthy combination of excitement and trepidation.
“It’s really daunting,” admitted Marion. “But we can’t wait to get going. We’d thought about it for a while and when Oldwell Court closed we thought, what’s stopping us now? I don’t know if we thought it would actually happen, though.”
Renting out a church hall comes with its challenges, the group admits, but they have big ambitions for their new space – and the future.
“It looks very bare and cold at the moment,” Marion continued. “And everything that we put up, we have to take down again, which does make things a bit trickier.
“We could really do with some armchairs, we’ve got plenty of other chairs here but you can’t expect anyone to sit on them for six hours. Because we can’t keep stuff here, it would be really hard to move big chairs around – but hopefully we’ll find a solution from somewhere.”
“Our ultimate goal is to have our own day centre,” added Michelle. “Here, it’s about making sure families have somewhere to drop off their loved one and know that they’re safe and getting some stimulation, entertainment and care. Giving carers that muchneeded rest is so important too.”
“We’ll make it look homelier, like it was at Oldwell Court, we’ll get some things for entertainment in and some wall art that we can put up and take off easily. It will be a bit of a challenge, but I know we can do it.”
The support the group has received from the families they are helping has been phenomenal, Marion says, but the group know that help from the wider public is essential to helping the service grow.
“They’re delighted that we’re doing this, they really are,” she said. “Everybody is rooting for us, the support for us that is out there is amazing – and that’s because it’s a service that is so badly needed.”
“We’re not in this for profit,” added Carol. “We’ve put our own money into securing the first two months’ rent for this place. We just want to care for these people and make a difference because we know how hard it can be.
“We are relying on public support, whether it’s people providing chairs, entertainment, whatever. It’s so important that people know this service is here and every little helps.”
Cheryl James, Alzheimer’s Society Cymru’s area manager, said: “The Oldwell Day Support service was suspended in March 2020 as a result of coronavirus restrictions. We made the difficult decision to close the service permanently on 18 October, 2021. It did not reopen before that date as coronavirus restrictions were still in place.
“Our priority is to support people affected by the closure, and we remain committed to supporting people affected by dementia in and around Cardiff.
“Those who previously attended the day service continue to receive support in other ways, either through our group services Singing for the Brain, Carers Group and Memory Lane Activity Group, or through one-to-one support from our dementia advisers.
“Our attention right now is focused on helping people affected by dementia through the coronavirus crisis, while ensuring we are best placed to deliver what is needed most by people with dementia for the future.
“Alzheimer’s Society Cymru can’t and shouldn’t try to do everything. We need to focus on what people with dementia tell us they want most (which is information, advice and one point of empathetic contact from people who understand dementia to guide them from the point of diagnosis through to end of life) and what we can uniquely deliver whilst reaching more people in Wales.
“We are responding to this demand with Dementia Connect, our new personalised support service for anyone with dementia, their carers, families and friends.
“We’ll connect people to a whole range of dementia support, by phone, online and local face to face, so they’re only ever one call or click away from help.
“We are here for anyone affected by dementia through our Dementia Connect support line on 0333 150 3456, or on our Welsh-speaking support line on 03300 947 400, as well as on our website (alzheimers.org.uk) and our online community, Talking Point, both available 24/7.”