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THE family of a woman living with Alzheimer’s, whose first language is British Sign Language (BSL), are delivering deaf awareness sessions to carers due to a lack of accessible support in the area.
Local woman, June Fenlon, who was diagnosed with Alzheimer’s in 2012, lives at home with the support of her husband, Brendan, who is also her main carer. As the disease has progressed, Brendan has struggled to find local support in BSL that allows him some time off from his caring responsibilities, but also someone who can support June in her own language.
In January, the family started using local care home, Brookside, for short respite breaks. To help staff communicate with June, one of her four sons, Matthew Fenlon, who is profoundly deaf, visited the care home last month to deliver a workshop on deaf awareness, which covered basic communication skills and useful BSL words and phrases.
“I wanted to help the care home to raise their deaf awareness,” explained Matthew. “This will benefit my mum, but it will also benefit the people who work at Brookside and other people they might support who use sign language.”
About the workshop June’s husband, Brendan said, “What impresses me about Brookside is that they acknowledged that there were problems with communication and were willing to do something about it and learn.
“I know that it will not be perfect, but ultimately my priority is that June is safe and I know that she will be safe and well looked after there.”
Home manager of Brookside, Jamie Carter, said, “Staff are really enjoying the British Sign Language lessons. Not only will these workshops ensure visitors to the home who use BSL will be supported and included in the day-to-day life here, but these lessons also promote a greater understanding of how people who use BSL communicate.
“We want to make sure everyone in the community feels our service is accessible, and this is the first stop to offering an inclusive service to people whose first language is BSL.”
The BSL workshop is one solution to a number of problems encountered trying to access support in the six years since June’s diagnosis. “There are many groups and services in the area that offer support to people living with Alzheimer’s and their carers,” said Brendan. “For example local charities offer dancing and music classes, which are very popular. We tried this, but there wasn’t much support to help June to join in. As she couldn’t follow the class and with no interaction, there was no incentive for her to want to go.
“The groups don’t have any knowledge of how to help us as they have had no experience of this before.
“We were also offered a sitting service, providing company for June so I could take a break, but the volunteer didn’t know sign language. She couldn’t communicate with June and there was no way that she was going to be able to, so we didn’t go ahead with the service.
“Instead, I took control of the budget from Wiltshire Council, who pay for the sitting service, and now pay for friends and people who can communicate with June to visit and sit with her so I can have a couple of hours to myself. I have to administer the wages and holiday pay for this, which is a pain, but you get used to it.
“Everyone has goodwill to help, but there appears to be no answers to how someone like June can be supported. There appears to be nothing in the area.
“I would love to know, in Wiltshire, how many times services have encountered someone like June who is deaf and has Alzheimer’s and what provision they have put in place.
“We can’t be the only ones in Wiltshire with this problem. Hopefully more services like Brookside will want to explore how they can overcome these communication challenges and make their services more accessible.”