A woman diagnosed with early onset dementia is urging fellow sufferers to join her in a new walk and talk group.
Glenda Roberts was in her fifties when she was diagnosed with the condition, after her family realised that her memory was failing.
She was eventually unable to work as a healthcare assistant and lacked confidence to drive more than a short distance, so found being at home all day in a small village on the Llŷn peninsula very isolating.
Glenda is among the new recruits to a group that aims to alleviate similar problems of loneliness among those with dementia, as well as promote good health.
The weekly walk through the Gwynedd countryside has been launched by dementia specialist nurse Mari Ireland, who is based at Betsi Cadwaladr University Health Board’s Ysbyty Alltwen in Tremadog.
Mari is encouraging the group members to chat as they ramble, and so share their concerns of living with the condition.
Glenda, who is now 60, said: “It is so very scary when you first get that diagnosis of early onset dementia, when you are still in your fifties. A lot of people just ignore it or try and hide away but you have to just accept it and try and sort things out for yourself as best you can.
“You have to keep going and get on with your life. I’ve tried all sorts of medication as I wasn’t able to tolerate the tablets, though I know that many people have seen an improvement with them. I use patches now and they are working for me. It isn’t going to go away and I still have problems which can be very frustrating but it is under control.
“Sometimes I can see something in my mind but I just can’t find the word for it and that can make me frustrated. It’s like living in a fog or like a jigsaw that always has pieces missing.”
Mari previously ran a similar scheme in Powys and hopes the new walking group will prove just as popular.
“The feedback we had from the other group was that it was great to meet others and talk about their situation.
“It’s an excellent way of bringing people together and doing something at the same time as finding that peer group support.
“It also gets people out of their homes and we always make sure there’s somewhere to stop for a cup of tea or coffee.
“The group is aimed at the whole family, not just for people with dementia, because we want it to be inclusive, whether you had a diagnosis or not. It’s a great way of getting carers together too in a more natural way
“A lot of people coming along will be much fitter than me so I just hope I can keep up. It’s great for me to catch up with them all too – I can probably get through the equivalent of four or five appointments with people while we’re out and about.
“We just have to keep our fingers crossed that the weather is on our side too.”
Glenda, who is married to Ifor and has two grown up daughters, is a great advocate of keeping active and regularly attends the gym, goes to art classes and even took part in a danceathon, so the walking group will be a welcome addition to her schedule.
But she did not always have this positive and active approach and found it difficult to accept her situation at first.
“It took a couple of years to get my diagnosis,” she explained. “So by the time I did it felt better in a way as I’d had every test going and still didn’t know what was wrong, and that was a very worrying time.
“My family first started to notice things like when I’d be supposed to be meeting someone and they’d be left waiting for me for hours as I’d forgotten.
“Nobody thought about dementia as I wasn’t old enough. I was still working as a healthcare assistant at Ysbyty Bryn Beryl, Pwllheli, but I knew something wasn’t right – I just knew I wasn’t right.
“I was forgetting things and making mistakes – not serious ones, just silly little things. I went to the GP and then a consultant and saw a psychologist, and had every scan under the sun.
“So by the time I got told I had early onset dementia, at least I knew what I was dealing with.”
At first, living in Llannor near Pwllheli, and forced to stop working, Glenda was terrified of going out by herself as well as angry that she had dementia.
“It didn’t seem fair,” she said. “I’d spent 17 years looking after other people at Bryn Beryl Hospital, then this went and happened to me.
“I was scared too, so scared. I was scared to go out, scared of crossing the road, scared of not knowing my family – and I’ve never been scared of anything in my life.”
Glenda has grown in confidence as her treatment, along with support from BCUHB nurses and specialists have helped her organise her day to day life.
She has numerous timers in the kitchen to help as she cooks, and relies on a large memo board in the kitchen to remind her of things she is doing.
She has also become more open about her dementia and found it a positive step saying: “Once you tell people they are fine. They tend to slow down and help you when you get stuck – one time the bus driver, who knows me, told me where to get off when I had got the places muddled up.
“There is no point suffering in silence as there is so much support out there and Mari and the team have been just brilliant.
“I think this walking group is a wonderful idea and it will be great to give people the chance to talk to each other and realise there are plenty of us in the same boat.
“It should be nice for the family members too, who are also coming, as they can share ways in which they have helped and ideas that have worked.”
