Janice's story

Janice cared for her mother when she was diagnosed with dementia and now supports her husband Derek who was diagnosed with early onset at the age of 57.

In the early days of his diagnosis, his first thought was for Janice. She said: “He would get very upset and say ‘I’m becoming a burden to you, you never signed up for this’.”

Derek had become aware of memory issues when he couldn’t perform as well at work, leaving him feeling very frustrated. He was first diagnosed with epilepsy but the couple knew there was something else and after 18 months of seeing specialists Derek was finally told it was early onset Alzheimer’s.

Janice says: “Derek asked for the prognosis and the specialist said that in seven years’ time he wouldn’t be able to walk, talk or eat. We were in shock and I cried on the way home.”

The couple were visited by Beyond Dementia's dementia adviser Chris Maple who offered advice and support and referred Janice to the charity’s training course for carers.

She had attended the course when caring for her mother, and found going on it as a spouse rather than a daughter was a different experience.

“I did it again for an update and a lot of things have changed. They taught me how to talk to Derek so as not to patronise him. Rather than asking him if he remembers something I’ll give him a hint. It’s about rewording questions.

It's also good to talk to people in the same situation as me.

"The course and charity since have given us lots of information and advice and I know they are there to provide help and support when I need it.”

Chris also suggested Derek try the charity’s activity groups and he and Janice are now enthusiastic members of the Trowbridge and Seend Music for the Mind groups and Movement for the Mind in Melksham.

Before the pandemic Derek would go to the groups on his own on the bus, but lost his confidence during the first lockdown. Janice works flexibly to ensure she can attend with him, but has also bought him a tracker watch. “I encourage Derek to go out on his own. The tracker helps him retain his independence and I don’t have to worry about him.

“That said, I love spending time with Derek. Going to the groups is something for us to do together and he gets a lot out of them. He gets on really well with David who runs the music group and they understand what Derek can and can’t do physically at the movement sessions."

“It’s given Derek somewhere to go and something to look forward to and he now has lots of friends.”

Derek agrees, and admits that before getting involved in the groups he was a ‘virtual recluse’. He says: “Alzheimer’s Support has boosted my confidence. I’m now going to places I would never have gone before and more social than I’ve ever been.”