Knaresborough couple opens up about heartbreak of early onset dementia to help others

Ken and Linda Barnes.
Ken and Linda Barnes.

A Knaresborough couple has opened up about the heartbreak of early onset dementia to help others who are going through the same thing.

Ken Barnes was diagnosed with early onset Alzheimer’s three years ago at the age of 53. Having been a builder for 30 years, he found he couldn’t measure things, had forgotten how to tell the time, and couldn’t keep track of dates.

Ken and his wife Linda are passionate about raising awareness of the lesser known and lesser understood aspect of the disease - the knowledge that it can affect younger people as well as the elderly.

To generate vital funds for Harrogate district charity Dementia Forward which has provided deeply-valued support to the couple over the years, a 5-a-side football tournament bearing Ken’s name will be held at the CNG Stadium tomorrow, Friday, from 12pm onwards, organised by Harrogate energy supplier CNG.

Ken and Linda would love to see as many readers as possible turning out to support the event, where there will be a raffle and collection buckets for Dementia Forward.

Linda said: “Although it bears his name, this tournament is not about Ken, it is for all of those with early onset dementia in North Yorkshire. We are so well-supported by Dementia Forward, but in the early days we were truly lost.

“The toughest thing for me is that dementia is a thief - in our family it has stolen a son who supported his elderly mum and dad, a dad with superior practical and listening skills from his daughter and son, and a husband who can no longer have a fluent conversation with his wife.

“But worst of all, a grandpa whose experience and knowledge is denied to his grandchildren.”

Perceptions that dementia only affects older people can still linger, and Ken and Linda said they are on a mission to open people’s eyes to what they describe as the cruel and painful realities of the disease.

Linda said: “It’s a generational thing, you often just expect it to be older people who live with dementia. When Ken was first diagnosed, I didn’t know anybody who had it at his age. You just don’t expect it to happen to you, and when it does, it takes so much away from you.

“You wouldn’t be able to tell by just looking at Ken that he has it - there are lots of people with invisible illnesses and disabilities, and everybody should learn to respect and understand each other. You don’t know what’s going on in someone else’s life. Looks can be deceiving, and we feel that it is our mission to try to help others understand what this disease does.”

Ken said: “I would like to make it easier for other people who are going through this - if we can help even just one person by speaking out and sharing our story, then it has all been really worthwhile.”