‘It lays heavy on your shoulders’: sufferers reveal crushing effects of early-onset dementia

Peter Berry has welcomed the introduction of the Suffolk Young Dementia Network. Picture: COURTESY O

Peter Berry has welcomed the introduction of the Suffolk Young Dementia Network. Picture: COURTESY OF SUFFOLK MIND - Credit: SUFFOLK MIND

It is often considered as an illness that affects people in older age rather than their youth.

But now a support network is being launched to help those displaying the early signs of dementia before they reach their later years, with young sufferers describing how the condition “lays heavy on your shoulders”.

Mental health charity Suffolk Mind will launch the Suffolk Young Dementia Network on Sunday, February 17 for people aged as young as 30 who are living with the condition or are showing early traits.

It comes off the back of a six month service launched by Suffolk Mind last summer, as well as figures which show between 6% and 9% of people living with dementia are aged under 65.

Peter Berry, who was diagnosed with dementia when he was 50, said: “When I was told I had dementia, I didn’t think it was going to be that bad and I thought I could deal with it.

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“However, when you get home and think about the enormity of what the future will hold, it lays heavy on your shoulders.

“I got very depressed and down about it in the first 12 months. Me and my wife hardly told anybody. I felt embarrassed.”

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Mr Berry said one of the toughest things was a lack of support for people in his position, so he believes the new support network will be “very important”.

He added: “Peer support networks don’t just help people with dementia.

“It can actually save lives. It can save people from depression. It can save families and give people a sense of worth. It gives people something to look forward to and for some it can be a light at the end of the tunnel.”

Peter’s wife Teresa Berry added: “This has been something that we’ve wanted for so long.

“I have never met a single person in Suffolk in the same boat as we are. It’s so isolating.

“To have a group that will hopefully grow and spread would be wonderful.”

Sue Gray, Suffolk Young Dementia Network co-ordinator, said: “When you are younger than the perceived age to ‘get’ dementia, it’s frightening to go to the doctor and explore why your memory and planning abilities seem to be changing – and then possibly being told that you have dementia.

“Dementia is a life-changing condition at any age but when you are young, it is all the more difficult to take in and adjust to.

“We want people to be able to meet others in a similar situation - either face to face, via email or over the phone, and be able to exchange support and information.”

Suffolk is thought to have 12,800 people living with dementia.

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