Northern Ireland

Dementia NI: New charity to help those living with the condition

Anne Scott
Image caption Anne Scott was diagnosed with dementia aged 46 - when her youngest child was five years old

A dementia diagnosis is difficult no matter what age you are, but at a younger age it presents different challenges - sometimes disbelief.

That's what happened to Anne Scott from Antrim who was diagnosed at 46.

"People just said I was a liar," she said. "And others were even worse.

"If I'm talking to people when I'm out, they'll make jokes and ask if I'll remember them when I come back from the bathroom.

"It's quite hurtful at times."

'Stigma'

Liz Cunningham was two years older than Anne when she found she had the condition.

Image caption Liz Cunningham was diagnosed at the age of 48

Her diagnosis was met with some relief though because she thought she was going mad.

"At least I knew what it was," she said. "Before I was diagnosed I became this silent person who didn't leave the house."

Dementia NI is a new charity made up of people with dementia trying to support one another.

Image caption Dementia NI is a new charity that has been established

Founding member John McErlane says they want to break the stigma.

"People don't understand it and can be impatient. We want to break down those barriers."

He says the disease has changed his personality but the charity has been a vital focus.

"People say to me 'John, why do you make plans?', but I say I have to otherwise life wouldn't be worth living."

He says he has good days and bad days.

Image caption John McErlane says the charity has been a vital focus

"A good day would be asking what am I going to do today? Where can I go?

"Making plans for myself and still knowing what day it is, what time it is and knowing the people around me, that's a good day.

"I'm still at the stage where I know what's in front of me but I've just accepted that."

'Devastated'

Acceptance has been difficult for Anne Scott.

Doctors initially thought she had a brain tumour.

"I was completely devastated. How could I have dementia at my age? I have kids and I thought who is going to bring them up?

"Especially my youngest daughter who was only five when I was diagnosed.

"I kept thinking I'm going to miss the special moments in her life.

"Sometimes she'll ask me will I be here when she grows up? That's very hard."

Liz treasures the memories she has and says she now feels better about the future - no matter what that brings.

'Not scared'

"I was at the stage where I was going to go to Dignitas, but then I thought how selfish, dragging my family over there to put myself out of my misery," she said.

"My doctor has reassured me that I won't die in a corridor, or in a ward where people don't know what dementia is.

"Things have changed and I'm not scared any more."

Dementia NI can be contacted on 02890 68 67 68

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