Family's struggle as Ian Fraser, from Walderslade, is diagnosed with early onset dementia aged 47
00:00, 06 May 2016
updated: 10:46, 06 May 2016
Little Tommy Fraser wants his daddy back – and yet he's right here next to him.
The seven-year-old had just started school when his father, Ian, was diagnosed with early onset dementia at the age of 47.
His condition, which can affect memory, movement, balance and speech, has deteriorated rapidly over the last two years.
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Ian, now 49, is unable to dress himself and some days he struggles even to tie his own shoelaces. Instead of playing with his father, Tommy has to help him with daily tasks in a tragic role reversal.
Tommy said: "I miss my dad, I miss him and how he used to be.
"He gets confused a lot. Sometimes he doesn’t know where stuff is.
"Sometimes when he is supposed to do something he does it wrong and it gets all messed up. Once he went outside and he didn’t know where he was going."
The family, from Walderslade, have crammed in as much fun as possible, capturing everything on video. But Ian's condition has got so bad, they cannot go out together any more.
The Frasers are joining a campaign to raise awareness and Tommy is holding a fundraising day at school today.
Early onset dementia affects about 42,000 people in the UK aged 30 to 65. But it is still rare and can be difficult to recognise.
It affects not only memory, but movement, co-ordination, balance, speech, vision and the ability to make decisions.
Wife Kelly, 40, is Ian’s full-time carer at the family home in Downland Walk, Walderslade.
She said: "Ian’s illness has had a massive effect on my life. My partner in everything, is now my second child. Sometimes it feels like I have become a single parent of two children overnight.
"When Ian was first diagnosed we tried to cram in a much fun as we could with days out and holidays.
"Ian’s illness has had a massive effect on my life. My partner in everything, is now my second child" - Kelly Fraser
"We wanted to build up as many memories as we could for Tommy.
"But now we can’t go out as a family any more because I can’t watch both Tommy and Ian."
She added: "He has gone from being my Ian, who knows everything, who I look up to and who ask for help, to not being able to do his shoelaces up some days.
"He finds it difficult to get dressed himself. He doesn’t make drinks for himself. Ian is nothing like he was when we first met.
"Sometimes I see a little glimmer of the true Ian but he is not the same."
Young onset dementia is often hereditary.
Ian’s mother Eileen passed away with dementia aged 50, and his brother Alex and sister Susan have also died of the same condition, aged 52 and 49.
The family is raising money and awareness of the condition by supporting Dementia UK’s Red Lippy Day today.
Tommy, a pupil at Maundene Primary, has got his whole school involved.
Pupils will be dressing up and holding a bake sale while teachers, including the men, will be wearing red lipstick to raise awareness.
Kelly said: "People think that dementia is about old people. But if by raising awareness we can make people realise that it is affecting young people with young families then they might donate and the money will help find a cure."
The money raised today will help pay for Admiral Nurses like Jody Howie who supports families like the Frasers.
Kelly said: "I didn’t know what an Admiral Nurse was at first. I didn’t realise it was for me.
"Everything had been about Ian and I was kind of swept under the carpet like I didn’t matter.
"Jody is like a really good friend who understands what we are going through and makes it a little bit easier. She is always there with the answers."
Jody said: "Kelly came to me straight after Ian was diagnosed. We are there to provide education, advice and support.
"The support I give Kelly has helped keep Ian at home for longer. Ian is deteriorating a lot and quickly."
Through Dementia UK, Tommy has been given counselling to help deal with his dad’s illness.
When Ian was first diagnosed, Tommy would draw dark pictures showing people with head injuries.
Jody said: "Tommy has grown in confidence. He used to be quite scared. But we have got him help with counselling.
"He doesn’t draw those dark pictures any more. He draws nice pictures for his mum."
Kelly said: "Without the help of Jody, I don’t believe Tommy would be getting the much needed support he is now.
"Jody isn’t just there to make me feel better, she is there to make my family life as good as it can be, under the circumstances, and this includes Tommy and helping him understand and process the fact, his daddy has a terminal illness."
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