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Diagnosed with dementia when young

Sunday 2 February 2014, 15:39

Louisa Compton Louisa Compton 5 live Daytimes editor

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Brain

Approximately 800,000 people in the UK have dementia. The vast majority of those are diagnosed after the age of 65 – but around 17,000 people have been diagnosed with dementia in their early 60s, 50s, 40s and, in some cases, 30s. On Tuesday 4 February at 10am Victoria Derbyshire will broadcast from the country's only dedicated day support service for young people with dementia. It’s called the Young Onset Dementia Centre and throughout the programme we’ll hear from some of the people who use its services and their family and friends.

One of the people you’ll hear from is Ronnie Lomax. He’s 53. He was diagnosed with a type of dementia 12 years ago at the age of 42. He wanted to write this blog for 5 live about living with dementia:

Dementia.

"Forgetting names, forgetting faces. That’s something that happens to old people isn’t it?

"I was diagnosed with dementia 12 years ago. I was 42.

"I was the Duty Manager at a big leisure complex in Wythenshawe in Manchester, a Club Coach for the British Judo Association, I coached weight training and I was active and respected in my local community. I worked as a special constable. I was fit.

"I’m married to Elaine and we’ve got four children and 11 grandchildren. In 2000 I noticed that simple tasks were becoming more difficult. Like remembering phone calls I had minutes before, problems spelling words I knew I knew, and remembering discussions I had with people.

"I woke up one morning in 2002 with no feeling down my left side. I’d had a stroke. I couldn’t communicate, I had to retire from my work and after two years of speech therapy and occupational therapy I started to return to normality with the support of my family.

"When I eventually got an appointment to see a neurologist I was told my brain scan was clear and I probably had Munchausen’s Syndrome, or it was all in my mind.

"My family and I were totally dumbfounded. I was still forgetting things. I started questioning myself. Was I ill or was the doctor right?

"I had been going to a memory clinic and when I told them what the doctor had said I was sent for a SPECT scan - single photon emission computed tomography.

"I was told that I had vascular dementia - the second most common form of dementia after Alzheimer’s disease. It is caused by problems in the supply of blood to the brain. My dad died when he was 45 and my brother when he was 29. I didn’t realise that it was all to do with a family history of really high blood pressure.

"After we got the diagnosis I had many mixed feelings. I was angry because of the missed diagnosis.

"Worried about what was going to happen next. Guilty for what my family had gone through – especially my wife.

"Then I felt relieved – in part – because there was a medical reason behind my changes.

"So what is it like living with dementia? We are our memories; dementia takes away your memories, and you, a bit at a time.

"It can get quite upsetting when you forget names, especially those close to you. Grandchildren and other family members and friends.

"Knowing what you want to say, or how to say it can become challenging and difficult for the people around you. Those who know you start to fill in words or correct what you have said.

"On a daily basis you feel that you are at war with yourself hoping for clearer days ahead. From a memory that has come to the surface and then gone. Wanting to say something and then it’s gone. Trying to capture a picture, a thought - then it fades away. We have to live for the moments we are in. Because our history of life, who we are, is slowly draining away.

"I love coming to the Young Onset Dementia Centre in Manchester but I wish we could be called ‘young people with dementia’ instead. People would understand that better.

"I’m bidding for money to get equipment here like a flat screen smart TV, laptops and a colour printer. I’m going to be using the service for years. I need to do this while I still can.”

If you’ve got a story to share do email victoria@bbc.co.uk

Victoria Derbyshire visited the Young Onset Dementia Centre on Victoria Derbyshire's programme. Hear the podcast of the programme here.

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  • rate this
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    Comment number 1.

    We need lots more young people with dementia to do as Ronnie is doing - talk about their situation, be open, live their present life fully - so helpful to other people with young onset dementia and their families, and essential if we are, as a society, to ensure that there is really good support for anyone touched by this in the UK.
    17,000 is an underestimate of those diagnosed - and many of those struggle for adequate information, advice and support. So services like the Young Onset Dementia Centre in Manchester should be praised, and lets hope services like that multiply. YoungDementia Uk is planning to encourage better understanding both of young onset dementia and easier ways of sharing what works and where with the launch of a new UK website for younger people with dementia and their families, whereever they live.

  • rate this
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    Comment number 2.

    Hi my dad is ronnie who has just spoke about dementia im very proud of my dad he takes everyday as it comes and cintinues to be the best dad and grandad we could all ask for we are very proud of u dad and iblove u lots xx

  • rate this
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    Comment number 3.

    I care for my wife who has young onset dementia. She was first referred to the memory clinic in 2000, aged 51.

    I'm very glad that this programme is highlighting issues around dementia and particularly deling with young onset dementia which is more common than many people think.

    I feel that one of the most important points to emphasise is that when it comes to dementia everyone is different and generalisations about the condition can be very unhelpful. It's great that people like Ronnie are able to communicate so effectively even after living with the condition for so long. Others are not so lucky.

    I have a blog which explains some of the realities of caring for someone with dementia and also shares information:

    http://adventureswithdementia.blogspot.co.uk

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    Comment number 4.

    Hi, Ron is my brother-in-law and I am so proud how he has coped with his vascular dementia. He takes it day by day, will do anything for his family, and to raise awareness of his condition, more people need to know that it is not just the elderly that have this horrible disease and we do really need more centers set up for young people with dementia. Keep up the good work Ron we will get there one day with more support, which hopefully will be sooner than later it's much needed. xxx

  • rate this
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    Comment number 5.

    I lost my lovely husband Steve at the age 47 who had the Genetic form of Alzheimers.
    It was such a terrible time for all the family in so many ways with his older brother being diagnosed a few years earlier too. Looking back it all seems like a nightmare watching this fine man deteriorate so quickly & harshly. I muddled along with caring for him, we had both lost our jobs too, it was a desperate time. Family, friends & the services available then kept us going. You learn to cope hour by hour when that is all you can do. After all, we were only in our 30's & married just a few years. Steve was the youngest person with dementia then, I believe, & I got very involved in promoting awareness. There is still a long way to go. From what I see services in some areas have improved for the better but there are other areas that need looking at. Residential care for Alzheimers need higher staff levels in order to uphold the human rights & dignity of those who depend on that care. This obviously needs more funding, we all know that Dementia is on the increase & in younger people too.
    Common sense too plays a big part in making day to day living a little more comfortable for the cared for, this does not cost money nor does it require any qualifications & comes naturally from the heart.
    A smile. A few words of encouragement. a hug. musical entertainment etc. Always remember that there is a helpless person robbed of so many rights, suffering a very cruel disease with no cure. This could (& will) happen to any of us. We need to do all we can in our power to make our voices heard & get the powers that be to wake up & switch on. I will certainly be interested if there is anything being planned for the future.
    My love to all who are going through it now!!
    Brigete.
    My heart goes out to all you Carers & I pray that you will get the essential help to cope with it all.
    From what I see the services have improved since I was using them

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    Comment number 6.

    My husband and I was so inspired in Ronnie Blog and hope that BBC Live, will do more in supporting Young people with Dementia and maybe give Ronnie a more detailed show on this issue.
    I sure everyone thinks that Dementia only effect the older generation this 2 hour show has only given a small glimmer in Dementia in young people im sure it has open many listeners eyes.
    We wish Ronnie and everyone at the centre our best wishes

 

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