Bristol campaign to dispel dementia taboo

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Monday, June 22, 2009
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This is Bristol

Fantasy novelist Terry Pratchett, Columbo star Peter Falk and former Prime Minister Lady Thatcher are all believed to be suffering with the condition.

It affects around 700,000 people in the UK and is expected to increase more than threefold in the next 50 years.

Yet dementia is still regarded as one of the "last great taboos".

The condition results in a slow deterioration of the mind that leads to sufferers losing treasured memories and forgetting loved ones.

In Bristol alone, about 6,000 people have dementia and over the next 20 years this is expected to rise by 33 per cent.

But the stigma surrounding it means that only one in three sufferers ever get a formal diagnosis and others have no idea where to turn for help.

Now a new campaign aims to change all that.

Local Councils, NHS Primary Care Trusts, the Strategic Health Authority for the South West and the Alzheimer's Society, supported by the Evening Post, are looking at how dementia services can be improved.

Richard Lyle, programme director for older people, Bristol City Council/NHS Bristol, said: "The launch of the National Dementia Strategy is extremely welcome in Bristol. It is bringing to the forefront a condition that affects thousands of people across the city. We will be working very closely with all our partners to ensure that the strategy is implemented at a local level, and that people with dementia and their carers receive the best possible care."

Helen England Co-Director of Commissioning, NHS Bristol said: "We are committed to working with partners to ensure that people with dementia and their carers are able to access the best possible care when they need it. Supporting people in the early stages of dementia is vital, and we are delighted that a group of GP practices are able to access a dementia support officer, which has been commissioned in partnership with the Alzheimer's Society.

"They want to raise awareness of the condition, dispel the myths surrounding it and look at how sufferers and their carers can get the vital support they need."

Neil Hunt, chief executive of the Alzheimer's Society, said: "We are dealing with one of the last great taboos here.

"There can barely be a family in the land which has not been touched by dementia at some stage.

"The most important thing we can do is to reduce some of the stigma and some of the myths.

"We are doing a lot to try and dispel those feelings of doom and despair that surrounds dementia. It is nothing like the death sentence that people fear it is. Looking at the services we provide is not just about looking at how we can care for these people, but also what we can do to maximise their potential."

Earlier this year, the Department for Health launched the first ever National Dementia Strategy for England.

Backed by £150 million over the first two years, it sets out plans to increase awareness of dementia, ensure early diagnosis and intervention, and improve the quality of care given to people with dementia.

It has called for a national public information campaign to improve public awareness about dementia and reduce the stigma of the disease.

Jenny Owen, president of the Association of Directors of Adult Social Services (ADASS), co-chaired the dementia strategy and found many people felt as though they were left in the dark.

She said: "People could see it was a growing problem and it was a horrible illness but didn't know that there was anything they could do about it. It was difficult to think about anything positively.

"Making the public aware that dementia is an illness and not just a simple product of growing old is really important.

"People were saying that they really valued getting information from people who could signpost them – like doctors and health professionals – but also from each other.

"They were getting a lot of support from other people who had dementia.

"I think the most important aspect of this campaign will be to hear from people with dementia and their carers – not just from those people who come in through the doors of their GP or their health centre."

David Johnstone, chairman of the ADASS performance and standards network, said: "A lot of people aren't aware of dementia but it is something that is increasingly affecting a lot of people. People with dementia and their carers can be very isolated. Carers have to spend a huge amount of time looking after them.

"As we have an ageing population, many more people will be affected by it. It is about reaching out to people with dementia and their carers.

"We want to show them there is a network of carer services and health services being built up."

He added: "The other aspect of this campaign which is very important is that we do want to find out from people what it is that they have found particularly valuable when coping with dementia. We want to find out how good we are at the moment and what are the gaps between what we are doing and what we need to be doing.

"We are quite excited about this. This might prove to be a really interesting way for the health services to connect and raise awareness and get information back from people who are not part of the normal system."

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    by Georgina Wraith, Paignton Devon

    Monday, June 22 2009, 10:00PM

    “I have been a carer for my Dad and Mom for about 6 year's. My Dad had the beginnings of dementia but died very quickly of stroke and breathing difficulties which although very hard to get through this time I had no time to grieve because Mom by this time had gone down with dementia very quickly after my dad's death .
    Although when we look back you start to realise it started to happen long before it is realised it is a crual illness it take's people away day by day I cared for mom 24/7 for two and a half year's she used to wander at night empty draw's in her room not knowing what she was looking for and not remembering she had done it soil herself constantly and shout at me when i asked her to come to the bathroom she would spit her pill's out at me (she was diabetic) she would forget to put on clothe's put lipstick on to go to bed I cried bucket's for my lovely mom who was a sweet lady and would not hurt or upset anyone and was very quite and never swore. After two and a half years i could not cope anymore even with the help of my wonderful husband and family it all came to a stop when i fell and ended up on crutches the doctor said enough is enough so it was taken out of my hand's and Mom went into a rest home to this day i carry the guilt with me for not being able to cope I had alot of help and advice from thier doctor Dr trevor Avis mayfield medical centre he was wonderful and social services were great while mom was at home and when she went to the home My Mom died a little every day and to watch that before you eye's is dreadful she got violent swore like a trooper and some day's would not even look at me and i went every day to feed her and read and talk by this time talk food book's letter's and card's ment nothing she no longer knew what to do with anything and loved biting anyone who went near her.But they looked after my Mom well and loved her to bit's they alway's said what a character she was and will miss her for a long long time she died in my arm's 23rd nov 2008.I could tell you so much more of her illness but it's turning into a book if you want to know more about the thing's that happened to her i will be happy to tell you.
    YOUR'S
    With sadness
    Mrs Georgina Wraith”

  • Profile image for This is Bristol

    by Bryan Welling, Bristol

    Monday, June 22 2009, 9:34PM

    “At first you want to believe its an old age complaint,then our daughters were worried and concerned about their mothers forgetfulness.I made an appointment at BRACE to check her,her father was treated at this centre and was the main reason we asked for their help.She was sent for a scan and a pinhead dot was found on the scan,this was the cause of her problem, we were told it was Alzheimers, her world and ours had fallen apart.We tried to keep it quiet,with only our close friends knowing the truth.We were doing what Alzheimers Strategy is trying to overcome.It came to the stage when i decided to tell everyone about her condition, and that was the time our family accepted it.A heavy weight was removed from my shoulders,and it was then that we came to terms with her illness.We go to our club the KCA,and the kindness we are shown there and other venues,made me realise we were wrong to try to hush it up.The complaint about they are not the person you married,is untrue,they are,but with an illness.She still trys to talk but one thing that stays the same is her laughter,not even this illness can take that away. One thing i have found no matter what day you have had,put them to bed with a happy face and you will feel much better yourself.”

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