Dementia diagnosis: Britain's national shame

Dementia diagnosis: Britain's national shame

Less than half of people suffering from dementia are being formally diagnosed because doctors fear stigmatising their patients, according to the Health Secretary.

Jeremy Hunt will disclose a “dementia map” of England showing that in some areas, fewer than four in every 10 dementia sufferers have their condition recognised by the NHS.

The disclosure comes as the Government begins a campaign to boost diagnosis rates, which will include Britain leading a Group of Eight conference on the issue next month.

The Department of Health estimates that 670,000 people in England are suffering from dementia. However, only 319,000 have been diagnosed, NHS figures show.

Overall, 48 per cent of the estimated dementia cases are being formally recognised by the NHS. In some areas, the diagnosis rate is as high as 75 per cent. But in the worst performing areas, it falls to 39 per cent.

Mr Hunt said he was disclosing the diagnosis rates in an effort to drive up standards and end what campaigners have called a postcode lottery in the treatment of dementia sufferers. The figures used in today’s map show stark differences in diagnosis rates even between neighbouring clinical commissioning group areas.

In Portsmouth, 63.9 per cent of cases are recognised. But in coastal West Sussex, the rate is only 41.9 per cent.

In Bradford, the diagnosis rate is 65.3 per cent, well above the 38.5 rate in nearby East Riding of Yorkshire.

Ministers suspect that in many cases, doctors are declining to make a formal diagnosis of dementia because they believe that doing so will cause undue distress to patients and relations.

The sense of stigma surrounding dementia means that many sufferers are not properly treated, holding back the search for a cure, Mr Hunt said.

He called for dementia to be treated as a “normal” disease. In an attempt to change attitudes towards the condition, the minister is launching a “social movement” to encourage people to discuss dementia more freely.

The movement, independent of government, will unite media, business and charity leaders.

The minister also wants to expand the Alzheimer’s Society’s Dementia Friends scheme, which aims to educate people about the condition. By 2015, a million people should be taking part in the scheme, he suggested.

Writing for The Telegraph, Mr Hunt compared contemporary attitudes towards dementia to previous generations’ approach to conditions such as cancer and HIV/Aids.

“In the 1960s people were too scared to talk about cancer,” he said. “In the 1980s the same happened with HIV/Aids. After a long and painful journey, we are now much more open about both and better able to tackle them. We now need to do the same with dementia.”

It is estimated that as many as one in three people will eventually suffer from dementia. Although there is no cure for the condition, Mr Hunt said better management can make life easier for sufferers and save money for the NHS. “It is a truly horrible disease,” he said. “But with early diagnosis and proper help for families living with dementia we can help people live healthily and happily at home for much longer. We can make our NHS much more sustainable, reducing the costs of avoidable and often distressing hospital care as well as the need for social care.”

Jeremy Hughes of the Alzheimer’s Society said the regional figures showed that dementia sufferers faced a lottery for diagnosis and care.

“Depending on where you live, you may be more or less likely to get a timely diagnosis of dementia and access to the support you need,” he said. “This is simply unacceptable.

“Wherever you live, you should be entitled to care and support when you have Alzheimer’s disease or any form of dementia. It is time to stop treating people with dementia as second class citizens.” David Cameron will next month host a summit of ministers from the wealthy G8 nations to discuss dementia care. Mr Hunt said that event would see the start of a drive to change attitudes towards the condition.

“I want the UK to lead the world in tackling the stigma that still surrounds this disease — and make dementia a “normal” disease we talk about, cope with and confront openly,” he said.

“With advances in medical science, the commitment of governments across the world and a willingness from everyone to change attitudes, we truly can be the generation that beats dementia.”

MPs yesterday debated dementia in a session convened by Tracey Crouch, a Conservative backbencher. She said improving the treatment of sufferers needs “a change in the language that we use when talking about care”.

She said: “If we talked about weekly art lessons, which have been proved to provide an improvement in cognitive function, as a therapy rather than an activity then we could hope to see a change in attitude towards research in this area.”

By James Kirkup

The Telegraph, 28th November 2013

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