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Tom Coppins speaks of the frustration and fear he has regarding his dementia
The UK will aim to double its annual funding for dementia research to £132m by 2025, up from the 2015 target of £66m, David Cameron has said.
The prime minister's announcement comes before a dementia summit which is part of Britain's presidency of the G8.
Meanwhile, the Care Quality Commission (CQC) plans unannounced inspections of the care of dementia patients at 150 institutions across England.
The global number of dementia sufferers is expected to treble to 135m by 2050.
A dementia brain scan will also be introduced for some NHS patients with complicated symptoms.
It could help rule out Alzheimer's disease, the most common form of dementia, by hunting for damaged proteins in the brain.
Continue reading the main storyDementia across the globe
-
44 million
globally have dementia
-
135 million
will have the disease in 2050
-
By then
71%
will be poor and middle income
-
$600bn
global cost of dementia
-
In the UK, cancer research gets
8x
as much funding as dementia
Source: Alzheimer's Society
The disease is incurable and ultimately leaves people needing full-time care as brain function wastes away.
There is growing concern that some countries will simply not cope with the growing burden of dementia.
Analysis
James Gallagher Health and science reporter, BBC News
Dementia is heading towards being the biggest health and care problem of a generation so you'd think it would have the funding to match. Yet it really is the poor relation of other diseases.
In the UK, about £590m is spent on cancer research with £267m coming from government. At the moment £52m of government money goes to dementia research.
It's a pattern reflected around the world.
Part of the problem is that until recently dementia was considered a "normal part of ageing" whereas cancer has been documented as far back as ancient Egypt.
It means dementia research is starting from a low base.
The UK is aiming to double its spend, but this will still leave dementia significantly behind.
The Alzheimer's Society says it expects more.
It costs the world billions of dollars each year: £370bn ($604bn) in 2010, according to the World Health Organization.
Health ministers from the G8 nations will meet later to find the best ways to advance research.
Ahead of the meeting, Mr Cameron called on government, industry and charities all to commit more funding.
He said government would boost annual research funding from £66m, the 2015 pledge, to £132m, which will be adjusted for inflation, by 2025.
He said: "If we are to beat dementia, we must also work globally, with nations, business and scientists from all over the world working together as we did with cancer, and with HIV and Aids.
"Today, we will get some of the most powerful nations around the table in London to agree how we must go forward together, working towards that next big breakthrough."
Health Secretary Jeremy Hunt said: "This mustn't be about paying lip service to dementia, it must be about actually changing things - and the biggest thing we can do is make sure we have a proper diagnosis to people.
"By the end of this Parliament we will have doubled the money going into dementia research, so there is a real increase happening, and we have put £0.5bn into additional support for carers."
Labour's shadow health secretary Andy Burnham, commenting on the summit, said dementia was "one of the greatest challenges we will face in this century.
"The prime minister is right to focus on it and Labour will give the important commitment to research cross-party support."
But he added: "The sad reality is too many people with dementia are not getting the support they need at home and are ending up at A&E in increasing numbers. These are problems of this government's making."
'Rallying cry'Author Sir Terry Pratchett, who was diagnosed with Alzheimer's in 2008, told the BBC's Newsnight "a lot more" money should be spent on dementia research and care.
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Sir Terry Pratchett said he was angered by the lack of notice paid to dementia
"Every time I read a newspaper or look at a screen, some bad care has been found somewhere in Britain," he said.
Sir Terry said people were afraid of dementia, and that fear could be reduced if they knew they would be "well looked after".
The Alzheimer's Society charity said the summit was a "once in a lifetime opportunity".
Chief executive Jeremy Hughes said: "Given that this is the first time a prime minister has used the presidency of the G8 to take action on a single disease, we are expecting a rallying cry from the UK government.
What is dementia?
- It is an umbrella term that describes about 100 diseases in which brain cells die on a huge scale
- All damage memory, language, mental agility, understanding and judgement
- Alzheimer's disease is the most common form, affecting 62% of those living with dementia
- It gets worse with time and eventually people are left completely dependent on carers
- It is incurable
"Yet the details we have seen so far are not enough.
"As we enter the summit today, the UK must show an injection of ambition, commitment to a long-term strategy and more funding."
Bran scansPatients with complicated symptoms or early onset dementia will now be able to get a new brain scan on the NHS to aid diagnosis.
A radioactive marker which binds to amyloid, a hallmark of Alzheimer's disease, will be injected. If there is amyloid in the brain then the tracer will show up on brain scans.
The test will initially be offered at Imperial Hospital Trust in London and will be rolled out to other specialist centres.
Dr Richard Perry, a consultant neurologist at Imperial, told the BBC: "For a patient who can't get an answer using the usual tests this will make a big difference as it'll provide clarity.
"Knowing the cause is the first step to getting treatment."
Around 100 patients a year are expected to get access to the scan.
There have been a flurry of other funding announcements tied to the talks including:
- The Medical Research Council (MRC) will commit £50m to improve treatments and delay the progression of the disease
- The Alzheimer's Society has promised to spend at least £100m on research in the next decade
- A new £3m "Dementia Consortium" will unite the charity Alzheimer's Research UK, two pharmaceutical companies and MRC Technology in the hunt for new drugs
- The Engineering and Physical Sciences Research Council has put up £5m improve ways of diagnosing and measure disease progression.
Hilary Evans, from Alzheimer's Research UK, said: "It will be heartening to thousands of people living with dementia to see the UK leading the way in dementia research and know that scientists are fighting for them.
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Jeremy Hunt: "The biggest thing we can do is to make sure that we actually get a proper diagnosis for people"
"We boast some of the world's leading scientists in dementia, and these announcements are a clear backing of their crucial work - this support must continue.
"We hope this package of announcements will set a good example to other G8 nations to galvanise international research efforts."
Announcing its plan to inspect 150 English care homes and hospitals, the CQC said it would look at what needed improving, how to cut hospital admissions from care homes and ways to help people with dementia maintain their physical and mental well-being.
David Behan, chief executive of the health regulator, said: "We know that these people are often vulnerable because of their condition and can rely on a number of services across health and social care to support their physical, mental and social well-being.
"Our findings will draw conclusions on a national scale about what works well and where improvements are required."
A national report on the issue will also be published in May.
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