Doctors are refusing to carry out ‘pointless’ tests for dementia, warns Jeremy Hunt

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Alzheimer's, dementia, diagnosis

Doctors are refusing to carry out ‘pointless’ tests for dementia, warns Jeremy Hunt

Doctors are refusing to carry out tests for dementia as they believe it is pointless as there is no effective cure available, Health Secretary Jeremy Hunt has said.

Mr Hunt said the country should be “ashamed” that so many people were being denied treatment which could stave off the condition for years.

His comments came as the Alzheimer’s Society warned dementia sufferers were facing a postcode lottery of diagnosis rates.

It released data suggesting that in some areas of the UK, as few as one in three people suffering from the condition will receive a formal diagnosis, while in other areas three quarters of sufferers will be told by a doctor about their condition.

Across the UK just 46% of sufferers were diagnosed in 2012, the society said.

Mr Hunt said that attitudes in the NHS and in wider society had to change.

“As with cancer in the past, too many health and care professionals are not aware of the symptoms,” he wrote in an article for telegraph.co.uk.

“Some even believe that without effective cure there’s no point putting people through the anxiety of a memory test – even though drugs can help stave off the condition for several years.

“It is this grim fatalism that we need to shake off. Not just within our health service but across society as a whole.

“It can be a total nightmare getting a diagnosis – and the result is that, shockingly, only 46% of all dementia cases are identified.

“Yet with access to the right drugs and support for a partner, someone can live happily and healthily at home for much longer. We should be ashamed that we deny this to so many people in today’s NHS.”

The charity said that while the latest figure is an improvement on the previous year, there are still thought to be 428,500 people in the UK who have the condition but have not been diagnosed.

This means they are going without the support, benefits and the medical treatments that can help them live with the condition, charity chief executive Jeremy Hughes said.

Diagnosis rates were best in Scotland where 64.4% of of suffers were told about their condition. In Wales, just 38.5% of sufferers formally received a diagnosis in 2012.

And 44.2% of people with the condition in England were diagnosed compared with 63% in Northern Ireland.

Belfast Health and Social Care Trust provided the best diagnosis rates in 2012, with 75.5% of patients being diagnosed.

But in the East Riding of Yorkshire Primary Care Trust, just 31.6% of patients received a formal diagnosis, according to figures produced from data generated by the Government’s qualities and outcomes framework.

The charity has produced an interactive map highlighting the variation in dementia diagnosis across the UK.

It said that the new data also suggests that the average waiting time for an appointment at a specialist memory clinic is 32.5 working days – more than the recommended four to six weeks. Some memory clinics reported waiting times of up to 9 months.

Mr Hughes said: “It’s disgraceful that more than half of all people with dementia are not receiving a diagnosis, and disappointing to see such a disparity in diagnosis rates in different regions of the UK.

“This goes against best clinical practice and is preventing people with dementia from accessing the support, benefits and the medical treatments that can help them live well with the condition.

“Studies show that an early diagnosis can save the taxpayer thousands of pounds, because it can delay someone needing care outside of their own home.

“The NHS has already made a commitment to improving diagnosis rates but more needs to be done to ensure people with dementia are able to live as well as possible with the disease.”

The Alzheimer’s Society estimates that 800,000 people in the UK have a form of dementia and more than half have Alzheimer’s disease. The figure is estimated to rise to a million by 2021.

Initial signs of the dementia, which is caused by diseases of the brain, may include short-term memory loss that affects every day life, problems with thinking or reasoning, or unexplained anxiety, anger or depression.

Cambodia’s war crimes tribunal releases former Khmer Rouge leader

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age, Alzheimer's, Cambodia, Genocide, healthcare, justice, Khmer Rouge, massacre, Torture, Tribunal, War Crimes

Cambodia’s war crimes tribunal releases former Khmer Rouge leader

Cambodia’s war crimes tribunal set free a former leader of the Khmer Rouge on Sunday, upholding a decision that has outraged survivors seeking an explanation of the mass killings committed more than 30 years ago.

Ieng Thirith, 80, who has been declared mentally unfit for trial, was driven out of the UN-backed tribunal’s compound by family members. She made no comment to reporters.

The Sorbonne-educated Shakespeare scholar served as social affairs minister during the Khmer Rouge’s rule from 1975-79, during which an estimated 1.7 million people died of execution, medical neglect, overwork and starvation.

The tribunal initially announced its decision to free Ieng Thirith on Thursday, saying medical experts had determined there was no prospect for her to be tried due to a degenerative mental illness that was probably Alzheimer’s disease.

Prosecutors then delayed her release by filing an appeal demanding that conditions be set to restrict her freedom.

On Sunday, the tribunal’s supreme court said it had accepted the appeal, which is expected to be heard later this month. In the meantime, it set three provisional conditions on her movement.

The tribunal said Ieng Thirith must inform the court of her address, must turn in her passport and cannot leave the country, and must report to the court whenever it summons her.

Ieng Thirith was the Khmer Rouge’s highest-ranking woman and also a sister-in-law of the group’s top leader, Pol Pot, who died in 1998.

She is accused of involvement in the “planning, direction, co-ordination and ordering of widespread purges,” and was charged with crimes against humanity, genocide, homicide and torture.

Three other senior Khmer Rouge leaders are on trial, including her husband, 86-year-old Ieng Sary, the regime’s former foreign minister; 85-year-old Nuon Chea, its chief ideologist and second-in-command; and 80-year-old Khieu Samphan, a former head of state.

The tribunal said earlier that Ieng Thirith’s release did not mean the charges against her were being withdrawn and was not a finding of guilt or innocence. It plans to consult annually with experts to see whether future medical advances could render her fit for trial, although that is considered unlikely given her age and frailty.

Survivors of the Khmer Rouge called Ieng Thirith’s release shocking and unjust. They said they had waited decades for justice and found it hard to feel compassion for her suffering.

“It is difficult for victims and indeed, all Cambodians, to accept the especially vigorous enforcement of Ieng Thirith’s rights taking place at the [tribunal],” said Youk Chhang, director of the Documentation Center of Cambodia, a group that researches Khmer Rouge atrocities.

In a statement on Sunday,, he noted the irony of Ieng Thirith receiving “world class health care.” As social affairs minister she was “personally and directly involved in denying Cambodians even the most basic health care during the regime’s years in power,” he said.

The tribunal began in 2006 – nearly three decades after the fall of the Khmer Rouge – following years of wrangling between Cambodia and the UN. The lengthy delays have been costly and raised fears that the former leaders could die before their verdicts come.

How would it feel if you couldn’t recognise your own family?

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'face blindness', Alzheimer's, autism, brain impairment, brain injury, Children, dementia, face processing, facial perception, Memory, new national centre to study, parents, prosopagnosia, stroke, treatment

How would it feel if you couldn’t recognise your own family?

Imagine waking up and not knowing who’s sharing your bed. Imagine collecting a child from school – but picking up the wrong one. Or being a mother and not being recognised by your own child. These are all the problems faced by around a million people in the UK today. Among the famous sufferers are Duncan Bannatyne of Dragons’ Den, playwright Tom Stoppard and Jane Goodall.

It’s called face blindness – or prosopagnosia. It affects more people than Alzheimer’s and autism and, just like dyslexia before it, it’s a hidden handicap that gets people in trouble every day.

But a new national centre to study the condition has been established and pressure is building up on the NHS to recognise the condition and to get the public to understand it and sympathise with the sufferers. There’s also pressure for children to be tested because, after an experiment in Australia there may be hope of treatment. There, in Sydney, an eight-year-old boy identified only as “AL” was put through a long series of tests using grey scale photographs to retrain his brain. For the first time psychologists here are hoping there might finally be a solution. In a letter to the British Medical Journal Dr David Fine, himself a sufferer, revealed the torment of his early life. He wrote that the condition “has shaped my life”. He added: “I often fail to recognise my children or even my wife.” The doctor, from Southampton, is calling for a simple children’s test “so that the next generation of sufferers grows up in a society that understands and recognises our disability”.

Leading researcher Dr Sarah Bate, of Bournemouth University, also wants to develop a way of training sufferers with the condition. She’s just got funding to start a new national centre to study prosopagnosia and she’s already been contacted by 700 individuals offering to be tested. A number of parents who think their children might be sufferers have been in touch and now a joint project with the University of St Andrews is under way – the first attempt to improve these children’s skills at face processing.

Bate has found that part of the problem is the British tradition of wearing school uniforms. She says: “We had one boy of five and the only friend he could make – simply because her face was different – was a Chinese girl.”

In the United States, where they don’t use school uniforms, there was no such problem. And some children, she found, couldn’t even recognise their own parents. One teacher with the condition only coped by the use of seating plans. But when the pupils played up by swapping seats he got depressed and got a post at the Open University corresponding by email.

Dr Bate says: “We’re wondering whether, if we could test children at, say, seven, there might be a chance that some training could help. It’s going to be an uphill battle but we do need those tests – just as they have them for dyslexia.”

A classic case is former IT teacher Jo Livingston, 67, from Bexley. She suffers from the condition and, having retired, is now touring schools and giving talks to make people aware of the problem. Even now, she only recognises her husband “because he has a beard and talks a lot”. They met in their 20s as members of a climbing club.

She says: “When you’re climbing you always wear the same clothes and if someone wears a red anorak they’ll be in a red anorak next week. So I married the one in the red anorak because that was the one I was looking for. Now I do the talks so that people can know about it – so they can have that ‘that’s me’ moment.”

Livingston has found instances where a woman could only be sure it was her baby in hospital if it was the one with a cuddly toy in the cot. Another woman said she was at a festival, looking for someone she’d planned to meet and only later found she’d been chatting to Ronan Keating. And a Hollywood engineer couldn’t even recognise Brad Pitt when they shared a lift.

“Television’s very difficult because characters change clothes and hairstyles and sometimes the plot hinges on that,” Livingston says. “You see two young blond women and you think they’re the same person until they appear on screen together and then you mentally have to rewrite the entire plot. It’s quite exhausting.”

Another sufferer is social worker Nerina Parr, 44, from Brighton. She says: “It’s the new dyslexia… nobody could explain what it was and half the time they didn’t have any sympathy with it anyway. It’s always getting me into trouble. For instance, my partner changed the picture of us on my bedside and I got really jealous and demanded to know who this new person was… then there’s the nightmare of walking into work meetings and not knowing who the people are – even though you work with them.”

Anna Cady, a 60-year-old artist from Winchester, thought at one stage that she had Alzheimer’s or dementia. “So when I found out what it was it was a tremendous relief. Then again, I did some tests on the internet and ended up sobbing my eyes out because I couldn’t even tell when they changed the faces. The awful thing is that you dread going outside because you might offend someone by not recognising them. When someone says ‘hello, Anna’ your heart sinks because you just hope you aren’t going to offend someone.”

If you think you have face blindness and would like to be part of the research you can register at prosopagnosiaresearch.org

Face blindness: Causes and cures

Prosopagnosia or face blindness can be caused by stroke or brain injury, but some people are born with it or develop it despite having no other signs of brain impairment. Recent research suggests it may sometimes be genetic.

It is thought to be caused by abnormality of or damage to a part of the brain that controls memory and facial perception.

In extreme cases, those with the condition are unable to recognise their own faces or tell the difference between a face and an object.

Treatment focuses on teaching coping strategies and the use of a variety of prompts and cues to recognise people by other means. But research is under way and it is hoped an effective prevention or cure may be found.

Doctors Stunned By Musical Memory

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Alzheimer's, amnesia, dementia, Memory

http://www.huffingtonpost.com/2011/11/15/cellist-memory-wiped-out_n_1095448.html

When an infection attacked the brain of a 68-year-old concert cellist and wiped out his entire memory back in 2005, doctors were shocked to discover his musical memory remained intact.

First reported by The Guardian, the German musician known as PM could only recognize his brother and care worker, but had no recollection of people or events from his past.

Discover Magazine explains the cellist’s severe amnesia meant he couldn’t recall old and new memories thanks to the destruction of his medial temple nodes — a part of the brain responsible for storing facts and events.

But when it came to playing previous concertos, and learning new pieces of music, he had such no problem leaving doctors stunned.

Discussed at the Society for Neuroscience conference for the first time this past weekend, scientists say this case study suggests memory is more complex and autonomous than previously thought and that music could be the key to helping people with memory problems learn new skills in life.

“Musical memory seems to be stored independently, at least partially, of other types of memory,” Carsten Finke, a neurologist at Charite university hospital in Berlin told the Guardian. “If you contrast these two cases, you could argue the superior temporal gyrus, which is intact on the righthand side in our patient, could be the relevant structure that he uses to remember music.”

The link between memory and music is nothing new, of course. The LA Times points out that tunes are the last memory to go with Alzheimer’s patients. According to the American Health Assistance Foundation, people can prevent Alzheimer’s and dementia by playing a musical instrument in order to keep the brain active.

Another study out of Boston University showed music had healing affects on Alzheimer’s patients and allowed them to learn new things through lyrics rather than spoken word.