Dementia patients face Russian roulette in hospital

Dementia patients admitted to hospital in England play “Russian roulette” with their health, a charity is warning.

Dementia patients admitted to hospital in England play "Russian roulette" with their health, a charity is warning.

The Alzheimer’s Society said it had found “shocking” evidence of poor and variable care during its review.

The report, based on Freedom of Information (FOI) requests, found problems with falls, night-time discharges and readmissions, and said standards needed to improve urgently.

The Department of Health said the disease was a key priority as one in four hospital beds is believed to be occupied by a person with dementia.

The Alzheimer’s Society called for all hospitals to publish an annual statement of dementia care, to include information on satisfaction, falls, readmissions and staff training as part of its campaign to improve standards.

The charity received responses to their FOI request from half of the 163 hospital trusts in England; however, for some of the questions the figures were based on a fifth of trusts as not all hospitals could provide answers to all the questions.

Its report showed:

  • more than one in four people over the age of 65 who fell had dementia, but in some trusts it topped 70%
  • people with dementia stay five to seven times longer than other patients over the age of 65 in the worst-performing hospitals
  • one in 10 people over 65 who were discharged overnight had dementia – with the numbers rising to nearly four in 10 in the worst trusts
  • more than half of over-65s readmitted within 30 days – a sign of inappropriate care – had dementia in the worst-performing trust.

The Alzheimer’s Society also carried out a survey of dementia patients. It found examples of patients being treated with excessive force, not being given enough help with meals and drinks and being left in wet or soiled sheets.

Nine in 10 said hospitals were frightening and only 2% felt all staff understood the needs of people with dementia.

The charity described these findings as unacceptable and a sign that dementia patients were not getting the standard of care they should.

Alzheimer’s Society chief executive Jeremy Hughes said: “In the worst cases, hospital care for people with dementia is like Russian roulette. People with dementia and their carers have no way of knowing what’s going to happen to them when they are admitted.

“In many cases they are well looked after but, as our investigation shows, too often people with dementia fall and injure themselves, get discharged at night or are marooned in hospital despite their medical treatment having finished.”

A Department of Health spokesman said the disease was a key priority and in recent years £50m had been spent on making hospitals and care homes more “dementia friendly”, while 500,000 staff had received extra training.

“People with dementia and their carers deserve the very best support,” he added.

New drug may delay Alzheimer’s decline

New research of how a new drug could slow the pace of brain decline for patients with early stage Alzheimer’s disease have emerged.

New research of how a new drug could slow the pace of brain decline for patients with early stage Alzheimer's diseaseData from pharmaceutical company Eli Lilly suggests its Solanezumab drug can cut the rate of the dementia’s progression by about a third.

The results, presented to a US conference, are being met with cautious optimism. A new trial is due to report next year and should provide definitive evidence.

The death of brain cells in Alzheimer’s is currently unstoppable. Solanezumab may be able to keep them alive.

Current medication, such as Aricept, can manage only the symptoms of dementia by helping the dying brain cells function.

But solanezumab attacks the deformed proteins, called amyloid, that build up in the brain during Alzheimer’s.

It is thought the formation of sticky plaques of amyloid between nerve cells leads to damage and eventually brain cell death.

Solanezumab has long been the great hope of dementia research, yet an 18-month trial of the drug seemingly ended in failure in 2012.

But when Eli Lilly looked more closely at the data, there were hints it could be working for patients in the earliest stages of the disease. It appeared to slow progression by around 34% during the study.

So the company asked just over 1,000 of the patients in the original trial with mild Alzheimer’s to take the drug for another two years.

And positive results from this extension of the original trial have now been presented at the Alzheimer’s Association International Conference.

They show those taking the drugs the longest had the most benefit.

Dr Eric Siemers, from the Lilly Research Laboratories, in Indiana, said “It’s another piece of evidence that solanezumab does have an effect on the underlying disease pathology. We think there is a chance that solanezumab will be the first disease-modifying medication to be available.”

The company also started a completely separate trial in mild patients in 2012, and these results could prove to be the definitive moment for the drug.

At the moment there is no medication that can slow down dementia. If such a drug was developed it could transform how the disease is managed.

People would still get worse, but they would spend more time in the milder phase of the degenerative disease rather than needing constant care.

In a field that has been plagued by repeated disappointment, even a hint of such a drug is an exciting moment.

Next year, when further trial results are due, we will know for certain whether solanezumab is the breakthrough everyone hopes it could be.

Dr Eric Karran, the director of research at Alzheimer’s Research UK, said “If this gets replicated, then I think this is a real breakthrough in Alzheimer’s research. Then, for the first time, the medical community can say we can slow Alzheimer’s, which is an incredible step forward.”

“These data need replicating, this is not proof, but what you can say is it is entirely consistent with a disease-modifying effect. We’ve never ever had evidence that we can affect the disease process.”

Simple skin test may diagnose Alzheimer and Parkinson disease

Scientists have proposed a new simple idea for detecting brain conditions including Alzheimer’s and Parkinson’s diseases.

Simple skin test may diagnose Alzheimer and Parkinson diseaseTheir work which is at an early stage- found the same abnormal proteins that accumulate in the brain in such disorders can also be found in skin.

Early diagnosis is the key to preventing the loss of brain tissue in dementia-  which can go undetected for years.

But experts said even more advanced tests, including ones of spinal fluid, were still not ready for clinic. If they were, then doctors could treatment at the earliest stages, before irreversible brain damage or mental decline has taken place.

Investigators have been hunting for suitable biomarkers in the body – molecules in blood or exhaled breath, for example, that can be measured to accurately and reliably signal if a disease or disorder is present.

Dr Ildefonso Rodriguez-Leyva and colleagues from the University of San Luis Potosi, Mexico, believe skin is a good candidate for uncovering hidden brain disorders.

Skin has the same origin as brain tissue in the developing embryo and might, therefore, be a good window to what’s going on in the mind in later life – at least at a molecular level – they reasoned.

Post-mortem studies of people with Parkinson’s also reveal that the same protein deposits which occur in the brain with this condition also accumulate in the skin.

To test if the same was true in life as after death, the researchers recruited 65 volunteers – 12 who were healthy controls and the remaining 53 who had either Parkinson’s disease, Alzheimer’s or another type of dementia.

They took a small skin biopsy from behind the ear of each volunteer to test in their laboratory for any tell tale signs of disease.

Specifically, they looked for the presence of two proteins – tau and alpha-synuclein.

The 20 people with Alzheimer’s and the 16 with Parkinson’s had raised levels of both these proteins in their skin compared to the healthy controls and the patients with other types of dementia.

The people with Parkinson’s also had higher levels of alpha-synuclein protein.

Dr Rodriguez-Leyva, who will soon present his findings to the annual meeting of the American Academy of Neurology, said: “More research is needed to confirm these results, but the findings are exciting because we could potentially begin to use skin biopsies from living patients to study and learn more about these diseases.

“This new test offers a potential biomarker that may allow doctors to identify and diagnose these diseases earlier on.” It could also guide research into new treatments, he said.

Dr Arthur Roach, Parkinson’s UK Director of Research and Development, said: “This work points to a possible diagnostic test that would be minimally invasive and could provide earlier, more accurate diagnosis.”

“There is still a need for more innovation in this area – at the moment there’s no way to definitively diagnose Parkinson’s.”

Dr Simon Ridley of Alzheimer’s Research UK said it was too early to say if a skin test would become available.

He said research into biomarkers in cerebrospinal fluid – the fluid that surrounds the brain and spinal cord – was at a more advanced stage, but that even these methods were not yet close to becoming a routine test.

Health Direct notes that whilst more research is obviously needed a skin test which finds a correlation between alpha synuclein proteins and degenerative brain disease would be hugely significant as it would allow for quick, cheap non invasive testing and diagnosis.

Dementia patients face unfair care tax

Dementia patients in the UK face an “unfair care tax” because they have to pay for most of the care they need themselves say experts.

Dementia patients face unfair care taxThe Alzheimer’s Society found that on average, the equivalent of £32,242 a year was spent on care per patient, but the researchers said on average only a third – £10,784 – came from NHS or council funds, leaving a shortfall.

The charity said it was unfair as those with cancer or heart problems got their care free on the NHS.

The research was carried out by the London School of Economics and Kings College London and was carried out to update figures compiled by the charity in 2007.

Experts looked at care provided by the NHS and paid for by councils as well as the private care market and amount of unpaid support provided by family and friends.

They found that caring for dementia patients cost the UK the equivalent of £26.3 billion overall, but estimated that £17.4 billion – two-thirds – came from private care services or in the form of unpaid care.

For the individual, that works out at £32,242 a year – £21,322 of which was not from the state.

Alzheimer’s Society chief executive Jeremy Hughes said the figures were “staggering” and the lack of paid-for care was, in effect, a “dementia care tax”. If you have cancer or heart disease you can quite rightly expect that the care you need will be free.

“That is just not the case for people with dementia. Families are forced to break the bank to pay for basic care for a loved one.”

As well as the cost of care, researchers looked at the number of cases of dementia.

They found that over the last seven years there had been no change in the proportion of older people getting the disease – it has stayed at 7.1% of over-65s but they predicted the overall numbers would rise from 850,000 now to more than two million by 2051 because of the ageing population.

The report said there had been a rise in younger adults with the disease – up from 17,000 to more than 40,000. But researchers said that rather than there having been a real increase, the previous study had underestimated the scale of the problem.

Health Secretary Jeremy Hunt said the government was prioritising dementia care, pointing out the Prime Minister’s dementia challenge was launched in 2012 to help improve care and research.

Since it was launched diagnosis rates have started to rise, while investment has been made in services such as memory clinics. On top of that, from 2016 care costs will be capped at £72,000.

Dementia- priorities for avoidance and treatment

Dementia has been described as a “global disaster waiting to happen” and the biggest health and care problem of a generation.Dementia- priorities for avoidance and treatmentSomeone is diagnosed with the disease every four seconds and cases are expected to soar from 44 million now to 135 million by 2050.

The disease already costs the world £370 billion each year. This week ministers from the G8 major economies are meeting in London to discuss how to tackle this devastating disease.

What is dementia?

  • It’s an umbrella term that describes around 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.

So what are the key actions required?

1) Diagnose dementia early

Early diagnosis will be key to tackling dementia. On the day your doctor tells you that you have dementia you might think that’s the early stages of the disease, but it’s not

It takes 10 to 15 years of brain cells dying before memory problems become noticeable and memory tests lead to a diagnosis.

By this stage a fifth of the core memory centres of the brain will be dead.

It’s why doctors think drug trials have failed, they’re simply trying to treat the disease way too late.

However, developments are being made. It is now possible to see one of the damaged proteins closely tied to Alzheimer’s disease in brain scans, but the challenge is to use these tools to predict the development of dementia.

Other methods, such as finding chemicals in the blood which might predict the onset of dementia, are being investigated as well.

Dementia is also not one disease, but many. Alzheimer’s disease, vascular dementia and dementia with Lewy bodies all have similar symptoms, but may need different treatments. Scientists will need to come up with techniques which can readily distinguish between different forms of dementia.

2) Stop brain cells dying

Currently, there is no drug which can halt or even slow the progression of any form of dementia.

A lot of hope was placed on two potential Alzheimer’s drugs – solanezumab and bapineuzumab – but they failed in trials which showed no benefits for cognition.

However, there were hints that solanezumab may work in people with the earliest stages of the disease. A new trial has started looking at patients with mild dementia.

A cure is obviously the dream, but just slowing the pace of the disease would deliver massive rewards. Delaying dementia by five years could halve the number of people living with the disease.

3) Develop drugs to treat the symptoms

There are dementia drugs, which help people to live with the condition, but there are not enough.

Medication can boost the chemical signalling between surviving brain cells. But the last new medicine, memantine, was approved by the US in 2003. Since then there’s been nothing.

4) Find ways to reduce the risk

Want to massively cut the risk of lung cancer? Don’t smoke. Want to avoid a heart attack? Then exercise and have a healthy diet. Don’t want dementia? Then the answer is less certain.

Age is the biggest risk factor. In the UK, one in three people over the age of 95 has dementia, but there’s not much that you can do about that.

Many of the familiar messages – exercise and eat healthily – have been linked to preventing or delaying the onset of dementia. But the full picture of how family history, lifestyle choices and the environment combine to result in dementia is still unclear.

Prof Peter Passmore, from the British Geriatrics Society and Queen’s University Belfast, says the best advice so far is: “To do what’s healthy for the heart to reduce blood vessel damage to the brain.

So avoid obesity, don’t smoke, regular exercise, control blood pressure, sugar and cholesterol.

5) Work out the best care

Dementia has huge costs for society, but medical bills account for only a small fraction of the overall bill. The real cost is in time in care homes and the lost income of families quitting work to care for relatives.

Research will also need to focus on the best ways to care for patients with dementia and to keep them independent for as long as possible.

Studies have already shown that antipsychotic prescriptions can be halved with the correct training for staff.

Dementia care patchy- quango finds

The standard of care provided for people with dementia is “patchy”, the National Institute for Curbing Expenditure (NICE) has said. Dementia care patchy- quango findsSome people with the condition were not getting even basic levels of care, it added.

The warning came as NICE unveiled new standards for dementia care in England, covering issues such as housing and access to leisure services.

Care services were playing “catch-up” on dementia, it said.

The guidance is the first to be produced by NICE under its new extended remit.

To date, the organisation has focused on issuing recommendations about NHS treatments and encouraging healthy lifestyles.

But under the shake-up of the NHS, it now has responsibility for providing guidance on care and support provided by the likes of councils and care homes.

NICE’s dementia guidance includes 10 standards it wants the care sector to follow.

One calls for people with dementia to live in housing that meets their needs, while another says they should be given the support they need to access leisure activities.

Others focus on keeping patients involved in community life and ensuring they get access to services such as dentists and opticians.

NICE deputy chief executive Prof Gillian Leng said: “The general picture is that care is patchy.  We know that it is really good in places but it’s not consistent.  My personal view is that we are all playing catch-up because the number of people with dementia has been increasing so dramatically.”

Currently about 670,000 people in England are living with dementia but one in three over the age of 65 are expected to develop the condition.

George McNamara, of the Alzheimer’s Society, said people with the condition were being denied the quality of life they deserved.

“These standards will be a useful tool for the care sector and show what people with dementia and carers should be able to expect,” he said.  “But, as they are not mandatory, it’s a case of ‘wait and see’ as to whether this guidance will drive real change or just sit on the shelf.”

Postcode dementia care is disgraceful according to the Alzheimer Society

There is a “disgraceful” variation in the number of proportion with dementia being diagnosed across the UK, according to the Alzheimer’s Society. Postcode dementia care is disgraceful according to the Alzheimer SocietyAbout 800,000 people in the UK have some form of dementia, but most have not been diagnosed.

Estimates by the charity suggest only 32% were diagnosed in the East Riding of Yorkshire compared with 76% in Belfast.

The government said the variation was “unacceptable” and caused “unnecessary suffering”.

Predicted levels of dementia across the UK were compared with data from GPs on the actual number of patients being diagnosed.

The map suggests a north-south divide, with the highest rates of diagnosis in Scotland (average 64%) and Northern Ireland (average 63%).

Rates dropped to 50% in the north-east of England, 41% in the south-west of England and 39% in Wales.

Across the whole of the UK, the percentage of people with dementia who have been diagnosed has gone from 43% in 2011 to 46% in 2012.

Jeremy Hughes, the chief executive of the Alzheimer’s Society, 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.”

The charity said one explanation was variation in “stigma”, which resulted in people not visiting their GP. The higher figures in Scotland were put down to a better relationship between social services and the healthcare system.

Health Secretary Jeremy Hunt said: “The small improvement in dementia diagnosis is good news, but the extreme variation across the country is unacceptable.

“It’s time for the worst performing areas to wake up to the dementia time bomb.”

He said failing to diagnose dementia was delaying treatment and “causing unnecessary suffering”.

New brain scans can diagnose dementia by type

Researchers have found a way to diagnose different types of dementia using brain scans- without the need for invasive tests.New brain scans can diagnose dementia by typeUS experts could accurately identify Alzheimer’s disease and another type of dementia from structural brain patterns on medical scans, Neurology reports.

Currently, doctors can struggle to diagnose dementia, meaning the most appropriate treatment may be delayed.

Despite being two distinct diseases- Alzheimer’s and frontotemporal dementia, they share similar clinical features and symptoms and can be hard to tell apart without medical tests.

Alzheimer’s tends to attack the cerebral cortex – the layer of grey matter covering the brain – where as frontotemporal dementia, as the name suggests, tends to affect the temporal and frontal lobes of the brain, which can show up on brain scans, but these are not always diagnostic.

A lumbar puncture – a needle in the spine – may also be used to check protein levels in the brain, which tend to be higher in Alzheimer’s than with frontotemporal dementia.

A team at the University of Pennsylvania set out to see if they could ultimately dispense of the lumbar puncture test altogether and instead predict brain protein levels using MRI brain scans alone.

They recruited 185 patients who had already been diagnosed with either Alzheimer’s disease or frontotemporal dementia and had undergone a lumbar puncture test and MRI scanning.

The researchers scrutinised the brain scans to see if they could find any patterns that tallied with the protein level results from the lumbar puncture tests.

They found the density of gray matter on the MRI scans correlated with the protein results.

The MRI prediction method was 75% accurate at identifying the correct diagnosis.

Although this figure is some way off an ideal 100%, it could still be a useful screening tool, say the researchers.

The only drug currently licensed in England and Wales for treating frontotemporal dementia is rivastigmine.

There are four licensed treatments for Alzheimer’s – donepezil, galantamine, rivastigmine and memantine.

Dementia deaths more than double in a decade- official figures show

The proportion of people dying of dementia has more than doubled in a decade, official figures show- and by 2021 one in eight of all deaths could be due to the brain disease.Dementia deaths more than double in a decade- official figure showEvery tenth woman in England and Wales now dies of dementia (10.3 per cent), according to mortality figures for 2011 from the Office for National Statistics, up from 4.3 per cent in 2001.

In men, the proportion of deaths from dementia has risen from 2.0 to 5.2 per cent over the course of the decade. Should these rises be sustained, it will mean that by 2021 about 12 per cent of all deaths will be attributed to dementia.

Experts said the figures were a “scary” reminder of the scale of the dementia timebomb facing Britain.

At the moment some 800,000 people in Britain are living with dementia, including about 500,000 from the most common type, Alzheimer’s. Less than half (43 per cent) have received a formal diagnosis. One million are expected to have dementia by 2021.

Professor Clive Ballard, head of research at The Alzheimer’s Society, said the increase in deaths attributed to dementia was due both Britain’s ageing population and to a greater understanding that the disease did actually kill people.

He said: “Dementia is getting more common, because people are living longer.  There’s an exponential increase in dementia with age. One in 20 people at 65 have it, but that increases to one in five at 80, one in three at 90 and one in two at 95.”

“So once you get more and more people living beyond 80, you will get more people dying from dementia.”

He also said doctors were now far more likely to record dementia as the underlying cause of death, due to a better understanding of it.

He explained: “In very severe Alzheimer’s, people get bed bound, can’t clear their chests properly and become very vulnerable to infections like pneumonia.”

“Whereas 10 years ago a doctors might have put ‘pneumonia’ as the cause of death on the death certificate of someone with dementia, now they are more likely to put ‘pneumonia and dementia’.”

People with Alzheimer’s were also “much more prone” to strokes because the amyloid proteins associated with the disease in the brain also tended to block blood vessels.

Just as doctors had realised for years that people with end-stage cancer were really killed by the disease, rather than the final trigger such as an infection or a heart attack, so they were now accepting a similar thing happened in those with dementia.

Given that one in three 65-year-olds will develop dementia during the rest of their lives, Prof Ballard thought predictions that one in eight could be dying of the disease by 2021 might prove on the low side.

“If we assume that half of those with dementia will die of it, that suggests a sixth of all deaths could be due to the disease,” he said.

“The proportion of the increase is quite scary, and that’s why we need to have a plan now, rather than burying our heads in the sand.  We are moving in the right direction but we have to have more support for research and for managing people with it.”

He warned that 85 per cent of people in care homes were now thought to have dementia, up from 20 per cent in 1980, and given the upward trend almost everybody in a care home would soon have it.

A million dementia friends to be taught how to diagnose and improve care

One million people are to be taught how to spot the early signs of dementia as part of a drive to spread knowledge about the illness and improve the care of sufferers.A million dementia friends to be taught how to diagnose and improve careDavid Cameron will also announce today that the Government will trial new medical technology that could potentially reduce the time it takes the NHS to diagnose dementia from about 18 months to only three months.

GPs will use iPad-compatible software to test people’s memory, and should be able to tell whether they have normal or abnormal memory in 10 minutes.

Those needing further investigation will be referred to a specialist brain centre.  Two pilot schemes will cover about 200 patients next year.

An estimated 400,000 dementia sufferers in the UK are not diagnosed and experts believe the tests, if introduced nationally, could double the diagnosis rate to 80 per cent.

The number of sufferers is expected to double in the next  30 years.

Mr Cameron, who launched his Dementia Challenge in March, will give a progress report today as he outlines plans to recruit “Dementia Friends.”  People will be educated in free sessions in church halls and workplaces on how to detect  tell-tale signs of the condition and provide support to family, friends and colleagues.  The hope is that the initiative will also help the public understand the illness.

The Prime Minister admitted that general awareness was “shockingly low”.  He said: “We cannot underestimate the challenge we face in dealing with dementia in our country.  There is still a long way to go in fighting the disease but together we can improve the lives of millions.”

From today people wishing to become “Dementia Friends” can text “Friend” to 88080 or visit  The Government hopes that one million will volunteer by 2015.  People will get a badge with a “forget-me-not” symbol after completing their training, so they can be identified as being able to help sufferers.

Other measures include requiring health care professionals to ask all patients aged between 65 and 74 about their memory as part of every standard health check. A £1m prize fund will reward any NHS organisation  finds ground-breaking ways to  reduce the number of undiagnosed people with dementia.

Jeremy Hughes, Chief Executive of Alzheimer’s Society said: “Dementia is everyone’s problem and we all need to be part of the solution. Day- to-day tasks such as going to the shop or catching a bus can become increasingly difficult for people with dementia. Without a helping hand, this can mean people are left feeling isolated, unable to be part of their community and in some cases even unable to continue living at home.”

The priority given to early diagnosis and increasing public awareness of dementia will be highlighted next week when the Government publishes its “mandate for the NHS” over the next year.

Dr Eric Karran, Director of Research at Alzheimer’s Research UK said: “At a cost of £23 billion  a year to the UK economy, we all agree that dementia is not a problem we can ignore.”