14-01-10 dementia monitoring report

26
Dementia Monitoring Report: 13 December – 10 January MEDIA – PRINT Comment: Dementia delusions: Those of us who know the reality are sceptical about G8 promises of a war on the disease (Richard Ashcroft, The Guardian) Hunt: Let's fight the illness that 'trashes families' (Georgia Graham, The Daily Telegraph) Dementia could be a human disaster (Rasul Shaf, The Sun) It's not a permanent hangover ... it's the perimenopause! (The Daily Mirror) Alzheimer's source found (Tom Whipple, The Times) Pill could spare 500,000 the agony of Alzheimer’s (Jenny Hope, Daily Mail) Test to provide instant Alzheimer's diagnosis (Sarah Knapton, The Daily Telegraph) Scandal of dementia death toll (The Daily Express) Cigarettes damage your brain ... (Charlie Cooper, The Independent on Sunday) Dementia cases flood A&E units (Lucy Johnston, Sunday Express) Lifestyle choices linked to dementia (John Von Radowitz, The Sun) Fat link to dementia (The Sun) The best treatment for Alzheimer's is tenderness; Dementia is a scourge, with victims ever more isolated, but rather than pray for a wonder cure we should open our hearts and our homes to sufferers, says AA Gill (AA Gill, The Sunday Times) Alzheimer's experts have target in sights (Miriam Stoppard, The Daily Mirror) MEDIA – WEB Living at home with dementia (Medical News Today) Massive neuron death in Alzheimer's may be caused by raw ingredients of plaques & tangles working in concert (Medical News Today) Test could give two-year warning for Alzheimer's (Nursing Times) PARLIAMENTARY MONITORING House of Commons Written Question: Alzheimer's Disease (16/12/13) House of Commons Oral Question: (16/12/13) House of Lords Oral Question: G8 Summit on Dementia (17/12/13) House of Commons Written Question: Dementia (18/12/13) House of Commons Written Question: Dementia (19/12/13) House of Commons Written Question: Dementia (6/1/14) Westminster Hall Debate: Health Care in London (8/1/14) SOCIAL MEDIA MONITORING Twitter

Upload: plmr-political-lobbying-media-relations

Post on 31-Dec-2015

33 views

Category:

Documents


0 download

DESCRIPTION

14-01-10 Dementia Monitoring Report

TRANSCRIPT

Page 1: 14-01-10 Dementia Monitoring Report

Dementia Monitoring Report: 13 December – 10 January

MEDIA – PRINT

Comment: Dementia delusions: Those of us who know the reality are sceptical about G8 promises of a war on the disease (Richard Ashcroft, The Guardian)

Hunt: Let's fight the illness that 'trashes families' (Georgia Graham, The Daily Telegraph) Dementia could be a human disaster (Rasul Shaf, The Sun)

It's not a permanent hangover ... it's the perimenopause! (The Daily Mirror) Alzheimer's source found (Tom Whipple, The Times) Pill could spare 500,000 the agony of Alzheimer’s (Jenny Hope, Daily Mail) Test to provide instant Alzheimer's diagnosis (Sarah Knapton, The Daily Telegraph) Scandal of dementia death toll (The Daily Express) Cigarettes damage your brain ... (Charlie Cooper, The Independent on Sunday) Dementia cases flood A&E units (Lucy Johnston, Sunday Express)

Lifestyle choices linked to dementia (John Von Radowitz, The Sun) Fat link to dementia (The Sun)

The best treatment for Alzheimer's is tenderness; Dementia is a scourge, with victims ever more isolated, but rather than pray for a wonder cure we should open our hearts and our homes to sufferers, says AA

Gill (AA Gill, The Sunday Times) Alzheimer's experts have target in sights (Miriam Stoppard, The Daily Mirror)

MEDIA – WEB

Living at home with dementia (Medical News Today)

Massive neuron death in Alzheimer's may be caused by raw ingredients of plaques & tangles working in concert (Medical News Today)

Test could give two-year warning for Alzheimer's (Nursing Times)

PARLIAMENTARY MONITORING

House of Commons Written Question: Alzheimer's Disease (16/12/13) House of Commons Oral Question: (16/12/13) House of Lords Oral Question: G8 Summit on Dementia (17/12/13) House of Commons Written Question: Dementia (18/12/13) House of Commons Written Question: Dementia (19/12/13) House of Commons Written Question: Dementia (6/1/14) Westminster Hall Debate: Health Care in London (8/1/14)

SOCIAL MEDIA MONITORING

Twitter

Page 2: 14-01-10 Dementia Monitoring Report

MEDIA - PRINT FRIDAY 13TH DECEMBER Comment: Dementia delusions: Those of us who know the reality are sceptical about G8 promises of a war on the disease (Richard Ashcroft, The Guardian) This week's G8 dementia summit has put the disease into the headlines. Health ministers from the world's leading nations committed to developing a cure by 2025. So why am I left feeling so underwhelmed? The first thing that struck me is how violent the rhetoric suddenly seems. David Cameron and Jeremy Hunt use the language of war: "fight-back", "stealing lives", "explosion", "shock", "timebombs" and so on. They discuss dementia as if it were both news that we were unaware of and that it is somehow our collective fault for being unaware of it. It may well be news to them, but it is certainly not news to, nor the fault of, those of us who have been dealing with dementia in our families, or fundraising, or trying to get decent quality services. Another thing I found troubling was the incoherence. On the one hand, we are told that it should be a major part of governments' dementia policy to reduce the fear and stigma surrounding the condition, to "normalise" it and integrate it into medical and social care, rather than hiving it off to some separate (and under-funded) part of the system or leaving it entirely to families. But on the other, we have this terrorising language combined with the assertion that dementia is not a normal part of ageing. I think one can make coherent sense of all this, if one tries, but at the level of speech-making aimed at public understanding, it is a mess. Analogies are now being drawn with HIV and cancer. This operates on two levels. First, it stresses the scale of the problem and the differences in public perception. Second, it suggests that the strategies for tackling HIV and cancer will work for dementia. But when governments decided at the G8 summit in 2005 to "do something" about HIV, they could do so because there was already effective treatment for managing the disease; the problem was delivery and cost. There is no effective treatment for dementia. Our leaders borrow the rhetoric of Richard Nixon's "war on cancer" or the currently fashionable language of "grand challenges"; setting arbitrary deadlines for "breakthroughs" in treatment. It's good to have goals. But the public is given no sense of whether they are achievable or make scientific sense. A cure by 2025? It would take that long to bring a new drug to market - if they had a good candidate, and they don't. Another big announcement was about early diagnosis, including the use of brain scans. Again, you are given no idea of whether early diagnosis is actually that useful, or whether brain scans are the best way to do it. It sounds good though. Until you remember that for most people in the UK, at least, a diagnosis is the beginning and the end of the care they get from society and the NHS. Most people get no support at all. My stepmother was discharged from old age psychiatry at her second appointment because there was "nothing they could do"; she's had no support at all from local social services; and her GP can lend a sympathetic ear to us, but that's all. We're left to our own devices, and we struggle on as best we can. Spending relatively small sums on big society-type initiatives is all well and good but it won't help the fragmented health services deal with dementia better. Indeed, it may fragment efforts further. Then there's what they don't say. For all the talk of international co-operation and research, we hear little about the specific role of governments which in some cases is making things worse. Dementia is still seen as a personal problem, framed as one in which your fate is fixed by whether or not you are treated well by individual carers. It is seen as one where, if you took the right preventive measures and - maybe, one day - the right medicine, you would be OK. But this conveniently leaves out the way in which benefits, social care services and financial support to carers are being cut.

Page 3: 14-01-10 Dementia Monitoring Report

It is nice to hear that governments want to take dementia seriously. But until they acknowledge how their policies are making the lives of families with dementia worse, all this is fine talk and not much else . The language of "war" in health and medical research is over-used. And if you declare war on dementia, while waging war on people affected by dementia, then do not be surprised if we are angry, not grateful. SATURDAY 14TH DECEMBER Hunt: Let's fight the illness that 'trashes families' (Georgia Graham, The Daily Telegraph) DEMENTIA is the only illness that "comprehensively trashes families", the Health Secretary has said, as he warned that it can have a bigger impact on carers than on sufferers. With David Cameron this week pledging to lead a global "fight–back" against dementia, ministers have now said they are considering setting up a dedicated phone line to offer support to carers. The vast majority of care for people with dementia is provided by family and friends, often without financial help. There are 680,000 primary carers of people with dementia, experts have said. Jeremy Hunt, the Health Secretary, said: "[Dementia] is the only disease that really comprehensively trashes family relationships that have been built up over decades. Very, very few people would want their lives to end that way." Speaking at a meeting held by the Dementia Movement, Mr Hunt added: "It is one of the only diseases that actually has more impact on family members who care for them than on those who have the disease." The Prime Minister this week said that a cure for dementia could be found within 12 years and announced a doubling in funding for research. The Daily Telegraph disclosed that tens of thousands of pharmacists, bus drivers and bank clerks are being trained to recognise signs of dementia as part of a new "front–line force" against the disease. Nick Clegg, the Deputy Prime Minister, has said that Britain owes dementia carers "a great debt of gratitude" and suggested the Coalition would look into setting up a system to advise carers. Mr Clegg said a dedicated help line offering advice for dementia carers would be an "extremely good idea" and not "unduly complicated" for the Government to set up. SUNDAY 15TH DECEMBER Nicotine is good for you, says tobacco firm scientist (Clare Conway, John Arlidge, The Sunday Times) A SENIOR molecular biologist this week flew in the face of decades of government health warnings and said the unsayable — smoking, or at least nicotine, is good for you. The startling claim, by a scientific adviser to the tobacco industry, came as researchers from New York University last week warned that smokers of the new wave of ecigarettes may inhale more nicotine and other toxins than regular smokers. The number of British electronic cigarette smokers has topped 1.3m, including celebrity puffer Kate Moss and veteran wheezers Ronnie Wood and June Brown, who plays Dot Cotton in the soap EastEnders and controversially wielded an ecigarette on a recent edition of the Graham Norton Show. In an interview with The Sunday Times Magazine, David O'Reilly said he believed nicotine had a positive impact on the brain and smoking an ecigarette was as "safe as drinking a cup of coffee".

Page 4: 14-01-10 Dementia Monitoring Report

"When you take nicotine, your brain works better. It helps with cognition, stimulates and relaxes," said O'Reilly, who is employed by British American Tobacco, the London-based manufacturer of Benson & Hedges, Dunhill and Lucky Strikes. BAT, anxious to cash in on the booming — and largely unregulated — ecigarette market, has launched Vype, its first mass-market electronic cigarette or "vaper". O'Reilly's claims were branded "irresponsible" for only "telling one half of the story" and "an attempt to sell as many cigarettes as possible" by Professor John Britton, who leads the tobacco advisory group for the Royal College of Physicians. "It is true that, in single use, nicotine probably does improve concentration and hand-eye co-ordination, on a par with what you get from caffeine. But it is also a powerfully addictive drug, and there comes a time when you need nicotine just for your brain to function normally," he said. Will Hill, a spokesman for BAT, said the company "absolutely" stood by O'Reilly's remarks. He said that nicotine was good for health as it was being used by pharmaceutical companies to treat Parkinson's and Alzheimer's. He added: "O'Reilly is not saying nicotine is good for you like keeping hydrated or not injecting heroin is good for you." He did not dispute nicotine was addictive. Responding to the statement that a cup of coffee was akin to an ecigarette, Hill claimed O'Reilly had simply repeated a claim made first by Britton. However, Britton said he "didn't recall ever saying that" and said likening an ecigare tte to coffee was a "distortion" because nicotine was not the only product in an electronic cigarette. "Essentially, we don't yet know how dangerous an ecigarette is. They haven't been around long enough to know." A spokeswoman for Cancer Research UK agreed, saying: "We don't fully understand the long-term effects of nicotine use." She added: "Ecigarettes are not licensed in the way that products like nicotine patches and gum are — so consumers don't have the same assurance of their safety and effectiveness." MONDAY 16TH DECEMBER Dementia could be a human disaster (Rasul Shaf, The Sun) ONE of the most important stories last week was the meeting of G8 Ministers in London. Top of the agenda was funding for one of the greatest threats of modern times — dementia. This affliction is a deterioration of the memory. Those who suffer from it regularly become confused, disoriented and eventually lose the ability to look after themselves. Dementia is particularly bad because it not only ruins the lives of those who contract the disease, but the impact on their families can be devastating. It can be impossible to live a normal life when you have to provide full-time care for a loved one. This disease affects 44 million people world-wide. As if this wasn't bad enough, dementia disproportionately affects the elderly. Because we're living longer the number of people who suffer from dementia is rocketing. It's estimated that by 2050 around 135 million people will be afflicted. If this horrible disease isn't tackled, we could end up in a situation where there aren't enough carers to look after all the dementia patients.

Page 5: 14-01-10 Dementia Monitoring Report

If nothing's done, we could end up sleepwalking into a humanitarian catastrophe. Fortunately the world is waking up to the crisis. At the G8 meeting in world leaders committed to developing a cure or treatment for dementia before 2025. It's shocking the fight-back against this disease is just beginning. The G8 plan to increase co-ordination on dementia research — and the British Government will double its spending on research. Let's all hope that this will be enough. THURSDAY 19TH DECEMBER It's not a permanent hangover ... it's the perimenopause! (The Daily Mirror) SIOBHAN McNally is only 44, but she's finding "the change" starts way before you hit your 50s. "Agnus castus, black cohosh and flax seed. No, not the line-up at a thrash metal gig - it's the contents of my medicine cabinet these days. If it was ibuprofen and condoms in my 20s, and teething gel and baby bum cream in my late 30s, it is now a temple to sorting "ladies' problems". Having been promised that I'd be in my pulling prime in my 40s, it turns out the only rampant thing about me these days is my hormones. You only have to take one look at the line-up of an episode of Loose Women to know the benefits of HRT, so I wasn't worried about going through the menopause in my 50s. But I've realised the symptoms I've been experiencing are not an extended hangover from my 44th birthday last June, and I've now added a word to my vocabulary - perimenopausal. The perimenopause seems to have been a well -kept secret until now I'm going through it, a bit like finding out two hours into labour that childbirth is in fact absolute agony. I'd never heard of it until I typed my symptoms into Dr Google - irregular periods, moody, bloated, forgetful, and being the wrong side of 40 - and discovered I wasn't going mad. The age your mum went through the change is a good indicator of when you can expect your child -bearing years to end. But as I'm beginning to learn, for some women in their 30s, but usually after 40, the creep towards menopause can be distressing. At 68, my mum still reckons she's going through the change, although I don't think this is medically possible. "It's the hot flushes, dear," she told me recently, when I phoned for advice. I sometimes wonder whether it's in fact dementia that's taking over and Mum's forgetting to take one of her jumpers off when putting on a new one in the morning. "What age did you start noticing changes in your cycle?" I sighed. "I think it was back in the early 80s," said Mum. "That would mean you've been going through the menopause for 40-odd years," I said. "Even the Cold War didn't last that long."

Page 6: 14-01-10 Dementia Monitoring Report

It occurred to me that despite having been a woman all my life, I still didn't know much about how it all works. So rather than order a case of smelling salts for myself, I thought I'd research what happens when things go wrong in lady land. It turns out that only 12% of women wake up one day and never have another period, so that means the vast majority of us will experience the perimenopause in some form. The perimenopause starts when you suddenly realise your period is late, and there's more chance of you growing a moustache than being pregnant. What's that? You did grow a moustache? Well, I was coming to that bit next. I found no fewer than 35 symptoms of the perimenopause when I searched online - everything from night sweats and itchy skin to incontinence and increased facial hair. Basically as you age, the number and quality of your eggs falls, and your ovaries produce fewer of the sex hormones oestrogen and progesterone needed to help those egg follicles mature. It's your ovaries' way of saying: "Nothing more to see here, move on..." The first stage of perimenopause is when progesterone levels decline, leaving oestrogen as the dominant hormone. This stage makes you feel like you've got permanent PMT with bloating, cramps, mood swings and tender boobs. In my case, I got so bloated that getting dressed was like trying to squeeze a windsock into a pair of skinny jeans. At one point, my period was 30 days late, and I had swollen up so much, only the duvet would fit me. During the second phase of the perimenopause, oestrogen levels decline, leading to symptoms such as hot flushes, memory problems, migraines and insomnia. I also found myself getting irritable at the slightest thing. One day I got so angry after calling my bank to explain someone had been writing cheques in my name that I insisted they call the police. Luckily they didn't, as that person turned out to be me. Third phase, late perimenopause, sets in when both oestrogen and progesterone decline to menopausal levels and symptoms may start to recede, unless you're my mother. The average perimenopause is three to four years, although it can last a decade. And once you've gone through 12 consecutive months without a period, you've hit menopause. Unlike the menopause, you can't tell if you're perimenopausal. Not all women get symptoms, and doctors can miss signs. Even testing blood for hormone levels is unreliable due to monthly fluctuations in egg quality. Worried I'd be starting on the HRT chasers earlier than I'd thought, I consulted my local GP, Christine Field. She explained: "HRT is only licensed for 'hard' menopausal symptoms like hot flushes, not softer ones like libido loss and memory problems. "But there is evidence to suggest there is a 'window of opportunity' for HRT, and that women in their 50s should ask for it. "The misconception about the perimenopause is that periods get lighter and less frequent, but they often do the opposite. Exercise helps - as does avoiding caffeine, alcohol and staying trim." "Sod that," I thought. So are there any other therapies? "We usually recommend agnus castus extract and red clover isoflavones. And there is evidence that phyto-oestrogens work. "These are found in soy beans, and as there is no word for the menopause in Japan, they must be on to a good thing," says Dr Field.

Page 7: 14-01-10 Dementia Monitoring Report

I've been taking agnus castus and vitamin B supplements daily for the past two months, which seems to have helped. The bank hasn't had a phone call for a while, and my duvet's back on the bed, where it should be. Get more information on the perimenopause at patient.co.uk and thebms.org.uk Although I've been a woman all my life, I still don't know much about things that go wrong in lady land MONDAY 23RD DECEMBER Alzheimer's source found (Tom Whipple, The Times) The part of the brain in which Alzheimer's originates has been identified, leading to hopes that the disease can be diagnosed and treated more effectively. Scientists from Columbia University have spotted changes in the lateral entorhinal cortex (LEC), towards the front of the brain, that they claim are the initial signs of the condition. At the start of the study, the 96 men and women over 65 were free from Alzheimer's, but after 3½ years 12 had developed the disease. Brain scans showed that the changes occurred first in the LEC before spreading. Scott Small, from the university, said: "The LEC is considered to be a gateway to the hippocampus, which plays a key role in the consolidation of long-term memory. If the LEC is affected, other aspects of the hippocampus will be affected." The discovery could be useful in developing screening for the condition. FRIDAY 27TH DECEMBER Pill could spare 500,000 the agony of Alzheimer’s (Jenny Hope, Daily Mail) A NEW Alzheimer's drug that could reduce a crucial component of the disease by 90 per cent is to be tested on thousands of patients. Experts say 'exciting' research on a drug to combat brain plaques could lead to a generally available pill within five years. If the trials are successful, the drug would help around 400,000-500,000 Britons deemed at 'high risk' of developing Alzheimer's because they have memory problems in late middle age. In patients with Alzheimer's, clumps or plaques of a substance called amyloid beta protein stick to brain cells, leading to changes in memory, mood and behaviour. Results from a previous three-month study of 200 patients, and earlier studies, show the drug reduces these amyloid plaques by up to 90 per cent. Both healthy volunteers and Alzheimer's patients took the drug without any serious side effects. The new trials will involve more than 3,000 patients in 21 countries, including the UK. The first 18-month phase of the study will enrol 1,960 patients with mild to moderate Alzheimer's, a group that already has significant plaque build-up. The second study, lasting two years, will be done in 1,500 patients who are at an earlier stage, with memory difficulties.

Page 8: 14-01-10 Dementia Monitoring Report

Dr Craig Ritchie of Imperial College, one of the international team of researchers, said the drug - presently called MK-8931 - is being developed as a pill so that it will be easy to take. 'If the trials prove it works, it will have to go through licensing procedures, so it will probably take about five years to become available. 'Around 80 per cent of those developing Alzheimer's would be eligible, getting on for 400,000 to half a mil lion people,' he said. The drug, known as a BACE inhibitor (Beta Amyloid precursor protein site-Cleaving Enzyme inhibitor), is an enzyme that removes the sticky amyloid. The trials must show the anti-amyloid effect actually makes a difference to patients with the disease and prevents it from developing in those who merely have memory problems. There have been fears that amyloid might be a by-product of the disease rather than its cause. Dr Ritchie, who is honorary consultant at the West London Mental Health NHS Trust, said the strategy adopted by this drug is completely new. He explained: 'The aim is to intervene before symptoms take hold. 'People with memory problems aren't definitely going to get Alzheimer's but there's a high likelihood it will affect two-thirds to three-quarters. 'Other BACE inhibitors have not got far in development. 'Stopping the formation of plaque early on, when the clumps are small and most toxic, is a fresh approach. 'There is a great deal of excitement around this in the academic and medical community but there is a huge amount of work to do.' James Pickett, head of research at the Alzheimer's Society, said: 'Previous BACE inhibitors have failed at this hurdle before, though there are important differences between this latest drug and the one that entered previous trials.' Dr Eric Karran, director of research at Alzheimer's Research UK, said: 'We know Alzheimer's starts long before symptoms appear, and it's likely treatments will have more chance of success if given early, so it's positive to see this drug will be tested in people with early signs of the disease. 'We await the results of these trials with great interest. Test to provide instant Alzheimer's diagnosis (Sarah Knapton, The Daily Telegraph) ALZHEIMER'S could one day be diagnosed by a simple finger–prick blood test after British scientists discovered a way to detect small clusters of a protein that indicates the disease is present. The University of Leeds has invented a sensor which picks up tiny quantities of the amyloid–beta protein in the bloodstream. Alzheimer's is the most common form of dementia, with more than 37million sufferers worldwide, and 800,000 people with dementia in Britain. But currently it cannot be conclusively diagnosed until after death. The team at Leeds have invented a biosensor – an electronic chip that generates a signal in the presence of amyloid clusters. The stronger the signal, the more protein is present. Previous research had shown that the level of amyloid clusters in a patient's bloodstream correlates with the level of amyloid clusters in the brain, which is linked to the onset and severity of Alzheimer's disease.

Page 9: 14-01-10 Dementia Monitoring Report

Dr Jo Rushworth, who led the study, said: "Amyloid–beta is a bit like chewing gum; it is very sticky and clumps together in balls. In Alzheimer's disease, you get lots of big sticky balls of amyloid–beta, made up of many individual amyloids, which latch on to brain neurons. "Until now, it has been very difficult to pick out these amyloid clusters from the individual amyloid proteins which are present in healthy people. Our biosensor test picks out the ballshaped amyloid clusters without detecting the individual amyloids. "We are still at the laboratory stage but, eventually, if we are able to develop this technology, we would be looking to have a mobile phone–sized device where you could do a finger–prick blood test and get an immediate readout." Dr Simon Ridley, the head of research at the charity Alzheimer's Research UK, which provided funding, warned: "This new technology is still at an early stage of development and further research will be needed to determine its potential for use in the clinic." The study is published in the Biosensors and Bioelectronics journal. SATURDAY 28TH DECEMBER Scandal of dementia death toll (The Daily Express) DEMENTIA patients are up to 50 per cent more likely to die in hospital than those without the condition, a study of NHS records has found. Those suffering with the condition had higher death rates, longer stays and more chance of readmission than patients without it, according to a study of 17 million hospital visits. The two-year research found dementia patients were 20 per cent more likely to die while in hospital than other patients — rising to 50 per cent in some regions. And it also revealed people suffering with conditions such as Alzheimer's disease were three times more likely to suffer a fall. The report by health care intelligence analysts CHKS examined NHS records covering all hospital stays in 2010 and 2011. Last night George McNamara, head of policy and public affairs at the Alzheimer's Society, said more needed to be done to prevent the trend. A spokesman for the Department of Health said the number of falls in hospital resulting in harm have dropped year on year but admitted: "We need to do much more." SUNDAY 29TH DECEMBER Cigarettes damage your brain ... (Charlie Cooper, The Independent on Sunday) Smokers double the risk of dying from a stroke, researchers have found. The warning comes as public health authorities begin a new campaign highlighting the harms of smoking to the brain. A new television commercial, which will air for the first time tomorrow, will "bring to life the toxic cycle of dirty blood" caused by inhaling cigarette smoke. While the harms of smoking to the heart and lungs are increasingly well known and understood, health officials will draw attention to the way chemicals such as arsenic and cyanide can damage cells in the brain - increasing the risk of stroke, but also of cognitive decline and dementia.

Page 10: 14-01-10 Dementia Monitoring Report

England's chief medical officer, Dame Sally Davies, said that she was "extremely worried" that people were still underestimating the health risks of smoking, despite it being the single biggest cause of premature deaths, with one in two smokers dying early because of diseases related to their habit. The research, published in the New England Journal of Medicine and carried out by experts at the American Cancer Society and Harvard School of Medicine, looked at 50-year trends in mortality in the US, and also found significant increases in mortality rates from smoking-related diseases among women. More than 10 million British adults smoke - around 22 per cent of men and 19 per cent of women. A second study, carried out at University College London (UCL), has shown that cognitive decline in men can be nearly 38 per cent faster among persistent smokers. Dr Gareth Hagger-Johnson, research associate at UCL, said that "all smokers should consider quitting to help protect their brain from serious long-term harm". The new advertisement shows a smoker inhaling, before following the route of harmful chemicals into his lungs, out into his bloodstream via his heart, and then up into the brain. "We know about the serious effect smoking has on the heart and lungs but smokers need to be aware of how much potential damage is being done to the brain and other vital organs through toxins in cigarettes entering the blood," said Dame Sally. "However, it is not all doom and gloom for smokers looking to quit this New Year. Within five years of stopping smoking, your risk can be reduced to the same as a lifetime non-smoker." There are around 152,000 strokes in the UK every year - one every five minutes. A stroke occurs when the blood supply to the brain is cut off, causing brain cells to be damaged or die. It is the third-biggest cause of death and the brain damage suffered by many survivors also makes it the most common cause of disability. Joe Korner, of the Stroke Association, said: "The more you smoke, the more your risk increases … Stopping smoking is one of the most important things you can do to reduce your risk of stroke." Professor Kevin Fenton, director of health and wellbeing for Public Health England, said: "Highlighting the unseen damaging effect smoking has on the body's major organs provides a real motivation for people to stop." 50% of all regular cigarette smokers will eventually be killed by their addiction 100,000+ smokers in the UK die from smoking-related causes every year £2,900 The amount a 20-a-day smoker of a premium cigarette brand will have spent on the habit in 2013 Dementia cases flood A&E units (Lucy Johnston, Sunday Express) CARE services are "collapsing" as the number of dementia sufferers being taken to accident and emergency has soared by 64 per cent over the past five years, health critics claimed last night. A Sunday Express inquiry shows 600 emergency admissions or readmissions are being made every day for people with dementia. The numbers have spiralled at an alarming rate with 219,064 admitted in 2011/12 compared with 133,373 in 2007/08. George McNamara, head of policy at the Alzheimer's Society, said: "This is very worrying. Demands on social services mean many local authorities are now only providing crisis or highlevel support rather than proper care and prevention.

Page 11: 14-01-10 Dementia Monitoring Report

"This has led to a growing crisis in which emergency services are becoming default rather than a last resort. Financially this is unsustainable." Shadow Health Secretary Andy Burnham said: "Many vulnerable older people have seen home care taken away or are paying much higher charges for care." Shadow Health Minister Jamie Reed said: "Thousands of frightened and frail people are in the backs of ambulances, the worst place for them to be. David Cameron needs to shore up England's collapsing social care services." A recent study by the Royal Voluntary Service charity revealed almost 150,000 older people had no support on returning home from hospital. It also found a quarter of older people discharged after an overnight stay felt very vulnerable or unable to look after themselves yet only one in five received social services or hospital support. Care Quality Commission inspections have uncovered cases of patients being discharged late in the evening in their night clothes. A woman in her 90s from Somerset living alone and using a walking frame was discharged while her broken wrist was still in plaster, leaving the arm virtually useless. In October a 76-year-old grandmother with severe dementia was discharged from Cumberland Infirmary in Carlisle wearing only a flimsy nightgown. Sylvia Dawson, who had been admitted following a fall at her home, was put in a taxi by hospital staff but the driver was given the wrong address and she was incapable of telling him whe re she lived. Several days after the harrowing incident her condition deteriorated and she had to be transferred to a nursing home. A spokeswoman for North Cumbria University Hospitals NHS Trust said it had apologised for the incident, which it was investigating. A Department of Health spokesman said: "We are determined to make England one of the best places in Europe for dementia care. If we can get care right for people with dementia we can get it right for everyone. "We are better at diagnosing dementia now, which means more people are getting the care they need. "We want to improve care for people with dementia by improving diagnosis rates even further and making sure people receive the right support in their community to reduce unnecessary A&E admissions. That's why we have made £3.8billion available for better integration of health and social care." TUESDAY 31ST DECEMBER Lifestyle choices linked to dementia (John Von Radowitz, The Sun) UNHEALTHY cholesterol levels are linked to a key brain indicator of Alzheimer's disease, scientists have now claimed. Research from the US suggests that relative amounts of "good" and "bad" cholesterol in the blood influence the build-up of harmful proteins in the brain called beta amyloid plaques.

Page 12: 14-01-10 Dementia Monitoring Report

Experts draw a distinction between "good" cholesterol, or high density lipoprotein and its more dangerous relative — low density lipoprotein. Professor Bruce Reed of the University of California noted: "Unhealthy patterns of cholesterol could be directly causing the higher levels of amyloid known to contribute to Alzheimer's, in the same way that such patterns are known to promote heart disease." Dr Laura Phipps added: "This report indicates a healthy lifestyle in midlife could have benefits for our cognitive health into older age." Fat link to dementia (The Sun) EATING fatty foods could increase the risk of developing Alzheimer's, US scientists have found. Unhealthy levels of cholesterol in a patient's blood are said to be an indicator of the disease. Boffins say "bad" cholesterol, found in cakes, causes more brain plaque. Dr Laura Phipps, of Alzheimer's Research UK, said: "The findings add to existing evidence that cholesterol could play a role in Alzheimer's." SUNDAY 5TH JANUARY The best treatment for Alzheimer's is tenderness; Dementia is a scourge, with victims ever more isolated, but rather than pray for a wonder cure we should open our hearts and our homes to sufferers, says AA Gill (AA Gill, The Sunday Times) If you were to update Dickens's A Christmas Carol, the object of the great weeping violin cadenza of sentimental sympathy wouldn't be tiny Tim, the crippled child; it would more typically and contemporarily be old Tim — grandad Tim diminished by Alzheimer's. Christmas, we continue to tell ourselves, is for families and we think of the children, but this Christmas — and increasingly over recent years — the poor, the needy and, in the Victorian sense, the pathetic have been the elderly. The most testing time of our lives has shifted from the multiple perils of infancy and childhood to the long, sad, incremental shutdown of old age. The modern version of the workhouse is the nursing home. At this season adult children trudge along to sit in common rooms strung with miserably jolly streamers and filled with plastic-covered comfy chairs and flickering silent televisions and the sound of Nat King Cole's Christmas Song to sit beside parents suffering paper hats and dementia. The adult children talk with strained love, loudly and slowly, of the past and show photographs of other Christmases in an attempt to sift the ruins of memory and jog some coherent recognition; some sense of being family. But the memories are more likely to remind the children of how far their parents have drifted away from the vital, fun ny, generous and heroic figures they once were. At too many Christmas lunches places are set for ailing, ancient members of families who are there but not present; the living ghosts of Christmases past and the fearful warning of Christmases to come. No one in middle age will need to be told or reminded about dementia. We have all of us seen it first-hand among close family, colleagues, neighbours; it is a great, rarely spoken fear — the shadow cast over every new year resolution. When we forget a name, or the word for "what's it", we are pricked with the terror that this might be the first telling, fugitive symptom. Plenty of the middle-aged will have scanned the first sentence of this article and hurried on. Why depress yourself while you still have choice? Last year was a big one for Alzheimer's: there were stories every week of breakthroughs, interesting research, promising laboratory mice and potentially significant brain scans. Daily there

Page 13: 14-01-10 Dementia Monitoring Report

were the homespun treatments and alternative preventatives: exercise might help, or coffee, learning a language, being married, not retiring, turmeric. As I write, I see that The New York Times is trumpeting a study of army veterans that shows large doses of vitamin E have produced signs of helping some sufferers — but not much and not for long. Vitamin E in large doses can also kill you. All the research from around the world is long on possible causes and interventions, but still very short on cures. Dementia continues to grow rapidly as a condition that is the consequence of the success of 100 years of medical research into other diseases. We live longer but the irony, the corollary, is that we enjoy it less. Last year was also the first time that significant criticism of the provision for pensioners became part o f the political mainstream — are their benefits protected at the expense of the young? Wasn't this the generation that selfishly emptied the larder and left the washing-up for their children? At the end of the year there was a conference on dementia — it was a big and concerted deal. It ended with good intentions all round and guarded optimism and the usual call for more investment in research; more planning for an increasingly aged population. There has been a breakthrough in early diagnosis. The government and the Alzheimer's Society, for whom I am an ambassador, want us all to go and get screened. But if you ask your doctor if he or she has been screened, the likelihood is they will prevaricate and then say no. My own GP asked wearily why would he want to know: there is very little his colleagues could do for him. The available drugs work for a bit, for about six months, for some sufferers. The society and the healthcare professionals say early diagnosis means you can do longterm planning while still compos mentis and that families can be prepared — well, up to a point. I watched my father die of Alzheimer's. I don't know what he would have done differently, or what we would have felt differently, meeting his disaster earlier. Alzheimer's is a disease that particularly acutely affects people who don't have it and, as Hillary Clinton was so fond of pointing out, "it takes a village to bring up a child", so it takes a whole community to look after the elderly. We should stop focusing on a drug that will fix things and look at the way we treat not the disease, but the patient; the old. There will be a cure some time, but probably not in time for those of us who worry about it. One of the exasperating causes of dementia is loneliness and the cure for that is not something we can expect the government to fund, or to hand over the responsibility for it to immigrant health workers. We should make far more of old people not as a charity but as a resource, an investment and a pleasure. Nursing homes and sheltered accommodation are hidden away behind electric gates and laurel hedges and are given euphemistic names. There is a massive shame and guilt attached to the people inside them and to the people who put them there. There is an embarrassment and awkwardness in dealing with the elderly that forces them apart from the rest of us. They don't command respect or incite interest. They are seen as the concern of social services rather than of individual members of our community. Looking after Alzheimer's patients shouldn't have to be either the wearingly sad martyrdom of a child (almost always a woman) or an elderly spouse. Neither should it be left to the questionable practices of private care homes, or the occasional visit of a stretched and haggard Filipino care worker: it should be all those things, with the added ingredient of the rest of us. This isn't simply about money or "realigning resources going forward" — it's about a collective attitude and civic responsibility. Close to where I live in west London is a model retirement home where the guests live in comfortable splendour, have companionship and privacy but plenty of visitors. They have security and medical treatment and a collegiate life that banishes loneliness. They are also deeply respected by the local community, so much so that they rarely have to buy their own pints or stand in queues. Strangers wish them well and ask if they can have photographs taken with them; they are the Chelsea pensioners. This is not, I admit, a model that can be easily rolled out across the country — old soldiers in tricorn hats and red coats inspire a special affection, but shouldn't retired teachers get the same fondness? Postmen and bakers, loss

Page 14: 14-01-10 Dementia Monitoring Report

adjusters, plumbers, farmers — shouldn't your mum and dad, shouldn't everyone? There is nothing complicated or magic about the Chelsea pensioners' lives — the difference is the respect they are offered by the rest of us. It means they are still valued and an integral part of their wider community. The elderly ought to be able to count on the kindness of strangers as well as the love of their families. Alzheimer's, dementia, incapacity, the fading of senses and abilities, are the natural consequences of ageing. We will all have to face them and we could start by helping others and making sure no one does it fearfully and alone. Surely that must be a basic measure of humanity. There is nothing good or positive to be said of Alzheimer's or dementia, but they are symptoms of something that we should be proud of: life expectancy, extended through medical and social care, and a democratic will. There is a lot to be said for that but we don't get all the way to being old simply to be left to fail alone. When scientists do come up with a prophylactic cure for Alzheimer's, we will still be l eft with old age and, ultimately, loss and none of us should have to face that without a hand to hold. ''There is massive guilt attached to people in nursing homes and to the people who put them there THURSDAY 9TH JANUARY Alzheimer's experts have target in sights (Miriam Stoppard, The Daily Mirror) The headlines have been saying: "Cure for Alzheimer's is within reach." Well, yes, the latest research is very exciting, but a cure is a way off. The encouraging new findings are from tests in mice, and we're not mice. There are many steps between lab tests on mice and a treatment in human beings. Still, these new discoveries are thrilling because they involve the first drug to halt the brain degeneration that is at the basis of Alzheimer's. The new compound works by switching off an overactive natural defence mechanism in the brain. Researchers believe it is responsible for memory loss and mental decline in people with Alzheimer's. Scientists are impressed. Roger Morris from King's College London, who wasn't involved in the research, said: "This finding, I suspect, will be judged by history as a turning point in the search for medicines to control and prevent Alzheimer's." Giovanna Mallucci, a neurologist at the University of Leicester, who led the research, said: "It's the first time any compound has been given that prevents neurodegeneration. This may "Now we know it's possible to develop a treatment, this is a starting point." Dementia affects about 820,000 people in the UK. Scientists estimate that de laying the onset of Alzheimer's by five years would halve the number of people who die with the disease. This new research, which wa published in the journal Science Translational Medicine, refutes previous work blaming deposits of sticky proteins called amyloid that clog the brains of Alzheimer's patients for the gradual loss of memory, cognitive abilities and personality. The new theory suggests the proteins are simply a visible symptom, but not the actual cause. So, how does it happen?

Page 15: 14-01-10 Dementia Monitoring Report

First the brain begins producing sticky proteins that build up into "plaques" in brain tissue. Then a defence mechanism in the brain mistakenly switches off production of all proteins, resulting in a deficit of essential proteins needed for cells to function, so cells die. The new drug allows sticky proteins to accumulate, but stops healthy cells dying. In the latest study, scientists developed a drug that reverses the natural defence mechanism by blocking an enzyme called PERK that signals the build-up of the abnormal proteins. The drug was tested in mice that were suffering from prion disease (think BSE), which is considered the best model for Alzheimer's disease. Mice given the drug experienced no mental decline and performed normally in memory tests. Their brain sho wed no neuron loss. But mice given a control treatment rapidly developed movement disorders and memory problems. Looks very promising. This finding may be seen as a turning point MEDIA – WEB SOURCES FRIDAY 13TH DECEMBER SATURDAY 14TH DECEMBER SUNDAY 15TH DECEMBER MONDAY 16TH DECEMBER TUESDAY 17TH DECEMBER Test could give two-year warning for Alzheimer's (Nursing Times)

Page 16: 14-01-10 Dementia Monitoring Report

New test can give two years’ warning of Alzheimer’s,” reports the Mail Online. The news comes from a small Canadian study that found that a specific change in brain activity seen on MRI testing, combined with certain memory difficulties, was 87.5% accurate at predicting the development of Alzheimer’s disease. The study looked at people with a condition known as mild cognitive impairment (MCI). MCI describes a range of symptoms that impact on cognition and memory, but not to such an extent that it seriously affects a person’s day to day life. Some people with MCI will go on to develop Alzheimer’s, although it is currently difficult to identify those who would benefit from treatment. The researchers performed various cognitive tests and an MRI scan on 45 people with MCI and 20 healthy people. They followed both groups over two years and compared the results of the initial tests between those who developed dementia and those who did not. They found that difficulties with memory retrieval of familiar information, coupled with thinning of the part of the brain associated with various emotional and thinking processes, could predict which people with MCI would go on to develop Alzheimer’s disease. This is not really a new test, as cognitive testing and MRI scans are already part of the diagnostic process for investigating the early signs of dementia. The findings may help predict which people are at an increased risk of developing Alzheimer’s disease, but the study size is too small for the results to change current medical practice. It is likely that these techniques will be used in larger populations to see if the results continue to be accurate. Where did the story come from? The study was carried out by researchers from the University of Montreal and was funded by the Canadian Institutes of Health Research (CIHR) and the Heart and Stroke Foundation of Canada. It was published in the peer-reviewed Journal of Alzheimer’s Disease. The media reported the story fairly accurately, but were overly optimistic that the results of such a small trial could soon be used to predict the onset of Alzheimer’s disease. What kind of research was this? This was a cohort study that followed a group of people with MCI and a group of healthy volunteers over a period of two years. MCI does not necessarily lead to dementia, and this study aimed to see if there were any factors that could predict which people with MCI would go on to develop the condition, in particular Alzheimer’s disease. Early diagnosis is important as the symptoms and signs of Alzheimer’s disease may only become apparent many years after the condition has started. This could result in a lost opportunity to start drug treatment that could slow the progression of the condition. However, as this was a cohort study it can only show an association and cannot prove causality. What did the research involve? Researchers took a group of 45 people with MCI and a control group of 20 healthy elderly people recruited from the community with no symptoms of MCI. Both groups were followed up yearly for two years. MCI was diagnosed in a memory disorders clinic through medical and ne urological assessment, as well as cognitive testing. The condition was indicated by:

Page 17: 14-01-10 Dementia Monitoring Report

cognitive memory complaint by the individual – the individual was aware they had memory problems reduced performance on clinical tests assessing memory, language or attention compared with that expected to be

seen in line with age and education essentially normal ability to perform daily activities of living no dementia, as indicated by being above diagnostic thresholds on cognitive testing

People were excluded from the study if they had:

alcohol dependence a general anaesthetic in the previous six months a history of a severe psychiatric disorder traumatic brain injury any other disease known to impair cognition

The study participants had further cognitive tests, including tests of word recall, working memory and planning abilities, as well as an MRI brain scan to look at:

hippocampal volume (part of the brain involved with memory) cortical thickness (the outer layer of brain tissue) white matter hyperintensity volume (seen in ageing and some neurological conditions)

The researchers first compared the results between the two groups. They then compared the results of people with MCI who either did or did not develop dementia within the two years of the study. Lastly, they worked out which combination of results had the highest ability to predict which people would develop dement ia. What were the basic results? Of the MCI group:

18 progressed to dementia – 15 with probable Alzheimer’s disease and 3 with probable mixed dementia of Alzheimer’s and vascular dementia

22 remained stable 5 were lost to follow-up

There were no differences between the control group and the MCI group in terms of age, gender or educational level. As would be expected, at the beginning of the study the MCI group had significantly poorer memory than the controls for:

immediate recall immediate recognition delayed free recall word pair learning

The MCI group also had significantly lower scores than the control group for working memory and planning abilities. There were no differences seen between the groups for task switching. In terms of the MRI scan results, the average cortex thickness was significantly thinner in the group who developed dementia. It was also thinner in specific areas, such as the right anterior cingulate gyrus, a region of the brain thought to be associated with rational thought and decision making. The researchers found that the combination of immediate recall and immediate recognition scores and the thickness of the cortex in the right anterior cingulate gyrus was the most accurate for predicting development of Alzheimer’s, with an overall accuracy of 87.5%.

Page 18: 14-01-10 Dementia Monitoring Report

Specificity was 90.9% – that is, 90.9% of people who will not go on to develop Alzheimer’s will not have the combination of recall and recognition problems or thinning of the right anterior cingulate gyrus. Sensitivity was 83.3%, meaning that 83.3% of people who will go on to develop Alzheimer’s will have this combination of test findings. How did the researchers interpret the results? The researchers concluded that their “findings suggest that detecting preclinical Alzheimer’s disease is probably best accomplished by combining complementary information from targeted [brain] and cogni tive classifiers, and highlight the importance of taking into account both structural and functional changes associated with the disease.” Conclusion The researchers suggest that Alzheimer’s disease can be predicted with an accuracy of 87.5% when thinning of the cortex in the right anterior cingulated gyrus is seen on MRI, alongside test results suggesting problems with recall and recognition. This research does not indicate a new “test”, as MRI and psychological testing are standard procedures when investigating the signs and symptoms of dementia. What is novel in this approach is looking at a specific combination of results as a potential way of predicting which people with MCI may develop Alzheimer’s disease. While this form of testing would be beneficial to accurately predict the onset of Alzheimer’s disease, this was a small study that only followed people over the course of two years. Some forms of dementia can take years to develop. The results of the study would need to be replicated in a much bigger sample size before the technique could be used in clinical practice. WEDNESDAY 18TH DECEMBER THURSDAY 19TH DECEMBER Massive neuron death in Alzheimer's may be caused by raw ingredients of plaques & tangles working in concert (Medical News Today) Much of the debate in Alzheimer's disease (AD) has focused on whether the protein amyloid-beta or the tau protein is the symptom or the cause of the disease. But George Bloom, Ph.D., and colleagues at the University of Virginia (UVA) have pursued another hyp othesis: much earlier interactions between the two proteins them drive adult neurons into the forbidden pathway of "cell cycle re -entry" (CCR). Dr. Bloom presented additional evidence supporting the role of CCR in AD at the American Society for Cell Biolo gy (ASCB) annual meeting in New Orleans. He will report the identification of a critical balance point between tau and a master cellular regulator that amyloid-beta oligomers disrupt. A novel group of proteins, Rac1, Gαs (Gs alpha) and NCAM, and two prote in kinase complexes, mTORC1 and mTORC2, play a role in driving mature neurons to their death, according to the UVA researchers. These new findings are scientific sequels to a series of dramatic discoveries by the Dr. Bloom's lab that unravel the molecular events that drive adult neurons in CCR. As Dr. Bloom noted in his research presentation at last year's ASCB annual meeting, most normal adult neurons are supposed to be permanently post-mitotic -- that is, they have finished dividing and are locked out of the cell cycle.

Page 19: 14-01-10 Dementia Monitoring Report

Yet in AD, neurons frequently re-enter the cell cycle, fail to complete mitosis and ultimately die. In late stage AD, up to 30 percent of the neurons in the frontal lobes of the brain are dead, surrounded by large amyloid plaques and tau -associated neurofibrillary tangles. Dr. Bloom said that he views AD as fundamentally a problem of the cell cycle, with both amyloid-beta and tau required for the interaction that pushes neurons into destructive CCR. "The massive neuron death that occurs i n AD therefore appears to be caused by the raw ingredients of plaques and tangles working in concert with each other, rather than by the plaques and tangles themselves," Dr. Bloom explained. This new research presented at ASCB 2013 follows up on results published last spring when the UVA researchers described in greater detail how amyloid-beta activates multiple enzymes named protein kinases to add phosphates to specific sites on tau, setting neurons on the pathway to CCR. Now in this new molecular "sequel," Dr. Bloom and lab members Andrés Norambuena and Lloyd McMahon implicate a novel group of proteins -- Rac1, Gαs (Gs alpha), and NCAM -- and two protein kinases complexes -- mTORC1 and mTORC2 -- as required participants to set off CCR. Their identification reveals how a fundamental balance is upset, placing neurons on the road to AD. "The mTOR complexes are master regulators of cellular proliferation, growth and metabolism," Dr. Bloom said. "Most important, our results indicate that tau normally inhibits mTOR from promoting neuronal cell replication, but that this inhibition is reversed by an amyloid beta oligomer-induced, mTOR-dependent mechanism that modifies tau. In other words, tau and mTOR regulate each other." This delicate balance is compromised by amyloid-beta oligomers in a way that allows neurons that should never replicate to re-enter the cell cycle. They fail to divide and eventually die instead. "Some of the earliest events in AD pathogenesis are therefore caused by amyloid-beta oligomers altering a fundamental neuronal signaling axis centered around tau and mTOR," proposed Dr. Bloom who said that he believes that the proteins identified in this signaling axis are potential biomarkers, and therapeutic targets for very early stages of AD, leaving the doo r open for an even more exciting sequel down the road. FRIDAY 20TH DECEMBER SATURDAY 21ST DECEMBER SUNDAY 22ND DECEMBER MONDAY 23RD DECEMBER TUESDAY 24TH DECEMBER WEDNESDAY 25TH DECEMBER THURSDAY 26TH DECEMBER FRIDAY 27TH DECEMBER SATURDAY 28TH DECEMBER SUNDAY 29TH DECEMBER MONDAY 30TH DECEMBER

Page 20: 14-01-10 Dementia Monitoring Report

Living at home with dementia (Medical News Today) Most people with dementia who live at home have multiple unmet health and welfare needs, any number of which could jeopardize their ability to remain home for as long as they desire, new Johns Hopkins research suggests. The researchers say routine assessments of patient and caregiver care needs coupled with simple fixes in the areas of safety - grab bars in the bathroom, carpets safely tacked down to prevent falls, guns locked away - and basic medical and supportive services could go a long way toward keeping those with dementia from ending up in a nursing or assisted-living facility. "Currently, we can't cure their dementia, but we know there are things that, if done systematically, can keep people with dementia at home longer," says study leader Betty S. Black, Ph.D., an associate professor of psychiatry and behavioral sciences at the Johns Hopkins University School of Medicine. "But our study shows that without some intervention, the risks for many can be quite serious." Previous research has shown that greater unmet needs among people with dementia are predictive of nursing home placement and death. Caregiver stress also foretells of nursing home admission for people with dementia. The new study, described in the December issue of the Journal of the American Geriatrics Society, also finds most caregivers have multiple unmet needs, including lack of access to resources and referrals to support service s and education about how to best care for their loved one. Black says that paying for needs assessments and putting into place preventive safety measures isn't always feasible, and programs like Medicare don't typically cover them. "If they did," she says, "it may be far more cost-effective than long-term nursing home care." An estimated 5.4 million people in the United States have Alzheimer's disease and other types of dementia, and 70 percent are cared for in the community by family members and friends. Most have mild to moderate dementia. For the study, Black and her colleagues performed in-home assessments and surveys of 254 people with dementia living at home in Baltimore and also interviewed 246 of their informal, non-professional caregivers. They found that 99 percent of people with dementia and 97 percent of their caregivers had one or more unmet needs. Ninety percent were safety-related. More than half of the patients had inadequate meaningful daily activities at a senior center or at home, and one-third still needed a dementia evaluation or diagnosis. Unmet needs fell into many categories including safety, health, meaningful activities, legal issues and estate planning, assistance with activities of daily living and medication management, Black says. More than 60 percent of people with dementia in the study needed medical care for conditions related or unrelated to their dementia, a problem considering that those with dementia are more likely to have other serious illnesses for which they may eventually be hospitalized, Black says. "This high rate of unmet medical care need raises the possibility that earlier care could prevent hospitalizations, improve quality of life and lower the costs of care at the same time," she says. Interestingly, unmet needs were significantly greater in those with higher cognitive function, most likely because many of them did not realize they had dementia and were not yet being closely cared for or monitored, Black says. The researchers also found that African-Americans, those with lower income, those who were more independent in their basic daily living activities such as being able to feed and clothe themselves and those with more symptoms of depression had higher levels of unmet needs. Caregivers with less education and more symptoms of depression also had significantly more unmet needs. This suggests that identifying and treating depression in people with dementia and their caregivers may enable them to address their other unmet needs.

Page 21: 14-01-10 Dementia Monitoring Report

POLITICAL MONITORING House of Commons Written Question: Alzheimer's Disease (16/12/13) David Simpson: To ask the Secretary of State for Health how many people in each region of the UK were diagnosed with Alzheimer’s disease, by region in each of the last five years. [179852] Norman Lamb: The number of people recorded on practice disease registers is available in the quality and outcomes framework (QOF), published by the Health and Social Care Information Centre (HSCIC). The number of diagnoses are not available but the number of people on the dementia register are available. This is a measure of prevalence rather than incidence. QOF does not have any information specifically on Alzheimer’s disease and the HSCIC only has information for England. The numbers on the dementia register in the last five years are given in the following tables. Information for 2008-09 to 2011-12 (table 1) is presented at strategic health authority level and for 2012-13, under the new NHS structure, at commissioning region level (table 2). QOF registers are constructed to underpin indicators on quality of care, and they do not necessarily equate to prevalence as may be defined by epidemiologists. For example, prevalence figures based on QOF registers may differ from prevalence figures from other sources because of coding or definitional issues. It is difficult to interpret year-on-year changes in the size of QOF registers, for example, a gradual rise in patients on a QOF register could be due partly to epidemiological factors (such as an ageing population) or due partly to increased case finding.

Table 1: Number of patients on the QOF dementia register by strategic health authority in England,

2008-09 to 2011-12

2008-09 2009-10 2010-11 2011-12

England 232,430 249,463 266,697 293,738

North East 13,198 14,034 15,014 16,568

North West 34,057 35,952 38,230 42,158

Yorkshire and the Humber 24,844 26,755 28,845 31,908

East Midlands 20,089 21,625 23,423 25,953

West Midlands 23,866 25,622 27,735 30,386

East of England 25,315 27,591 29,578 31,975

London 24,859 26,745 28,255 31,160

South East Coast 21,442 23,037 24,284 26,419

South Central 18,840 20,044 21,085 23,114

Table 2: Number of patients on the QOF dementia register by commissioning region in England in 2012 -

13

2012-13

Page 22: 14-01-10 Dementia Monitoring Report

England 318,669

North of England 98,768

Midlands and East of England 96,274

London 33,333

South of England 90,294

Source: Health and Social Care Information Centre.

Link to view online here House of Commons Debate: Care Bill (16/12/13) Norman Lamb (The Minister of State, Department of Health; North Norfolk, Liberal Democrat) : I note the position in Salford, and I recognise that finances in local government are tight. However, the Opposition have not recognised that 108 councils were already providing social care with substantial need as the eligibility criterion before the general election. They never mention that, but it is the truth. Baroness Campbell has called the continuity of care provisions a “landmark reform”. Although we have heard the suggestion that we have somehow moved away from what Andrew Dilnot suggested, he has said: “For the first time you don’t have to be terrified of the consequences of needing care…this system will radically reduce anxiety…It doesn’t seem to me that it’s so different from what we wanted.” Several references have been made to the funding of social care, and as I have said, I fully recognise the tough financial settlement that local government has faced. However, that has been necessary because of the dire state of the public finances that we inherited from the Labour Government, and we have sought to protect social care. Despite what Grahame M. Morris and others have said, a recent budget survey by the Association of Directors of Adult Social Services showed that most of the savings that local councils have made have come through efficiency changes, and that services have largely been protected. [Interruption.] Well, that is what the survey showed. As the population continues to age, our health needs become more complex, and it is essential that we continue to adapt. We need to ensure that the care and support system is sustainable, and the Bill lays the foundation fo r that sustainable system. At the top of the agenda has been the issue of how we pay for care. The current system simply does not work and is not fit for the 21st century. Too many people have faced catastrophic care costs and had to make impossible financial decisions at a time of huge personal crisis. It is deeply unfair. If someone who has worked hard all their life and budgeted carefully is unlucky enough to be diagnosed with dementia or some other condition, they lose pretty much everything they have ever worked for. Through the Bill, we are putting an end to that unfair system. We have addressed how people can plan and pay for their care, following on from Andrew Dilnot’s recommendations. We have listened carefully to what he and his colleagues have said, and we have been absolutely consistent about how these reforms will support people to plan for their future effectively. From April 2016, extending the means-test support to £118,000 will immediately result in 35,000 more elderly people receiving financial help with their care costs. That figure will rise to 100,000 people getting extra help by 2024-25. Link to view online here

Page 23: 14-01-10 Dementia Monitoring Report

House of Lords Oral Question: G8 Summit on Dementia (17/12/13) Asked by Lord Patel: To ask Her Majesty’s Government what was the outcome of the G8 dementia summit. The Parliamentary Under-Secretary of State, Department of Health (Earl Howe) (Con): My Lords, the G8 agreed to work together to tackle and defeat dementia. The declaration announced the G8’s ambition to identify a cure or a disease-modifying therapy by 2025 and to increase collectively and significantly the amount of funding for dementia research. The G8 also welcomed the UK’s decision to appoint a dementia innovation envoy who will work to attract new sources of finance, including examining the potential for a private and philanthropic fund. Lord Patel (CB): My Lords, I thank the Minister for his reply. Dementia is the dreaded diagnosis, particularly for the elderly, as it affects more than 5% of people over 65 and between 20% and 40% of those aged over 85. Because of the increasing number of elderly people, an increasing number of people are affected. I commend the Government and congratulate them on taking the initiative at the G8 and particularly on involving the WHO, because now it will become a global initiative. I have two questions. The first is about the funding that the Gov ernment announced. There is a great deal of confusion. Is it new money, money that has already been allocated to research or money that the Department of Health is giving for better diagnosis of dementia? Research on dementia must also focus more widely on understanding the biology of the disease, the inflammatory process and the epidemiology. Ring-fencing around a disease will not necessarily get to the point that the Government wish to get to. Secondly, what impact do the Government think the EU regulation on data protection will have on dementia research? Earl Howe: The noble Lord asked a number of questions. The Government have stated an ambition to double research funding in dementia. That will depend on the quality of the proposals that come forward and on the rate of scientific progress. We very much hope that arising out of the summit, momentum will be gained, not only in this country but internationally. As regards the noble Lord’s second question, we recognise how important this is for future dementia research and I can tell him that the Government, through the Ministry of Justice, are negotiating with member states in Europe and are aware of the impact that the proposal would have on research. It is likely to be some months before there is an agreed approach between member states and the Commission, and the Parliament is unlikely to vote on the proposal before 2015. Lord Warner (Lab): The Minister will no doubt be aware that there is growing interest in this country in assessing whether drugs used for conditions other than dementia might be useful in tackling dementia. Will the Minister say what efforts the Government are going to put into this area as a result of the G8 summit? Earl Howe: My Lords, we certainly hope that the private and charitable sectors will respond to the call, but at the same time the Government are not dictating to the research funding bodies which projects they should support. The Haldane principle is very important. The noble Lord makes an extremely powerful point, and we wo uld hope that the pharmaceutical companies will wish to step up to the plate. Baroness Hanham (Con): My Lords, will the Minister be kind enough to explain exactly what is going to be achieved by training public servants such as bus drivers in dementia, what is the purpose behind it and what we hope those public servants will be able to do? Earl Howe: My noble friend raises an important issue, because it is going to be increasingly necessary for not only health and care professionals but members of the public to be properly attuned to dementia and the needs of those who have the condition. We want to see all those who deal with the public trained in dementia, at least to a basic level, in a way that is appropriate to their level of engagement with those who suffer from dementia. Dementia training is now a key part of Health Education England’s mandate. Baroness Greengross (CB): My Lords, I would like to add my congratulations to the Government, and in particular to the Prime Minister on his personal commitment and on securing the summit focusing on dementia. I ask the Minister whether there are any commitments from other G8 countries, both for research and for the other side of this, which is care and how we help the growing number of people—it will be one in three of us in the near future—who are going to experience dementia, in all the G8 countries and beyond.

Page 24: 14-01-10 Dementia Monitoring Report

Earl Howe: My Lords, it is perhaps too soon to expect concrete proposals from other G8 countries, but I can tell the noble Baroness that the summit was not the end of the story. The G8 countries will be meeting throughout 2014 to build on and develop further agreements. We have agreed to host the first legacy event on social -impact investment in March next year. That will be followed by an event in Japan on what new care and prevention models could look like, and by an event hosted by Canada and France on how industry can harness academic research. There will then be a meeting in the United States in February 2015. We hope that the momentum generated by the summit will elicit the kind of commitments that the noble Baroness rightly seeks. Lord Foulkes of Cumnock (Lab): Is the Minister aware that after the very brief exchange about dementia yesterday, I heard it suggested that dementia should not be grouped in any way with mental illness because of the stigma involved? Surely the solution to that is that we must all work to remove any stigma from all kinds of mental illness. Earl Howe: The noble Lord is absolutely right, but he will recall that the question yesterday dealt with the WISH summit, which was focused specifically on mental health and not on dementia. I did not mean to imply that there should be any less emphasis on tackling stigma in both areas. Baroness Brinton (LD): My Lords, I, too, welcome the result of the G8 dementia summit, but what progress is being made in appointing nurses who specialise in dementia in the same way that there are nurse specialists for cancer, rheumatology and epilepsy? Dementia UK’s admiral nurses are wonderful and provide real help to patients and families, but there are a mere 103 for an estimated population of 800,000 dementia patients. Earl Howe: My noble friend raises a very important point. I come back to the point that I made a short while ago: people with dementia in practice access all parts of the health and care system. We want all staff who care for people with dementia to be trained to the level of their engagement so as to deliver high-quality care for people with dementia. I mentioned that dementia training was a key part of Health Education England’s mandate. Already, 100,000 NHS staff have received dementia training. As my noble friend will know, decisions on the commissioning of admiral nurses are made locally, but I recognise the work that they do. Lord Walton of Detchant (CB): My Lords— Lord Davies of Stamford (Lab): My Lords— Lord Walton of Detchant: Does the Minister accept that much of the increased incidence of dementia is a result of the fact that many of us are living much longer than was the case in the past? Does he further agree that there is clear research evidence to suggest that continuing intellectual and physical activity, care and attention to diet, and control of blood pressure can delay the onset of dementia in many individuals, and that, as a consequence, once early dementia appears, programmes to promote such physical and intellectual activity are very valuable? In such programmes, volunteers play a very important part across the country. What are the Government doing to promote these projects? Earl Howe: The noble Lord, as ever, makes some extremely good points. My department is looking at the role of volunteers in a number of areas. He is right that increased age is the greatest predictor of dementia. It has been estimated that delaying the onset of dementia by two years could decrease the global disease burden by 22.8 million cases by 2050. The point that the noble Lord makes is therefore well made, and I have no doubt that there will be an increasing focus on this over the coming years. Link to view online here House of Commons Written Question: Dementia (18/12/13) Sir Bob Russell: To ask the Secretary of State for Health if he will issue guidance to employers and employees on identifying signs of early dementia; and if he will make a statement.

Page 25: 14-01-10 Dementia Monitoring Report

Norman Lamb: The Government does not have plans to issue guidance solely aimed at employers and employees on identifying signs of early dementia. However, next year, Public Health England, working with Alzheimer's Society, will launch a three year, £12 million social movement to make the nation more aware of dementia and how to help people with the condition. Aside from public-facing activity, the movement will target business partners and urge them to continue roll out the Dementia Friends programme within their organisations, giving their employees an understanding of dementia and the supportive action they can take to help the mselves, family, friends and customers. In addition, the NHS Health Check programme offers advice and support to help people aged 40 to 74 make lifestyle changes that can reduce their risk of dementia and other conditions, and now includes dementia awareness advice for those aged 65 to 74 years. Further information is available at: www.healthcheck.nhs.uk Link to view online here House of Commons Written Question: Dementia (19/12/13) Chris Williamson: To ask the Secretary of State for Health what steps he will take to support dementia research following the G8 Dementia Summit. Dr Poulter: The G8 countries agreed to work together to tackle and defeat dementia. The declaration announced the G8's ambition to identify a cure or a disease-modifying therapy by 2025 and to increase collectively and significantly the amount of funding for dementia research. The G8 also welcomed the United Kingdom's decision to appoint a dementia innovation envoy who will work to attract new sources of finance, including examining the potential for a private and philanthropic fund. Investment in dementia research by the Department's National Institute for Health Research has increased from £12.6 million in 2009-10 to £24.4 million in 2012-13. Link to view online here House of Commons Written Question: Dementia (6/1/14) Jim Shannon: To ask the Secretary of State for Health what the average time taken from scan to dementia diagnosis is; and whether his Department intends to repeat the scan every two to three years. [180972] Norman Lamb: On 29 November, the Royal College of Psychiatrists published a report of its audit of memory services in England. The report showed the average wait from assessment, which may include a brain scan, to diagnosis is 8.36 weeks. Decisions on further scans are made locally by clinicians. A copy of the report has been placed in the Library. Link to view online here Westminster Hall Debate: Health Care in London (8/1/14) Mary Macleod (Brentford and Isleworth, Conservative): My hon. Friend makes a good point. I hope the Minister will respond to the issue of how we take up such challenges in London and get the necessary funding. I shall list some issues on which I would like more improvement. We heard how difficult it is to get appointments at general practices—we call up and know that the answer is going to be no before we say anything. There are also issues with getting to see a specialist as quickly as possible. We want an effective complaints process in hospitals, changing the culture to allow people, whether staff or patients, to complain. There is an issue with how patients are moved around London, and the hon. Member for Westminster North made an important point about having to use public transport to get home. Mental health and community public health are other important issues. My final comment is about dementia, which is a growing concern in London, as it is across the country. About 30% of patients who go into the West Middlesex hospital have dementia. They do not go there because of dementia, but

Page 26: 14-01-10 Dementia Monitoring Report

they have it. There is a lot to be done, and the West Middlesex hospital has just opened a new dementia ward. There needs to be a greater focus on dementia, given our ageing population nationally, and the size of the population in London. We must ensure that we work together to support those who really need and deserve care and support in London. That will improve the NHS for us all. Link to view online here SOCIAL MEDIA - TWEETS

Alzheimer’s Society – 09/01/14 Alzheimer's Society @alzheimerssoc 23h Help us fight dementia in 2014 – choose your challenge from our exciting range of events

New Scientist – 09/12/14 Today on New Scientist: defusing dementia, lifelogging, rebooting Soviet science, Hubble's galactic lenses and more http://ow.ly/sqBmx

NHS Choices – 08/01/14 A diagnosis of dementia is tough to deal with for all involved - but there is support available to help: http://bddy.me/1ifTYn0

Alec Shelbrooke – 7/01/14 Thanks to @alzheimerssoc for their support preparing for my debate on dementia care. Looking forward to making my office 'dementia friendly'