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We have heard from noble Lords about the discrimination against older people that still persists. Otherwise, 50 per cent of patients would not be without

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a formal medical diagnosis. Labelling the care they need as social care is proof of that discriminatory prejudice against older people. The National Audit Office found that GPs are also not sufficiently trained to recognise early symptoms or to manage the disease. It is difficult, but people should be made aware of their diagnoses. For that to happen, GPs—apart from training—have to know that some treatment and support will be available. Otherwise, they are not going to add to the distress of their patients by diagnosing them when nothing will be done to help them. The widespread introduction of memory clinics across the UK in this strategy should enable earlier diagnosis and treatment.

We have to pay more attention to those people in the final stages of dementia who need palliative care. There are other worrying trends. The noble Lord, Lord Rix, has mentioned one. The Social Care Institute for Excellence reported recently on a growing incidence of younger people suffering from one type of dementia, Korsakoff’s syndrome, through the overuse of alcohol. We have to watch for new types of dementia that are emerging.

The dementia advisory role in the strategy is a welcome development. It should provide a point of contact and support. At present, in spite of the huge amount of work done by the charities—they do a wonderful job—people and families often wait for up to three years before seeking help.

We can learn an awful lot from other countries and we should not resist doing so. The French have produced their third national Alzheimer’s plan and there are points in that we could learn from. In the Netherlands, there are specialist care home physicians.

We need a set of goals to which we aspire. Let us aim to have real improvement in diagnosis, treatment and care for dementia patients within the next five years, and immediately integrate health and social services in this field while developing specific skills and training at all levels. For this we need a major public awareness campaign that places dementia in the forefront of public priorities. We probably also need a dementia tsar or champion—I know this is being considered—to lead our country in awareness of dementia and acceptance of the challenges it brings.

One of our leading care home providers has called dementia the “silent epidemic”—an adequate description. We have to remove any remaining stigma and lack of interest that leads to this sort of discrimination. We must be determined to give dementia the priority it deserves. We need a national framework together with local and enforced standards in care. The role of the Care Quality Commission will be critical in looking, for example, at healthcare in residential homes, where so many people with dementia live.

People with dementia are among the most vulnerable in our society. Action and total commitment are needed now. It is the least we can expect.

12.55 pm

Baroness Howe of Idlicote: My Lords, I also thank my noble friend Lady Murphy for this debate and her excellent introduction to it.



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In 1999, just after my retirement from chairing the Broadcasting Standards Commission, I was asked to be one of the judges for ITV’s best documentary of the year. It turned out to be an interesting assignment. It was also my personal introduction to the subject of today’s debate. The film that made by far the most vivid impression on me was “Malcolm and Barbara: A Love Story”, created by Paul Watson. Malcolm and Barbara were husband and wife and Paul Watson their long-standing close friend. When Malcolm, a talented musician then in his early 50s, was diagnosed with Alzheimer’s, they reacted to the bad news by agreeing that, however horrifying the developments, Watson would film the disease as it developed over the years ahead. It was indeed horrifying and distressing to watch the stages of the disease unfold on film, and, at the same time, to observe the lack of appropriate support for Barbara that occurred along the way.

If anything was needed to alert me to the huge sums that carers save the national budget in this area, as well as to wake me up to the need for a totally different national approach to dementia, it was to see just how much Barbara was able to—indeed, had to—achieve, by coping so heroically with fearful mood swings, not excluding violence, from her distressed husband. It is therefore no wonder that I was particularly glad to see that Barbara featured in a recent Honours List—a more than well-deserved recognition of the love and dedication that she and so many other carers in these situations provide. Currently 500,000 family carers are providing, unpaid, some £6 billion worth of care.

In the 10 years which have elapsed since I first saw that documentary I think that we have all become increasingly aware that we are indeed an ageing population, and increasingly aware of the many implications that this has and will have for our own and for our children’s future. I am certainly aware that I am 10 years older, and I am beginning to recognise my own moments of tell-tale forgetfulness. So, against that background, it is more than fitting that I should congratulate the Government on their decision this year to publish and roll out a National Dementia Strategy. I hope that that way forward will include the contribution that employers also can make by retaining for as long as possible the valuable skills of dementia sufferers via means such as flexible working.

We should all give considerable priority to the Government’s plan because it is clearly in everyone’s interest. In its 2008 report The Dementia Tax, the Alzheimer’s Society predicted that the number of people with dementia will rise rapidly from 700,000 today to over 1 million by 2025. I know that different people will quote different figures but another of its reports predicted that one in three people over 65 will end their lives with a form of dementia. Bluntly, the financial cost of all this will be unmanageable if we continue as we are now.

As the Alzheimer’s Society points out, dementia is the UK’s biggest health and social care challenge. So the more I read about the strategy, the more important four aspects of it seem. Other noble Lords have already mentioned many of these. The first and most urgent aspect is the Government’s commitment to a national public awareness campaign. It is essential that the stigma—indeed, the fear—that dementia engenders must be confronted and changed.



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The second aspect is earlier diagnosis. It is good to know that the Government believe that with earlier diagnosis, more effective and well-researched medication and, above all, improved training and awareness among doctors, nurses and all those involved with the care of these patients, “living well with dementia” can be achieved. That is particularly important for end-of-life care, which is manifestly inadequate at present. This whole area needs to improve, as currently only 31 per cent of GPs believe that they received sufficient basic and post-qualification training in diagnosing and managing dementia. Only this week I heard from an Australian friend that every GP in that country is already required to test all their 70 year-old patients for dementia. So we are clearly behind other countries.

Thirdly, for those with dementia and for their carers, the crucial need which they themselves identified in the consultation process was to have,

In other words, they need a local, knowledgeable contact who, from the moment dementiahas been diagnosed—and, equally important, before then—can give support, information, advice and access to the services needed.

One important feature to bear in mind is the evidence showing that people want to stay in their own home and, preferably, ultimately, to die there. In many ways that is so much the better—not only do they fare better out of hospital; another tangible benefit is considerable financial relief for the NHS budget. As we have heard, 70 per cent of acute hospital beds are occupied by older people receiving inadequate care. That does not make any sense.

However, if dementia patients are to be able to stay at home while at the same time enjoying the benefits of companionship, they will ideally need to find themselves in a diverse as well as comprehensive community. Most people—patients and carers alike—would prefer access when wanted to personalised social activity, from bingo to bridge, and short breaks for carers within a peer group with whom they can share activities and compare experiences.

Fourthly, dementia is a disease. I was glad to hear a number of other noble Lords say that it is quite wrongforits treatment effectively to be classified as social rather than medical care and therefore means-tested. For dementia patients, that is all too often the practical consequence of the present system of charging for care. This fundamental point is most clearly spelt out by the Alzheimer's Society in its report The Dementia Tax. And what a value we have in the Alzheimer’s Society—without it, I do not think that we would not know half of what we know. I look forward most to the Minister’s reply on this point. Is the treatment and care of dementia likely in future to be managed and financed on the same basis as any other disease tackled by the NHS? If not, why not?

1.04 pm

Lord Walton of Detchant: My Lords, this has been a singularly well informed and at times extremely moving debate. Only those who have witnessed and experienced the progressive deterioration in intellect

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and personality of a family member can recognise how immensely distressing, even agonising, that experience can be.

Alongside obesity and type 2 diabetes, dementia stands now as one of the greatest public health challenges of the age. As Members of your Lordships' House have said today, it is likely that by 2025 the number of people with dementia in the United Kingdom will almost have doubled. As the Alzheimer’s Society has made clear in its excellent briefing, the cost of dementia will rise from £15 billion today to more than £23 billion by 2018.

One of the problems is early diagnosis, to which many noble Lords have today referred. I propose to spend a little time on that, because it is crucial. My noble friend Lady Murphy said in her excellent introduction that there are about 150 causes of dementia, many of them exceptionally rare. More than 80 per cent of patients with dementia are suffering from Alzheimer’s disease, but there are other, not uncommon causes—as the noble Baroness, Lady Gardner of Parkes, said, multi-infarct dementia resulting from repeated minor or major strokes is an important one. So, too, is Lewy body dementia. It is less common, occurring in association with, but not invariably so, Parkinson’s disease, because of the deposition of Lewy bodies throughout the cortex of the brain. Fronto-temporal dementia is also quite different.

It is crucial to get the diagnosis right because research is progressing in many parts of the world which is bringing within sight the prospect of a more effective treatment for the various dementias, particularly for Alzheimer’s disease, which may be a crucial development alongside the improvement in the standards of care to which many noble Lords have referred.

Unfortunately, there is no precise diagnostic test for Alzheimer’s disease. CT scanning and magnetic resonance imaging may help to show shrinkage of the brain. There are other tests, such as those for memory. More recently, a precisely defined test-your-memory test has proved to be extremely valid. It has been designed to minimise operator time and to be suitable for non-specialists to use. However, as a recent editorial in the British Medical Journal stated:

“Diagnosis requires consideration of the person’s education, culture, and circumstances; dementia presents when a person’s cognitive abilities are no longer adequate for them to cope with their environment. A high flying executive may experience problems early in the ... process, whereas a resident of a care home may have no difficulty with his or her routine until pronounced changes have occurred”.

Many years ago, when I held a chair of neurology in Newcastle-upon-Tyne, I was involved with Professor Roth, Doctor Blessed and Professor Tomlinson in studying the changes in the brain occurring in patients with Alzheimer’s disease. We all recognise, as several people have referred to today, that, as we get older—I am approaching my 87th birthday—we often find problems with the memory, particularly memory for proper names. It is extremely embarrassing when you encounter somebody whom you know extremely well and suddenly find that their name has gone—you can call that selective nominal aphasia, benign cognitive impairment or benign senescent forgetfulness. In a way, Alzheimer’s disease is a rapidly progressing, advanced

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form of that kind of impairment, as the work of Blessed, Roth and Tomlinson showed, because, even with normal ageing, there is an increase in the number of senile plaques in the brain cortex. That number is vastly increased in patients with Alzheimer’s disease.

What about research? The Newcastle scientists, helped by the biochemists, the Perrys—husband and wife—found a serious reduction in the concentration of acetylcholine in the brain cortex. Acetylcholine is a neurotransmitter which carries messages from one nerve to another. That finding led to the introduction of drugs which inhibited the enzyme which degrades acetylcholine. Those are the drugs called donepezil, and many of its other derivatives, which have proved to be helpful in delaying to some extent the progression of the disease. However, that is symptomatic treatment; it does not strike at the root cause of the disease. In these senile plaques, which are so characteristic, and the neurofibrillary tangles which appear throughout the brain cortex, chemical substances have been identified, not least beta-amyloid and its precursor, but also a substance called phosphorylated tau, which appear to be markers of the process occurring in the cortex in these conditions. Work is now in progress in a number of centres in the UK and abroad where individuals are attempting to introduce techniques to reduce the level of those substances within the brain cortex.

A few years ago, an attempt was made to produce a vaccine and the vaccine against beta-amyloid was shown to be, in some ways, effective. Unfortunately, in clinical trials, it also produced unacceptable degrees of brain inflammation and the trials had to be discontinued, but other methods are now being explored.

Although, as a number of noble Lords have said, the amount of money being spent on dementia research in the UK is much less than in other countries, we do have centres of excellence—I was talking yesterday to Professor Martin Rossor, who is a leader in this field at the National Hospital for Neurology and Neurosurgery, Queen Square. He commends, incidentally, as do I, the National Dementia Strategy, though he feels—and I ask the Minister to comment upon this—that though the dementia strategy is excellent in what it plans and proposes for the elderly patient with dementia, it is less suitable for those who develop dementia at a relatively early age, in their 40s and 50s. The Minister may wish to comment on that point, but it is an excellent document.

These centres of excellence are in London, in Oxford and at the outstanding Centre for Brain Ageing and Vitality, led by Professor Tom Kirkwood, in Newcastle-upon-Tyne, funded by the Medical Research Council and the Wellcome Trust, where some outstanding work is going on. I stress these points because I genuinely believe that, within the next 10 years, we will see mechanisms introduced whereby forms of treatment for Alzheimer’s disease will become much more effective than those available now. That kind of treatment must stand alongside the crucial improvements in care and the other objectives so clearly set out in this dementia strategy. I think we have considerable optimism for the future.



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1.12 pm

Baroness Barker: My Lords, it is a privilege to begin to sum up at the end of what has been a highly informed and at times very moving debate. I pay particular tribute to the speeches by the noble Baronesses, Lady Murphy and Lady Perry, and my noble friend Lady Thomas of Walliswood. I should declare an interest as one of the 18 per cent of Members of your Lordships’ House who does not qualify for a bus pass. In response to the noble Lord, Lord Walton of Detchant, with every passing year, I become more inclined to think that I ought to carry a card that says, “in case of an emergency, please note, she has never been any good at remembering people’s names—do not assume that she has got Alzheimer’s.”

In thinking about this debate and reading this document today, I was trying to place this disease in its historical context. I think we have moved from an age in which Alzheimer’s, or dementia, was a thing of such fear and dread that it was locked away and ignored. Dementia has become something which people talk about in euphemism. When I talk to older people, something I do quite often, and they talk to me about other older people they know, they will say things like, “She is really losing the place”, or “You know Mrs So-and-so? She doesn’t know her husband any more.” Recently, I was talking to some younger people and they were telling me that one of them is practising for his driving test. They said, “It is really good, because his nan lives with them and she’s got Alzheimer’s and one thing that calms her down is that she loves being driven around in the car, so he is driving her around all over.”

The point is that Alzheimer’s and dementia are beginning to become part of family and community life. The thing that is missing from this document, good though it is in many ways, and the thing that restricts it as a strategy, is that it does not really address the key issues about how this disease becomes part of community and family life, with effects way beyond the narrow confines of health and social care. I think that that is the point my noble friend Lady Thomas of Walliswood was making when she talked about the disparate nature of this debate. This document, laudable and welcome though it is, is a series of unconnected points. That is unfortunate, when we are going to be looking at its implementation at a time of severe restrictions in public expenditure.

If the department had been bold, this would have been a strategy to enable individuals and communities to manage what the noble Lord, Lord Walton, rightly called one of the biggest public health developments that we have. It would have acknowledged, for example, that this is a disease with a greater incidence in areas of affluence. It is a disease that happens when people are sufficiently well and are not affected by other co-morbidities, so that they live longer. It is a disease the incidence of which is a manifestation of other health inequalities, or what I would call health poverty. It is no surprise that people who have had very distinguished careers get this disease more than others, because they have not been affected by other things.



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At the beginning of setting out a strategy, we on these Benches ask, how is it that we can enable individuals, families and the state to deal with this issue as it grows? There is no doubt that responsibility for care will rest on a partnership between individuals and the state for a very long time to come.

I want to talk briefly about a strategy for research. A lot of people have talked about research into early diagnosis. Noble Lords who listened to the Reith lecture on Radio 4 will have noted the very interesting point made by this year’s Reith lecturer that much of the commercial investment in this sort of research is about early diagnosis. This is in order to produce drugs which not only help people who have dementia, but people who are beginning to go through those very early forms of forgetfulness and who wish to maintain their brain performance. The noble Baroness, Lady Murphy, said in her introduction, that there is going to be a research summit. Will the strategy for research be about discovering treatments and mitigations for early onset of the disease, which will enable people to remain economically active for longer, or will it be about research into treatments and mitigations for those who are significantly older and will therefore live longer with other co-morbidities? Will the research be about improvements in quality of life for people who have this disease and their carers, or about prevention for a younger group?

Noble Lords listening to Radio 4 this morning will have heard what has been happening with the cancer strategy and the cancer plan. I agree with the noble Baroness, Lady Greengross, that it was interesting to note that the cancer strategy has not worked as well for older people. Having said that, the cancer plan and the way the cancer plan has worked, bringing together academic research, the NHS, charities and principally to focus the involvement of sufferers is exemplary. For breast cancer, for example, it has led to the establishment of centres of clinical excellence in research and treatment, but it has done so in a way that has enabled those who have the disease to make improvements in their social care.

It was very interesting that when Professor Mike Richards was tackled recently about the cancer plan and how our cancer survival rates are not as good as those of other countries, he defended the plan, saying that any plan had to address cancer prevention and treatment as well as early diagnosis and care, and there has been an all-round improvement. If we were to have a strategy for dementia that worked in that way, it would be worth investing a very great deal of money in it.

I echo the point made by the noble Lord, Lord Rix—I never repeat his points, as he makes them far more eloquently than I do. There is a growing need for people throughout the whole of health and social care to understand dementia as it affects their discipline. Dentists, for example, need to know what to do when somebody with dementia presents to them. I would go much further and say that in the commercial world, smart companies will recognise that dementia will have a huge impact on family life. When housebuilders start building houses again, will they build very small boxy units or will they actually build houses into

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which three generations will at some stage move, as families with younger children will be looking after people with dementia? I think that it could go much further.

The noble Baroness, Lady Murphy, referred to the comments made by Joan Bakewell. I have been saying for some considerable time that the process of tendering for social care is wreaking a great deal of havoc, particularly upon specialist services. It is increasingly the case that a service—information and advice, domiciliary care, or whatever—is commissioned not on the basis of need or of client groups but of all people over the age of 60. I think that in future there will be many fewer specialist agencies around, particularly in the voluntary sector, to help implement some of the worthy but at times very unrealistic ambitions of this document.

1.22 pm

Lord McColl of Dulwich: My Lords, I, too, thank the noble Baroness, Lady Murphy, for initiating this debate and introducing it so comprehensively.

The National Dementia Strategy is an excellent report, and I was especially pleased that one of its objectives is to address the stigma associated with dementia and reduce social exclusion and discrimination. I have always found it rather surprising and disappointing that so many apparently intelligent people can make disparaging remarks about those with mental illness. Making comments such as, “He’s nutty”, or “He’s bananas”, or “He’s away with fairies” is totally inappropriate and, in psychiatry, might be described as “incongruity of affect”.


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