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Age Concern and Help the Aged wanted a stronger emphasis on research in the report, as the noble Baroness, Lady Murphy, and my noble friend Lady Perry have emphasised. They want the same level of investment in dementia research as currently exists for research into cancer and heart disease. The Alzheimer’s Society compared research papers on chronic disorders and found that since 2002, 23 per cent were devoted to cancer, 17 per cent to cardiovascular disease and only 1.4 per cent to dementia, to which my noble friend Lady Perry alluded. More research is needed into preventing dementia and slowing down the development of the disease. There is always a need for more emphasis on training doctors and nurses in this subject, especially as one-third of the people in hospital beds are elderly, with mental health problems in addition to the illness that brought them into hospital in the first place.

As the noble Baronesses, Lady Thomas of Walliswood and Lady Barker, have said, there is a great need for a much more comprehensive approach to the whole problem. I think that the report might usefully have emphasised what millions of carers can do right now, without any extra expenditure, to improve the quality of the lives of these patients.

An exciting recent development in the management of dementia is the widespread adoption of the SPECAL method, which stands for specialised early care for Alzheimer’s. It is based at Burford in Oxfordshire and was developed by Penelope Garner. It has been validated in the past by the Royal College of Nursing and the Care Consortium of the Alzheimer’s Society. I am

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grateful to the clinical psychologist Oliver James for a tutorial on this subject. His book, Contented Dementia, describes the method which is now used all over the country, with carers and professionals now able to provide 24-hour well-being. It is the only management method which seems to confer contentment. A 2005 review published in the Journal of the American Medical Associationshows that none of the conventional methods is very helpful, which is presumably why there is such a heavy use of antipsychotic medication for these people.

There are now dozens of centres throughout the country which train carers in this SPECAL method. In cost-benefit terms it has massive implications: it reduces the need for emergency care, eliminates the necessity for antipsychotic medication and relieves the stress of carers. Without any impetus from Government, coming up from the grass roots, SPECAL is rapidly becoming the best accepted way of managing dementia.

Penny Garner, the founder, uses the analogy of a photograph album. If you think of the individual photographs as memories, then in a healthy individual the album is full. But in Alzheimer’s sufferers, many new experiences fail to get stored as photos in the album at all. The recent pages of a sufferer become increasingly blank, while the earlier ones remain intact. Suppose your husband tells you at breakfast to book some cinema tickets and you agree to do so. Unbeknown to you, your dementia means that this discussion has not been stored in the album. When asked about the tickets in the evening, you have no record of the original plan. You may get annoyed at being “wrongly” accused of having failed to carry it out. You become angry, then confused and scared.

Penny argues that the distress is compounded by well meaning attempts to remind the sufferer of what they have forgotten. Nellie, aged 81, was creating mayhem by wandering around the house and garden. In response, her fiercely loyal, military-trained husband, Richard, was providing detailed lists of what she had to do that day to “get the old girl sorted out”. This is the standard response, known as reality orientation. But it usually results in the sufferer thinking, “Why is this person constantly telling me my name? Are they mad?”. Instead, Penny Garner gets alongside the sufferer by finding out what used to be in their album. Extensive evidence from brain scans now proves that although short-term memory is damaged, the long-term memory is largely or completely intact. So Penny ferrets out from the family members the emotional places where they liked to be, stored in the long-term memory. Using this as a context, and taking the lead from the sufferer, Penny enables them to live almost all the time in a happy place. She “makes a present of the past”, as she puts it.

Gardening was Nellie’s happy context. With SPECAL’s help, Richard provides clues from her album which remind her of pruning flowers, so secateurs were placed all around the house. Soon she stopped drawing blanks; instead, she would wander around the house on the way to the garden to do some pruning. Mostly, she never got there, waylaid by discussions about the best implements for pruning, moving from one pair to the next. Living this happy way her mood improved dramatically. By finding benign, historical context,

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SPECAL creates a lifelong sense of well-being, rather than the rage and confusion that are triggered by the conventional responses to dementia. Oliver James states that dementia does not need to be hellish as it is possible to create a sense of well-being for the rest of the patient’s life. The person with dementia can no longer reliably store new facts but does continue to store feelings in the normal way.

The noble Baroness, Lady Gardner of Parkes, drew attention to the value of practical advice. Penny Garner found that the following advice is helpful. First, it is important to realise that people with dementia find it difficult and frustrating to answer questions. This is due to their impaired ability to remember. The solution therefore is to avoid asking them questions. Secondly, as their long-term memory is usually intact, one should concentrate on their long-term memory and celebrate it. Thirdly, always agree, never argue should be the policy at all costs. It does not really matter if they believe that a dead relative is alive or if they think that they are at the airport when they are actually shopping in the supermarket. Fourthly, when the short-term memory deteriorates further it is quite usual for the patient to ask the same question over and over again and it is very easy to become exasperated. The best thing is to be hesitant in answering the question, so when the repeated question is, “What day is it?”, one says: “Well, let’s see, um,” then look at the watch or the calendar and say, “it’s Wednesday”—actually it is Thursday. One does all this without appearing to be patronising in any way. We need to identify pleasurable themes from the past to help them make sense of the present. For example, it is possible to spend much of the day planning to watch a favourite old film. Routine, based on life well before the dementia developed, is very important and, if at all possible, once established should not be altered.

In conclusion, may I repeat that Alzheimer’s disease does not need to be hellish as it is possible to create a sense of well-being for the patient. The methods advocated by the charity, SPECAL, are much better than smothering the patients with excessive drugs.

1.32 pm

Baroness Thornton: My Lords, I congratulate the noble Baroness, Lady Murphy, on securing today’s important debate on the National Dementia Strategy. There can be no doubt that dementia is one of the most challenging issues we face as a society today. This has been a classic debate in your Lordships’ House and there has been enormous expertise as well as enormous compassion in many of the contributions. It has been a privilege to listen to the debate and to answer it.

The scale of the problem has not been underestimated by the contributions of noble Lords. It is a devastating illness with major consequences for the people who develop the condition and for their families. The noble Baronesses, Lady Perry, Lady Thomas and Lady Warnock, spoke with enormous eloquence about the painful nature of this disease. As a society, because we are living longer, it increases the likelihood that we, or someone we care for, will be affected by dementia at some point in our lives.



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Dementia is one of the main causes of disability later in life, ahead of some cancers, cardiovascular disease and stroke. It is estimated that there are already around 700,000 people with dementia in the United Kingdom, a figure that is set to double in the next 30 years. The direct costs of dementia to the NHS are approximately £3.3 billion a year. The overall annual economic burden is estimated to be £14.3 billion a year, or £25,391 per head. The estimated prevalence of dementia in people aged over 65 living in nursing homes is between 66 per cent and 80 per cent, with similar rates in care homes. To deal with this growing problem, it is right that we develop the services to deal effectively with dementia while ensuring that people with dementia and their carers are treated with dignity and respect and receive the support that they deserve.

The publication of the first ever National Dementia Strategy this February was an important milestone in raising dementia up the agenda and giving priority to improving dementia services and raising the quality of care. The content of the strategy was welcomed by a wide range of the stakeholders involved. I am glad to say that it has received support across the political spectrum. The praise it received is a direct consequence of the extensive and detailed consultation that took place in preparing the strategy.

The shortcomings of existing dementia services have been well documented and mentioned today. It should be recognised that many people with dementia do receive wonderful support from dedicated health and social care teams who provide high quality care. A good example is the Croydon Memory Service, which the Minister for Care Services will be visiting shortly. We are working to ensure that this sort of provision becomes the norm rather than the exception that it is at present.

The National Dementia Strategy provides a strategic framework within which local services can deliver quality improvements to dementia services and address health inequalities relating to dementia. The strategy has 17 key objectives and we do not apologise for that number of key themes. I very rarely disagree with the noble Baroness, Lady Barker, but on this occasion I will as I think the strategy hangs together rather well. It does address many of the issues that were raised by the noble Baroness and by other Members of Your Lordships’ House.

The first theme is one that was referred to by many noble Lords—raising awareness amongst professionals and the general public alike. It is a vital component if we are to make progress. If we are to challenge the stigma and the taboo that was mentioned by the noble Baroness, Lady Warnock, we need to improve people’s understanding, remove the level of stigma that exists and tackle the misconception that dementias are untreatable. The Department of Health has already provided funding of more than £500,000 to support the Alzheimer’s Society’s “Worried about Your Memory” campaign. A range of materials has been issued to all GP surgeries in England to help raise awareness of dementia in the general public and better to inform those concerned that they may have the early signs of dementia. A further £1 million is to be made available later this year for more work on raising public awareness.



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The second theme of the strategy addresses early diagnosis and intervention, mentioned by most of the noble Lords who contributed to the debate. The lack of early diagnosis, and services to deliver it, is a major problem and one where action clearly needs to be taken. Only one third of people with dementia ever receive a formal diagnosis. That is unacceptable. A core aim therefore of the dementia strategy is to ensure that effective services for early intervention are available on a nationwide basis.

The third theme is improving the quality of care, again mentioned by many noble Lords. We are at the beginning of a process of implementing the National Dementia Strategy over a five-year period. It is backed by £150 million of initial funding. I stress that this is initial funding as £150 million would not be adequate if it was all that was there. The Government’s aim is for services to transcend existing boundaries between health and social care, as well as between service providers and people with dementia and their carers. We will be addressing the vital issue of training and development for NHS and social care staff who come into contact with people with dementia. I take the point that one noble Lord made that this does not just concern people working in social care or who nurse people with dementia, but includes most health professionals—dentists and so on.

There are already examples of good local training in dementia taking place across the country. We need to standardise this and ensure that everyone working with people who have dementia is aware of the signs and symptoms of the disease. We will be working with the royal colleges and professional bodies to ensure there is appropriate training on dementia in undergraduate and postgraduate training in both health and social care courses. The noble Baroness, Lady Thomas of Walliswood, and my noble friend Lady Pitkeathley particularly mentioned the training of home care staff and carers. I absolutely take their point.

We have made headway in terms of vocational training for social care staff. Skills for Care has produced guidance on what care workers need to know and the skills that they should possess to provide good-quality dementia care. Similarly, the General Social Care Council has recommended that all domiciliary care workers should gain a relevant qualification on entry to the social care register. That will help to drive up standards and ensure that staff working with dementia sufferers are properly trained. The noble Baroness, Lady Greengross, was concerned that that should happen, and she is absolutely correct.

We will make extensive use of national levers, such as the Joint Strategic Needs Assessment, local area agreements, the NHS operating framework, the commissioning framework for health and well-being and the world class commissioning programme, to ensure that the strategy is fully implemented locally and that services improve as a result. I hope that that addresses the question asked by the noble Baroness, Lady Murphy, at the very beginning of this debate about how we would ensure proper implementation. We intend to use the levers that we have established to drive that forward.



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Improving dementia services is not just a matter for central government—it is a matter for local government, NHS managers, frontline practitioners and, vitally, those who use health and social care services. Neither is it just a matter of funding for dementia services. It is as much about how all the players involved can learn from best practice better to meet the needs of those suffering from dementia and their families. We must recognise that, in practice, the pace of change brought about by the implementation of the strategy will vary, depending on where services are at present. Some areas will have achieved all the strategy’s aims and objectives within the five-year implementation period. Those starting from a low base may take longer. Our job is to drive that forward, monitor it and ensure that we are giving local services the right kind of support so that they can deliver the right services. We have every intention of ensuring that that is the case.

To help make the changes needed, we have already set up a nationwide support programme with expert regional teams working closely with the NHS and local authorities in implementing the strategy. Their particular focus will be on supporting those services that are starting from a lower base and need most help and guidance. I should also mention that the department is currently setting up demonstrator sites to provide evidence on the role of dementia advisers and peer-support networks. Bids from more than 100 PCTs and local authorities were received to run these sites. This work is progressing well, and we will be announcing the chosen demonstrator sites in early July. I am pleased to be able to tell the noble Baroness, Lady Murphy, that we are addressing the important area of research into dementia, looking at our future need for research relating to the causes of the illness, potential cures, treatment and care for people with dementia. I hope that that partly addresses the issue raised by the noble Baroness, Lady Barker. I was recently able to attend an enormously helpful round table discussion on this chaired by the noble Baroness, Lady Greengross, and I am very glad that she has also agreed to chair the Government’s dementia research summit taking place on 21 July.

The summit will involve key researchers from all the relevant aspects of research, from the UK and abroad, as well as people with dementia and their carers. We believe that it will provide us with a better picture of the current body of research, where there are gaps in our knowledge, and what the priorities should be in focusing on research effort. The noble Baronesses, Lady Murphy, Lady Barker and Lady Greengross, asked whether I could assure them that the dementia research summit will provide a future strategy. I promise that that is our intention. The Medical Research Council, which is jointly running the summit, will produce a framework for the future of research and will take account of the conclusions reached at the summit and the gaps that are identified.

National clinical leadership for the strategy is of course of huge importance, and will be provided in future by a new National Clinical Director for Older People and Dementia. The post has recently been advertised and we expect it to be filled in the autumn. I should stress that there is much that needs to be done locally in terms of leadership to drive forward

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implementation. The strategy makes very specific recommendations on the need for better leadership in hospitals and care homes. We want to see the identification of a senior clinician in all general hospitals and an appropriate member of staff in care homes to be given the specific responsibility of ensuring good quality dementia care.

I now turn to some specific points raised by noble Lords. I will try to address them all in my remaining time, but if I do not address everything, I promise to go through the debate and write to anyone who has not had their question answered. The noble Baroness, Lady Murphy, raised the issue of how the Government intend to monitor spending and implementation. I think that I have addressed that point, but Objective 17 of the strategy calls for good quality information to be made available on the development of dementia services, so it is definitely integrated into the strategy. The noble Baroness also asked about the All-Party Parliamentary Group on Dementia report on training. I know that we are not allowed to use visual aids, but I read this report as part of my briefing and we know that improved training for all those involved in dementia care is a core part of the national strategy. Our challenge is of course to change the undergraduate and postgraduate curriculum for professional and vocational training, as I have already mentioned.

My noble friend Lady Pitkeathley quite rightly made the link between the National Dementia Strategy and the Carers Strategy. It is of course essential. Family carers are central to the National Dementia Strategyand I can confirm that those developing the strategy worked closely with those working on the Carers Strategy and will continue to do so as we enter the implementation stages of both those strategies.

My noble friend and the noble Baroness, Lady Murphy, both referred to the Green Paper. I will repeat exactly what my right honourable friend the Secretary of State said in another place:

“In early July, we will publish a Green Paper setting out options to reform the care and support system”.—[Official Report, 23/6/09; Commons col. 656.]

I suspect that the date will be nearer that mentioned by my noble friend and the noble Baroness, Lady Murphy, but I am not allowed to mention any date specifically.

My noble friend continued to make the point about carers and I should like to add to my remarks that the £150 million available to PCTs in addition to the £25 million available to councils to help them to provide short-term cover in emergencies may help to reassure them. By March 2011, we will have invested £1.7 billion to councils to support carers.

The noble Baroness, Lady Perry, made a most moving speech and I felt privileged to listen to it. Most eloquent in terms of the description of her husband's dementia was the plea for information. I completely agree. We are determined that that is part of the strategy and that we need to deliver it. I am completely at one with the noble Baroness about that.

The noble Baronesses, Lady Thomas and Lady Greengross, both raised the issue of anti-psychotic drugs. The Government agree that the potential overuse of anti-psychotic drugs for people with dementia is a

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serious issue. The department is undertaking a review of the over prescribing of anti-psychotic drugs for people with dementia in care homes. That follows emerging evidence that such drugs were being prescribed excessively and inappropriately. The review remains a priority and we will publish the results shortly.

The noble Lord, Lord Rix, raised the issue of dementia and people with learning difficulties. He was completely correct about the need for the dementia strategy to explicitly include those with dementia who have learning difficulties. Indeed, it does. Of all the people who present problems, it is very important that early diagnosis and appropriate care is there for people with learning disabilities. The noble Lord quite rightly pointed to the shortcomings. The National Dementia Strategy is designed to change that and good quality care for people with learning disabilities and dementia will quite clearly require joint working and a specifically tailored approach. We are discussing that, as advocated by the royal college. The implementation strategy will provide some of those solutions.

The noble Baroness, Lady Warnock, raised an interesting issue about stigma and taboo. It was a point very well made. The noble Baroness also raised the issue of early diagnosis. She is completely correct. Our strategy is clear about the need for early diagnosis for all those with dementia. One of the reasons is that this gives people the ability to make choices themselves while they have the capacity. It gives people with dementia the chance to discuss their future care and to record decisions about their future care. I can assure the noble Baroness that the diagnosis of dementia does not mean that a person lacks the capacity to make such advanced directives for information about their future care. In fact, that is extremely important.

I always love listening to the speeches of the noble Baroness, Lady Gardner of Parkes. They are always informative; they always make a pertinent point; and they are always very human in what they relay to us. She was completely correct, and illustrated it with the points that she made, that early diagnosis is absolutely the key.

The noble Baroness, Lady Greengross, referred to money for research. We know that it is not sufficient and that there is much more work to do on that. I am extremely pleased that the noble Baroness is chairing the summit on science and research. I very much enjoyed the round table that she organised the other day, particularly when the group was discussing GP diagnoses. It is an issue that is being raised by many noble Lords. I was very struck by the remarks made by Professor Steve Iliffe about the problems that GPs themselves face in making the diagnosis.

The noble Baroness, Lady Howe, made an important point about the role of employers in this matter. She was the only person who made that point. I agree with the noble Baroness about the value of the Alzheimer’s Society and the work that it does. As ever, the noble Lord, Lord Walton of Detchant, gave us a master class in the research and the science of research. I really appreciated the message of hope that he left us with at the end of his remarks. I thank him very much for doing that.



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The noble Baroness, Lady Barker, made a very pertinent point about the cancer plan being a very good model and about how one takes this forward in terms of research. As ever, the noble Lord, Lord McColl, had something unusual to say. I remember reading about the programme in a Sunday newspaper and being very struck myself about the imaginative nature of that programme.


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