rose to call attention to the needs of those who suffer from Alzheimer's disease and other forms of dementia; and to move for Papers.
My Lords, I am grateful to my colleagues on the Cross Benches who agreed that the topic of Alzheimer's and dementia was appropriate for debate at this time, and to the distinguished group of speakers from all parts of the House who have listed themselves to take part.
The fact that this year sees the 25th anniversary of the foundation of the Alzheimer's Society and the 10th anniversary of Alzheimer's Scotland—Action on Dementia, gives us an opportunity to pay tribute to the work of those societies, and particularly the many thousands of voluntary workers associated with them. I also take the opportunity to declare an interest as the president of the second of those two organisations, and as someone associated in the private care home sector with three organisations—the English Community Care Association, Scottish Care, and NHP—all of which are involved in the provision of care for many who suffer in this way.
Few in this House will not have encountered through the needs of a relative, friend or neighbour, the significant place which the diseases of dementia now hold in our society. To a considerable extent that is because we now all live longer—much longer than we did in preceding generations. All being well, that trend will continue. The robustness of debates in this House illustrates well the benefits of such longevity to the wider community.
Demographic change in our society brings opportunity as well as some problems of adjustment. In the current state of medical science, about which some who will contribute to this debate are clearly more competent than I am to comment, the comparatively wide prevalence of Alzheimer's is the central of many examples to which we must pay more attention, whether as individuals, communities or governments. I look forward to the contributions of the noble Lord, Lord Walton of Detchant, in that area, and the noble Baroness, Lady Finlay of Llandaff, among others.
Even a layman can read the message of the statistics, however. Dementia affects more than 750,000 people in the UK alone. The consequences of that are heavy, both in terms of individual and family suffering, on the one hand, and in terms of financial costs. The number of those living beyond the age of 80 happily rises each year, but with it also does the risk of developing dementia. An average of one in five who live beyond the age of 80 are likely to develop some form of dementia. Approximately one in 20 of those who live beyond 65—and I look around meaningfully—will develop dementia. Indeed, more than 18,000 people under 65 already suffer from some form of dementia.
Those are the statistics, and the impact is wide within our society. There is the immediate and often initially devastating impact on families. There is the huge need for non-professional carers, and on them a huge burden falls. The two societies that I mentioned at the beginning of this speech devote much time and energy to the support of those non-professional carers.
Looking around the House and looking at the list of speakers, I have no doubt that other speakers in this debate who are very experienced in the implications will tell us more about the impact of the development of Alzheimer's and dementia on carers. At a more formal level, there is a need for the recruitment, training and regulation of those for whom the provision of such care is a career as well as a commitment; for example, nurses or residential and community carers. This is a problem of what used to be called "manpower planning and training" to which further attention must be given.
An additional impact of dementia and Alzheimer's is to be seen in the pattern of expenditure in our health service. As we know, the health service devotes a major part of its resources to the older members of our community. As I have suggested, in this group the problems of dementia figure significantly. Equally, the impact on the care home sector, both private and public, finds it struggling to deal with demand at local and regional levels. If one looks at the numbers, there appears to be roughly the right number of beds and rooms available on a national basis, but their distribution is not helpful to the needs of folk living in one part of the country where there is under-provision and over-demand. If one is unwell in Croydon, it is not helpful to be offered a residential place in Bootle—albeit that Bootle might be a fine place to live otherwise. Equally, the problem of delayed discharges is still with us. It has to do with the difficulty we have in providing adequate care on a long-term basis for those of whom we speak.
In due course, I shall be critical of some aspects of government policy and the implementation of that policy, but I want to recognise that, in committing increasing sums to the provision of care for the elderly, the Government have shown good intent in this area. That should be recognised.
Before turning to that issue, let me stress some positive factors. It is easy to be very gloomy about Alzheimer's and dementia. The first positive factor is the enormous commitment in the voluntary sector to drawing attention to, and supporting the needs of, carers and those who need care. There is still more to be done but if, with jaded political palates, noble Lords are tempted to cynicism, I urge them to look at the altruism in our society that is seen so clearly in the adoption of the burdens and responsibility of caring, not least in the area we are speaking about today. It is no rose-tinted scenario that you will see there. Do not expect simply to smile automatically. There is a real burden, but it is a burden and a responsibility that is widely shared in our community and that speaks well of the continuation of genuine altruism in our society.
One positive part of all of this is that these are the problems of a society in which one consequence of affluence is increasing longevity. This is not bad news, this is good news. No longer do we retire at the statutory age and conveniently die within two years. That is progress; it is good. It is opportunity rather than problem.
Many of the illnesses that curtailed demographic optimism and reduced longevity in the past have been contained through the dedication of our sisters and brothers in medical care and research. Research allowed us to deal with the suffering, as well as the costs, of stomach ulcers. That is a benefit to the individual, to the Exchequer and to those who have relatives who suffer in that way. Similar research hares are running in relation to Alzheimer's and doubtless we shall hear more of this later in the debate from other speakers. If success is achieved in research into Alzheimer's that is equivalent to the success of beta-blockers in dealing with some heart conditions, then the benefits will be shared by patients, carers and, I stress, by the Exchequer as well. The fact that someone, for example, who has an ulcer no longer needs days and days of hospital care after major surgery and thereafter needs a significant period of convalescence is a benefit to the Exchequer as well as to the individual. I have no doubt that progress in research in the area of Alzheimer's and dementia will see some such benefits coming to us in due course. There is no reason, in principle, why with adequate research support—I could not help inserting that—this should not happen in the areas of dementia and Alzheimer's.
One of the more positive messages that must also be spread is that, although Alzheimer's is a degenerative disease, it is not an immediate "all or nothing". This must be understood by those who have to confront it. Through support, care and drug treatment, symptoms can sometimes be contained and quality of life maintained well beyond expectations when the word was first mentioned. That message needs to be relayed. I have met some people who suffer from Alzheimer's who, with the support of a sympathetic employer and perhaps a rescheduling of duties, continue to be employed. It is not simply an immediate cessation of normal life. I have one correspondent, a dementia sufferer, who has devoted his time and energies to the positive task of designing cards to be used in local communities in a way that makes the use of public transport much more possible and reasonably safe. This is enterprise from someone who suffers. It is self-help that belies the suggestion that it is "all or nothing" immediately. Knowledge and understanding of this is part of the support system which the two national societies provide.
So is all as well as can be expected? I seem to be giving a very positive message. Is the ship sailing in comparatively calm waters? May we as a society feel reassured that all is being done that ought to be done? Inevitably the answer is, "No". I submit to noble Lords that there is a flaw at the centre of government policy. The flaw in question is accompanied by the frustration of those who, watching the implementation of this policy, see large sums of money being spent, and the good intent of the Government, but want to raise issues of value for money and of how the money is spent.
If you doubt this, I recommend the special report of the health ombudsman, NHS funding for the long term care of older and disabled people HC 399. The essence of the matter is the manner in which need for care is assessed at local level and the eligibility of individuals for financial support. In this report, the ombudsman is not shouting, "Let's have more money" but rather, "Let's look at how the assessments are carried out and how the allocations of support are being made". She writes of the consequence of her recommendations in that report in a subsequent report:
"My office has received over 3,000 complaints about this subject since we published our special report".
A hitherto officially unacknowledged problem is identified here in the work of the health ombudsman.
The problem that still dogs the implementation of government policy is this: Alzheimer's is not treated as an illness or a disease on all fours with other illnesses and diseases. If you are unfortunate enough to have heart problems, to the best of their ability, the staff of the National Health Service will deal with them, and there will be no charge for the care offered, even if it involves state-of-the-art surgery and the excellence of our intensive care units. The same is true, for example, of cancer of the lung, or cirrhosis of the liver, even if in part it is self-induced. This does not apply to the needs of many people who suffer from Alzheimer's. In all parts of the United Kingdom other than Scotland, they will be progressively charged for what is described as "social or personal care" if they have assets over £18,000. At one time that may have seemed a large sum of money, but it is not a criterion that identifies "the rich". A normal-sized family car costs about £18,000 and may be the product of years of scrimping and saving. A Department for Work and Pensions report in 2002 showed that 61 per cent of self-funders in residential care had incomes of under £200 per week. These are not rich people. Yet if they have any assets at all—regardless of their weekly or annual income—they will be charged for their care until their assets are depleted to £10,000. They will be so charged, irrespective of the fact that their only offence is that they perhaps suffer from a brain-based disorder. That cannot be right.
The problem to which the Government are not yet facing up is the attempt to draw the line between healthcare and social care and to define eligibility for support on that basis. A sign of the artificiality of that is the old joke, "What is the difference between a health bath and a social bath?" Formerly, a bath given in the hospital by a nurse was a health bath, while a bath given at home by the local care worker was a social bath. It is nonsense. I suppose that that is the example that everyone uses.
Recent redefinitions have focused not only on where care is provided but on who provides it. If it is provided or directly supervised by a doctor or an NHS nurse, then the patient is not required to pay. If care is provided by someone else, perhaps a non-professional or a professional carer in the patient's own home, the cost of the care will fall to the patient. I have already quoted the health ombudsman's report (HC119). As I said, it stated that more than 3,000 subsequent complaints were lodged. She commented: "I hope"—not "I know", but simply "I hope"—
"that, as a result, many complainants will be satisfied that the patients involved will have been re-assessed fairly against lawful and transparent criteria".
There, it might be said, is the rub. Are the criteria lawful and transparent?
In the report of the Royal Commission on the Funding of Long Term Care of the Elderly, which I had the honour to chair, a whole chapter was devoted to how to define care and the need for care. Without exception, our 2,000 correspondents and the many professional bodies that gave evidence to us indicated that, for them, that is an artificial distinction that cannot in practice be drawn in a transparent and legally acceptable way. Yet, government policy and the Government's advice to local authorities is based on drawing such an artificial distinction—hence the difficulty at local level; hence the ombudsman's involvement; hence the 3,000-plus complaints lodged immediately on her first ruling on the matter.
I am not suggesting that this is simply a call for more money. If the problem is one of resource and cash and people are to have these needs met on an equitable basis, then it is a problem for health service funding, and other charges may have to be introduced. If that is so, let us face the problem squarely and not in a manner that continues to penalise those suffering from Alzheimer's or dementia. I beg to move for Papers.
My Lords, I thank the noble Lord, Lord Sutherland of Houndwood, for initiating this debate and for the authoritative and caring nature of his remarks. I, too, declare an interest, not only as a layman but as president of the Flintshire Alzheimer's Society in Wales.
Dementia is a terminal condition. In the later stages, people experience severe memory loss and lose the ability to walk, wash and feed themselves unaided. Chewing and swallowing are difficult, and many will be doubly incontinent and lose their speech. However, unlike those with other terminal conditions such as cancer, people with dementia do not necessarily qualify for free care on the National Health Service. That is the nub of the matter.
Much of the issue has to do with the Government's definition of what constitutes health care. A large part of the care which people with dementia require comes from care assistants which the Government class as "social care" and is means tested. If that care were provided by a nurse, then people with dementia would not be charged for care. In all of this, that is an important fact.
There is also a need to raise the profile of dementia care in the National Health Service and social care. People with dementia are regularly cared for in care settings where the staff do not always know how to care for them effectively. So perhaps dementia-care training should be a compulsory part of training for all those in the National Health Service and in social care. Of course, I hasten to say that there is widespread effective and devoted care. But that is not always the case.
People with dementia and their carers want to remain in their own homes as long as possible. Regrettably, however, there is often not enough support to make that a reality. So the result is that many have to go into long-term care far earlier than is necessary. That is not the best solution either for those immediately involved or for society more generally. After all, there is huge pressure on long-term places. Moreover, we also need better access to respite care. In this subject, respite care is a boon to hard-pressed families. The question should be asked, when shall we have more?
Access to drugs has improved since the National Institute for Clinical Excellence issued guidance, but will the Department of Health please ensure that the national institute guidance is implemented uniformly and effectively? Many think that the situation requires effective implementation. The aim is to give affected people the chance to benefit from these treatments wherever possible.
In the past 30 years, and perhaps more, I have visited at least a dozen such homes a year. I have seen at first hand the terrifying impact of dementia. I have witnessed the heartbreak and the perplexity of the attendant loyal and loving families. The National Alzheimer's Society has been a shining light in all of this. It has become an authoritative leader and opinion former in this complex field. For many years I worked with the society's previous chief executive, Mr Harry Cayton. He has been a good friend to many. I wish his successor, Neil Hunt, all the very best.
Surely your Lordships will agree that the society is one of the most successful and honourable organisations in the land. I am glad that the society is now spreading its influence across the Principality. This debate enables me to praise sincerely the Flintshire Alzheimer's Society and particularly its newly formed committee. Our chairman, Mrs Hughes, leads a very dedicated team which links up with our north Wales officer, Alwyn. It is clear to me in the work that I do with the committee that its dedication is definitely engendered by personal family experience, often of a very prolonged and harrowing nature. The committee members are very public spirited people. They seek to help others now facing similar challenges to those that they had to face up to. I admire them and I know that there are many people like them throughout our country. They should be praised often and loudly, and thanked.
The Flintshire society is a good mix of voluntarism, practicality and compassion. We have been encouraged by very generous financial support from local employers such as Airbus, MBNA, HSBC and the steel-making company Corus. Additionally, our county council and Deeside Rotary Club have been in the van. They have been generous and we should thank them. Our local office is now open several days a week. We are a small, good quality team seeking to give service in our community. It is a fact that we are needed. We are new, we need more money and we need more backing, but I know that the work we are doing is of the finest. No praise is too high for the committee.
Finally, I urge the Government to make care available on the National Health Service and to give even more help and assistance to the Alzheimer's Society.
My Lords, I, too, am most grateful to the noble Lord, Lord Sutherland of Houndwood, for having brought the terrible plight of those with dementia, and those who are about to experience dementia, to the fore.
Before diagnosis, memory lapses fluctuate with delusions, depression or even suicide attempts. The family, in despair, may find the diagnosis a relief and may say, "We always knew there was something wrong". But it is after that that the full reality of the disease dawns. No one should underestimate the burden for carers, nor how, with excellent professional care, that can be eased. Other noble Lords will address the issues of patient care and the stresses on carers. The personality who was is no more and the family grieves long before the person dies.
I plan to confine my remarks to the importance of research and the hope that it holds. I am proud to declare my interest as vice-dean of University of Wales College of Medicine, which is at the very forefront of genetic research in this field. Currently, about 536,000 people across Britain have moderate or severe cognitive impairment. The incidence rises steeply with age. Estimates are that the overall numbers are predicted to rise still further because of ageing demography combined with earlier onset vascular disease over the next 20 years.
Current treatment of Alzheimer's dementia relies on the group of drugs that inhibit an enzyme in the brain called acetylcholinesterase. These drugs work by blocking the breakdown of acetylcholine, a deficit of which seems to contribute to the development of certain behavioural disturbances seen in Alzheimer's. Four of these drugs are currently licensed. They each work in slightly different ways, but despite that overall they are effective only in about 40 per cent of people. The National Institute for Clinical Excellence looked at these very early on and produced helpful guidance on prescribing and monitoring. The monitoring, to be undertaken at one and three months, is expensive because it is time consuming. If the drugs are not helpful after three months, they are stopped; if they are effective, monitoring is ongoing. However, they only delay the time when long-term care is needed.
These drugs are also helpful for a time regarding dementias arising from vascular disease but are not licensed for this use. Lewy body dementia, a specific type of pathology manifested by fluctuating confusion mingled with visual hallucinations, also responds well to these drugs. So where does the drug research need to be done? The neurobiology of behaviour must be understood to enable drugs to target specific problem changes—functional neuroradiology with PET scans has much to offer, both in understanding the disease and in tracking the response to drugs.
Other bio-markers of disease progression need to be developed. But the difficulty is that these patients already have impaired competence, so consent is problematic. Some will have left an advance statement that they would wish to enter a research study that may help them or someone else with the same disease. Some in the early stages may have given consent to enter trials, but those with more advanced disease also need to be studied to ensure that later stages can be understood, with an aim to ameliorate. The Government have been looking very carefully at issues around mental incapacity and I hope that the European regulations on research will not exclude these patients from participating so that better treatments can be developed for them and for the next cohort of sufferers.
The Alzheimer's Society and the Alzheimer's Research Trust are jointly funding the establishment of a "brain bank". This will be an incredibly important resource. Carers and sufferers are very supportive of this plan to collect post-mortem brain tissue and I hope the potential difficulties that the Human Tissue Bill may pose can be ironed out so that the unique potential of such a tissue bank can be realised.
Genetics research may hold one key to unlock understanding of the pathology. Genes have been localised that seem to predispose to being ill with dementia. Blood samples from families where there is more than one sufferer are proving important and again it will be important that the Human Tissue Bill does not impose so many barriers to epidemiological research that it becomes impossible to look at the epidemiology of traits of dementing diseases.
Another consideration must be the relatives. The family of a person with dementia may have had a traumatising and exhausting experience. When the person finally dies family members may well feel relief, wish to escape from their recent experiences and move on. If researchers have to go back repeatedly after the patient's death to obtain consent for studies that look at the surplus specimens of blood, or other tissue, many of those relatives will be deeply upset and disturbed, being hauled back in time in their bereavement process. They, of course, need to be able to access information on research that is ongoing, but at the time and rate of their choosing.
The brain is the very seat of personality, reasoning and all higher functions as well as the control house of all activities and regulation of the body itself. So the role of research databases, perhaps accessed through those charities that support research in this area and have been so active in moving forward the frontiers of improved care, will be very important if the complexities of this disease process in the brain are to be understood and then controlled, both for the good of current patients and, equally importantly, for the next generation of patients who are just round the corner.
My Lords, in addressing your Lordships for the first time I should like to express my thanks to Members of this House and others who have made my induction thus far wholly congenial and relatively painless. I am most grateful and trust that it will continue in similar vein.
I wish to say something today about the pastoral care of those suffering from dementia and their capacity for spiritual awareness. My interest in this subject springs partly from the experience of trying to care for my mother-in-law who suffered from dementia for some 13 years. For much of that time my wife and I attempted to do this in our own home but, sadly, there came a time when this was no longer possible. During the time that she was with us, there were occasionally lighter moments as, for example, when my mother-in-law chastised my secretary for not cleaning the cooker properly. We quickly became aware that, in reality, that was more a mechanism for helping us to cope with the situation than any alleviation of her own suffering. For us, as for so many carers, the constant challenge was to remember that she was still a person and not simply a patient.
The Churches, in common with other faith communities, have of course always been aware of the problem. In past ages, physical illness often took its toll of people before dementia set in. Now, with people living longer as we have been reminded, it is not uncommon to find that those whom we love are physically well but suffering from a mental impairment that makes normal relationships difficult, if not impossible.
It is my underlying conviction that the subject of dementia needs a specifically religious or spiritual perspective, and not simply one drawn from medical science or social policy, crucial though those are. In saying that, I should like to quote the pioneering work of Professor John Swinton of Aberdeen University. He has written and spoken a great deal on spirituality and mental impairment. He points out that dementia is frequently misunderstood as a form of mental illness, saying:
"The particular way in which dementia has been constructed under the influence of the bio-medical model of health and illness has blinded us to some fundamental issues of personhood, spirituality and humanness. The crucial significance of dementia as a human experience, and indeed as a deeply spiritual experience . . . has been overlooked or down-played in the development of current understandings of dementia and accompanying modes of caring. Re-constructing dementia using a spiritual perspective based on the lived experience of dementia (spirituality being understood in its widest sense as the human quest for meaning, purpose, value and hope, as well as that which is transcendent and captured within established religions) . . . offers new possibilities of understanding dementia. A concentration on the spiritual contributes to a process of holistic reframing of what dementia is as a biological, social and spiritual phenomenon, moving us towards a perspective which captures the fullness of sufferers as relational and spiritual persons with concomitant needs. Such an approach helps resurrect the personhood of dementia sufferers and reconnects people who are by definition in the process of being disconnected from self, others and God".
That person-centred approach is very much the one adopted by two organisations to which I would like to draw your Lordships' attention. The Christian Council on Ageing Dementia Group is perhaps best known for its award-winning video "Is Anyone There?". That network first came together some 15 years ago out of a shared concern that people with dementia were often not regarded as persons with the same rights and spiritual needs as others. The council's excellent practice guide offers practical advice to carers on how an understanding of spiritual needs may be integrated into existing care plans. It seeks to point to a holistic regime of care for dementia sufferers, a regime which addresses the whole person including the spiritual dimension. The council works in close collaboration with other faith communities and with a growing number of dementia services development centres.
The second organisation to which I refer is located just across my diocesan boundary in Temple Balsall. The Katherine Leveson Foundation offers a focus for inter-disciplinary study on ageing, spirituality and social policy. It seeks to develop an understanding of spirituality as lived by older people, including those suffering from dementia, and to support them in expressing spiritual awareness. It has recently launched a resource directory for those in churches and other places who are working with older people. It offers lectures and seminars on subjects such as "Seeing the Person Behind the Dementia".
I shall quote again, this time from a former dean of Coventry. John Petty retired from our cathedral three or four years ago and is now chaplain in a residential home in Shrewsbury. He describes two worshippers who came recently to one of his services, writing that, "Nancy is Welsh", not that that is relevant. He continues:
"When I put the hymn book into her hands she simply says, 'That's heavy'. Nancy sang in her church choir and knows much of the Prayer Book. Jean is her great companion. Jean once worked for the British Council in Lisbon. They are inseparable. As you push one wheelchair alongside the other, both faces light up but if you ask them the name of their friend they couldn't tell you. A constructed sentence is beyond them and yet the Lord's Prayer, the Nunc Dimittis and the Book of Common Prayer responses flow out".
I suggest that it is probably not possible for us whose minds are still relatively unimpaired properly to evaluate the experiences of those who are able to recognise the familiar words of hymns or prayers, but unable to recognise the face of a favourite daughter or grandson. What is clear, surely, is that if we are to continue to value such people as children of God, we must also continue to treat them as though they are made in God's image. And whatever else that term may mean, it implies a capacity for a relationship with God which exceeds the purely rational.
I have spoken about spirituality and pastoral care. That is not because I am unaware that the House is here to discuss issues of policy and the well-being of the nation. I have spoken this way because I believe that spirituality offers us a way of seeing the individuals who are the focus of the debate in a holistic and relational way. I suggest that talking of the spiritual needs of those with dementia, and, indeed, of their carers, offers a new and fresh perspective on the issue.
I do not underestimate the difficulties that the subject raises, theological difficulties as well as medical. I do not imagine a world in which worship and pastoral care are easy. Nevertheless, it is at this point that I feel Christians and other faith communities may have something to offer.
My Lords, it is a great pleasure to speak in this debate initiated by the noble Lord, Lord Sutherland, with whom I have had a long connection through his chairing of the Royal Commission on Long-Term Care of the Elderly. However, it is a most particular pleasure to follow the splendid speech of the right reverend Prelate the Bishop of Coventry.
It is always a dilemma what to say on such an occasion, especially as the right reverend Prelate and I have not met officially, nor served on any committees together, nor even until today taken part in any debates in this House together. His Who's Who entry lists his recreations as mediaeval music and woodcutting, but I am afraid that that is no comfort to me as I happen to be tone deaf and not very competent with a carving knife. I consoled myself with the thought that it would be sufficient to say how delighted the whole House would be to welcome another distinguished Member to the Bishops' Benches, and that we looked forward to hearing from him on many occasions in future.
I need not have worried, as it was very clear from the right reverend Prelate's speech that he has the caring experience so familiar to many of us. We were honoured to share in some of that. He and I, along with many others in the House, some of whom are speaking today, share a huge interest and a passionate concern for vulnerable citizens and their carers and those facing difficulties of the kind that we are discussing. His speech was both heart-warming and inspiring. It is an honour to welcome him to this House, and we look forward to hearing him contribute to our debates and the whole legislative process many more times.
Last September, I addressed a conference in Dunedin, New Zealand, organised by the Alzheimer's Society of New Zealand. I was there to talk about the progress made for carers in the United Kingdom and I was billed as the keynote speaker. My speech went quite well, but the real keynote speaker—the real star of the conference and the one who no one will ever forget, having heard her—was the woman who herself had Alzheimer's disease. Her presentation, her honest appraisal of her illness, the effect of it on her husband—her carer who accompanied her—on her friends and on her whole life was the most compelling presentation I have ever heard. It allowed us a glimpse of the complex dilemmas and the sheer guts of those who cope with this affliction. She, too, spoke movingly about her spiritual journey and I was very much reminded of that during the speech of the right reverend Prelate.
The speech also gave those of us who listened to her ammunition with which to counter the claims sometimes made by those who deal with Alzheimer's patients that they would be happier if they were treated as babies. The argument goes that they lose physical and mental abilities in the opposite order to how children gain them and eventually they return to the infant state. It is a great credit to the work of many physicians and of organisations such as the Alzheimer's Society that we have learnt that acknowledging that some behaviour may be child-like does not require us to infantalise the whole person.
I am reminded of the carer who was looking after her husband, who had Alzheimer's. She said of her husband, who was a music lecturer, "He bounces up and down like a baby in time to music". But she also acknowledged that his child-like pleasure must not mean that she concludes he would now prefer nursery rhymes to listening to opera, as he used to before he was ill. That carer seemed to be very sensitive to those important nuances.
The Alzheimer's Society has led the way in engaging those who are themselves sufferers in the governance of the organisation. It has encouraged them to stand for election to the board and to participate fully. That is a fine example to all voluntary organisations, and the fact that the former chief executive, Harry Cayton—my noble friend Lord Jones mentioned him—is now leading the Government's programme on patient and public involvement will make certain that the trend towards full participation in the development of public policy will continue.
That is good news. But of course we must not forget—and your Lordships would not expect me to—that we must couple the needs of the patients with meeting the needs of those who care for them. Caring for someone in the final stages of Alzheimer's disease is a challenging and isolating experience, however great the love you bear for that person. And you often have a double loss, of course; the loss of the person you love because of the great personality changes that take place, and the loss of your own freedom and the life that you shared together.
We must remember that the needs of the carer may not always be the same as those of the patient. Indeed, they may sometimes, perhaps often, be in conflict; for example, the carer needs some time off, but the patient is unsettled and anxious when anyone else comes in as a substitute. In such situations, the social workers, the medics, the nurses or other family members, have a role as brokers, negotiating to try to meet the needs of both parties.
I said in the debate in which some of us took part last night that huge progress has been made in recognising carers, much of it under this Government, and we must never forget it. There has been new legislation about assessment; changes to earnings limits on benefits; credit allocated to carers for a state second pension; and some easing of age restrictions on other benefits. We now have the right to time off for domestic emergencies and the new Bill will soon come before your Lordships' House, the Carers (Equal Opportunities) Bill, which will, I hope, promote the principle of equality of opportunity for carers. It is a Private Member's Bill, sponsored by Dr Hywel Francis in the other place. I know that your Lordships will support it when it comes here, with its emphasis on promoting information given out to carers so that they know about their rights.
But however much progress has been made, we must always acknowledge that much more remains to be done. In particular, I would cite the continuation of funding for carers' breaks—respite for someone looking after an Alzheimer's patient is absolutely essential and government funding is due to finish in 2006; the promotion of more flexible working policies; and the development of more appropriate and flexible services.
There has been a huge change, too, in the attitude of those who come into contact with carers and a real commitment to acknowledging and meeting their needs. The carers' movement, led by Carers UK, has a great deal to be proud of, not least in promoting the position which users and carers now occupy as central to policy making and the development of practice. The changes in the way community care has been delivered over the years have required not just changes in organisational and financial terms, but a huge change in the attitude of those who deliver the services.
It is one thing to say that users and carers should be at the centre of decision-making processes; it is quite another to implement that. That demands a change in the attitude of the professionals about sharing information—and issues of confidentiality surround that when it comes to Alzheimer's patients; about allowing people to make choices that others may not think are the best; about risk-taking; and about managing conflict in relationships. It is also about developing the confidence of users and carers so that they have enough self-esteem to participate in the consultation processes, which are now, I am happy to say, sometimes but not always offered in a way that is not tokenistic and which really result in changes in practice.
It requires, too, that professionals are prepared to redress the imbalance of power which exists between patients and carers and professionals. They should divest themselves of the stereotype images which they may have—typically, a carer for an Alzheimer's patient would be seen as either a martyr or a victim, not necessarily as an equal partner in the development and provision of care. It also requires society to ask some of the more difficult questions which we often shy away from: questions such as, do adult children always have a responsibility to look after their parents? If so, in these days of serial monogamy, does that extend to extended families? What is your moral obligation to look after your former father-in-law or your step-brother? Those are difficult questions for society, but they need to be addressed when we are thinking about these issues. There is another vexed question: do children have a right to inherit their parents' resources, or should they be used to pay for care?
The carers' movement has an admirable history of pushing us all to address these issues and to look at the rights and needs of carers, recognising them as the prime providers of community care, but never looking at their needs as in conflict with those of the person they are looking after, even if they are—and they usually are—inextricably linked together. We should never forget that the care we give for those with dementia is predicated on the unpaid care of families and community to the tune of £57 billion—I cannot resist reminding your Lordships of that—given willingly and with love and duty. That offers a shining example in any society.
My Lords, I congratulate the noble Lord, Lord Sutherland, with whom I had the privilege to work some time ago. We know each other well and I am delighted that he has secured this debate on what is such an important subject. I also congratulate the right reverend Prelate. Although I have worked in this field for so long, he reduced me to tears. He reminded us of the spiritual needs of many older people who, just because they suffer from one form or another of dementia, need that spirituality more than ever. They can gain such joy and pleasure from church music, a reminder of their childhood, and the comfort and knowledge that someone cares about them in a wider sense than this world. I was very moved by his speech.
I was extremely fond of an eminent geriatrician, Bernard Isaacs, who, sadly, is no longer with us. I always wished that if any of my elderly family were ill they could go to see Bernard. I loved him dearly and I always remember one remark he made; that we now experience the survival of the unfittest.
That is quite a telling remark: it is a mark of our increasing civilisation and it is a triumph but it is also an enormous tragedy. Thankfully, many people with chronic diseases survive, but the one dread that most of us share is that we may be inflicted with dementia. It haunts us because it is a tragedy when it hits us. It is a tragedy for the dementia sufferer and a tragedy for the whole family and everyone who cares for the sufferer.
The noble Baroness, Lady Pitkeathley, has much experience of what it means to be a carer. I do not want to add many words to what she said; I simply want to say that the experience of caring for someone with dementia—someone who becomes unrecognisable as the person whom we used to know and love—leads to hugely mixed emotions. The carer wants the person to get better. He or she knows that the sufferer will die and therefore, in some ways, wants that person to die because it will be the only escape. With those feelings go tense mixed emotions. The carer is sometimes unable to cope with those emotions and with the problems of caring, and that, of course, can lead tragically to other forms of abuse of the elderly. We know that that is often the case.
In this country, we are sometimes very pleased to be able to say that about only 5 per cent of our elderly population are in any form of residential or institutional care. However, that means that huge numbers of people who suffer from this type of disease are being looked after at home—either in their own home or in that of a member of the family—by devoted carers who must try to manage.
We must also recognise that organisations such as the Alzheimer's Disease Society and the Alzheimer's Research Trust carry out important work but they cannot deal with this huge challenge without a great deal of funding and support from governments across the world. I declare an interest in that I head the International Longevity Centre-UK network hub. It is an international organisation and, through the Alliance for Health & the Future, it is examining indicators of cognitive health across European countries—both European Union countries and accession countries. It is producing health indicators of cognitive health and benchmarks of care. It is US-funded and is looking at the huge problems that this type of disease presents to us all.
Certainly, if there is no change in the dependency rates and patterns of care that we know at present, the number of people in Europe with dementia will rise by 23 per cent by 2020. If we could do something about dementia and if the dependency rates declined by only 1 per cent per year, the numbers in care would remain constant. Therefore, if we could reduce the numbers just a little, we would start to see enormous changes in the care patterns that would be required.
Others, including the noble Lord, Lord Sutherland, spoke about the very vexed debate on the financing of health and social care and the definitions of nursing care and so on. In this country, we believe that people who need healthcare should receive it free at the point of need, and we know that there is still gross unfairness in the system. The Alzheimer's Society sent me the following quotation with its briefing:
"My mum is totally bed-bound, doubly incontinent, unable to communicate or feed herself and has swallowing difficulties. She needs care 24 hours a day. I can't understand why she has to pay for her care".
That, to me, is a health need. I hope very much, and expect, that the impact of the health ombudsman cases, the Community Care (Delayed Discharges etc.) Act and other measures will mean that more people with dementia receive continuing NHS care, paid for outside the hospital environment, as their needs are often health needs and should be recognised as such.
Recently, the Medical Director of BUPA Care Services, Clive Bowman, carried out a survey of the 15,000 residents in BUPA care homes alone. He found that more than one-third of the residents suffered from dementia—38 per cent in nursing homes and 31 per cent in residential homes. He said that,
"the future of care is brain failure", unless we do something to stop it. We know that by 2010 in the UK, 840,000 people will have moderate or severe dementia; by 2050, the number will be 1.5 million; and one in 20 of those aged 70 to 79, one in five of those aged 80 to 89, and one in three of those aged 90 or over will suffer from the disease. Whenever I am in a room with many people, I look around and wonder how many of us will suffer from dementia and how many—probably the remainder—will have to care for those who have it.
Statistics provided by the Alliance for Health & the Future estimate that in Europe 5.5 million people suffer from mid or late-stage dementia—the majority with Alzheimer's—and we know that vascular dementia accounts for 20 per cent. But it is possible that some dementias are preventable. We know that many cases of dementia are undiagnosed or wrongly diagnosed. Many elderly people who suffer from clinical depression are, in a way, put aside as suffering from dementia when that is not the case. Therefore, they are not treated in the best way or as well as they might be.
There are some very hopeful signs of what it will be possible to achieve with regard to the dementias. Recently, I heard Professor Colin Blakemore talk about some encouraging results that he had encountered when carrying out research on mice. Those results were almost accidental. As part of the programme of animal welfare, some mice used in the experiments were given toys to play with—for example, tunnels to run through and things to turn around. The mice were injected with Alzheimer's and it was found that it took far longer for those which experienced a great deal of physical and mental activity to develop the disease when compared with the ones which did not. I consider that to be terribly important because genetically we are so similar to mice. That gives us much to think about.
My noble friend Lady Greenfield talks and writes a great deal about the brain's extraordinary capacity to recover from disease and to compensate for the loss of function. Therefore, we must support research efforts and we must do so in the most encouraging ways that we can.
Individually there is much that we can do. Next month at the Annual Public Health Forum, the Alliance for Health & the Future will launch guidelines for a healthy future. One of those concerns cognitive vitality. It provides a helpful contribution and makes sensible recommendations on what we might do to avoid the onset of the dementias. Those include exercises for the brain, physical activity, social activity and intellectual activity. Portsmouth University carried out a study on older people who play bingo. One may not consider that to be terribly stimulating intellectually, but the people who played bingo did not suffer so much, or so early, from dementia as those who did not. I believe that the bingo provided a combination of social and mental activity. The guidelines also indicate that it is important to manage stress, have enough sleep and feed the brain with a healthy diet, avoiding some of the more dangerous anti-ageing drugs and supplements that are now available. It is also important to have regular medical checks.
In conclusion, we must support research efforts. There is much to be positive about if we recognise the challenges and make worthwhile efforts to support the voluntary sector. The voluntary sector's care for people with dementia is extraordinary. I remember a tiny Age Concern organisation, which took people with dementia, washed them, dressed them, and sought to help them to eat and to have their social skills returned and managed that without any professional help.
I remember a hospital psychologist who tried to return people with dementia to normal living by providing activities for them in a school within the hospital. The elderly people did not want to go to the school because their memories of schooling were so dreadful. However, the psychologist had the bright idea of changing the school into a pub inside the hospital. The people suffering from dementia learned the skills in an atmosphere which they found friendly, and half of the unit of dementia sufferers were returned back into the community. Nearly all of them died at home, not in hospital.
Those kinds of experiments are very successful. Despite the fact that Alzheimer's disease is the third most costly disease, less than 2 per cent of biotechnology companies in the US, where much more is spent on this research than here, have any serious programmes for this disease. So, there is a lack of funding for research into Alzheimer's and other forms of dementia. If we could postpone the onset of Alzheimer's by two years, we could close down a huge proportion of our care institutions. That needs to be done as a high priority. We must support research. I hope the Minister will agree that that is a priority in this country for everyone.
My Lords, I, too, congratulate my noble friend Lord Sutherland on securing this debate, which is important for older people and their carers. I congratulate too the right reverend Prelate the Bishop of Coventry on his sensitive and excellent maiden speech.
Having heard other noble Lords, I shall confine my observations to the needs of black and other ethnic minority older people with dementia. It would appear that the incidence of Alzheimer's disease and other forms of dementia among minority ethnic groups in Britain is no different from that of white people. Epidemiological research would give more accurate data in future.
As most migrants from the Commonwealth came to Britain in the 1950s to the 1980s, their populations are ageing at different rates. In the National Census for 2001, people over 65 years of age formed 16 per cent of the white population but among ethnic minority groups they form 9 per cent of black Caribbeans, 5 per cent of Indians and 4 per cent of Chinese people.
Given the statistics referred to by the noble Lord, Lord Sutherland, we can expect that with the increasing number of older people, more ethnic minority people will develop Alzheimer's disease and other forms of dementia in the next decade. They are also more likely to live in poverty and poorer housing than white people due to their previous unemployment or low-paid employment and a shorter time to contribute to pensions. The implications of those factors for statutory services and the NHS to consider in terms of service delivery are significant for the following reasons.
First, older people from minority ethnic communities are not fluent in English and need trained interpreters to access mainstream services. Even those who have been educated in the English language prefer to use their mother tongue as they grow old. This development implies that health and social services will require more trained interpreters in future than today. Part of that language need may be met by recruiting bilingual professionals from a variety of ethnic minority communities engaged in the care of older people.
Secondly, both formal and anecdotal evidence suggests that ethnic minority older people have some of the worst health in the nation and are more likely to experience unsatisfactory treatment from the health and social care system. If health and social care professionals share the patient's culture, communication and satisfaction levels with patients and carers would be better. As more women survive in older age groups, they would prefer care from female professionals. Cultural background influences the care of black and minority ethnic elders. In that context, it is a fallacious stereotype to assume that ethnic minority families, "look after their own".
Today, many African, Asian, Caribbean and Chinese older people tend to live alone rather than continue to live in the extended family. However, they maintain contact and are visited by their children. Carers from ethnic minority communities complain that they do not obtain support from statutory services because they are not able to access the range of help and benefits to which they are entitled. That was discovered in research done by the Afiya Trust and the National Black Care Workers Network in 1999 and 2000. Here, I declare an interest as chairperson of the Afiya Trust, an NGO focusing on the health and social care of the minorities in Britain.
That research led to a good practice guide being published entitled, We Care Too for people working with black and minority ethnic carers. The guide was launched by the Minister of State for Health in January 2002.
The common need of all older people, including those suffering from dementia, is to access services that treat them effectively and with respect and dignity. The so-called "colour blind" approach followed by many mainstream services has not provided the holistic care needed by ethnic minority older people. For first generation migrant older people, the services provided would involve information in different languages, involvement of community services, availability of staff who speak the same language, provision of appropriate food and access to familiar skin and hair products. Services would be more effective if they respond to different religious and cultural needs.
There have been some initiatives from the statutory sector as well as from voluntary agencies such as Age Concern England and Help the Aged that have promoted the health needs of ethnic minority older people. But continuing research and surveys show that while there are excellent examples of good practice, provision for the diverse needs of ethnic minority older people in the United Kingdom falls far short of the required level. While the National Service Framework for Older People makes only brief reference to ethnic minority older people, it does provide one of the most powerful tools to ensure effective service provision. It is now time to put into practice systems to ensure an appropriate response to needs.
Respite care is a priority because ethnic minority carers encounter particular difficulties accessing respite care for the older person with dementia living with them. Difficulties range from language barriers to concerns about whether the person for whom they care would feel secure and comfortable in respite care. High-quality respite care that caters for the needs of ethnic minority older people may be the factor that allows an individual to continue living in the community with the help of his or her carer rather than being moved into permanent residential care.
So, what can be done to improve the experience of ethnic minority older people and their carers? The Government introduced the Race Relations (Amendment) Act in November 2000. That powerful legislation requires every department in the statutory sector to prepare race equality schemes (RES) to improve the quality of services that they provide and experienced by their ethnic minority users.
Race equality schemes were to be implemented in May 2002 by all government bodies, including the NHS and local government services, but their development and implementation has been patchy and requires monitoring. If these schemes were effectively implemented, ethnic minority older people, including those suffering from dementia, and their carers would experience a better quality of care.
My Lords, I too thank my noble friend Lord Sutherland for securing this deeply important debate. Noble Lords have referred to the importance of manpower planning and the need to consider the workforce. I would like to concentrate on the community and residential care aspect of this topic; to say a few tentative words on the training and status of workers with adults with dementia in residential care; and to reflect on the experience of current practice in residential childcare and how that might help inform us.
In residential childcare there has been a historic divergence with Continental practice. I am told that this took place some time after the Seebohm reforms. In Denmark and Germany the majority of the residential childcare workforce has more than two years of high-quality training before working in such settings. In Denmark the great majority has three years of high-quality training before working with children who are recovering from trauma either due to neglect or abuse.
In 1998, I am given to understand that of workers in this country working in residential settings with children with worse histories than those in Denmark and Germany, 80 per cent had no relevant qualification in what they were doing. So there is a historic divergence in practice between ourselves and the Continent. One remedy which was sought to be made to this in the 1990s was to train-up residential care workers in social work qualifications to ensure that they had CQSWs. It was found that once the residential childcare worker had a social work qualification he or she moved into social work as that was better remunerated and had a higher status. So, regrettably that initiative did not work.
The Government have recognised the problem in this area and have brought forward several important initiatives to improve the circumstances in these settings. Among those is a qualification at national vocational qualification level 3 in childcare for the whole of the workforce. That is an admirable aim and will help to remove those workers who have difficulty in writing and reading reports and in managing numbers. It also is very helpful in improving competency in a number of areas.
But NVQs do not appear to address the problem of status for social care workers in these settings. They can see that social workers now have a three-year degree in social work, whereas they are being given something very different. It is hard to see how they will be properly remunerated for the very challenging work they do unless they have a training which is somewhat more similar to that given to social workers in terms of its depth. I should just add that those studying NVQs are expected to study in their own time; they are not given paid time to do this necessary training.
Perhaps it is time that we gave more thought to a full-blooded dedicated residential care training. The training I am most familiar with is the Postgraduate Certificate in Education where trainee teachers have a placement in a school with which they develop a special relationship over a period of time. A very thorough grounding in theory runs in tandem with that over two years. That seems to be a very thorough and necessary grounding in this important profession.
In Iceland, I understand, there is training for prison staff. Your Lordships may feel that that is quite a jump. But prison staff also work in a residential setting, often with mentally disordered people who are difficult to manage. They serve a one-year probationary period in a prison and one year in a special college which includes a mock-up of a prison for practice. It is recognised that people in residential settings working in challenging situations need to be highly trained, very well prepared and given a good grounding. I regret that training for prison officers in this country is very far from that. I wonder whether we might try to be more ambitious in terms of the training for those who work in such settings.
On the Continent work with children is informed by the philosophy of pedagogy. That model has been around for more than 60 years. It is an holistic approach to bringing out the best in children and ensuring that the best practice is employed. In Denmark pedagogues—people trained in this theory—also work with elderly people because it is recognised that there are similarities between the needs of children as they grow into adulthood and what happens to adults as they sometimes enter their second childhood.
In conclusion, living and working with troubled children or elderly people who have some mental impairment is a special task, which is distinct from social work. It is immensely challenging. I have run workshops in the past with children with emotional behavioural difficulties. I have never done anything as challenging or as stressful since.
I was speaking to the manager of a children's home recently. It is quite run-of-the-mill for workers to be assaulted by the children because those children have experienced such damage in the past. The workers have to think on their feet all the time and be extremely strategic so that they can pre-empt this behaviour.
I am sure that there are great disjunctions between residential settings for children and residential settings for those adults we are discussing now, but I hope that the Minister will take the opportunity to look at current practice in residential childcare and see how that practice might benefit adults in residential care. Perhaps he might care to pay particular attention to what is happening in Scotland with the Scottish Institute for Residential Childcare which provides high quality free consultation and training to residential childcare establishments and really is a manifestation of the greater perhaps commitment of the assembly in Scotland towards residential childcare than we currently have in this country.
The National Children's Bureau is currently looking at the Scottish Institute to see how we might be able to develop such an institute in this country. We might also like to think about whether there may be an opportunity to develop a common workforce pool between those who care for children in residential settings and those who care for elderly people. One reason specific training for residential care staff has not been developed for children is that it was considered that there are not a sufficient number of residential care workers to make it viable. There is that possibility if we do not get the drugs that we hope we will get and do not manage to avoid increasing numbers of elderly people developing dementia in the future.
The right reverend Prelate the Bishop of Coventry, in his moving and illuminating speech, observed the need to think about the relational and spiritual sides of working with such people. I submit that, if staff in residential settings are to bear that in mind and to keep treating their clients not as patients but as people, they need to be highly trained, highly skilled and fit for such work.
My Lords, I, too, am very grateful to my noble friend Lord Sutherland for initiating this debate, in which we have heard a series of compelling and well-informed contributions. I, too, was much moved by the maiden speech of the right reverend Prelate the Bishop of Coventry.
The dementias are a group of physical organic diseases of the brain that are different in type, although the commonest is Alzheimer's disease. They result almost always in progressive disintegration of memory, intellect and personality. One form of dementia, less common than Alzheimer's disease, is fronto-temporal dementia; another, which the noble Baroness, Lady Finlay, mentioned, is Lewy body dementia, in which certain Lewy bodies are present throughout the brain, which is often, if not invariably, associated with Parkinson's disease. Then there is the relatively common form of vascular dementia or multi-infarct dementia, which commonly results from repeated minor strokes.
Over the years, there has been a great deal of diagnostic confusion as between Alzheimer's disease and vascular dementia. Regrettably, at the moment we do not have a single satisfactory diagnostic marker for Alzheimer's disease. That is crucial because, if one is to carry out research, upon which I shall concentrate in my remarks, it is important that one knows what disease one is treating at that time. There have been a number of suggestions relating to diagnostic markers. Under 10 per cent of cases of Alzheimer's disease are inherited, and three genes have been identified that are associated with those inherited forms of the condition, many of them of early onset. When I was a medical student I was taught that dementia developing before the age of 65—pre-senile dementia, as it was then called—was Alzheimer's disease, but that senile dementia was the disease that came on after 65. It is a very artificial barrier, but we now know that practically all of it is Alzheimer's disease and there is no age differentiation, except for the fact that some genetically determined forms of Alzheimer's disease are associated with early onset.
A marker has been identified called ApoE2, which is often associated with earlier forms of Alzheimer's disease; whereas a much commoner marker, called ApoE4, is more often associated with the late onset of Alzheimer's disease, which is sporadic and not inherited, therefore not genetically determined. Sadly, neither of those markers, which have been recognised for some years, is sufficiently accurate to give a totally accurate diagnosis. Even the most sophisticated psychometric testing, brain imaging and other methods still mean that we are only 85 to 90 per cent accurate in diagnosing Alzheimer's disease. We urgently need from research much more precise diagnostic information to help us to be certain with what we are dealing.
Many years ago, in Newcastle-upon-Tyne, I was associated with certain colleagues, a psychiatrist called Martin Roth, a geriatrician called Gary Blessed and a neuropathologist called Bernard Tomlinson, who carried out a number of very important pieces of research in which patients admitted for physical illness to geriatric wards volunteered to undergo psychometric testing and later made it clear in their wills that they wished their brains to be examined after death. They discovered during those investigations that the kind of problems that all of us encounter as we become older—difficulty in remembering proper names, known as benign senescent forgetfulness, or, if you prefer, benign cognitive impairment—was associated with increasing age and an increased concentration of structures called senile plaques in the brain. They measured the concentration of those senile plaques according to the number that they could find in a high-powered field under the microscope. But when the concentration of senile plaques became very much greater, one crossed the border into Alzheimer's disease. I shall return to the senile plaque in a moment, because it is crucial for future research.
At that time, biochemical studies were also carried out in which Perrys, in Newcastle, and Bowen and others, in London, took samples of brain obtained at post mortem and measured the concentration of acetylcholine in the brain. Acetylcholine is a common transmitter in the nervous system that conveys messages from one nerve ending to another. That substance is degraded by an enzyme called cholinesterase. They discovered in the Alzheimer brains a very low concentration of acetylcholine, hence they started by later trying to treat Alzheimer's disease by giving precursors of acetylcholine such as lecithin. But, as my noble friend Lady Finlay, has said, subsequent research demonstrated clearly that it was better to use drugs that blocked cholinesterase in order to allow the acetylcholine in the brain to persist for longer.
A generation of drugs, approved and recommended by the National Institute for Clinical Excellence, treats the disease in that way. One of those, donepezil, whose trade name is Aricept, has been shown in certain trials to help 30 to 40 per cent of patients with early Alzheimer's disease. There is evidence that sometimes it may even delay patients' need for long-term residential care for 18 months or so. It has therefore been very helpful. However, the problem is that the reduction in acetylcholine in the brain is not a primary cause of the disease; it is an epiphenomenon, so in a sense those drugs treat only the symptoms.
Pilot studies have been used in the treatment of Alzheimer's disease to test a series of things, such as oestrogens, vitamin E as an antioxidant and anti-inflammatory agents. Even more recently, there has been a suggestion that statins, which reduce the blood cholesterol, may have a beneficial effect. But larger trials of those types of treatment have proved on the whole to be ineffective.
A year or two ago, in the United States, a company called Elan Pharmaceuticals worked with transgenic mice that developed in their brains beta amyloid plaques, which are senile plaques identical to those seen in the examination of the brains of patients suffering from Alzheimer's disease. There is now clear evidence that the accumulation of beta amyloid in those plaques seems to be the primary cause of the degeneration that occurs in such patients. The company took beta amyloid peptide and mixed it with a substance known to stimulate the immune system. That was a kind of immunisation or vaccination against the Alzheimer phenomenon. In injecting that type of substance into the mice, researchers found a striking reduction in the number of amyloid plaques in their brains and considerable improvement in their memory tests, which were designed by animal psychologists.
Other research teams in St Louis and at the Johns Hopkins School of Medicine in Baltimore have also found evidence that antibody therapy can effectively slow the deposition of beta amyloid or even remove it from the brain. That is all extremely helpful. However, in 2002, preliminary trials in human subjects with Alzheimer's disease had to be terminated because of inflammatory complications that were, in certain instances, serious. But expectation remains high in the research community and in the National Institute on Aging at the National Institutes of Health—the NIH—in the United States that the immunisation approach may yet produce effective treatment for Alzheimer's disease. We are certainly learning more and more about the metabolism of the amyloid precursor protein and beta amyloid. There is every likelihood that the result of that and other research will improve the diagnostic tools that we have and should allow us to develop treatments for Alzheimer's disease.
This is an extremely encouraging field. I have not concentrated on care, but I must say in passing that, when I lived in Burford in the Cotswolds, there was an organisation called SPECAL, which was a joint initiative taken by the Alzheimer's Society, local social services and the NHS, through its primary care trust, which produced outstanding day care services for patients with Alzheimer's disease. I believe that that model has been copied in other parts of the country, and it makes a major contribution to care. The noble Lord, Lord Warner, will not therefore be surprised when, after talking about the research in the United States, I say to him that I hope that we will see a considerable development of research in the United Kingdom. I echo the views expressed by many other speakers about the crucial importance of the long-term care of patients in the terminal stages of the disease, medically and socially, in relieving the sometimes intolerable burden on the families and carers, as the noble Baroness, Lady Pitkeathley, and others have said.
My Lords, I too thank the noble Lord, Lord Sutherland of Houndwood, for initiating this debate. It has been remarkable in many ways, and there have been outstanding contributions, not least that of the right reverend Prelate the Bishop of Coventry. His speech was moving and insightful, and it will stay with many of us who heard it for a long time. I welcome him warmly and look forward to his contributions in your Lordships' House.
Among all those distinguished contributions, it is important to start with the growing consciousness in society of the existence of Alzheimer's disease. It came home to me in the past few weeks. In the past six weeks, the world of football has lost Bob Stokoe and Ally MacLeod, both distinguished in their field and in their country, to dementia-related illness. However, I say to the noble Lord, Lord Sutherland of Houndwood, as a Scot, that perhaps one of the biggest losses in the past few weeks has been the comedian Rikki Fulton, a man beloved by all Scots for his outstanding ability to provide a comic take on our lives with his wonderful characters—the Reverend I M Jolly lives in the heart of most Scots people. Rikki died about four weeks ago, having had Alzheimer's for the past couple of years. We miss him.
Other speakers talked about the incidence of dementia in a population that, for good reasons, is becoming more long-lived. One of the many consequences is that the population of those who have dementia and those who care for them is becoming increasingly diverse. That too is interesting. The noble Lord, Lord Chan, spoke eloquently about the black and ethnic communities, in which dementia is becoming a significant issue for the first time. He pointed strongly to the need for carers from this country and this culture to begin to learn about the cultural differences, so that care for such people is of a sufficiently high standard.
I take the opportunity to congratulate the Alzheimer's Society's lesbian and gay carers' project on securing funding from Comic Relief to enable it to run a helpline and develop support systems for carers and training for professionals. Your Lordships should think about what it would be like to be a carer and go through all the things that the noble Baroness, Lady Pitkeathley, talked about but not to be recognised and to be treated as somebody's brother or a distant relative of the person for whom you care. That must cause double hurt and trauma.
Perhaps inevitably, today's debate will focus our minds on the practicalities of caring, but I want to say quite strongly something that nobody else, I think, has focused on: dementia is not an inevitable part of ageing. We must never allow people to think so. For those for whom it is part of ageing, the biggest problem by far is gaining access to appropriate and timely care. The Government's policy on the funding of personal care and of continuing NHS care, which has been talked about by several speakers, has unintended consequences that are quite harmful to the care offered to people and to the carers. The current policy on the funding of care that takes place in hospital is dangerous. Those of us who sat through proceedings on the Community Care (Delayed Discharges etc.) Bill heard repeatedly from Ministers that hospitals were dangerous places for older people. They are full of infections such as MRSA, and we know that people with dementia are particularly susceptible to such infections.
Furthermore, it may be that, for many people, care is better when it is delivered in other settings. The right reverend Prelate talked a lot about care in care homes and the added dimensions to that. I heard recently about some research being conducted at the University of Kent that shows that, as the noble Lord, Lord Walton of Detchant, told us, it is possible to detect different chemical reactions in people's bodies. I cannot begin to use the terminology that the noble Lord used, but the research in Canterbury showed that singing brought about responses in people that were detectable in the chemicals in their body. I am certain that the right reverend Prelate is right: singing hymns has a beneficial effect. However, hospitals are not the place to do it, and busy nursing staff cannot go to such a level of detail.
The ombudsman has ruled that the NHS continuing care criteria and the way in which they are selectively and restrictively applied throughout the country are having a detrimental effect on carers. The department has consistently said that it has no plans to alter the guidance that it issues to strategic health authorities; yet, we had another demonstration in the past few weeks of how confusing the guidance is. How many ombudsman's reports must there be, before we get clear guidance from the department about NHS continuing care rulings? How many carers are having their case reassessed? Welcome as those re-assessments are, there is still a lack of clarity about eligibility. Will the reassessments be completed by March 2004? Will the many cases of people who live at home and wish to be cared for at home be fully funded, as a consequence of the ombudsman's ruling that care that takes place at home can be? Can the Minister also say how many strategic health authorities will have their criteria and assessment tools changed in accordance with the new standards as set out by the ombudsman by April 2004, as they are supposed to do?
I am extremely pleased with one particular part of the ombudsman's ruling; namely, that the psychological needs of people with Alzheimer's should be taken into account. That is something which has been wholly overlooked in the past. It hit home with me when a young man that I know of developed dementia at a very young age. He had been a psychiatric nurse and had nursed people with dementia. His wife wanted to care for him at home during the day. The professionals insisted that he should go to a day centre, which was on the second floor of a hospital block. The man used to walk around all day screaming. It was not until he opened a window and climbed down a drainpipe that the staff finally got the message that he wanted to be at home. He did not want to be there.
The noble Baroness, Lady Pitkeathley, is right. Professionals should receive training to understand that the needs of carers can be the same as—not in opposition to— the needs of those for whom they care. That is fundamental to good care and care that helps the psychological well being of those concerned.
Finally, there is much in our residential care sector that is good and should be encouraged. As we know, there is also residential and nursing care that is of an unacceptably low level. I point noble Lords to the work done by my honourable friend in another place, Mr Paul Burstow, about the over-prescription of neuroleptic drugs in order to keep older people with challenging behaviour quiet rather than to address the causes of their distress.
But most care home owners are extremely good and care for the people that live with them. Many care home owners have residents who are of much greater levels of dependency than their homes are registered for. That is for a very benign reason: that place is that person's home. The owners do not want them to move, nor do the people want to move. We should recognise that the number of dementia care places that there are in reality is well in excess of those in the statistics. They are just not recognised as such.
We ought to move towards a situation where we are not trying to fit people with Alzheimer's and other forms of dementia into increasingly scarce care places. I believe that we ought to train not just specialist mental health staff, but all staff—dentists, podiatrists, community nurses—working in the community, who enable carers and people with Alzheimer's to continue living in the community to do so. It is time that dementia care stopped being such a rarefied speciality and became a more general part of general medicine and community medicine.
The recent ombudsman's ruling takes away yet another of the straws that is holding up the Government's policy on NHS continuing care and personal care. The noble Lord, Lord Sutherland, is right. Until such time as the questions of good nursing care, who funds it and where are sorted out, people with Alzheimer's and their carers will continue living lives full of unnecessary uncertainty and sometimes unnecessary cruelty from a system that really should care for them much better.
My Lords, I often feel that the essence of a good debate is that those who participate should come away at the end feeling enlightened by the contributions of others and hopeful that the occasion may in some small way at least prove a force for good. I believe that we may say just that about the debate today, which I, for one, have found immensely informative and valuable. Our thanks are certainly due to the noble Lord, Lord Sutherland, for introducing the debate so ably, and for the many excellent contributions that followed, not least, the most uplifting speech made by the right reverent Prelate the Bishop of Coventry.
The language of 21st century healthcare is the language of choice and of patient empowerment. Those who are afflicted with dementia or Alzheimer's progress to a state in which personal empowerment is meaningless, which is why the test of good care for dementia patients is surely the degree to which they benefit from those things that we imagine they would have chosen for themselves had they been able to do so, perhaps the chief of which, at a human level, is simple kindness.
In terms of policy making, governments and societies are to be judged by the way that they look after those least able to look after themselves. It is that overarching thought that should, I suggest, guide us as we approach the subject of this debate. Whatever the numbers involved, the principle is the same. But the numbers are nevertheless sobering—750,000 people in the UK suffer from dementia, including one in five people over the age of 80. Unfortunately, those numbers will not get any smaller. We are looking, therefore, at a major area of health and social care policy.
Yet, despite that, if I, as a close relative of someone with dementia, wish to try to exercise choice on behalf of that person, I will find that the dice are loaded against me in a whole variety of ways. To echo the noble Baroness, Lady Finlay, for a start, without the mental incapacity legislation that the Government have promised, I can have no legal right to take any decision on behalf of my relation or even to be consulted about such decisions. In practice, of course, it is likely that I would be consulted. But what about an elderly person with no close family? We can see how important it is that someone in that position should be given the opportunity to appoint an advocate for them—a carer or, perhaps, a friend.
The significance of giving someone the legal right to represent you when you are no longer capable of taking decisions for yourself is perhaps most obvious when it comes to making a choice about the right care setting. The Alzheimer's Disease Society tell us that the type of care and support provided to a patient with dementia can have a huge impact on his or her quality of life. For those who need a residential setting, with staff who are properly trained in the care of dementia, the choice is in truth extremely limited. Although as many as three-quarters of all people in long-term care have dementia, only about 10 per cent of care staff will have any training in it.
A survey of residential and nursing homes three years ago found that not a single home surveyed showed even a fair standard of care for people with dementia. As I understand it, the official rule is that only homes registered to do so can accept residents with Alzheimer's, although one must suspect that this may be a rule honoured more in the breach than in the observance. It is no surprise that many people face a long delay in accessing a suitable care home or else are forced to move to one which is a long way from their closest family. As I researched for this debate, I found myself in increasing sympathy with the position taken by the Alzheimer's Disease Society, and echoed in large measure by the noble Earl, Lord Listowel; that national minimum standards for care homes need to evolve to include requirements for training which focus directly on the needs of individual groups of patients.
The avoidable disaster that has taken place over the seven years of the present Government is what has happened to the care home industry. At a time when demand for residential care is growing, we have seen a contraction of 70,000 in the number of care home beds since 1997, equivalent to 13 per cent of capacity. Of course the situation is not the same in all areas of the country, as the noble Lord, Lord Sutherland, reminded us. But the south of England has been particularly hard hit.
The closure of care homes is not attributable to a single cause, but there is absolutely no doubt that the over-prescriptive nature of the original set of national minimum standards introduced under the Care Standards Act 2000 forced closure on to many homes whose owners realised that they could not or could not afford to undertake the kinds of building alterations which the standards looked likely to impose on them. In the event, the Government performed a U-turn on some of the most prescriptive of the standards for existing homes, exempting existing care homes from their scope, something for which I for one had been arguing consistently, but that was not before many hundreds of care home owners had taken fright and closed down.
All of us are in favour of higher standards—how could we not be?—but the risk that you run by adopting a tape-measure approach to standard setting is that you lose sight of the things that really matter to an elderly person. That is the quality of care—in other words, the intangible quality of "TLC" that they receive. If the result of standard setting is the forced closure of homes, I am afraid there can be only one consequence, which is that vulnerable residents will find their lives disrupted. In some cases that disruption is enough to precipitate death, a danger that the Government have themselves recognised.
I hope and believe that the care home sector has now stabilised, but clearly there is much more to do. If you look at the number of care home places per 100 people over the age of 65, the average across the country is 5.7. However, in the northern home counties, including my own, Buckinghamshire, the supply ratio is 4.6, while in London it is 3.8—a dangerously low level and a full one-third lower than the national average. The alarming prediction at present is that overall demand for care home places will outstrip supply by next year.
So, even in a matter like the choice of a care home, the dice are loaded against the dementia patient. But the dice are similarly loaded when it comes, as we have heard, to a patient's entitlement to free care. The Coughlan judgment, which gave rise to the Department of Health guidance of 1999, appeared at the time to signal the beginning of greater clarity on the question of who was eligible for free nursing care in nursing homes, particularly in relation to the chronically ill. What we found, though, was that some local authorities were misinterpreting the Department of Health guidance so as to deny free nursing care to those who were apparently entitled to it. A year ago the health service ombudsman reported precisely to that effect.
Last month the ombudsman reported again on the case of Malcolm Pointon, a man with Alzheimer's disease whose care at home the local PCT had refused to fund fully. She agreed that Mr Pointon's case should have been classed as NHS continuing care and said that in making a decision of this kind a person's psychological needs should be recognised. There is an obvious message here for residential homes as well as dementia patients looked after at home, and I think we must ask the Government whether the misapplication of the DoH guidelines which gave rise to the Pointon case, as well as others, is something that they will now look into. I am in no doubt that some local authorities have moved heaven and earth to avoid their financial responsibilities towards dementia patients. My noble friend Lady Chalker has spoken to me about one particularly appalling case in Southend-on-Sea of a sectioned man whose need for residential nursing care has been emphatically confirmed by a mental health review tribunal, but who is being denied that care by the local authority.
It is the view of the Alzheimer's Society that people with dementia are effectively being discriminated against by the NHS because few sufferers meet the NHS continuing care criteria as set by the Coughlan judgment. What is certainly true is that the postcode lottery is alive and kicking in this area. Standard 2 of the National Service Framework for Older People, which called for a single, nationwide assessment process to decide who is eligible for free NHS continuing care, has been with us for almost two years, but the Alzheimer's Society is no less worried than before that the assessment process varies according to where you live.
The difficulty in many areas is what is commonly known as "system bias". The ombudsman stated in her earlier report that the distinction between nursing care and social care can easily become blurred. In particular there is an increasing trend for nurses to provide services that would previously have been offered only by doctors, and for care assistants to take on roles previously reserved for registered nurses. Care provided by care assistants does not at present qualify for free NHS continuing care. A decade ago, similar care might have had to be offered by registered nurses.
There is some evidence that this system bias has led to an increasing proportion of the elderly paying for their residential care. Since 1997 the number of older people paying their own fees has increased by 20 per cent. Personally, I do not think that there should be any argument. Care provided by trained care staff who specialise in providing nursing care to dementia sufferers should qualify as nursing care. To do anything else looks like splitting hairs simply in order to shield the taxpayer.
I have not mentioned medication, but I hope that the Minister will say something when he comes to speak about the postcode lottery that continues in the prescribing of Aricept, Exelon and Reminyl, and the critical need for early diagnosis of Alzheimer's disease to enable these drugs to be used to maximum advantage. The same applies to the newer drug, Ebixa, which is licensed for moderate to severe Alzheimer's disease. There is an unacceptable variation across the country in the availability of these treatments which, I believe, only the appointment of more specialists is likely to ameliorate.
Like other noble Lords, I pay tribute to the work of carers, which is always difficult, usually unsung and unremunerated, and which enables thousands of dementia sufferers to remain looked after in their own homes, sometimes for many years. It is in that context especially that the value of the licensed anti-dementia drugs is most keenly felt.
As we work towards higher standards, the empowerment of patients and carers, better treatments and better training, I hope that the ideal for the care of these most vulnerable individuals articulated by all speakers in this debate is indeed within our grasp.
My Lords, along with other noble Lords I am grateful to the noble Lord, Lord Sutherland, for giving us an opportunity to discuss this important topic. I am grateful too for his recognition of the increased investment into care of the elderly that the Government have made. I join him and others in paying tribute to the work of the Alzheimer's Society. In fact, its new chief executive used to work for me, which may totally destroy his public reputation, of course.
I also pay tribute to the moving and thoughtful maiden speech of the right reverend Prelate the Bishop of Coventry. We look forward to his further contributions in this House. I agree with the noble Earl, Lord Howe, that the debate has been informative and a force for good.
As noble Lords have said, there are probably around 700,000 people in the United Kingdom with dementia requiring care and support. By 2050, that number will have grown to around 1.2 million. The noble Baroness, Lady Greengross, illustrated the incentive this provides all of us to try to reduce the growth in that rate and its impact on services. Although in many instances support comes from family and friends—I shall return to that later—a great deal is provided by the statutory and voluntary sectors.
The first point I should like to address is one that was raised by a number of noble Lords concerning the capacity of the care home sector. The Laing & Buisson Care of Elderly People market survey, published in July 2003, put the national bed capacity in care homes from all sectors at 470,000, with demand estimated to be around 460,000. The survey also indicated that homes are closing at a slower rate than in either of the previous two years. We accept, as a number of noble Lords pointed out, that there are parts of the country where homes have closed in such numbers that a person's choice of care home is severely limited, and that there are local shortages and problems to be addressed. But I do not believe that this is a national crisis.
Estimates of the number of people with dementia in care homes are, we acknowledge, as high as two-thirds. That is why many councils have increased, or are looking to increase, their commissioning of specialist provision for people with dementia.
A number of noble Lords have raised issues in regard to medication. Although the care of older people relies on a complex arrangement of services across a range of settings, of particular importance to the treatment of those with dementia is the use of medication. The treatment of those with behavioural problems requires very careful consideration and planning. As the noble Lord, Lord Walton, and the noble Baroness, Lady Finlay, have reminded us, the disease classifications in this area can be extremely difficult.
Concern has been expressed in the past about inappropriate and over-prescribing of new atypical antipsychotic drugs for people with dementia, especially those older people in care homes. These new drugs can be an effective way of managing a range of conditions. However, it is important that they are used appropriately and as part of a wider package of care that, where possible, includes non-pharmacological interventions.
Yesterday, the Committee on the Safety of Medicines recommended that the use of two atypical antipsychotic drugs—Risperidone and Olanzapine—be avoided in the treatment of patients with dementia because of an increased risk of strokes. These drugs are not licensed for the treatment of patients with dementia. I hope this will be seen as an opportunity for local clinicians and care managers to look again at the range of treatments available for treating those with dementia, with a view to ensuring that the most appropriate and beneficial services are delivered.
The pharmacological treatment of dementia has been the subject of work conducted by the National Institute for Clinical Excellence, as the noble Baroness, Lady Finlay, and other noble Lords have said. NICE has already produced guidelines on the use of anti-dementia drugs and is currently in the process of producing further guidance on all aspects of treating patients with dementia.
I acknowledge to the noble Earl, Lord Howe, that there have been variations in implementing NICE guidance but, as I have said in public before, we are on the case in this area; improvements are being made; and all SHAs are trying to monitor the progress made by PCTs in the application of NICE guidance.
Turning to the planning and performance management of the system, the development of the right services, in the right place and at the right time, is important if those with dementia are to get the care they need. Central to service improvement is the National Service Framework for Older People, launched three years ago. It is important to emphasise that this framework is a 10-year plan—it is not a two-year or three-year plan but a 10-year plan—and it contains a standard dedicated to the improvement of mental health services for older people.
The Priorities and Planning Framework for 2003–06 requires protocols to be in place across all health and social care systems by April 2004 to develop and provide integrated services for the care and management of older people with mental health problems. New performance indicators are being established to measure progress and the Commission for Health Audit and Inspection will this year complete an inspection of these services as part of the wider National Service Framework for Older People inspection.
I turn to the issue of research, to which a number of noble Lords, including the noble Lord, Lord Walton, and the noble Baronesses, Lady Finlay and Lady Greengross, referred. I agree that we have to do all we can to support research in this area. During the past few years, the Government have organised nearly £40 million of research on dementia via the Medical Research Council and the NHS Policy Research Programme. We need to be optimistic about this research investment, as the noble Lord, Lord Sutherland, and others have indicated.
I am grateful to the noble Baroness, Lady Greengross, for her information about the cognitive vitality of the benefits of bingo. I shall certainly pass on this information to my 87 year-old mother, who is an avid fan.
I turn now to the workforce issues, which have been raised by a number of noble Lords. Having the best services in place for people with dementia relies on an appropriate workforce. I recognise that there is a journey to travel in this area, as a number of noble Lords have mentioned. The department has convened an Older People Care Group workforce team to consider anew the workforce and training needs of those working with older people. This approach brings together a wide range of people. The workforce team has also established a subgroup to look particularly at dementia services.
We need more flexibility and there is much to be done, as a number of noble Lords have suggested, but there are some gleams of light such as the Croydon memory service, which is a one-stop shop for people of different ages with memory problems. Assessments can be done either by health or social workers and there is good access for people from ethnic minority backgrounds.
A number of noble Lords touched on the issue of carers. But professional care and support in this country is only one side of the coin. The majority of people with dementia are cared for at home, which can be a very demanding and exhausting task for their carers. I share the concern of all noble Lords that we recognise the contribution and altruism of carers and what they do in very difficult circumstances.
As the noble Baroness, Lady Pitkeathley, mentioned, the Government have done more to recognise the contribution and concerns of carers. We developed the national carers strategy in 1999 with carers and the organisations which represent them. I should like to pay tribute to the work that my noble friend Lady Pitkeathley has contributed to the area of carers over a long period of time.
A carers grant was introduced in 1999 to support councils in providing breaks and services for carers in England. The grant has been increased annually and has provided an extra £225 million over the past four years. It is worth £100 million this year and by 2005–06 it will be £185 million, helping an additional 130,000 carers. Councils will be able to use the money to give carers help with taking a break from caring and also to give them ongoing support with caring.
A number of noble Lords raised the issue of personal care. All the initiatives we are taking to improve services for those with dementia and their carers are based on making services more person centred, and we believe that better choice and better services are beginning to be provided. It is worth quoting here from the National Service Framework for Older People in Standard Two:
"Older people and their carers should receive person-centred care and services which respect them as individuals and which are arranged around their needs".
"recognise individual differences and specific needs . . . including cultural and religious differences".
I hope that this reassures the noble Lord, Lord Chan, and the right reverend Prelate to some extent, but I recognise that we need to do more to make services accessible to ethnic minority older people.
As to the issue of race equality schemes, which was raised by the noble Lord, Lord Chan, we have launched a 10-point plan to ensure that black and ethnic minority groups are equally represented at all levels of the NHS. Trevor Phillips, chairman of the Commission for Racial Equality, is chairing the group that will be working on this issue.
Many, including the noble Lord, Lord Sutherland, feel that to offer truly person-centred services we must make all personal care free. We respect those views, but the Government have taken a different view and do not accept that this is a flaw at the heart of their policy. In their response to the Royal Commission on Long Term Care, which was chaired in such a distinguished manner by the noble Lord, Lord Sutherland, and which formed part of the NHS Plan, the Government stressed that free personal care for everyone would be costly, would not be guaranteed to lead to service improvements and would not help the poorest members of society.
Making personal care free for everyone carries a substantial cost, both now and in the future. It would consume most of the additional resources being made available for older people. We believe that the funding available should be used to help promote the independence of all older people. Free personal care for all would not achieve this. It would be difficult to distinguish between elderly people with different conditions.
At the moment, seven out of 10 older care home residents already have some or all of their personal care costs paid by their local council. If all additional money for older people were to be used to provide personal care to the rest of the older population, the frailer and poorer members of society—those in most need—would not benefit.
In July 2002, the then Secretary of State for Health, Alan Milburn, announced a wide-ranging package of measures radically to reform services for older people. By 2006, compared with the resources available today, another £1 billion a year will be spent on social services for older people. The package focuses on six main themes: faster assessment; stabilising the care home sector, which I have talked about; expanding the range of services; easier access to free community equipment; increased choices for older people; and more support for carers. All these services are of great relevance to older people with dementia.
With regard to intermediate care, this will build on the development of intermediate care services, heralded in the NHS Plan and funded to the tune of £900 million. Intermediate care is crucial to the care of all older people as it promotes care close to one's home—in one's home, wherever possible. Hospitalisation for older people can lead to institutionalisation, and loss of independence and dignity. Older people prefer to be cared for at home. We aim to ensure through the initiatives outlined that they are able to exercise this choice.
A number of noble Lords, particularly the noble Baroness, Lady Barker, raised issues relating to ombudsman cases. The noble Baroness asked about progress on continuing care, and the pros and cons of guidance following the Health Service Ombudsman's judgment in the Coughlan case. Since publication of the report in February 2003, good progress has been made in investigating cases in which people may have been wrongly denied continuing care in the past.
I reiterate that the care people with Alzheimer's or any other condition receive from social services or the NHS should be determined by the assessed needs of each individual. That has consistently been the Government's policy. It is not, therefore, possible to say that in all cases, in any particular setting, all care will be provided either by the NHS or social services. However, the existing guidance, issued in the summer of 2001 in response to the Coughlan judgment, made it clear that,
"the setting of care should not be the sole or main determinant of eligibility. Continuing NHS health care does not have to be provided in an NHS hospital and could be provided in a nursing home, hospice, or the individual's own home".
It seems clear that continuing care may be provided in the home.
The same guidance also discusses the various aspects of eligibility criteria, including that,
"the individual has a rapidly deteriorating or unstable medical, physical or mental health condition" and may require support from the NHS. Again, the guidance seems to cover the issue the noble Baroness raised.
On current activity in response to that ombudsman's report, all SHAs—strategic health authorities—are fully engaged in investigating cases of possible recompense brought to their attention. Strategic health authorities are expecting to complete the majority of cases and the changes needed by the end of the March 2004 deadline. All 28 strategic health authorities agreed new criteria for continuing care last autumn.
There is also a current review of continuing care in progress across nine strategic health authorities. We will consider new guidance in the light of that review.
The noble Baroness, Lady Barker, and the noble Earl, Lord Howe, alluded to the recent ombudsman case involving Mr Pointon. I do not want to comment in detail on this particular case in Cambridgeshire, but it has been referred to as a test case. However, it is a decision of the ombudsman in relation to the care of one individual. The ombudsman has said, very helpfully, and has been at pains to make it clear, that it is an individual case. In these cases, each individual should receive care following appropriate assessment, with services shaped around the needs of the individual, as the recent White Paper on choice and responsiveness in the NHS emphasised. That was the finding of the ombudsman, and that is what we are trying to ensure applies in these sorts of cases.
We have also required all strategic health authorities to agree new eligibility criteria for continuing care which, as I have said, they have done.
The noble Earl also mentioned the mental incapacity Bill. The Department for Constitutional Affairs has the lead on this; the draft Bill was published in the summer of 2003, and a report of the Joint Scrutiny Committee has, I believe, just been published.
In conclusion, let me say that older people with dementia need and deserve better services. The Government have set in place a number of initiatives to try to ensure that that happens. More money than ever before is being invested in older people's services. As well as the additional funding for intermediate care services and the extra £1 billion a year for social services by 2006 already mentioned, older people will benefit from the record allocations to primary care trusts announced in December 2002: £148.3 billion for 2003–04 to 2005–06—a cash increase of more than 30 per cent in the total allocation. A very considerable proportion of that will go to services for older people.
Many good local services are now developing, but we are not complacent. We must ensure that the personal needs and choices of older people and their carers are central to the services they receive, that they are able to play as full a part as possible in society and that they have their dignity and cultural differences respected and their independence protected as much as possible.
My Lords, I thank the noble Lord, Lord Warner, for his comprehensive reply to the matters raised in the debate. It seemed to me a reply characterised by two things, the first being a sense of engagement with reality. These are very complex issues, and that came through in the way in which he responded to the points we raised. Secondly, as a response, I am happy to say that it left me room to continue to disagree with the Government on one or two issues, and I appreciate that too.
I thank all those who took part in the debate. It is always a revelation, in a debate such as this, to see the cornucopia of cumulative wisdom and experience in this House that appears when the topic is raised and the button is pressed. I congratulate the right reverend Prelate the Bishop of Coventry on a very finely targeted and clearly focused maiden speech. We look forward to his further contributions to debate.
I am tempted to invite your Lordships to join me in a game of bingo, but I shall not. Instead, I beg leave to withdraw the Motion.