My Lords, the average age of Peers in this House is 68, so I can tell noble Lords here today with some confidence that one third of us will die with dementia. It is us next. Dementia is the most feared illness of all. The writer AA Gill memorably described it recently as,
“the unspeakable plague of our medically privileged generation”.
Dementia is dying of the self, bit by bit. Not just memories go—indeed, that is often the easiest thing to cope with—but our speech, emotions, ability to reason, to retain social relationships and to participate in life; they all desert us.
I should declare my interest at this point. I am a psychiatrist, and for 25 years was professor of old age psychiatry at the University of London. That is a rather grand title but actually, much of my work was as a jobbing community psychiatrist for older people living in Lewisham and Southwark, working with the local authorities for patients and their families. Half of all my patients had one of the variants of dementia. I will spare noble Lords my well honed lecture on 150 different causes of dementia and, indeed, most of the facts and figures. Those I see around me here today are too well informed to need me to do this. I am also proud to be a vice-president of the Alzheimer’s Society, which has done so much in these past 25 years to bring this dreadful disorder into the sunlight.
When I was younger, I was often asked why I chose this field, which carried so much stigma for those who undertake it as well as the sufferers. Of course, one’s personal motivations are never straightforward, but mine owed much to growing up at home with my grandmother, who developed dementia in her mid-80s, and gradually becoming aware of the terrible stress that that imposed on my parents. Later I came under the influence of one of the truly great visionaries of his medical generation, Tom Arie, whose influence on service developments for older people, both here and abroad, has been remarkable. He taught me the fun, the fascination, the extraordinary personal rewards, that come from working in a highly professional multidisciplinary service with patients and their families.
The National Dementia Strategy has the potential to be one of this Government’s triumphs. It is a splendid piece of work, achieved under the excellent leadership of Professor Sube Banerjee and Jenny Owen, to whom I pay tribute. Its provisions are comprehensive and it is all good stuff. I do, however, worry about the £150 million notionally allocated from central funds to support its implementation; it will not be ring- fenced by primary care trusts, so we can assume that in some places even this small amount of pump-priming money will be rapidly diverted elsewhere the minute the expected NHS period of austerity begins to bite. How do the Government intend to monitor the spending and the progress of the implementation of the strategy?
There is still precious little understanding by health and social care services of the impact of dementia on families or on the economy. The £17 billion spent annually is the direct costs of care on those already diagnosed. Well over 80 per cent of the money spent on adult social care is spent on people with dementia, although most local authorities do not seem to have twigged this yet. We even waste £200 million or so in acute hospitals on inappropriate care.
If we are to begin to get services in to help families in the early stages, then diagnosis is the key, as the strategy recognises. Like any other neurodegenerative disease, dementia and its clinical precursor, cognitive decline, need to be diagnosed and treated. I used to rage at the NHS and local authority services which said my patients must be “assessed”, going direct for a social care package, when everyone else got a diagnosis for care and treatment. This does not happen to people with Parkinson's and motor neurone disease. Too often, people with this catastrophic disorder have been dismissed as a social problem to be tidied up. About half of all people with dementia will not get a diagnosis and there are some very perverse reasons for this.
The first is straight ageism—a false belief that dementia is senility, and that senility and ageing are synonymous. It is worth reminding ourselves that even at 95 you have a better than evens chance of being mentally fully intact, and the good news for the real stayers is that at 100, the odds are even slightly better. That is the survival effect. But one major disincentive to a written diagnosis is the funding arrangements for care. In theory, you cannot go into an ordinary care home if you have a label of Alzheimer's or one of the other named dementias. You can go in with “a little bit of memory impairment” and a smidgen of cognitive decline. So of course, we professionals pretend. But in reality no older person now goes into care unless they have serious cognitive impairment and dementia; we just call it by a euphemism.
If you have a nasty label such as Alzheimer's, you are supposed to go to an expensive EMI home rather than an ordinary one, which is probably of no better quality than an ordinary care home, and quite often worse. The family does not want that, the hospital waiting for a discharge will not want that and the local authority certainly will not pay the extra. We need to be honest about it and we will not be until the Government sort out this funding problem.
Dementia is a terminal illness—patients survive only two to three years in their final care home. Homes are, in effect, providing end-of-life care for patients with a neurological disease the way hospices provide care for terminally ill cancer patients. The difference is that you get hospice or hospital care free but if you have dementia you have to pay for your own care until your money has more or less run out. This is what the Alzheimer’s Society has called the “dementia tax”. For care at home, 26 per cent pay for it all themselves; another 42 per cent pay a significant proportion. More than half of those in residential care pay more than £300 a week towards the costs of being cared for. Can you imagine the outcry if the Government decided to charge hospital patients that amount?
I have never campaigned for social care to be provided free out of current taxation. I think rather it would be better if all health and social care was provided on a level playing field, with a mixture of state and personal investment. I am a fan of the minority report by the noble Lords, Lord Lipsey and Lord Joffe, on the Royal Commission on Long Term Care and very attracted to Sir Derek Wanless’s analysis, Securing Good Care for Older People, published in 2006. We still wait with bated breath for the social care Green Paper—I believe it is expected any day now. I hear a rumour about next Tuesday, but it had better be good as social care is in meltdown out there. There are so few services, and often of such poor quality, that these new dementia advisers, described so well in the strategy, are going to have a very thin time trying to put a package together. Some of the NHS and local authority commissioning practices have been disgraceful.
Joan Bakewell recently commented in the Times on the online e-auction system of tendering care for older people with dementia. Costs are driven down to rock bottom, meaning that authorities accept levels of care we would not tolerate in a well-run zoo. She is right. These were her words, not mine.
The training of both domiciliary and residential care staff is almost non-existent. They have no idea how to manage behavioural problems. We have a high turn-over of transient, migrant staff who often barely speak a word of colloquial English. It is time we insisted that staff learn to speak fluent English. It is time we learnt to value them too. Staff are extraordinarily poorly paid at minimum wage levels; we simply do not value sufficiently the vital work they do. The lives of the residents are often starkly empty as a result of this.
Once a person is in care they get less access to healthcare than at home—less nursing, less physio, less speech therapy, less chiropody, less doctoring, less mental health nursing. Often the primary care trust feels they do not need to access community health services because they are somehow being paid for as part of the private care package. Authorities pay far more for similar residential care for younger adults with disabilities. This is straight age discrimination and perhaps we will need to challenge this under the new equality legislation.
I know that after this speech I shall be inundated with letters from care homes proud of the quality of their care. It is true there are some reasonable ones but they are a minority and I would guess that there are many noble Lords here today who have tried to find a suitable care home for their own parents, only to be disappointed and disheartened by the quality of what they saw around them. Training is vital. Has the Minister had an opportunity to read the report of the All-Party Parliamentary Group on Dementia on training needs called Prepared to Care? That seems to me to be a good start on training requirements but we have to solve the workforce issue.
Turning to research, the Government are holding a summit in July with the great and the good, academics and funders, to talk about possibly having a plan. I hope it is a plan for a proper strategy for research development. There is more money than ever before in research programmes into the science of the dementias, about £32 million, but the Government invest eight times less in dementia research than cancer research and similarly less than in cardiovascular disease, even though economically, and tragically for families, the impact of dementia is greater. Furthermore, they do not invest in a long-term predictable way, but in sporadic bursts when pushed. How can the Government continue to justify that, given the economic and personal impact of this disease?
We have a science base in the UK that is world beating. All bar one of the genes that have been discovered to be predictors of the familial types of dementias have been discovered here in the UK. Here, we get far better bangs for our bucks investing in basic molecular science, and better quality outcomes for smaller investment, than does the United States. The NHS is well organised to do clinical research in this country and we also have university departments of social research that are set up to do the research—if only they could get the research funds.
Almost all the research undertaken at present is on the smallish younger groups of people: it is not focused on the everyday, common stages of dementia. We have no idea how that research will translate to older people. Of course, I should like to have a poly pill that we could all take at 40 that would prevent us developing this disorder, but the problem is that dementia and ageing are closely associated. There is no escaping the fact that one is 25 times more likely to develop it at 90 than at 60. It is likely that decreasing the risk of dementia with prevention strategies will lead to an increased ageing population and therefore the survival of the later cohort of dementia sufferers. Of course, it is very much worthwhile making it later, but the results of successful early treatment and prevention are not as clear as one would like on a population basis.
The Alzheimer's Research Trust, which provides something like £4.5 million of research money, and the Alzheimer's Society, which also provides some money for research, have talked together about how to pool their research-promoting energies. I hope that they will continue to talk because working together on this strategy would be helpful. Can the Minister assure us that the forthcoming summit will lead to a proper strategy for promoting research in this field?
I am greatly looking forward to the contributions of other noble Lords here today and have said quite enough, but I should like to end with my grandmother, Elizabeth Lawson. She was born a Geordie girl and was a key person for me as I was growing up. She told me wonderful stories of her dancing party days in Gateshead and sang Geordie songs, which I still remember. She confided to me that her first love, a soldier, died of typhus on the boat coming home from the Boer War, so you can guess what age she was born in. She later married my taciturn and brainy grandfather, who was a colliery engineer, who brought her south to Nottingham, where he joined the then brand-new Clifton Colliery and she raised a family.
On the whole, I think it was a good life, but after being widowed, my parents cared for her for many years as she developed dementia. She died—I was amazed to find this morning that it was 40 years ago—in an anonymous ghastly long-stay ward in Sherwood Hospital—a former workhouse infirmary—where regimented beds were so close together there was scarcely room to stand between them. It was such a horrible place that her son, my father, found it almost too distressing to visit.
Sherwood Hospital later became a superb example of really good care, curiously enough under the care of Professor Tom Arie, my mentor. But how much have we really improved the chances of good care in the community of a kind that we can all be proud of, which is not stigmatising? This strategy had better work, because it really is us next.
My Lords, it is a great pleasure and honour to follow the noble Baroness, Lady Murphy, and I congratulate her on securing this important debate. The House is indeed fortunate to have someone with her expertise and experience.
We are all living longer and that is good news. We are living in a world where one in four children born today will live to get their 100th birthday telegram from the monarch: I wonder if the Queen will have to rethink the number of telegrams she sends. In 2007, for the first time in this country, pensioners outnumbered children, and within 20 years, more than half of us will be over 50.This change in society is a great challenge but also a great opportunity. It is a cause for celebration that we have the chance to live longer, a time to take advantage of a range of prospects not afforded to previous generations and to share experiences across generations. However, while we celebrate, we must be clear that the incidence of dementia will increase with age as the noble Baroness has reminded us. In parenthesis we should perhaps remember that it is not always older people who are sufferers; there are many distressing instances of early-onset dementia given by the Alzheimer’s Society.
It is good news that this Government take the issue seriously and that they have published a strategy earlier this year. As someone who has spent many years working with carers, I was very glad indeed, and welcome most warmly, that the strategy recognises that families are an important resource—probably the most important resource—in providing care for somebody with dementia. The Government have recognised the heavy and difficult challenges that the carers of those with dementia often experience and the need to deliver better support.
The strategy sets out important steps in improving dementia awareness and information provision to help the public, carers and sufferers to better understand, prepare for and cope with the disease. In addition, there is a welcome recognition of the role that technology, like “telehealth” and “telecare”, can play in maintaining independence for dementia sufferers and flexibility for their carers.
No one could disagree that there should be better knowledge about dementia and that the stigma that surrounds the conditions should end. We should remove the perception that dementia is a natural consequence of ageing and that nothing can be done for people with this condition. In that regard, there needs to be much better education and training for professionals. This should not just be for people providing dementia services but for other people in the NHS too. Certainly, much more sensitivity about this condition is needed in general hospitals.
We must ensure that people with dementia are correctly diagnosed. Currently, I believe only one third of people with dementia ever receive a diagnosis. This puts excessive strain on the carers who do not get the support or information they need. Neither is their expertise recognised. I have lost count of the number of carers who have said to me, “I took him into hospital or to the day centre and nobody asked me about him, nobody asked me about how to deal with him and what his medication is and so on. They just said, ‘You run off now, dear, and have some good respite’”. For carers with a great deal of expertise in this area, this is demeaning. Certainly, we all understand that people with dementia, and their carers, should get easy access to care, support and advice, following diagnosis. I very much hope that the dementia advisers set out in the strategy will help this.
Much progress has been made with carers in recent years. I applaud the Government for the lead that they have given, as well as campaigning organisations such as Carers UK. However, they will only be adequately supported in this arena if we link the dementia strategy with the national carers’ strategy. The dementia strategy focuses mainly on the health and social care sector in supporting people with dementia. Carers also need a decent income, the ability to continue working, back-to-work support, health checks and better support from the health service for their own health. They need better information about housing and about their rights, and skills and confidence, too.
The dementia strategy says that support for carers needs to be delivered through the national carers strategy but it does not mention work or income. We need to ensure that the key professionals who are implementing the dementia strategy have a clear idea of their responsibility under the carers strategy and of how it can help carers. Conversely, we need those who are implementing the carers strategy to ensure that carers of people with dementia are better supported. If these two strategies do not work together, the outcomes for carers of people with dementia will be considerably weaker.
One example that was referred to by the noble Baroness is the £150 million that was given to primary care trusts to provide respite care. There is a great deal of confusion about this money. A few primary care trusts, we understand, have indicated that they will be spending all or some of their allocation on breaks. Many are confused and have not yet entered into discussions about what to do, and many acknowledge the extra funding but do not want to spend it on carers. I heard of one PCT which set up a planning group on how to use the money before realising that it was not ring-fenced. When it realised that, it said, “Ah. Well, we don’t need to spend it carers at all, then”. This is not satisfactory, so I hope that the Minister will tell us, while acknowledging that unpaid carers deliver the majority of care to people with dementia, what additional steps the department will take to ensure that carers of people with dementia benefit from the whole New Deal for Carers strategy and are better able to access not only funding but information.
The noble Baroness, Lady Murphy, mentioned the Green Paper, which we all await with baited breath. She thinks that it will come next Tuesday; funnily enough, I heard that it would be the following Tuesday—but never mind. Does the Minister agree that a long-term settlement for social care is essential to ensure full delivery of the national dementia strategy? People with dementia, as the noble Baroness, Lady Murphy, told us, are hardest hit by the system of charging for care. Will the Green Paper set out options for reform which will deliver a better deal for people with dementia and their carers? I have heard it said that what we are requiring and expecting from this Green Paper is nothing less than a new Beveridge.
In commending the strategy, I also point up its limitations; principally, that while it is very good that it sets out a plan of action that should benefit the half a million carers looking after somebody with dementia, it needs to be combined with good implementation of the national carers strategy if it really is to benefit those with dementia and their carers.
My Lords, I, too, thank the noble Baroness, Lady Murphy, for introducing this timely debate in such a brilliant and comprehensive way. Dementia is a national crisis and too little is being done to address an urgent need. I should declare my interest as a patron of the Alzheimer’s Research Trust and as the recently widowed wife of an Alzheimer’s sufferer.
I welcome the publication of a national dementia strategy; £150 million over the next few years, however it is spent, will certainly help. Nevertheless, as other noble Baronesses have said, it is woefully inadequate in the face of the problem facing us as a nation. Better training for GPs and a dementia specialist in every general hospital are welcome reforms which should have existed long ago. However, the fine words promising patients more involvement and control in their treatment and the additional help for carers do little to resonate with the reality of dementia for the thousands of sufferers and their families today.
The problem is indeed urgent, as the noble Baroness has said. More than 700,000 people suffer from this terrible affliction, involving untold distress and hardship for them and their families. But matters can only get worse. We have over the past century greatly increased life expectancy, but for more and more of us, our bodies will, in all meaningful ways, outlive our minds. It is estimated that by 2025, 1 million people will suffer from dementia.
I should like to reflect for a moment on the reality of the disease that we are debating. Dementia affects memory, orientation, thinking capacity, comprehension, calculation, learning, judgment and language. It is a progressive disorder for which there is, as yet, no cure. For many sufferers, it brings with it loss of emotional control, in social behaviour and in the ability to make even the most simple decisions. Although it can occur in early life it is strongly age-related; the number of cases roughly doubles for every five years past the age of 60. The personal grief which lies behind the statistics is incalculable.
The cost to the country is beyond imagination. Currently, as others have said, the cost is £17 billion per year, eased only by the massive contribution made by the partners, children and family members who act as unpaid carers.
I make an urgent plea to the Government, of any political persuasion, to make it a priority to address particularly three major issues: research; information and support for carers; and an improvement in the quality of residential care. First and most urgently, there must be investment in research. The Government still have no real research strategy for dementia, although there are many developments, in both genetic and stem cell research particularly, which promise a real breakthrough in preventing, curing or delaying the onset of this disease. The facts are stark—as many people suffer from dementia as from cancer, yet the Government are spending eight times as much on cancer research as on dementia. In 2007-08 the total government spend was £248.5 million on cancer, and only £32.2 million on dementia. The US Government wisely spend 13 times more than the UK on this research, and within Europe, our government spend is behind that of either Germany or France.
I believe that research should have been a major plank of the national dementia strategy. At present we must be thankful for the two charities, which, as the noble Baroness, Lady Murphy, said, support research to the tune of a further £6 million a year—£4.5 million from the Alzheimer’s Research Trust and £1.5 million from the Alzheimer’s Society. The national strategy does make proposals for increasing GP training and awareness, and that could lead to earlier diagnosis. However, without a breakthrough in research that delays the progress of the disease—or best of all, finds a cure—this will only marginally improve the lives of individuals or ease the lives of carers.
My second plea to Government is for better information and support for carers. Reluctantly here, I must tell my own painful story as an example. I do not know if it would have made any difference to my darling husband if we had known earlier what ailed him, but at least we could have discussed things with him while he was still able to take decisions about what he wanted, and made provision for the fate that was to overtake him. As it was, the diagnosis came late, and his descent into darkness was swift. A happy, loving and highly intelligent man, a former Oxford don with advanced degrees from both Oxford and Harvard, he soon lost the power to finish a sentence, to recognise his own home, his friends, and finally even to dress or feed himself.
Experts tell us that people with high intelligence and education are often not diagnosed until the disease is in an advanced stage—because they live at a level of mental performance above the average, they are able to function apparently adequately for a longer period of the illness. The consultant who looked after my husband in the last stages of his life told me a story that illustrates this phenomenon. A brilliant world-class chess player went to visit his doctor, saying, “Something’s wrong with me, I can only see six moves ahead”. Six moves being still more than the average chess player can see, no one else had noticed his problem. However, he was diagnosed with advanced Alzheimer’s and died within six months.
So it was for my husband, and as his sole carer, I found myself carrying the burden of physical care and of emotional grief over the loss of my beloved lifetime companion, with almost no help from outside. I pay the warmest tributes to my local interim care team in Wandsworth, whose care when my husband first came out of hospital after a bad fall, alas, lasted only six weeks. Without them—and their team incidentally has now been disbanded by the PCT—there would have been nowhere to turn for help or advice. I, with the help of my adult children, had to research the possibilities of care assistance and home adaptations on my own. I struggled to provide care and adapt our home, with the minimum of official advice or information. A reliable and identifiable source of such advice or support would be a huge advantage and should be addressed in the future strategy.
The worst, and most painful, decision, finally to opt for residential care, is where, more than at any other time, information is needed. For most of us, residential care seems a terrible last resort, but it was the therapist from the team—who remained an informal telephone adviser and friend—who bluntly told me that all I was struggling to do, and the care I could give at home, was not as good as a residential care home could provide. Like most of the population, I knew nothing about care homes and had no idea even where to start looking. Proper sources of information and support in the decision are the very least that should be provided. Most people avoid care homes, even when they live next door to them—so finding where they are and identifying the right place for a particular person is an impossibly daunting task, almost as daunting as wondering where to find the means to pay for it. I was lucky enough to be told about a website which gave brilliant assistance, and that was my introduction to the hidden world of residential care—a world which no one knew or wanted to know outside those who lived and worked within it, and those who love them.
That leads me to my third plea to government. Better staff and resources for residential care should be a priority. Behind the walls of care homes are real people, with real lives and personalities. Some have had distinguished careers. Many, as I was sadly to observe, are virtually abandoned by family and friends, and many are confused and disabled. However, those who care for them there are disgracefully poorly paid, and, although many are dedicated and caring people, they are under-trained and often poorly managed by equally poorly paid and under-educated senior staff.
I welcome the commitment in the strategy to better training and support for carers, and to an improved inspection regime. However, the quality and educational standards will improve only if the levels of pay attract a wider range of well educated people into the role of care workers and into the crucial role of managers.
If, as is projected and as has been said, one-third of us now over 65 are to end our lives with dementia, and many will need residential care, the betterment of this provision is a national priority. While we retain our voice and our capacity to argue the case, the over-65 age group should shout loud our demand for a civilised provision of residential care. We all hope that we will not need it, and we all hope to die in our own beds with our minds intact, but many of us will not achieve that good death, and those affected deserve the country’s promise of at least a measure of dignity in their final years.
My Lords, I feel quite shamed by that speech. I do not think that I shall be able to do quite as well but I am glad to take part in this debate.
Like many people, I have some experience of dementia in that I was the person most closely involved in the care of my mother as she gradually disappeared into the mists of the disease. I recall that one of her most frequent questions was, “Who is paying for all this?”. She was always reassured when I managed to say, “Well you are, darling”. That was one of the last questions that she asked me before she died. So the patient may be “demented” but that does not mean that they have lost all their good sense, their marbles or their customary behaviour. One of the other things that she used to say when I arrived to see her was, “Would you like a glass of sherry, darling?”. There was not a glass of sherry in the room but it was her habitual wish to offer refreshment to a guest that prompted her to ask that question.
Last year, I took part in the work of the All-Party Parliamentary Group on Dementia, which concentrated on the prescription of anti-psychotic drugs to people with dementia who are living in care homes and on the need for better trained and better paid staff, both of which have already been referred to. The all-party group’s recommendations reflected our serious concerns about the use and misuse of these psychotic drugs. It emerged that patients with mild behavioural symptoms were being given anti-psychotic drugs, often for long periods. Although the Mental Capacity Act requires care personnel to consult patients and their carers, the group found that this was not done, with the result that neither patients nor their carers understood the reasons for prescribing these drugs or what their effect might be on patients. At the same time, doctors prescribing anti-psychotic drugs often did not visit patients sufficiently to appreciate their effect on those with dementia. We concluded that better monitoring of patients by physicians might well lead to a reduction of doses or even to the discontinuation of the use of the medication for a patient.
More profoundly, we concluded that the rapid resort to anti-psychotic drugs for patients who might, for example, be distressed by the move to a different and unknown place was, in itself, a sign of underlying problems with respect to the training, recruitment, development and pay levels of those working within the care sector. The more recent report from the All-Party Parliamentary Group on Dementia—I did not take part in that—recommends that all care staff working with elderly people should receive dementia care training.
The Alzheimer’s Society supports these recommendations and is calling on the Department of Health to develop dementia-care-related skills in the workforce. In my opinion, it is of great importance that all care workers share a common training and a common understanding of the needs of Alzheimer patients. Equally, leadership of care home staff by the senior staff member can assist the staff to understand, and therefore serve, their patients more thoughtfully and sensitively. Good examples of that were brought to us during the work of the all-party group.
I make these points because they indicate the very precise targeting of proposed solutions to the practical problems encountered in care homes. Obviously a government strategy will be more comprehensive than what I am talking about, but we have to keep remembering that it is the high proportion of patients in private homes, and the high proportion of patients who are still not receiving proper care, who need to be encompassed in such a strategy, with the right protocols and training for staff and the right protocols for medical practitioners to ensure that, in things like the giving of drugs, the process is properly and correctly aligned to the needs of the patient and is not simply an automatic way of dealing with a difficult patient.
One of the problems about being in an old people’s home is that, by definition, you are vulnerable there. You are on your own; there may not be anyone in your family who can visit you on a daily or even a weekly basis. It depends where you are living in relation to the rest of your family. Cases where the nearest family members, who may still be at work or be looking after their own children, live far from their elderly relatives in their care home present particular difficulties.
The first advice that I would give any responsible family member is to ensure that any residential home chosen for the patient should not be far from the home of the person most likely to visit the patient. I made what turned out to be the stupid mistake of thinking that my mother would be better off in her own home town. That was not true; she would have been better off down the road from where I lived. That would have been much better for her and, obviously, much easier for me. Again, if I were advising a family on learning to cope with an Alzheimer patient, I would suggest creating a rota of visits in such a way that the entire burden is not left to one person and that the patient is helped to remember their grandchildren—and, in the case of my mother, their great-grandchildren—in other words, their true life outside the residential home.
The all-party group’s reports have made several important recommendations about the use of anti-psychotic drugs, the major subject of the report. They have dealt with the question of harm and the question of their not being kept under supervision by doctors. A recommendation was made that a new system for regular specialist assessment of vulnerable patients in care homes should be established, which would also involve the GPs responsible for day-to-day medical care. I am not sure whether any progress has been made in response to the recommendations of the previous report from the all-party group, rather than the most recent one. How much have the Government been able to do in response?
The group’s second report on this matter, the most recent, is concerned with the training for the care of people with dementia. It recommended that dementia training, including communication skills, should be mandatory for all care home staff; that dementia training should play a larger role in the training of GPs; that staff turnover needed to be reduced; and that local authorities should use their commissioning powers to drive up standards. Again, I am not sure whether the Government have responded to these suggestions. I am also not certain that any serious steps have been taken to create a recognised training programme for care home staff. The need for such a training programme has been mentioned by everyone who has spoken so far.
I apologise if this speech has appeared somewhat scrappy. Neither the document with which we have been supplied nor the subject lend themselves to this sort of debate; in other words, one needs more time to expand one’s thoughts. I have not been able to make any response to any of the excellent speeches made, for example, by those who spoke before me. I look forward to the Minister’s response and hope, for all our sakes, whether as sufferers or carers, that the new approach really will make the difference.
My Lords, I am glad to have the opportunity to speak today. I thank the Down’s Syndrome Association for its briefing in advance of today’s debate and of course the charity Mencap, of which I am the president. I also thank my noble friend Lady Murphy for introducing the debate, even though she once or twice frightened the life out of me with her statistics—I am now well into my 86th year.
I am delighted by the publication of the National Dementia Strategy and its wide-ranging aims of improved awareness, earlier diagnosis, intervention and a higher quality of care. This strategy is vital in light of the fact that people with learning disabilities have a significantly higher risk than the general population of developing dementia, at a much earlier age, particularly those with Down’s syndrome, such as my daughter, who displayed distressing symptoms for some years before she died.
I am glad to say that the awareness of dementia in people with learning disabilities, particularly in adults with Down’s syndrome, has increased significantly and is now well recognised in many parts of the country, with screening services either available or in development. However, I am concerned that there continues to be a mismatch between the services that are available and the ability of someone with learning disabilities who suffers from dementia to access them. In particular, delays in diagnosis are leaving people with a learning disability isolated. I would be interested to hear what plans the Minister has to help to speed up referrals to specialists so that the correct care and treatment can be made available as soon as possible.
I would like to take a moment to give a human face to our discussions today. Let me tell your Lordships about Sandra. She is 46, has Down’s syndrome and was in supported living in the south of England. When she began to show signs of deterioration, despite being allocated support workers, she worsened to the point of remaining in bed, soiling sheets, crying and shunning contact before she was taken into residential care. A further 12 months passed before the question of dementia was raised and she was eventually assessed by a psychologist. That report has never been finished. The psychologist left the service and Sandra is now waiting again for another assessment to take place. In the mean time, there is no diagnosis, no treatment and, of course, further deterioration. I am absolutely appalled by this case. Sandra may or may not have dementia, but until she gets an assessment of her needs she will get no treatment.
The Government could take a number of simple measures to assist services to improve and to meet better the needs of people with a learning disability. First, a baseline should be established for every adult with Down’s syndrome while they are healthy, as the detection of early signs of dementia relies on a good baseline. Secondly, assessment for dementia in any adult with learning disabilities should be readily available as soon as concerns have been raised. Thirdly, services might also consider prospective screening for dementia for adults with Down’s syndrome, conducted at intervals, say, from the age of 40 or 50. I would be grateful for the Government’s views, although it is very difficult to see how we can achieve improvements in assessment and diagnosis unless we invest in more resources.
The Government also need to recognise the increasing possibility that people with learning disabilities will be living in a range of accommodation: independently, with family, supported by other services such as social care or healthcare, or in residential care. It will be essential to ensure that services such as those for dementia reach the target audience.
The Government have said that they intend to ensure that all health and social care staff involved in the care of people with dementia have the skills needed to provide the best quality care in the roles and settings where they work. This is welcome. However, we must have such training for all those who work with people with learning disabilities throughout the health and social care sectors in order to prevent further cases such as Sandra’s or our hearing once again those dread words, “Lessons have been learnt”.
The social care funding crisis, where resources have not kept pace with the increasing numbers of people with a learning disability requiring them, is also having a major impact on the lives of people with a learning disability who experience dementia. Many are being excluded from appropriate support or are reporting cuts in their services. Indeed, a report published last year by the Learning Disability Coalition found that 34 per cent of respondents had experienced cuts. These reductions in care mean that there is less chance that symptoms of dementia will be identified or recognised.
Next month sees the publication by the Royal College of Psychiatrists and the British Psychological Society of guidance for the assessment, diagnosis, treatment and support for people with learning disabilities who develop dementia. It highlights the specific issues that people with learning disabilities and dementia present and identifies the key elements of an excellent service that would lead to a high-quality, safe and person-centred lifestyle as the dementia progresses. I would be interested to hear what the Government plan to do to promote this guidance.
I am afraid that this inequality in care facing people with a learning disability echoes throughout the health service, as evidenced by Mencap’s campaign for justice for the families of people with a learning disability who died unnecessarily in the care of the NHS after they were treated differently because of their learning disability. Indeed, one of the six cases highlighted by Death by Indifference was that of Ted, who did indeed suffer from dementia. An ombudsman’s investigation published earlier this year found that the NHS trust in charge of Ted’s care was guilty of service failure.
Too often medical professionals cannot see past someone’s learning disability through to his physical health needs. With regard to dementia, that means that the condition is often misdiagnosed as being behavioural and those in need miss out on treatment and pain management. I certainly took forward to hearing the Minister’s response to the points that I have raised today.
My Lords, I am grateful to my noble friend for allowing your Lordships to take part in this important debate. I must disillusion Members of the House about the telegram from the Queen. You already have to write and send your driving licence and your passport if you are to get a telegram from the Queen. I know this because I have a sister who has just passed her 100th birthday and has neither a passport nor a driving licence, not having been able to drive for some years. However, she got the telegram in the end because I rang up and said that I would vouch for her identity, so you may get a telegram, but you do not get one automatically.
I was very interested in the strategy and glad that the Government published it. The word “stigma” was used in the document and by some noble Lords who have spoken. I do not think that it is quite the right expression. I do not think that there is a stigma attached to dementia; rather, I think that it is a taboo subject, which is rather different. It is taboo because it is so extremely horrible and people are not willing to talk about it. This is an important distinction.
In a recent paper from the University of Wisconsin-Madison, two doctors demonstrated statistically how beneficial, both socially and financially, was early intervention with dementia. They recommended that drugs should be given at an early stage to lengthen the life of sufferers. I do not know whether these were anti-psychotic drugs. There must be more research, as everybody has said, and much better knowledge about the effects of whatever drugs may be given—I hope that we may hear more about this later—to slow down the progress of what is a terminal illness, albeit one that may last for years.
The doctors from Wisconsin showed that, for early intervention to work—and this is common sense—early diagnosis is essential. However, I do not underestimate the great difficulty of early diagnosis. The noble Baroness, Lady Perry, has pointed out that sometimes the most intelligent people are diagnosed latest, because not only have they had a very active and interesting life, but also they are capable of developing strategies to disguise what they know are defects—even defects in their chess playing, but certainly defects in their social behaviour. The story told by the noble Baroness, Lady Thomas, about her mother offering sherry, is typical. Many people with severe and far-progressed dementia retain a very agreeable social manner for a long time and will always be polite to visitors, even if they do not have the foggiest idea who they are. I always find touching the stories from people with direct experience of dementia. They are also difficult to bear when one thinks of one’s own possible future.
The trouble with early intervention is partly that people develop strategies and partly that they are in denial. We know that the older population dread the onset of dementia far more than they dread cancer or heart disease: it is the dread of everybody’s life as they get older, which is why the subject has been taboo. We should therefore be grateful for the publication of the strategy.
However, I was particularly alarmed to detect in the strategy—optimistic and useful though it is—an assumption that most people who develop dementia will have someone living in their house to look after them. Everything that was said seemed best fitted to the case of somebody with a spouse who will heroically take charge and become a carer. Early diagnosis is especially difficult in the case of people who have no one living with them. Huge numbers of people live by themselves as they get older—a fact that is seldom noticed by people who want to deliver parcels, or expect there to be someone at home to welcome the plumber. People who live by themselves are often in denial—they will not notice changes—and their family who come to see them do not live with them, so may not notice the early signs of dementia.
This brings me to something that is terribly important. The possibility of early diagnosis rests with the GP. Most GPs, when people go to see them, understandably attend to the problem that the patient has gone with, which may be anything. They do not have time to assess the general state of the patient. This is partly because they have five minutes or less to talk to them, but partly also because so many GPs now do not know the patient well. They know their case history, but they do not know the person and cannot see signs of deterioration in the way that, in the old days, the family doctor would have done. There is an enormous responsibility on the medical profession, in particular general practitioners, to be alert to possible signs of dementia and to question the older person who comes to see them about how their life is going and whether they have any worries. That is not often done, but it would help early diagnosis if doctors learnt, first, the signs of dementia and, secondly, the necessity to probe when making their diagnosis.
The main reason why I feel so strongly about early diagnosis is that, when the disease is diagnosed, the person should be allowed to talk about their future and make a specific advance decision about how they want their life to end. This seems to be of the greatest possible importance. What I seek from the Minister is the assurance that, if someone has been diagnosed with dementia, that will not in itself constitute a diagnosis of mental incapacity. If it did, the advance statement would be of no use. I would like to see a situation where we can make an advance statement about our own death before the steep decline that comes at the end of dementia has set in. I would like the Minister to say something about that.
My Lords, I congratulate the noble Baroness, Lady Murphy, on securing this debate. It is a matter that should be aired. I disagree slightly with the noble Baroness, Lady Warnock. Her distinction between taboo and stigma is interesting, but ordinary people still think that a stigma attaches to dementia. Many have adopted the word “Alzheimer’s” for all forms of dementia, because they feel that it is more acceptable to society than “dementia”, which is a much older word. However, in some ways the noble Baroness is right—I agree absolutely that for most people the dread of dementia is very worrying.
Dementia is no respecter of persons. My mother was a very early graduate from Sydney University—one of only 100 women at the time. She was a bright young woman. When I went to see her in Australia in 1958, she had had a stroke, mini-strokes and was suffering from early dementia, from which she never recovered. She went on to become quite childlike and lived for a number of years. Fortunately, I was one of nine children and the other members of the family were able to look after her, but she was in residential care. She lived to quite an age.
Another interesting case is that of Iris Murdoch—many of us have seen the film. Years ago, I was asked to meet Iris Murdoch when she was signing books. Her latest book was The Sea, the Sea. I met her in Marylebone library, where the reading and book signing was held. She was such a clever woman—I was very impressed, and the book was very complicated, too. A few years later, when I moved to the country, I found that my house was immediately opposite hers. I had no idea that she lived there, but we met again in the village street. She was still quite well, but not very well. She remembered clearly having met me before, and welcomed me to the village—she was charming. We all know that she deteriorated very badly. I used to see her when her husband took her for walks in the village. They moved out of the village altogether when they needed to be closer to medical care. Again, she was a very clever woman in whom we saw a lot of changes. I pay tribute to my noble friend Lady Perry. George was a most brilliant man and I know how much she did to look after him in his last years.
When I was chairman of the Royal Free Hospital, we had a special section of the hospital that had been the home of Sir Thomas Lipton, the famous man from the days of the America’s Cup who was going to win it back for Britain. This home was converted into a special place for the care of dementia cases. It was a huge Victorian home, on to which the hospital had built a lot more. Every year we had a garden party for everyone, including the relatives, and I went every year while I was chairman of the hospital. Many relatives told me that the problem with dementia is that it is a living bereavement and I agree with that. Early onset dementia is uncommon, but it happens, and can occur in people as young as 30. One man came every day to see his wife who had been in a bad state from the age of 40. It is hard when people are old, but it is more anticipated. It is rare in young people, but it is very upsetting.
I was given a marvellous book, Alzheimer’s at your Fingertips, which was written by Dr Nori Graham, a consultant at the Royal Free Hospital, Harry Cayton and Dr James Warner. It was published in 1997. It is so good because it answers the practical problems of the people who have so much to do with caring for people, particularly in the early stages of Alzheimer’s. It answers questions, such as who will get Alzheimer’s disease. It says that it is uncommon in younger people, but it can affect them, and that it occurs more in some groups. Alzheimer’s is the most usual occurrence of dementia. After that comes vascular dementia, the type that my mother had, which is due to a stroke. We all know many people who have had a series of mini-strokes. Often they make a partial recovery between the strokes, then they have another one and they go a further step downhill.
I rushed to read this book when my wonderful godson was diagnosed with Pick’s disease. Unfortunately, that is not good. The book sets out the details of the forms of dementia, which people do not understand, and explains that the causes are not fully understood. It refers to the importance of seeking a diagnosis, which so many speakers have emphasised today, and I could not agree more. The book covers practical care, general questions and the different situations in which people find themselves. Non-recognition is very distressing for loved ones who find that they are not known.
The book is written in the form of questions and answers, for example:
“My wife often says to me ‘When are you going to take me home?’. Then she packs some things into a bag—pictures, ornaments, etc. How can I explain that this is her home?”.
Another example is:
“Sometimes, in the evenings, my husband looks at me and asks me when am I leaving. He then hands me the telephone and says ‘Tell my wife to come home, so that you can go back to your home’. What can I do?”.
People find themselves in these types of situation all the time. The answers are reassuring and it is comforting for people to know that others suffer the same situation. The book then gives answers to the questions.
Another interesting question is:
“My husband, who has Alzheimer’s disease, often gets angry, and sometimes hits me. He never used to do this. What can I do to calm things down”.
I have met many people who find themselves very distressed by a husband who has always been a calm and loving person suddenly becoming quite violent. Restlessness, agitation, wandering, anger, aggression and bitterness are all problems that people face. Knowing that others face the same problems consoles them and helps understanding.
However, there is a need for a greater public awareness. People often know nothing about it until they find themselves in that position. Public awareness changes attitudes and means that people are more supportive in general. I support the view that diagnosis is undoubtedly the key. I was rather pleased to meet a young German doctor at an Alzheimer’s function here. He told me that he had come to England to do research into this because he believes that our research is probably further ahead than that of most other countries. What we all want to see is not research into either prevention or cure, but research into both. The strategy is excellent, but we should deal with this matter in such a way that we do not have this distressing number of cases.
My Lords, I congratulate my noble friend Lady Murphy on securing and introducing in such a brilliant way this important and urgently needed debate. The speeches I have heard have also been moving. When dementia hits, it is a tragedy for everyone, not just for the patient but for their family and friends. Therefore, the National Dementia Strategy is extremely welcome. Much of it is excellent and gives us hope for the future. Sadly, the promised review of anti-psychotic drugs has been delayed and, as has been pointed out, research is not an integral part of it.
I agree with the noble Baroness, Lady Gardner, that dementia is not quite as much of a taboo subject as it previously was and that it is now recognised. We have heard that funding for research is just over 2 per cent of our total research spend. As the noble Baroness, Lady Murphy, said, that is eight times less than is spent on research into cancer and heart disease, but we know that the incidence is far greater than both of those. I still think it is shaming that in the United Kingdom, we spend £13 per person on dementia research per year, whereas in the United States the spend is £121 per person. I hope that the Minister can assure me that the forthcoming research summit, led by the Government with the Medical Research Council, will lead to a comprehensive research strategy. Cross-sectoral and cross-disciplinary collaboration are essential. We need a really broad research strategy, including a reversal of the totally inadequate number of trials to ensure that prompt translation of scientific developments into new drugs and treatments can be assured.
We also know that apart from the huge scale of suffering, the economic consequences of dementia are enormous. In the UK, we already have 750,000 people with the disease and 53,000 new cases are diagnosed every year. The demand for care will increase exponentially and we know that at present only 30 per cent of people suffering from dementia are in care homes. Most are in the community. As the noble Baroness, Lady Pitkeathley, pointed out, most are cared for by family and friends.
We cannot guarantee that that situation will continue; that people will be able or willing to continue to do that job. Certainly, many people are hindered by a lack of support. A lot of the paid carer support services are often not fit for purpose. Families and other carers face a huge number of disadvantages, even in getting adequate advice and guidance. The dementia strategy must remedy that situation. The strategy does not adequately address the challenges and possible opportunities presented by the personalisation agenda. I hope that the Minister can reassure me on that as well. As we have heard, the development of our workforce must be prioritised and training must be a mandatory part of care through commissioning. Again, I hope that the Minister will reassure me that this will happen.
People who work in the field of dementia are low paid and invariably poorly qualified. We know that low pay and poor qualifications lead to a skills shortage. It is better and more socially rewarding to get a job at the Tesco cash till than working in many homes. People leave when they can. Care in people’s own homes is often bought by the care companies and agencies by the hour or even by the minute. This has to be reversed. Care needs to be based on achieving quality of life. It has to be outcome-driven, not task-driven. That is another priority.
We have heard that there is a problem in care homes with the overuse of anti-psychotic medication. I was part of the All-Party Group on Dementia inquiry report that pointed this out. Similarly, we have to look at the use of restraint in homes and hospitals, which can be both overt and hidden. Restraint can easily slip into abuse. Only adequate training can prevent that happening.
On pharmaceutical treatments and prevention, Professor Ballard commented earlier this month that the use of cholinesterase inhibitors and amyloid cascade interactors has been delayed by poor prioritisation and funding. We need to consider that seriously.
We have heard from noble Lords about the discrimination against older people that still persists. Otherwise, 50 per cent of patients would not be without a formal medical diagnosis. Labelling the care they need as social care is proof of that discriminatory prejudice against older people. The National Audit Office found that GPs are also not sufficiently trained to recognise early symptoms or to manage the disease. It is difficult, but people should be made aware of their diagnoses. For that to happen, GPs—apart from training—have to know that some treatment and support will be available. Otherwise, they are not going to add to the distress of their patients by diagnosing them when nothing will be done to help them. The widespread introduction of memory clinics across the UK in this strategy should enable earlier diagnosis and treatment.
We have to pay more attention to those people in the final stages of dementia who need palliative care. There are other worrying trends. The noble Lord, Lord Rix, has mentioned one. The Social Care Institute for Excellence reported recently on a growing incidence of younger people suffering from one type of dementia, Korsakoff’s syndrome, through the overuse of alcohol. We have to watch for new types of dementia that are emerging.
The dementia advisory role in the strategy is a welcome development. It should provide a point of contact and support. At present, in spite of the huge amount of work done by the charities—they do a wonderful job—people and families often wait for up to three years before seeking help.
We can learn an awful lot from other countries and we should not resist doing so. The French have produced their third national Alzheimer’s plan and there are points in that we could learn from. In the Netherlands, there are specialist care home physicians.
We need a set of goals to which we aspire. Let us aim to have real improvement in diagnosis, treatment and care for dementia patients within the next five years, and immediately integrate health and social services in this field while developing specific skills and training at all levels. For this we need a major public awareness campaign that places dementia in the forefront of public priorities. We probably also need a dementia tsar or champion—I know this is being considered—to lead our country in awareness of dementia and acceptance of the challenges it brings.
One of our leading care home providers has called dementia the “silent epidemic”—an adequate description. We have to remove any remaining stigma and lack of interest that leads to this sort of discrimination. We must be determined to give dementia the priority it deserves. We need a national framework together with local and enforced standards in care. The role of the Care Quality Commission will be critical in looking, for example, at healthcare in residential homes, where so many people with dementia live.
People with dementia are among the most vulnerable in our society. Action and total commitment are needed now. It is the least we can expect.
My Lords, I also thank my noble friend Lady Murphy for this debate and her excellent introduction to it.
In 1999, just after my retirement from chairing the Broadcasting Standards Commission, I was asked to be one of the judges for ITV’s best documentary of the year. It turned out to be an interesting assignment. It was also my personal introduction to the subject of today’s debate. The film that made by far the most vivid impression on me was “Malcolm and Barbara: A Love Story”, created by Paul Watson. Malcolm and Barbara were husband and wife and Paul Watson their long-standing close friend. When Malcolm, a talented musician then in his early 50s, was diagnosed with Alzheimer’s, they reacted to the bad news by agreeing that, however horrifying the developments, Watson would film the disease as it developed over the years ahead. It was indeed horrifying and distressing to watch the stages of the disease unfold on film, and, at the same time, to observe the lack of appropriate support for Barbara that occurred along the way.
If anything was needed to alert me to the huge sums that carers save the national budget in this area, as well as to wake me up to the need for a totally different national approach to dementia, it was to see just how much Barbara was able to—indeed, had to—achieve, by coping so heroically with fearful mood swings, not excluding violence, from her distressed husband. It is therefore no wonder that I was particularly glad to see that Barbara featured in a recent Honours List—a more than well-deserved recognition of the love and dedication that she and so many other carers in these situations provide. Currently 500,000 family carers are providing, unpaid, some £6 billion worth of care.
In the 10 years which have elapsed since I first saw that documentary I think that we have all become increasingly aware that we are indeed an ageing population, and increasingly aware of the many implications that this has and will have for our own and for our children’s future. I am certainly aware that I am 10 years older, and I am beginning to recognise my own moments of tell-tale forgetfulness. So, against that background, it is more than fitting that I should congratulate the Government on their decision this year to publish and roll out a National Dementia Strategy. I hope that that way forward will include the contribution that employers also can make by retaining for as long as possible the valuable skills of dementia sufferers via means such as flexible working.
We should all give considerable priority to the Government’s plan because it is clearly in everyone’s interest. In its 2008 report The Dementia Tax, the Alzheimer’s Society predicted that the number of people with dementia will rise rapidly from 700,000 today to over 1 million by 2025. I know that different people will quote different figures but another of its reports predicted that one in three people over 65 will end their lives with a form of dementia. Bluntly, the financial cost of all this will be unmanageable if we continue as we are now.
As the Alzheimer’s Society points out, dementia is the UK’s biggest health and social care challenge. So the more I read about the strategy, the more important four aspects of it seem. Other noble Lords have already mentioned many of these. The first and most urgent aspect is the Government’s commitment to a national public awareness campaign. It is essential that the stigma—indeed, the fear—that dementia engenders must be confronted and changed.
The second aspect is earlier diagnosis. It is good to know that the Government believe that with earlier diagnosis, more effective and well-researched medication and, above all, improved training and awareness among doctors, nurses and all those involved with the care of these patients, “living well with dementia” can be achieved. That is particularly important for end-of-life care, which is manifestly inadequate at present. This whole area needs to improve, as currently only 31 per cent of GPs believe that they received sufficient basic and post-qualification training in diagnosing and managing dementia. Only this week I heard from an Australian friend that every GP in that country is already required to test all their 70 year-old patients for dementia. So we are clearly behind other countries.
Thirdly, for those with dementia and for their carers, the crucial need which they themselves identified in the consultation process was to have,
“someone with them on their journey”.
In other words, they need a local, knowledgeable contact who, from the moment dementia has been diagnosed—and, equally important, before then—can give support, information, advice and access to the services needed.
One important feature to bear in mind is the evidence showing that people want to stay in their own home and, preferably, ultimately, to die there. In many ways that is so much the better—not only do they fare better out of hospital; another tangible benefit is considerable financial relief for the NHS budget. As we have heard, 70 per cent of acute hospital beds are occupied by older people receiving inadequate care. That does not make any sense.
However, if dementia patients are to be able to stay at home while at the same time enjoying the benefits of companionship, they will ideally need to find themselves in a diverse as well as comprehensive community. Most people—patients and carers alike—would prefer access when wanted to personalised social activity, from bingo to bridge, and short breaks for carers within a peer group with whom they can share activities and compare experiences.
Fourthly, dementia is a disease. I was glad to hear a number of other noble Lords say that it is quite wrong for its treatment effectively to be classified as social rather than medical care and therefore means-tested. For dementia patients, that is all too often the practical consequence of the present system of charging for care. This fundamental point is most clearly spelt out by the Alzheimer's Society in its report The Dementia Tax. And what a value we have in the Alzheimer’s Society—without it, I do not think that we would not know half of what we know. I look forward most to the Minister’s reply on this point. Is the treatment and care of dementia likely in future to be managed and financed on the same basis as any other disease tackled by the NHS? If not, why not?
My Lords, this has been a singularly well informed and at times extremely moving debate. Only those who have witnessed and experienced the progressive deterioration in intellect and personality of a family member can recognise how immensely distressing, even agonising, that experience can be.
Alongside obesity and type 2 diabetes, dementia stands now as one of the greatest public health challenges of the age. As Members of your Lordships' House have said today, it is likely that by 2025 the number of people with dementia in the United Kingdom will almost have doubled. As the Alzheimer’s Society has made clear in its excellent briefing, the cost of dementia will rise from £15 billion today to more than £23 billion by 2018.
One of the problems is early diagnosis, to which many noble Lords have today referred. I propose to spend a little time on that, because it is crucial. My noble friend Lady Murphy said in her excellent introduction that there are about 150 causes of dementia, many of them exceptionally rare. More than 80 per cent of patients with dementia are suffering from Alzheimer’s disease, but there are other, not uncommon causes—as the noble Baroness, Lady Gardner of Parkes, said, multi-infarct dementia resulting from repeated minor or major strokes is an important one. So, too, is Lewy body dementia. It is less common, occurring in association with, but not invariably so, Parkinson’s disease, because of the deposition of Lewy bodies throughout the cortex of the brain. Fronto-temporal dementia is also quite different.
It is crucial to get the diagnosis right because research is progressing in many parts of the world which is bringing within sight the prospect of a more effective treatment for the various dementias, particularly for Alzheimer’s disease, which may be a crucial development alongside the improvement in the standards of care to which many noble Lords have referred.
Unfortunately, there is no precise diagnostic test for Alzheimer’s disease. CT scanning and magnetic resonance imaging may help to show shrinkage of the brain. There are other tests, such as those for memory. More recently, a precisely defined test-your-memory test has proved to be extremely valid. It has been designed to minimise operator time and to be suitable for non-specialists to use. However, as a recent editorial in the British Medical Journal stated:
“Diagnosis requires consideration of the person’s education, culture, and circumstances; dementia presents when a person’s cognitive abilities are no longer adequate for them to cope with their environment. A high flying executive may experience problems early in the … process, whereas a resident of a care home may have no difficulty with his or her routine until pronounced changes have occurred”.
Many years ago, when I held a chair of neurology in Newcastle-upon-Tyne, I was involved with Professor Roth, Doctor Blessed and Professor Tomlinson in studying the changes in the brain occurring in patients with Alzheimer’s disease. We all recognise, as several people have referred to today, that, as we get older—I am approaching my 87th birthday—we often find problems with the memory, particularly memory for proper names. It is extremely embarrassing when you encounter somebody whom you know extremely well and suddenly find that their name has gone—you can call that selective nominal aphasia, benign cognitive impairment or benign senescent forgetfulness. In a way, Alzheimer’s disease is a rapidly progressing, advanced form of that kind of impairment, as the work of Blessed, Roth and Tomlinson showed, because, even with normal ageing, there is an increase in the number of senile plaques in the brain cortex. That number is vastly increased in patients with Alzheimer’s disease.
What about research? The Newcastle scientists, helped by the biochemists, the Perrys—husband and wife—found a serious reduction in the concentration of acetylcholine in the brain cortex. Acetylcholine is a neurotransmitter which carries messages from one nerve to another. That finding led to the introduction of drugs which inhibited the enzyme which degrades acetylcholine. Those are the drugs called donepezil, and many of its other derivatives, which have proved to be helpful in delaying to some extent the progression of the disease. However, that is symptomatic treatment; it does not strike at the root cause of the disease. In these senile plaques, which are so characteristic, and the neurofibrillary tangles which appear throughout the brain cortex, chemical substances have been identified, not least beta-amyloid and its precursor, but also a substance called phosphorylated tau, which appear to be markers of the process occurring in the cortex in these conditions. Work is now in progress in a number of centres in the UK and abroad where individuals are attempting to introduce techniques to reduce the level of those substances within the brain cortex.
A few years ago, an attempt was made to produce a vaccine and the vaccine against beta-amyloid was shown to be, in some ways, effective. Unfortunately, in clinical trials, it also produced unacceptable degrees of brain inflammation and the trials had to be discontinued, but other methods are now being explored.
Although, as a number of noble Lords have said, the amount of money being spent on dementia research in the UK is much less than in other countries, we do have centres of excellence—I was talking yesterday to Professor Martin Rossor, who is a leader in this field at the National Hospital for Neurology and Neurosurgery, Queen Square. He commends, incidentally, as do I, the National Dementia Strategy, though he feels—and I ask the Minister to comment upon this—that though the dementia strategy is excellent in what it plans and proposes for the elderly patient with dementia, it is less suitable for those who develop dementia at a relatively early age, in their 40s and 50s. The Minister may wish to comment on that point, but it is an excellent document.
These centres of excellence are in London, in Oxford and at the outstanding Centre for Brain Ageing and Vitality, led by Professor Tom Kirkwood, in Newcastle-upon-Tyne, funded by the Medical Research Council and the Wellcome Trust, where some outstanding work is going on. I stress these points because I genuinely believe that, within the next 10 years, we will see mechanisms introduced whereby forms of treatment for Alzheimer’s disease will become much more effective than those available now. That kind of treatment must stand alongside the crucial improvements in care and the other objectives so clearly set out in this dementia strategy. I think we have considerable optimism for the future.
My Lords, it is a privilege to begin to sum up at the end of what has been a highly informed and at times very moving debate. I pay particular tribute to the speeches by the noble Baronesses, Lady Murphy and Lady Perry, and my noble friend Lady Thomas of Walliswood. I should declare an interest as one of the 18 per cent of Members of your Lordships’ House who does not qualify for a bus pass. In response to the noble Lord, Lord Walton of Detchant, with every passing year, I become more inclined to think that I ought to carry a card that says, “in case of an emergency, please note, she has never been any good at remembering people’s names—do not assume that she has got Alzheimer’s.”
In thinking about this debate and reading this document today, I was trying to place this disease in its historical context. I think we have moved from an age in which Alzheimer’s, or dementia, was a thing of such fear and dread that it was locked away and ignored. Dementia has become something which people talk about in euphemism. When I talk to older people, something I do quite often, and they talk to me about other older people they know, they will say things like, “She is really losing the place”, or “You know Mrs So-and-so? She doesn’t know her husband any more.” Recently, I was talking to some younger people and they were telling me that one of them is practising for his driving test. They said, “It is really good, because his nan lives with them and she’s got Alzheimer’s and one thing that calms her down is that she loves being driven around in the car, so he is driving her around all over.”
The point is that Alzheimer’s and dementia are beginning to become part of family and community life. The thing that is missing from this document, good though it is in many ways, and the thing that restricts it as a strategy, is that it does not really address the key issues about how this disease becomes part of community and family life, with effects way beyond the narrow confines of health and social care. I think that that is the point my noble friend Lady Thomas of Walliswood was making when she talked about the disparate nature of this debate. This document, laudable and welcome though it is, is a series of unconnected points. That is unfortunate, when we are going to be looking at its implementation at a time of severe restrictions in public expenditure.
If the department had been bold, this would have been a strategy to enable individuals and communities to manage what the noble Lord, Lord Walton, rightly called one of the biggest public health developments that we have. It would have acknowledged, for example, that this is a disease with a greater incidence in areas of affluence. It is a disease that happens when people are sufficiently well and are not affected by other co-morbidities, so that they live longer. It is a disease the incidence of which is a manifestation of other health inequalities, or what I would call health poverty. It is no surprise that people who have had very distinguished careers get this disease more than others, because they have not been affected by other things.
At the beginning of setting out a strategy, we on these Benches ask, how is it that we can enable individuals, families and the state to deal with this issue as it grows? There is no doubt that responsibility for care will rest on a partnership between individuals and the state for a very long time to come.
I want to talk briefly about a strategy for research. A lot of people have talked about research into early diagnosis. Noble Lords who listened to the Reith lecture on Radio 4 will have noted the very interesting point made by this year’s Reith lecturer that much of the commercial investment in this sort of research is about early diagnosis. This is in order to produce drugs which not only help people who have dementia, but people who are beginning to go through those very early forms of forgetfulness and who wish to maintain their brain performance. The noble Baroness, Lady Murphy, said in her introduction, that there is going to be a research summit. Will the strategy for research be about discovering treatments and mitigations for early onset of the disease, which will enable people to remain economically active for longer, or will it be about research into treatments and mitigations for those who are significantly older and will therefore live longer with other co-morbidities? Will the research be about improvements in quality of life for people who have this disease and their carers, or about prevention for a younger group?
Noble Lords listening to Radio 4 this morning will have heard what has been happening with the cancer strategy and the cancer plan. I agree with the noble Baroness, Lady Greengross, that it was interesting to note that the cancer strategy has not worked as well for older people. Having said that, the cancer plan and the way the cancer plan has worked, bringing together academic research, the NHS, charities and principally to focus the involvement of sufferers is exemplary. For breast cancer, for example, it has led to the establishment of centres of clinical excellence in research and treatment, but it has done so in a way that has enabled those who have the disease to make improvements in their social care.
It was very interesting that when Professor Mike Richards was tackled recently about the cancer plan and how our cancer survival rates are not as good as those of other countries, he defended the plan, saying that any plan had to address cancer prevention and treatment as well as early diagnosis and care, and there has been an all-round improvement. If we were to have a strategy for dementia that worked in that way, it would be worth investing a very great deal of money in it.
I echo the point made by the noble Lord, Lord Rix—I never repeat his points, as he makes them far more eloquently than I do. There is a growing need for people throughout the whole of health and social care to understand dementia as it affects their discipline. Dentists, for example, need to know what to do when somebody with dementia presents to them. I would go much further and say that in the commercial world, smart companies will recognise that dementia will have a huge impact on family life. When housebuilders start building houses again, will they build very small boxy units or will they actually build houses into which three generations will at some stage move, as families with younger children will be looking after people with dementia? I think that it could go much further.
The noble Baroness, Lady Murphy, referred to the comments made by Joan Bakewell. I have been saying for some considerable time that the process of tendering for social care is wreaking a great deal of havoc, particularly upon specialist services. It is increasingly the case that a service—information and advice, domiciliary care, or whatever—is commissioned not on the basis of need or of client groups but of all people over the age of 60. I think that in future there will be many fewer specialist agencies around, particularly in the voluntary sector, to help implement some of the worthy but at times very unrealistic ambitions of this document.
My Lords, I, too, thank the noble Baroness, Lady Murphy, for initiating this debate and introducing it so comprehensively.
The National Dementia Strategy is an excellent report, and I was especially pleased that one of its objectives is to address the stigma associated with dementia and reduce social exclusion and discrimination. I have always found it rather surprising and disappointing that so many apparently intelligent people can make disparaging remarks about those with mental illness. Making comments such as, “He’s nutty”, or “He’s bananas”, or “He’s away with fairies” is totally inappropriate and, in psychiatry, might be described as “incongruity of affect”.
Age Concern and Help the Aged wanted a stronger emphasis on research in the report, as the noble Baroness, Lady Murphy, and my noble friend Lady Perry have emphasised. They want the same level of investment in dementia research as currently exists for research into cancer and heart disease. The Alzheimer’s Society compared research papers on chronic disorders and found that since 2002, 23 per cent were devoted to cancer, 17 per cent to cardiovascular disease and only 1.4 per cent to dementia, to which my noble friend Lady Perry alluded. More research is needed into preventing dementia and slowing down the development of the disease. There is always a need for more emphasis on training doctors and nurses in this subject, especially as one-third of the people in hospital beds are elderly, with mental health problems in addition to the illness that brought them into hospital in the first place.
As the noble Baronesses, Lady Thomas of Walliswood and Lady Barker, have said, there is a great need for a much more comprehensive approach to the whole problem. I think that the report might usefully have emphasised what millions of carers can do right now, without any extra expenditure, to improve the quality of the lives of these patients.
An exciting recent development in the management of dementia is the widespread adoption of the SPECAL method, which stands for specialised early care for Alzheimer’s. It is based at Burford in Oxfordshire and was developed by Penelope Garner. It has been validated in the past by the Royal College of Nursing and the Care Consortium of the Alzheimer’s Society. I am grateful to the clinical psychologist Oliver James for a tutorial on this subject. His book, Contented Dementia, describes the method which is now used all over the country, with carers and professionals now able to provide 24-hour well-being. It is the only management method which seems to confer contentment. A 2005 review published in the Journal of the American Medical Association shows that none of the conventional methods is very helpful, which is presumably why there is such a heavy use of antipsychotic medication for these people.
There are now dozens of centres throughout the country which train carers in this SPECAL method. In cost-benefit terms it has massive implications: it reduces the need for emergency care, eliminates the necessity for antipsychotic medication and relieves the stress of carers. Without any impetus from Government, coming up from the grass roots, SPECAL is rapidly becoming the best accepted way of managing dementia.
Penny Garner, the founder, uses the analogy of a photograph album. If you think of the individual photographs as memories, then in a healthy individual the album is full. But in Alzheimer’s sufferers, many new experiences fail to get stored as photos in the album at all. The recent pages of a sufferer become increasingly blank, while the earlier ones remain intact. Suppose your husband tells you at breakfast to book some cinema tickets and you agree to do so. Unbeknown to you, your dementia means that this discussion has not been stored in the album. When asked about the tickets in the evening, you have no record of the original plan. You may get annoyed at being “wrongly” accused of having failed to carry it out. You become angry, then confused and scared.
Penny argues that the distress is compounded by well meaning attempts to remind the sufferer of what they have forgotten. Nellie, aged 81, was creating mayhem by wandering around the house and garden. In response, her fiercely loyal, military-trained husband, Richard, was providing detailed lists of what she had to do that day to “get the old girl sorted out”. This is the standard response, known as reality orientation. But it usually results in the sufferer thinking, “Why is this person constantly telling me my name? Are they mad?”. Instead, Penny Garner gets alongside the sufferer by finding out what used to be in their album. Extensive evidence from brain scans now proves that although short-term memory is damaged, the long-term memory is largely or completely intact. So Penny ferrets out from the family members the emotional places where they liked to be, stored in the long-term memory. Using this as a context, and taking the lead from the sufferer, Penny enables them to live almost all the time in a happy place. She “makes a present of the past”, as she puts it.
Gardening was Nellie’s happy context. With SPECAL’s help, Richard provides clues from her album which remind her of pruning flowers, so secateurs were placed all around the house. Soon she stopped drawing blanks; instead, she would wander around the house on the way to the garden to do some pruning. Mostly, she never got there, waylaid by discussions about the best implements for pruning, moving from one pair to the next. Living this happy way her mood improved dramatically. By finding benign, historical context, SPECAL creates a lifelong sense of well-being, rather than the rage and confusion that are triggered by the conventional responses to dementia. Oliver James states that dementia does not need to be hellish as it is possible to create a sense of well-being for the rest of the patient’s life. The person with dementia can no longer reliably store new facts but does continue to store feelings in the normal way.
The noble Baroness, Lady Gardner of Parkes, drew attention to the value of practical advice. Penny Garner found that the following advice is helpful. First, it is important to realise that people with dementia find it difficult and frustrating to answer questions. This is due to their impaired ability to remember. The solution therefore is to avoid asking them questions. Secondly, as their long-term memory is usually intact, one should concentrate on their long-term memory and celebrate it. Thirdly, always agree, never argue should be the policy at all costs. It does not really matter if they believe that a dead relative is alive or if they think that they are at the airport when they are actually shopping in the supermarket. Fourthly, when the short-term memory deteriorates further it is quite usual for the patient to ask the same question over and over again and it is very easy to become exasperated. The best thing is to be hesitant in answering the question, so when the repeated question is, “What day is it?”, one says: “Well, let’s see, um,” then look at the watch or the calendar and say, “it’s Wednesday”—actually it is Thursday. One does all this without appearing to be patronising in any way. We need to identify pleasurable themes from the past to help them make sense of the present. For example, it is possible to spend much of the day planning to watch a favourite old film. Routine, based on life well before the dementia developed, is very important and, if at all possible, once established should not be altered.
In conclusion, may I repeat that Alzheimer’s disease does not need to be hellish as it is possible to create a sense of well-being for the patient. The methods advocated by the charity, SPECAL, are much better than smothering the patients with excessive drugs.
My Lords, I congratulate the noble Baroness, Lady Murphy, on securing today’s important debate on the National Dementia Strategy. There can be no doubt that dementia is one of the most challenging issues we face as a society today. This has been a classic debate in your Lordships’ House and there has been enormous expertise as well as enormous compassion in many of the contributions. It has been a privilege to listen to the debate and to answer it.
The scale of the problem has not been underestimated by the contributions of noble Lords. It is a devastating illness with major consequences for the people who develop the condition and for their families. The noble Baronesses, Lady Perry, Lady Thomas and Lady Warnock, spoke with enormous eloquence about the painful nature of this disease. As a society, because we are living longer, it increases the likelihood that we, or someone we care for, will be affected by dementia at some point in our lives.
Dementia is one of the main causes of disability later in life, ahead of some cancers, cardiovascular disease and stroke. It is estimated that there are already around 700,000 people with dementia in the United Kingdom, a figure that is set to double in the next 30 years. The direct costs of dementia to the NHS are approximately £3.3 billion a year. The overall annual economic burden is estimated to be £14.3 billion a year, or £25,391 per head. The estimated prevalence of dementia in people aged over 65 living in nursing homes is between 66 per cent and 80 per cent, with similar rates in care homes. To deal with this growing problem, it is right that we develop the services to deal effectively with dementia while ensuring that people with dementia and their carers are treated with dignity and respect and receive the support that they deserve.
The publication of the first ever National Dementia Strategy this February was an important milestone in raising dementia up the agenda and giving priority to improving dementia services and raising the quality of care. The content of the strategy was welcomed by a wide range of the stakeholders involved. I am glad to say that it has received support across the political spectrum. The praise it received is a direct consequence of the extensive and detailed consultation that took place in preparing the strategy.
The shortcomings of existing dementia services have been well documented and mentioned today. It should be recognised that many people with dementia do receive wonderful support from dedicated health and social care teams who provide high quality care. A good example is the Croydon Memory Service, which the Minister for Care Services will be visiting shortly. We are working to ensure that this sort of provision becomes the norm rather than the exception that it is at present.
The National Dementia Strategy provides a strategic framework within which local services can deliver quality improvements to dementia services and address health inequalities relating to dementia. The strategy has 17 key objectives and we do not apologise for that number of key themes. I very rarely disagree with the noble Baroness, Lady Barker, but on this occasion I will as I think the strategy hangs together rather well. It does address many of the issues that were raised by the noble Baroness and by other Members of Your Lordships’ House.
The first theme is one that was referred to by many noble Lords—raising awareness amongst professionals and the general public alike. It is a vital component if we are to make progress. If we are to challenge the stigma and the taboo that was mentioned by the noble Baroness, Lady Warnock, we need to improve people’s understanding, remove the level of stigma that exists and tackle the misconception that dementias are untreatable. The Department of Health has already provided funding of more than £500,000 to support the Alzheimer’s Society’s “Worried about Your Memory” campaign. A range of materials has been issued to all GP surgeries in England to help raise awareness of dementia in the general public and better to inform those concerned that they may have the early signs of dementia. A further £1 million is to be made available later this year for more work on raising public awareness.
The second theme of the strategy addresses early diagnosis and intervention, mentioned by most of the noble Lords who contributed to the debate. The lack of early diagnosis, and services to deliver it, is a major problem and one where action clearly needs to be taken. Only one third of people with dementia ever receive a formal diagnosis. That is unacceptable. A core aim therefore of the dementia strategy is to ensure that effective services for early intervention are available on a nationwide basis.
The third theme is improving the quality of care, again mentioned by many noble Lords. We are at the beginning of a process of implementing the National Dementia Strategy over a five-year period. It is backed by £150 million of initial funding. I stress that this is initial funding as £150 million would not be adequate if it was all that was there. The Government’s aim is for services to transcend existing boundaries between health and social care, as well as between service providers and people with dementia and their carers. We will be addressing the vital issue of training and development for NHS and social care staff who come into contact with people with dementia. I take the point that one noble Lord made that this does not just concern people working in social care or who nurse people with dementia, but includes most health professionals—dentists and so on.
There are already examples of good local training in dementia taking place across the country. We need to standardise this and ensure that everyone working with people who have dementia is aware of the signs and symptoms of the disease. We will be working with the royal colleges and professional bodies to ensure there is appropriate training on dementia in undergraduate and postgraduate training in both health and social care courses. The noble Baroness, Lady Thomas of Walliswood, and my noble friend Lady Pitkeathley particularly mentioned the training of home care staff and carers. I absolutely take their point.
We have made headway in terms of vocational training for social care staff. Skills for Care has produced guidance on what care workers need to know and the skills that they should possess to provide good-quality dementia care. Similarly, the General Social Care Council has recommended that all domiciliary care workers should gain a relevant qualification on entry to the social care register. That will help to drive up standards and ensure that staff working with dementia sufferers are properly trained. The noble Baroness, Lady Greengross, was concerned that that should happen, and she is absolutely correct.
We will make extensive use of national levers, such as the Joint Strategic Needs Assessment, local area agreements, the NHS operating framework, the commissioning framework for health and well-being and the world class commissioning programme, to ensure that the strategy is fully implemented locally and that services improve as a result. I hope that that addresses the question asked by the noble Baroness, Lady Murphy, at the very beginning of this debate about how we would ensure proper implementation. We intend to use the levers that we have established to drive that forward.
Improving dementia services is not just a matter for central government—it is a matter for local government, NHS managers, frontline practitioners and, vitally, those who use health and social care services. Neither is it just a matter of funding for dementia services. It is as much about how all the players involved can learn from best practice better to meet the needs of those suffering from dementia and their families. We must recognise that, in practice, the pace of change brought about by the implementation of the strategy will vary, depending on where services are at present. Some areas will have achieved all the strategy’s aims and objectives within the five-year implementation period. Those starting from a low base may take longer. Our job is to drive that forward, monitor it and ensure that we are giving local services the right kind of support so that they can deliver the right services. We have every intention of ensuring that that is the case.
To help make the changes needed, we have already set up a nationwide support programme with expert regional teams working closely with the NHS and local authorities in implementing the strategy. Their particular focus will be on supporting those services that are starting from a lower base and need most help and guidance. I should also mention that the department is currently setting up demonstrator sites to provide evidence on the role of dementia advisers and peer-support networks. Bids from more than 100 PCTs and local authorities were received to run these sites. This work is progressing well, and we will be announcing the chosen demonstrator sites in early July. I am pleased to be able to tell the noble Baroness, Lady Murphy, that we are addressing the important area of research into dementia, looking at our future need for research relating to the causes of the illness, potential cures, treatment and care for people with dementia. I hope that that partly addresses the issue raised by the noble Baroness, Lady Barker. I was recently able to attend an enormously helpful round table discussion on this chaired by the noble Baroness, Lady Greengross, and I am very glad that she has also agreed to chair the Government’s dementia research summit taking place on 21 July.
The summit will involve key researchers from all the relevant aspects of research, from the UK and abroad, as well as people with dementia and their carers. We believe that it will provide us with a better picture of the current body of research, where there are gaps in our knowledge, and what the priorities should be in focusing on research effort. The noble Baronesses, Lady Murphy, Lady Barker and Lady Greengross, asked whether I could assure them that the dementia research summit will provide a future strategy. I promise that that is our intention. The Medical Research Council, which is jointly running the summit, will produce a framework for the future of research and will take account of the conclusions reached at the summit and the gaps that are identified.
National clinical leadership for the strategy is of course of huge importance, and will be provided in future by a new National Clinical Director for Older People and Dementia. The post has recently been advertised and we expect it to be filled in the autumn. I should stress that there is much that needs to be done locally in terms of leadership to drive forward implementation. The strategy makes very specific recommendations on the need for better leadership in hospitals and care homes. We want to see the identification of a senior clinician in all general hospitals and an appropriate member of staff in care homes to be given the specific responsibility of ensuring good quality dementia care.
I now turn to some specific points raised by noble Lords. I will try to address them all in my remaining time, but if I do not address everything, I promise to go through the debate and write to anyone who has not had their question answered. The noble Baroness, Lady Murphy, raised the issue of how the Government intend to monitor spending and implementation. I think that I have addressed that point, but Objective 17 of the strategy calls for good quality information to be made available on the development of dementia services, so it is definitely integrated into the strategy. The noble Baroness also asked about the All-Party Parliamentary Group on Dementia report on training. I know that we are not allowed to use visual aids, but I read this report as part of my briefing and we know that improved training for all those involved in dementia care is a core part of the national strategy. Our challenge is of course to change the undergraduate and postgraduate curriculum for professional and vocational training, as I have already mentioned.
My noble friend Lady Pitkeathley quite rightly made the link between the National Dementia Strategy and the Carers Strategy. It is of course essential. Family carers are central to the National Dementia Strategy and I can confirm that those developing the strategy worked closely with those working on the Carers Strategy and will continue to do so as we enter the implementation stages of both those strategies.
My noble friend and the noble Baroness, Lady Murphy, both referred to the Green Paper. I will repeat exactly what my right honourable friend the Secretary of State said in another place:
“In early July, we will publish a Green Paper setting out options to reform the care and support system”.—[Official Report, 23/6/09; Commons col. 656.]
I suspect that the date will be nearer that mentioned by my noble friend and the noble Baroness, Lady Murphy, but I am not allowed to mention any date specifically.
My noble friend continued to make the point about carers and I should like to add to my remarks that the £150 million available to PCTs in addition to the £25 million available to councils to help them to provide short-term cover in emergencies may help to reassure them. By March 2011, we will have invested £1.7 billion to councils to support carers.
The noble Baroness, Lady Perry, made a most moving speech and I felt privileged to listen to it. Most eloquent in terms of the description of her husband's dementia was the plea for information. I completely agree. We are determined that that is part of the strategy and that we need to deliver it. I am completely at one with the noble Baroness about that.
The noble Baronesses, Lady Thomas and Lady Greengross, both raised the issue of anti-psychotic drugs. The Government agree that the potential overuse of anti-psychotic drugs for people with dementia is a serious issue. The department is undertaking a review of the over prescribing of anti-psychotic drugs for people with dementia in care homes. That follows emerging evidence that such drugs were being prescribed excessively and inappropriately. The review remains a priority and we will publish the results shortly.
The noble Lord, Lord Rix, raised the issue of dementia and people with learning difficulties. He was completely correct about the need for the dementia strategy to explicitly include those with dementia who have learning difficulties. Indeed, it does. Of all the people who present problems, it is very important that early diagnosis and appropriate care is there for people with learning disabilities. The noble Lord quite rightly pointed to the shortcomings. The National Dementia Strategy is designed to change that and good quality care for people with learning disabilities and dementia will quite clearly require joint working and a specifically tailored approach. We are discussing that, as advocated by the royal college. The implementation strategy will provide some of those solutions.
The noble Baroness, Lady Warnock, raised an interesting issue about stigma and taboo. It was a point very well made. The noble Baroness also raised the issue of early diagnosis. She is completely correct. Our strategy is clear about the need for early diagnosis for all those with dementia. One of the reasons is that this gives people the ability to make choices themselves while they have the capacity. It gives people with dementia the chance to discuss their future care and to record decisions about their future care. I can assure the noble Baroness that the diagnosis of dementia does not mean that a person lacks the capacity to make such advanced directives for information about their future care. In fact, that is extremely important.
I always love listening to the speeches of the noble Baroness, Lady Gardner of Parkes. They are always informative; they always make a pertinent point; and they are always very human in what they relay to us. She was completely correct, and illustrated it with the points that she made, that early diagnosis is absolutely the key.
The noble Baroness, Lady Greengross, referred to money for research. We know that it is not sufficient and that there is much more work to do on that. I am extremely pleased that the noble Baroness is chairing the summit on science and research. I very much enjoyed the round table that she organised the other day, particularly when the group was discussing GP diagnoses. It is an issue that is being raised by many noble Lords. I was very struck by the remarks made by Professor Steve Iliffe about the problems that GPs themselves face in making the diagnosis.
The noble Baroness, Lady Howe, made an important point about the role of employers in this matter. She was the only person who made that point. I agree with the noble Baroness about the value of the Alzheimer’s Society and the work that it does. As ever, the noble Lord, Lord Walton of Detchant, gave us a master class in the research and the science of research. I really appreciated the message of hope that he left us with at the end of his remarks. I thank him very much for doing that.
The noble Baroness, Lady Barker, made a very pertinent point about the cancer plan being a very good model and about how one takes this forward in terms of research. As ever, the noble Lord, Lord McColl, had something unusual to say. I remember reading about the programme in a Sunday newspaper and being very struck myself about the imaginative nature of that programme.
We have had an excellent debate today. I thank noble Lords very much for their contributions. I congratulate the noble Baroness again on giving the House the opportunity to discuss this important issue. The National Dementia Strategy is an excellent document that spells out the full range of changes that need to be made. These changes will not happen overnight. However, the Government are fully committed to their implementation. An excellent start has been made in creating the dementia services that we can all be proud of in the future.
My Lords, I thank the Minister for her very helpful response. With that little hint of more money to come, I feel even more optimistic. I am very grateful for the wise contributions that have been made to the debate today. The personal story of the noble Baroness, Lady Perry, has moved us all and reminds us that we cannot take away the personal tragedy for the people who love those who suffer from this condition. We can, however, hope to improve it substantially with good care treatment and proper research. I beg leave to withdraw the Motion for Papers.