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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
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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.
11.54 am
Baroness Pitkeathley: 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
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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
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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.
12.02 pm
Baroness Perry of Southwark: My Lords, I, too, thank the noble Baroness, Lady Murphy, for introducing this timely debate in such a brilliant and comprehensive
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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
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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
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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.
12.11 pm
Baroness Thomas of Walliswood: 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.
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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
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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?
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