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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.

12.20 pm

Lord Rix: 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.

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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,

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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.

12.27 pm

Baroness Warnock: 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

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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

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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.

12.37 pm

Baroness Gardner of Parkes: 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.



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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,

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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.

12.45 pm

Baroness Greengross: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

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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.


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