Proceeding contribution from John Pugh (Liberal Democrat) in the House of Commons on Wednesday, 24 October 2007. It occurred during Adjournment debate on Dementia Sufferers.
Dementia Sufferers
I congratulate the hon. Member for Rugby and Kenilworth (Jeremy Wright) on raising this issue and putting his case so well. He made a number of highly specific requests. I hope that the Minister has written them down because they are entirely deliverable. I think that everyone has a personal tale to tell about dementia, often involving their own families. My personal memories go back to a gap year and working on a geriatric ward with some people with fairly extreme cases of dementia. Three tragic cameos stick in my mind from that time. I remember trying to stop an individual quite unknowingly eating a bar of soap by trying physically to take it out of his hand. I remember struggling to change the soaked trousers of a pre-senile dementia case—someone younger than I am now—and the look of affronted bewilderment and anger on his face as he came to terms with what was being done to him. I remember another man who had entirely exhausted the efforts of his caring family because he was inordinately restless. He was admitted to hospital and acted with similar manic restlessness in the ward, fiddling with other people's belongings and moving from place to place. One day, the staff and patients could take no more and he was put in a chair with a bar across it. Five days later—and after hours of struggling—he died, exhausted, of a heart attack. We never saw him again. That is the rough end of dementia, and we all accept that it is a huge problem. Some say that it affects half a million people, some say more. As we have heard, there is no identifiable cure and the situation is likely to get worse. Wanless has told us that there will be millions of suffers and that the cost will be billions of pounds. As is the case for most illnesses of age, dementia is a disease of degrees, ranging from forgetfulness to complete personality disintegration and regression, with a loss of control over bodily functions and the loss of all sense of time and place. It therefore makes differing, yet always distressing, demands on carers and the caring services. The size, scope and nature of the problem are relatively well understood. However, the life of individual patients who have the problem is not as well tracked. Most dementia patients visit a number of different organisations under the health service because of their complaints, not all of which are to do with their dementia. They interact with a multiplicity of agents and local government, NHS and voluntary bodies. They see their GPs, and they might see people from a mental health trust and those from the acute trusts who deal with physical problems. Also, of course, they see social services for one reason or another. A flaw in their general care is that no single organisation has overall responsibility for managing their condition, or even ensuring that the information held by one organisation is shared with others. There are genuine difficulties. The hon. Member for Rugby and Kenilworth referred to the National Audit Office report, which the Public Accounts Committee, of which I am member, discussed on Monday. The report showed some disturbing facts. It established that GPs were less confident in diagnosing dementia than before. That is partly because they are under pressure to diagnose at an earlier stage than hitherto, and they are possibly reluctant to give people prematurely what may be a fatal diagnosis. Diagnosis in care homes is weak, with 62 per cent. of people there suffering from some form of dementia, although that is not necessarily on the records. Equally disturbing is the fact that although many sufferers are admitted to a general hospital for physical conditions, a correlative mental health assessment is not made at the same time. That would be an easy place to pick up the problem and to deal with its symptoms. One could be quite brazen and say, ““Does that really matter? After all, the outcome is inevitable and it is not good.”” When pressed on that question the other day by the Public Accounts Committee, David Nicholson and his officers were emphatic on that point and said that it did matter how early a diagnosis was made or attempted. Research shows that early diagnosis has an appreciable affect on the standard of care, even if it does not do much by way of a cure. It slows progress, so people can be put in touch with memory clinics and the like. All that is good and, given the will, it is something that the Government could advance. The hon. Gentleman also made the point—I think that he has stolen some of my thunder—about the need for one person to be solely responsible for the condition of specific patients. The Public Accounts Committee gave that idea a warm welcome. We need better community management of the condition, which is certainly prevalent. A single reference point for carers would be more than helpful. I suspect that the reference point would be not the GP, but a specialist attached to a practice who was trained in geriatric medicine. That is not the only way in which the aim can be achieved, but there is certainly a need for a single reference point. Under the quality and outcomes framework, GPs are financially incentivised to treat dementia. QOF points are gained through the way in which GPs manage the condition and report on it. I am less than convinced that the outcomes of the framework are rigorously evaluated and that people are properly rewarded for doing the right thing, with poor practice identified and monitored and good practice properly rewarded, and good practice not only encouraged, but spread. Dementia patients often have a multiplicity of problems. Dementia is an illness of age, and with age comes other ailments. Dementia patients have particular difficulty in getting across to the doctor that they have a possibly serious physical condition that has nothing to do with their dementia. We know that dementia patients can suffer mental health problems that are not directly related to dementia. For instance, it is understandable that one could be depressed when demented. It is inappropriate to treat only for dementia, not for depression. We also need to improve the care in care homes, which was another point raised by the hon. Gentleman. Figures show that 28 per cent. of care homes have specialist places. However, something like 62 per cent. of those in care homes have dementia, which probably means that the bulk of the staff looking after them are not specifically trained. Indeed, as the NAO makes clear, those staff are not all good English speakers. The Minister will understand that the big move in care homes to keep wages down often involves a high use of immigrant labour. Some such staff are well qualified and very good at the job, but from time to time there will obviously be communication difficulties. Some 40 per cent. of dementia sufferers in care homes are treated with neuroleptic drugs. In some cases that is wholly appropriate, but some situations that are chemically managed could be treated in other ways. There is good and bad practice in nursing homes and care homes. Good practice should be spread and bad practice eliminated, when possible. That brings me to the topic of elder abuse, which relates not simply to dementia. One shocking figure suggests that 500,000 people are the victims of abuse in the later stages of life. It has to be said that they are usually abused by people in positions of trust, and often in the home. Abuse has an extraordinarily broad definition. Not only are those being cared for being abused, but sometimes those who have dementia or Alzheimer's are capable of making life very uncomfortable for carers themselves. Indeed, 33 per cent. of care givers claim to have been abused at some time. It is certainly an area in which training, understanding and support is sorely needed and required for all involved in the process. Ultimately, we all accept that there are no magic solutions. There are a number of helpful steps that the Government could take immediately. However, good things do happen. We need research breakthroughs and better drugs. There has been a lively debate about what drugs are available in certain places for dementia sufferers. I accept that for reasons that we do not properly understand, some drugs work for certain people but not for others. Considerations of value for money are also involved in the use of certain drugs across the piece. None the less, we need to investigate further why some drugs obviously work for some people but not for others, as is suggested in carers' reports. I cannot pass over the fact that we have had only a paltry 1 per cent. increase in the supporting people budget. That will create a monumental headache for local authorities such as mine. The large number of elderly people living in the area is not reflected in the funds available for treatment. We all support increased respite. We all want to see quality care, not the cosh of the drug, as it were. As the hon. Member for Rugby and Kenilworth said, we also want better integration with voluntary bodies, which play a valiant and necessary supplementary role in developing care across the piece. Finally, we need more research investment. Beyond that, however, there is a bigger public health agenda. We must all face the fact that mental decline is a side effect of ageing, and we all suffer it to a degree— some more, some less. The effects are not the same across the board, however, and they can be accelerated or retarded by lifestyle. That is where the public health agenda interacts with therapeutic endeavour. An awful lot of work still needs to be done on that, and the Government recognise that to some extent and are setting about doing something. If the concept of good old age is not an oxymoron, it is certainly an ideal and one that we should hold. In our ageist society, sadly, it is one that has yet to be recognised.
Secondary information
- Type
- Proceeding contribution
- Reference
- 465 c108-11WH
- Session
- 2006-07
- Chamber / Committee
- Westminster Hall
- Subjects
- Carers Dementia Alzheimer's disease Diseases Home care services Medical treatments Mental health services Research
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- View this Proceeding contribution on www.publications.parliament.uk
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