Alzheimer's Disease (Hansard, 9 April 1984)

§ Mr. Richard Holt (Langbaurgh)

One thing that all hon. Members would agree, irrespective of politics, is that we wish each other long and healthy lives. In doing so, we always regard our responsibilities and duties to society.

There is today a slowly growing awareness of a disease called Alzheimer's disease, which was first diagnosed in 1907 and which has taken 75 years to become the subject of comment in the House. Alzheimer's disease is the most common form of dementia. It is incurable and irreversible. Dementia is a progressive decline in the ability to speak, to think, to remember and to learn, with an accompanying loss in the capacity for deliberate actions and movement. A once active and responsible adult will no longer remember his spouse and children, will not be able to maintain even a simple conversation, will become disoriented, even in the familiar surroundings of his home, and completely incontinent. In short, as an adult, he will revert to infancy.

Dementia is not a normal part of the ageing process. Rather, it is a disease with a variety of causes and a wide range of symptoms. The likelihood that an individual will be affected by a dementing disorder increases with age, but this does not mean that it is inevitable.

Alzheimer's disease and stroke-associated or multi-infarct-dementia, which together account for 85 per cent. of all the incurable dementing illnesses, should be diagnosed only after the exclusion, by a series of tests, of other causes of the problem, such as poor nutrition, metabolic disorders, side effects of drugs, chronic alcohol abuse and so on. Diagnosis of AD, with all its catastrophic implications for both sufferer and family, is too often made without adequate investigation.

It is late and we have had a long day, but I would not be doing full justice to the sufferers of Alzheimer's disease, and more importantly to those who will suffer in future, if I did not to some extent underline the problems by referring to case histories. It would, of course be wrong in any way to identify the affected people. In one instance a man aged 38 —Mr. D, a qualified architect with a large well-known company — contemplated group and individual suicide on learning that he had AD. His wife is totally unable to cope with the change in her family life. That is an unusual and rare case, because it affects someone in a younger age group. Normally, the disease is found in older people. Obviously, the greatest stress affects not only the sufferers but their loved ones.

I have a short letter that I wish to place on record. It states: I am very sorry but your wife has Alzheimer's Disease. Unfortunately there is no cure. A lot of care will be needed. A simple statement. I had stopped work because I could not cope. My wife had shown a lack of interest in household affairs which was quite out of character. After a few months she lost the ability to carry out the most simple household tasks. Any attempt to teach anew was met with anger and tears. Dressing became very difficult, but when assistance was given, she replied with anger and not thanks. This was very perplexing after years of close relationship.

As the disease had progressed, toilet and bathing became a problem. The use of the toilet was forgotten, and I had to insist on regular visits. When assisting with the removal of clothing 174 extreme anger was displayed. The problem is worse when a wife is required to deal with her husband; the stronger and aggressive male usually wins, making the toilet problem a nightmare. My efforts to see to my wife in the bath were frantically resisted. Hair washing was a particular problem, and rinsing off shampoo was rewarded with screams as the water flowed over her face. This was a very frightening experience and had to be handled with care. Toilet problems were at their worst when away from home. My wife quite often entered the conveniences and refused to allow anyone to help her to use the toilet, usually with disastrous results. Such events continue until finally the person ebbs away and dies. That report was written not by an emotional, unrealistic person, but by a senior police officer who had to retire from the police force to look after his wife in this sad and demented state.

The cause of this condition is not known. It is only after a person has died, when there is a post-mortem, that it can be shown absolutely for sure that he has suffered from Alzheimer's disease, but the likelihood is that when the symptoms manifest themselves, the person has begun on a course that ultimately results in death.

There is the mild period, followed by the moderate period, followed by the severe period. The average length of life after the disease has been diagnosed is about two and a half to five years. Some people have been known to live longer, but that means that the deteriorating period is more severe and, equally, that the strain on those responsible for the individual's care is even greater.

In Cleveland, in my constituency, we have today a branch of the Alzheimer's Disease Society which is working wonders in providing a form of adult creche to enable those suffering from the dementia to be brought in and looked after on a daily basis, thereby enabling the carers themselves to have time off, for surely when the disease strikes one member of the family it equally strikes another.

I have known of people who have suffered from dementia and have seen for myself how they have deteriorated and died in a most miserable way. Twelve months ago, before I came to this House, I had never heard of Alzheimer's disease and did not know what it was. It has only recently been brought to my attention. During the past week, since my name appeared for an Adjournment debate on the subject, I have been spoken to by many colleagues, some with knowledge of relatives who have suffered and died from Alzheimer's disease, and others who were totally unaware of what the disease was and what its manifestations caused. It is because of that latter group of people that I have taken the opportunity of an Adjournment debate to bring to a wider audience the need for an understanding of it.

Everyone in society today, I believe, understands what multiple sclerosis is and what the initials MS stand for, and can recognise symptoms in people and know the care that is required. Regrettably, there has been far too much confusion historically between the normal ageing process and Alzheimer's disease, to such an extent that we as a society have failed so far to provide sufficient care, to obtain sufficient knowledge, or to do sufficient research into the subject.

I do not make a special plea for additional funds and resources for Alzheimer's disease over and above the many other worthy causes which require as much funding as they can be given, but I urge upon the Government, upon all hon. Members of this House, and upon people beyond this House, a greater understanding and awareness of the problem. It is one which can and will affect as many 175 as one in 10 of our population. We have an aging population. Therefore, the manifestations will become greater. It is an incurable disease as things stand at the moment. Research is being carried out and many people are now turning their attention to seeing whether there is any way in which there can be a diagnosis in the first instance and a cure in the second. But until such time as either of those things come to pass, it is incumbent upon us to make sure that all people become more widely aware of the problems of Alzheimer's disease and the associated problems for the people who have to care for those who are suffering from that disease.

§ The Parliamentary Under-Secretary of State for Health and Social Security (Mr. John Patten)

I welcome the opportunity presented by my hon. Friend the Member for Langbaurgh (Mr. Holt) to discuss a very important topic of which I think society is becoming increasingly aware. The fact that my hon. Friend has raised the issue on the Adjournment gives me the opportunity, first, to outline the action that the Government are taking in this area; secondly, to indicate some ways in which research is proceeding towards the common goal of us both, the hope of a cure for senile dementia; and, thirdly, to look at the important work being done by voluntary organisations in this field, in particular the work of the Alzheimer's Disease Society. My hon. Friend has a branch of that excellent society in his constituency as I have in mine.

It is important for us all to realise that the disease is not only a dementia; it can also derive from circulatory strokes of one form or another. But, however the dementias are derived, they are all characterised by progressive impairment of the higher brain function, leading to a deterioration in memory, in intellectual function, and in social behaviour. These are some of the things to which my hon. Friend referred in some of the moving extracts in letters from his constituents that he read. There is also deterioration in emotional control and in visual and motor skills. These symptoms are brought about by progressive and irreversible damage to the brain, as my hon. Friend said. Most of us will know from personal family experience—either our own families or those of our friends — and from our constituency postbags how terribly damaging the consequences of this form of dementia can be for the families of those who care, often in the home, for the suffering from Alzheimer's disease. We also know how terribly damaging the consequences can be on the sufferer himself, or, more commonly, herself, because most of the very elderly population are women, as are those looking after the sufferer.

Alzheimer's disease, with other conditions involving senile dementia, is one of the major challenges that we have to face both in the National Health Service and in the social services in the next 20 or 30 years. My hon. Friend will already know that the load of age-related disease has increased enormously, particularly in the past 20 years. For dementia, our best estimate is that the load will continue to increase at about the same rate until the end of the century, when it will probably level off. We shall require a rapid response to a rapidly growing problem.

This problem was not clearly understood or identified until the late 1960s or early 1970s. Since the beginning of 176 the 1970s, there has been a rapid development. Then, most local authorities no longer saw the care of demented people as a task for their residential provision. The new generic social workers of the day similarly put this low among their priorities. In the NHS, mental illness hospitals were providing a growing number of beds for long-stay care of the elderly, but here, too, it was regarded as a routine and rather unwelcome and unstimulating task. The philosophy of the day was that there was not much that could be done for patients who were termed psychogeriatric. All that was needed was the greenhouse philosophy of keeping them well watered, fed and warm until they died. Therefore, they received little medical attention, and the NHS offered little other then long-stay inpatient care.

In the early 1970s things began to improve. Some psychiatrists turned their attention to devoting their care and skill to this group of patients. It became clear that the best form of service was not restricted to those who were receiving inpatient care. Those occupying the beds in hospitals — long-stay residential care — formed only a tiny proportion of those who might be at risk from dementia in its progressive and most disturbing and distressing forms, as was rapidly realised.

The task of the psychogeriatric service today is to provide support and advice to all those in need through domiciliary visits by psychiatrists and community psychiatric nurses and drawing on the help of social service departments, which have taken an increasing interest in these matters.

Since 1979, we have regarded improvements in services for the elderly as a top priority, and, with the help of the Health Advisory Service, we published last year the important document "The Rising Tide". That report was the product of a detailed survey that enabled the HAS to set out models of good practice to be followed by health and local authorities everywhere. To hasten the task of bringing all services up to the level of the best, my noble Friend Lord Trefgarne, who was then Parliamentary Under-Secretary for Health and Social Security, launched what one might call a competition by providing central funds to enable every regional health authority to have a demonstration development district as an example of how to make progress.

There have been some remarkable responses to this challenge. I am happy to tell the House that most districts have put forward to their regional health authorities plans for progress in this area. Many which did not receive the central funding available under the scheme announced by my noble Friend nevertheless have gone forward using their own local funds, and quite rightly, because for too long in the National Health Service we have devoted a disproportionate amount of our expenditure to hospitals. We have not spent enough on the priority groups among other calls on our funds. The elderly, and especially the demented elderly, deserve special consideration.

The plans which have been produced are for local community-based services in which the same teams of professonal staff—social workers as well as NHS staff —can provide care for patients in whatever ways suit the patients best, whether at home, in residential care or in hospitals as the patients' needs change.

It is heartening to be able to say—10 years ago it would not have been possible to report this—that there seems to be no difficulty in interesting able psychiatrists to take up the psychiatry of old age and to accept special 177 responsibility for elderly patients. Equally, psychiatric nursing is becoming an increasingly popular specialty both in the community and in longer-stay frameworks. We welcome that change.

Suddenly, we see a picture where services, albeit imperfectly developed as yet, are beginning to develop to meet the need which is likely to become more pressing over the next 20 or 30 years. There are glimmers of hope. The picture is not dark, and my hon. Friend's speech was full of hope.

Recently, I read a book published by my noble Friend Lord Vaizey entitled "National Health". On page 67 he refers to the problems that society faces from senile dementia. I quote directly from the book, because it is a very important passage. Lord Vaizey writes: Senile confusion and dementia are partly the result of other (often undiagnosed) conditions; depression, for example, is often the cause of confusion. Once the primary condition has been treated, the apparent confusion is reduced. There are now also specific pharmaceuticals which will treat directly the process of senile confusion and possibly dementia itself. Thus one of the curses of old age, a sort of gentle and occasionally violent pottiness, is amenable to treatment. So, too, is the other curse, incontinence. Most people are aware that colostomies can be treated by means of a bag, but the use of catheters, which now often lead to infection, will be much improved, as will other techniques. The distress of incontinence may well be substantially alleviated as a result. Thus looking after the elderly will be not only a challenge but also an opportunity, having little to do with 'medicine' itself, as conventionally understood, but a great deal to do with the social arrangements made to cope with their problems. There is a great deal of truth in what my noble Friend says.

In all this, research is critically important. I am glad to say that the topic of senile dementia is now attracting a good deal of research interest. The Medical Research Council is currently funding research at its brain metabolism unit in Edinburgh, at its neurochemical pharmacology unit in Cambridge and at its cyclotron unit at Hammersmith hospital. If the MRC researchers or some other researchers succeed in future years in unravelling the 178 complicated anomalies of brain chemistry which seem to be at the heart of the problem, it may well be possible to develop some form of remedy, rather as we can already compensate for the chemical deficiencies which cause diabetes. Today that is no more than a hope. Tomorrow, perhaps within the next 10 years, that hope may turn to reality. Meanwhile, less fundamental research can help us to find the best ways of caring for patients.

In that context there is the growing and invaluable work of the Alzheimer's Disease Society, which I am glad that my hon. Friend mentioned. It is a comparatively young body, unlike the disease, but it is doing valuable work, particularly in the counselling and support that it is able to give to families who face this serious problem. It is our duty to do what we can to care for the carers and not simply to leave it to statutory services. I am sure that my hon. Friend will be glad to know that the Alzheimer's Disease Society is one of the bodies which we centrally fund under section 64 of the Health Services and Public Health Act 1968.

I welcome the opportunity that my hon. Friend has given us to discuss this important subject. The name may be new, but the problem is old. It is just that we are now able to identify it much more easily than we were before. The name is not just a new fashion. Research in the past 10 years has made it clear that we are not talking about an inevitable last stage in the human lifespan. We are talking about a disease and the NHS and medical science are searching for cures for such diseases. Senile dementia is not some inevitable progression in the ageing process. It can, should and must eventually be reversible. We must work through research to prevent its ravages and we must in the meantime do all that we can to provide the best care to those who are suffering its ravages now.