Dealing with dementia

Print edition : September 11, 1999

"Memory loss, considered normal among the elderly, is actually a disease that needs to be treated," says Dr. John Copeland, founder-director, Institute of Human Ageing, Liverpool. Dr. Copeland has all through his career worked towards understandin g and measuring mental illnesses. However, since teaching took much of his time (he held the Chair in Psychiatry at the University of Liverpool until his retirement in 1997), he could not devote much time to research. Yet research, which he began to purs ue after his initial training in psychiatry in the United States, remained his first love. Beginning with a U.S.-U.K. diagnostic project supported by the National Institute of Mental Health, Washington, Dr. Copeland kept in touch with state-of-the-art re search in mental illnesses and published over 50 articles in journals and books. After retirement, he turned to full-time research.

Dr. Copeland standardised the diagnostic techniques for many mental illnesses. These included procedures to measure the geriatric mental state (GMS), for which he devised a computer-aided system.

Dr. Copeland, who was recently in Chennai to train doctors, psychologists, psychiatrists and health workers in the measurement of GMS, spoke to Asha Krishnakumar on the symptoms, diagnosis and treatment of dementia. Excerpts:

What is dementia, and what are its symptoms?

Dementia is a slow decline in what we call cognitive functions and memory. Memory loss is usually the most obvious symptom. All of us lose memory to some extent as we grow older; most people over 30 would have at one time or the other forgotten some name s. The harder you try to remember, the more difficult it becomes to recall. Then suddenly, it comes to you in a flash when you are not thinking about it.

Then comes a situation when you cannot remember where you have kept things, and spend a lot of time searching for them. We consider that normal. But for some reason, which we don't understand, ageing affects memory and, to a lesser extent, the other func tions of the brain.

When people begin to forget the names of their family members and friends, causing difficulty and confusion, memory-loss becomes a serious problem. I think that is when the serious problem of dementia begins. The progress of loss of memory in dementia is very quick. Usually, within six months to a year, there is a serious loss of memory.

The symptoms can vary slightly. The problem begins with an immediate loss of memory, for instance, forgetting where the car is parked. Then, gradually, other symptoms and memory problems occur. People begin to have difficulty calculating numbers, working out finances, finding the right word and, eventually, they may even have difficulty in putting on their clothes because they have forgotten how to. Some tend to put on clothes upside down or inside out. Eventually, they become quite immobile. It is a sa d and tragic condition.


Is dementia specific to any intelligence level or social group?

It affects people of all intelligence levels and social groups. It is also not confined to any age group, except that certain varieties tend to run in families and occur much earlier in life, any time after 30. The more common types occur around 70 years , and the incidence increases with age. So, at 90, the strike rate can be one in three people.

It is, of course, easy to confuse dementia with normal ageing. In all cultures, memory loss is seen as the final stage of ageing. Earlier, when some people aged faster and went into the child-like stage of dementia, they were said to have become senile. Now we know that it is a disease. Therefore, we ought to be able to tackle it and cure it. There is a lot of research going on to identify the different varieties of dementia.

What are the different types of dementia and when can each be diagnosed?

There is Alzheimer's disease, named after Dr. Alzheimer who first described it. It progresses steadily in a short period of time. You can detect it from within a year or two to almost 10 years of its occurrence. There is another kind which fluctuates. Th is seems to be associated with vascular problems. There is now the new one, the Lewy Body. This was discovered by Dr. Lewy. Apparently this is not very dissimilar to Alzheimer's disease, but if you look through a microscope at the brain of a person with Lewy Body, it shows lumps in the brain. Also, people with Lewy Body sometimes react very badly to drugs.

What are the rates of incidence of the different types of dementia?

In Liverpool, when we looked at the pathology of the brains donated by people for research after death, we found that Lewy Body was a rare condition. The commonest form was Alzheimer's disease. We don't know much about it, except that it is hereditary. W e know people who have lived up to 90 with that genetic make-up although they did not have more than a 50 per cent chance of living beyond 50.

These early studies were based on hospital data. But only when we did community studies to see its distribution in the population did we find that the genetic make-up we know of was not as clear a factor as we thought it was. There may be other genetic f actors, which have not been discovered. However, what we know now makes a considerable difference to our understanding of the problem. Yet it doesn't explain most cases.

What are the different kinds of treatment for dementia?

There are several types of treatment. For instance, when the brain deteriorates, you lose some chemicals. You need to give drugs to compensate for the loss and improve the condition. There is evidence that this process helps, though not dramatically. How ever, none of the drugs now available makes a big impact. They do not cure, they simply replace the lost chemicals.

There is a group working on drugs that arrest the disease. We now understand a lot about the chemistry of the brain and what happens to it in old age. So, efforts are on to intervene in this chemical process in order to stop the disease. Many drug compan ies have invested money in this research. However, nothing has come out of it yet.

How does one manage people with dementia, particularly with the breakdown of the joint family system where the extended family used to take care of the elderly?

The major problem is looking after these people. Traditionally, as you said, they were looked after by the joint and extended families. This was the case all over the world. It is a myth that people in the West do not look after their elderly. The breakd own of the extended family is therefore going to create a major social security problem all over the world.

With life expectancy at birth improving considerably, there will also be an increase in the proportion of the elderly in the population. With this the incidence of dementia will also increase. What are the issues involved in the management of dementia a country like India has to address?

The population of the world is set to change and there is going to be a higher proportion of older people. Two decades ago, the Queen of England used to send about a hundred telegrams to people completing 100 years. Now she sends 4,000.

In Norway, the population aged slowly over the last 100 years. So they had 100 years to prepare themselves to face the problem. But in countries such as Brazil and India, for instance, the proportion of older people had hardly risen until 10 years ago. B ut subsequently, it rose sharply. The projections for the future are also very sharp. These countries now have to look seriously at the economic and social implications of this problem for society.

Another important need is to diagnose the disease in the early stage. Otherwise, even if treated, those affected by it may be left disabled to a certain extent. So it is important to focus on questions such as how to recognise the symptoms.

What are the problems in diagnosing dementia? How did you work out the computer-aided system of diagnosis?

There is a general worry about the differences in diagnosis, particularly of the younger people, in the U.S. and the U.K. In the U.S. there were high levels of schizophrenia cases recorded in hospitals. But that was not the case in the U.K. The U.S. gove rnment was worried. So, I and my colleagues were asked to look at this problem. We did a study, comparing the diagnosis on admission to hospitals in both countries. We found no difference in the number of cases at that time when we applied our diagnosis in the U.S. So it was clear that the American diagnosis was very different from the European. And partly out of that study an interest grew in the U.S. and the U.K. in looking at diagnostic issues - trying to bring some science into what was until then a clinical impression.

With help from the U.S. government, we started looking at the diagnostic problems among the aged. A large number of people were apparently going to American hospitals with dementia, while a much higher proportion went to English mental hospitals with dep ression. Again, we were able to show by using the same diagnostic criteria that there was no difference between the two. Many of the cases that were diagnosed as dementia in the U.S. were diagnosed as depression in the U.K. In fact, when patients were tr eated for depression in the U.S., they got better.

Then, in Liverpool, we prepared a detailed schedule and did a survey to get a more accurate recording of symptoms in order to measure GMS. The next stage was to bring consistency into the diagnosis. This was necessary because until then we expected docto rs to do the interviewing and make their own diagnosis after understanding the symptoms.

So we did a survey, and from its results we devised a computer-assisted diagnostic system we called AGECAT (aged geriatric examination computer-assisted taxonomy). This is a standardised method of diagnosis and can help diagnose many diseases, including dementia. After we published this work, many centres in the world showed interest in using this system.

For what other diseases is AGECAT used?

AGECAT gives a range of diagnoses as well as differential diagnoses. People have found that quite useful. It helps in looking at depression, schizophrenia, neurosis and so on. It is now used widely throughout the world.

Some years ago, I realised that there were nine centres in Europe using GMS/AGECAT for population studies. At that time we approached the European Union and asked for funds to set up a programme involving data-sharing by these centres. We used the data p ut out by these centres and published a number of papers showing the prevalence of depression. Recently, 12 medical centres in Asia showed an interest in this and we have brought them together.

India is going to face a major problem with an increase in the population of the aged. Do you plan to include India in your study?

We have just begun our work in India. Eight centres are doing this work. We are trying to bring them together.

I am now looking at ways to get these centres to collaborate with one another without having to spend too much money. This is because there isn't much money in India to spend on this.

Are there no common, obvious symptoms for dementia?

A majority of symptoms are fairly straight-forward. For example, loss of appetite and loss of concentration and memory. So that is why, I think, we don't have a problem. But nevertheless, we have to make sure that we measure the same sort of things the s ame way everywhere. That is the first stage. Once that is done, we can rely on the computer system to give us the diagnosis. Once we collect all the information from all the centres, we can find out what the underlying causes for dementia are across soci eties, and what causes one society to be more prone to dementia or depression than another.

How do you measure the GMS, and how does India compare with other Asian countries and the world?

To compute the GMS, patients are interviewed and all health data recorded and coded. In this, you have to make a judgment about whether the symptoms the patients describe are genuine symptoms. Those data are then fed into the computer. The computer then comes up with the diagnosis - it may say this is an organic condition and may give you the level of severity. Doctors may disagree on the diagnosis. That is why we are now standardising symptoms across countries with the help of surveys. This system seem s to work in Britain, Australia, India and some other countries.

In terms of the incidence of dementia, there is no difference among countries. Using the GMS, we found that incidence levels varied between 4 per cent and 5 per cent in the population above 65 years. This is the result from the surveys done in many count ries by the European group, the Asian group, our group in Liverpool and in India.

What is the state of the art in research on dementia?

An enormous amount of work is going on. Neurochemists are working on brain tissues. They are looking at the chemical structure of the brain and how progressive are the lesions that are formed. Geneticists are trying to discover the genetic qualities of t he population with dementia. They have had one breakthrough, with the discovery of Apo-E 4 (those with Alzheimer's disease). Now they are working towards another. Then there are the pathologists who are looking at the brains of the dead and trying to rec onstruct how they got to that condition. The chemical composition of the brain that leads to this problem is also being studied to help in the early recognition of the condition. People are visualising the brain with magnetic resonance imaging (MRI) and using positron emission tomography (PET) to know the chemistry of the brain.

So a lot of work is going on, but it is slow. The interest started with us in the 1970s. There is a conference on dementia almost every week somewhere in the world. Therefore, there is hope that we will make substantial progress very soon. But the countr ies and governments should not be complacent. As we do not know how long it will take for a breakthrough, we need to be prepared for the social problems dementia causes.

Do you think people should "age gracefully"?

I feel one should not age gracefully because ageing gracefully means that you recede to the background in a dignified way. Why should it be so? At 65 you can still contribute substantially. The elderly people also need an economic and political position in society. Otherwise, they will be squeezed out by the younger generation. There has got to be some balance between the young and the old. Elderly people cannot sit back and let the youth run over them. So, I think you should age "disgracefully".

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