February issue 2010

By | Life Style | Published 10 years ago

“There is some treatment. But it is not very effective”
– Dr Saad Shafqat, Senior Neurologist, AKUH

Q: Dementia and Alzheimer’s are terms that seem to be used synonymously. What is the difference?

A: Dementia is a generic term — it’s like saying somebody has fever and then you have to specify what is the basis of that fever, for example malaria or typhoid. The most common cause of dementia is Alzheimer’s Disease, but there are other causes as well. All forms of dementia are typified by decreased memory and inability to care for oneself because of cognitive impairments. In Alzheimer’s, there is more emphasis on memory while other dementias have more problems with language and executive function. Alzheimer’s is a very specific pathology. A biopsy of the brain shows the brain tissue of an Alzheimer’s patient to be very different from the brain tissue of a patient suffering from other types of dementia.

Q: Is this brain analysis common and easily done?

A: No. In most cases we don’t go through the trouble of doing a brain biopsy. We can diagnose it on the basis of history that the patients and family members provide and by assessing their mental condition through interviews. The leading symptom is forgetfulness, which is typical of all dementias. Alzheimer’s is about 90% of all dementias but the vast majority of all forgetfulness is not dementia. Forgetfulness, to the extent that it starts interfering with your daily routine, is worrisome; five per cent of pathological forgetfulness is vascular dementia which is dementia from having too many strokes that can easily be determined by a brain scan. And then another five per cent is Lewy body dementia where visual hallucinations dominate the clinical scenario and there is stiffness of the limbs which is not seen in Alzheimer’s. Generally, Lewy body dementia and vascular dementia are easily determined and the default diagnosis is of Alzheimer’s.

Q: What are the local statistics of prevalence?

A: [We don’t have] very reliable numbers, but it can safely be said that neurologists or psychiatrists practising in Karachi regularly come across one new case a week.

Q: What is the age of onset?

A: Dementia, in general, is a disease of older people. If you look at the world literature available, people over 65 have a greater chance of developing Alzheimer’s. There is a prevalence rate of about five per cent. As you get older, the risk increases. People in their 90s have a 30% chance of developing Alzheimer’s.

Q: Clinically it is said to be life-threatening…?

A: It’s a progressive disease. It starts with memory loss but gradually the brain starts to shrink as brain cells start to die. You eventually lose the ability to speak, move around, groom, use the toilet on your own, and interact as a regular member of society. When that happens you become a baby once again, and if you are being cared for, a number of medical complications can arise — bed sores, infections in urine, pneumonia, swallowing problems — if somebody else is feeding you, instead of going in the food pipe, the food can go into the lung. There is a huge risk of infection.

Q: Is Alzheimer’s preventable?

A: That is a very tough question to answer. There is some evidence that it is preventable because we know some of the risk factors that can be taken care of. The most important risk factor is age which, unfortunately, we cannot do anything about but there are others like head injury and low educational status [that can be taken care of]. However, the statistical evidence is not very strong and we need more evidence.

Q: Are you talking about local studies or international ones?

A: I don’t know of any local study assessing the risk factors of Alzheimer’s. One of the best studies carried out in the developing world on the presence of Alzheimer’s in the general population came from Northern India which revealed that in people over 65 years of age the prevalence was one per cent — which is markedly less than western studies. A major component of the study was the development of a standardised methodology for screening and a diagnosis suitable for illiterate Hindi-speaking subjects. The major finding was that overall population prevalence, both of probable and possible Alzheimer’s and of overall dementia, was low. The reasons could be manifold. Maybe South Asian genetics is different.

Q: Or maybe the fact that the older generation here is relatively better taken care of than their western counterparts?

A: Could be. There may be social factors, family dynamics etc. We don’t have reliable data for Pakistan but some of my colleagues are involved in a population-based study in Karachi. So far, we are also seeing a prevalence of about one per cent, even though our study is not complete yet.

Q: What are the social and economic costs of dealing with the disease?

A: In medical books, one of the names given to Alzheimer’s is a caregiver’s disease because after some time, the patient loses insight, judgement and awareness of what they are going through. At that time the burden is entirely on the family. Medical care is astronomical so it’s a huge burden. There is the expenditure of nursing care, medication, feeding and supplies like diapers, urinary bags and then people acquire repeated infections. On top of that, how many people can afford private nursing at home? It is a chronic condition that persists over years and patients cannot be hospitalised endlessly. If nursing care cannot be arranged at home then some family member has to take on the burden, which often ends up being the daughter-in-law.

Q: Is forgetfulness taken as a normal sign of aging? How frequently is treatment sought?

A: For a long time that was the case but now people are coming for treatment. I don’t think this is because the prevalence of dementia has increased. The reason for this change is because our society has become more complex and demanding. An older person in the house, who can no longer function as before, becomes a burden on the family and is brought for medical attention. And awareness is also higher now.

Q: What do you say to a family who comes with a patient?

A: We try not to paint a rosy picture. They should know exactly what to expect. We try to project what will happen in the future based on scientific evidence. There is some treatment but it is not very effective. Alzheimer’s is a tough disease to deal with.

In some cases, there might be a slight improvement or temporary arrest of development, but that is very rare. The bottom line is that these drugs are not very effective and they are also very expensive. A month’s supply costs around Rs 10,000 here. We generally prescribe them drugs for two to three months and if they don’t make a difference, it is better to stop them. Internationally, five medicines are available, of which four are easily available in Pakistan.

This interview is part of a larger article, Death by Destruction.