Health: Alzheimer's Disease; Taming the Demons

With advances in research, the disease is now easier to detect and understand. But ignorance--and still no cure--continues to kill and break hearts.

Through half a century of working with radio and TV broadcasters, V.K. Narayana Menon never gave his lively, energetic brain a second thought. But inside one of evolution's most wondrous products, nerve cells were beginning to die, smothered by obstinate protein tangles. Unknown to the former director-general of All India Radio, his brain was shrinking, signalling the onset of Alzheimer's disease, the dreaded affliction where patients just forget -- loved ones, how to handle money, how to wear clothes, even how to bathe or urinate.

The ruthless decaying of the mind in Alzheimer's is so gradual that it often takes people years to even diagnose the illness. "To see him lose his intellect was and is the greatest trauma of my life," says Menon's wife Rekha. He forgot people's names, but that's hardly unusual for an 80-year-old man. Then one day, his daughter Malavika came visiting. When she left, he turned to his wife and asked: "Nice girl, who was she?"

Twilight Zone

Twilight Zone

Indu Khanna, 69, hasn't said a word in three years. She screams when she's upset and says nothing otherwise. Khanna has probably forgotten how to speak. It started in 1991 when she was vice-president of a woman's organisation and refused to make a speech. She soon forgot how to sign her name, how to read and write. She went through a terrible phase of violence and frustration, until she finally forgot her own children and husband. But she's lucky. Her octogenarian husband and two nurses look after her, talking to her, though she never replies. But sometimes -- only sometimes -- she smiles.

The heartache caused by such a question is something only relatives and those who care for Alzheimer's patients can understand. Of all the disorders that involve human intellect or cognition, the commonest worldwide is Alzheimer's. There are secondary dementias -- loss of memory -- caused by trauma, brain infections, injury, hypothyroidism or multiple strokes. But Alzheimer's is relentlessly neurodegenerative, with no way to prevent or cure it yet.

There are over three million people with dementia in India. The exact number suffering from Alzheimer's is not known, but neurologists believe it is growing. "The estimated risk of Alzheimer's disease in the elderly is 10 per cent and in the 60-plus group 5 per cent, so the disease poses a challenge to our healthcare system," says Gourie Devi, director of the National Institute of Mental Health and Neuro Sciences (NIMHANS) in Bangalore. NIMHANS says Alzheimer's accounted for 30 per cent of all cases of dementia during 1993-97.

Research on the disease has finally yielded some results, giving new hope to the victims of Alzheimer's. These include the identification of four genes (see graphic) which could trigger the disease. A new area of research has linked the disease to cholesterol levels in the body. An Indo-US study which conducted tests on 5,000 people in Ballabhgarh in Haryana found that those in the rural areas had less chances of getting Alzheimer's because they had lower cholesterol levels than the urban people. Studies have also shown that patients lose certain abilities much faster simply because care-givers underestimate what they can do for themselves. So new therapy is working towards gauging what patients can still do for themselves and letting them do it. This can also reduce disruptive behaviour.

What triggers the cell deaths that cause Alzheimer's? Is it age, lifestyle or environment? Doctors have no definite answers. "It's an organic disease of the brain and changing lifestyles or stress have little to do with it," says K. Jacob Roy, chairman of the Alzheimer's and Related Diseases Society of India. Sudden traumas such as a death in the family can also bring on the disease, he adds.

What is changing is detection. There was a time when the disease could be confirmed only by removing a bit of the brain and studying it. But now a combination of several mental ability tests and advanced neurological scanning methods have facilitated detection in living patients. Pushing the frontiers of science are techniques that can monitor levels of proteins called tau in cerebrospinal fluid. Tangles of tau block the vital transmission between the centre and peripherals of a nerve cell, disrupting message processing. But there's no cure in sight. "It's a bleak future with no cure, for this is still a progressively degenerative disease," says Sujata Sharma, a Delhi-based neuropsychologist who works with Alzheimer's patients. In such a scenario, managing the disease is what the care-givers have to focus on. "The best place to care for such patients is their own homes by their loved ones," says Roy. But with the patients unable to recognise even those who love and care for them, the care-giver often becomes another victim of the disease's wider social effects.

In the West, where the incidence of the disease is alarmingly high, a social support system is in place. They have day-care centres where patients relearn everything -- from brushing their teeth to wearing clothes properly. In India, however, the changes associated with Alzheimer's are often considered a part of growing old. And they go unrecognised. "In Hindi, people use the phrase sathiya jana to describe forgetfulness that comes with age", says Vijay Chandra, who heads the Delhi-based Centre for Ageing Research and conducted the Ballabhgarh study. It is vital not to mix this degeneration with "the inevitable consequences of ageing", adds Chandra.

That's precisely what's happening in India. Most people, even in the metros, have no knowledge either of the advances made in understanding the disease or the disease itself. "There are some Indians who have not even heard of the disease, which makes its management difficult," says Sharma. That also explains the lack of a social support system or centres for the care of patients.

Most advances on understanding the disease are just the beginning. A breakthrough is still far away. Till then, the person who cares or the loved one who tends -- and suffers along with the victim -- is the only source of solace to the Alzheimer's patient.