Her beatific smile does not leave her face throughout the two-hour conversation. There are occasional nods as if in agreement and a couple of broad grins intermittently. She perks up when this correspondent is about to leave, holding out her hand for a warm shake and says, “Shukriya.’’ Shakuntala Azhar (name changed), 73, is suffering from Alzheimer’s disease.
Were it not for the continous twisting of her tongue inside the mouth, it would be impossible to tell that she has any problem at all. More than her, it is the family that suffers the rigours of her condition.
Each morning, she has to be woken up, her teeth rinsed, bowels monitored, fed painstakingly over two to three hours, slipped into a free-floating gown that can be zipped, and diapers tucked in place. She may or may not eat, may or may not sleep and may get weepy or angry without any apparent reason. At least one member of the family has to be around her, even at night when she often clutches the hand next to hers tightly to sleep.
Known to primarily afflict the aged population, Alzheimer’s disease enters rather quietly into family life. As there is no way to reverse the condition and as most patients stay at home, the family has to bear the brunt.
The Azhars have had to relocate from abroad and rarely socialise. Azhar’s son quit a high-paying job in the Gulf to attend to his mom, and has informed his employers how he may have to leave work mid-way if his mother needs him.
Neuropathologist Shirin Barodawalla, who has done research, says, Alzheimer’s can strike early but the prevalence is highest among people above 65 years of age.
Though not conclusively, Barodawalla’s research on autopsied brains in Mumbai’s JJ Hospital in the 90s seemed to suggest that Indian brains are better preserved than those in the US.
“Every fourth American lives beyond 80, and every second who does, runs the risk of developing dementia. Here, we live a little less, look after our elderly better and our food is different. Our diet is well-balanced and has less fat and protein as compared to the Americans,” she offers as the probable reasons for the difference.
Research by others in Haryana and South India suggests that prevalence among Indian elderly between 60 and 70 years was less than 1 per cent as against the World Health Organisation (WHO) estimate of 3 per cent. Again, only three per cent of the Indian sample population between 70 and 90 years was found to be affected by dementia as compared to WHO’s standard of 20 to 30 per cent.
Experts warn, however, that studies are not representative. ``A lot more people suffer but are not diagnosed. Many are abused and kept locked up in their homes as they need constant care,’’ observes psychologist Karthika Anthony, head of the Alzheimer’s cell at Dignity Foundation, an NGO that addresses the issues of senior citizens.
Another expert says Alzheimer’s could be quite common in India too but goes unnoticed because the families don’t talk about it.
A protein deposit called amyloid has been linked to Alzheimer’s disease. Two microscopic structures called `plaque’ and `tangles’ are formed in the brain due to the disease though their exact role is still not known. Amyloid plaques are clumps of protein fragments while tangles are twisted strands of another protein. The first area these structures affect is the nucleus basalis meynert in the hippocampus in the temporal lobe.
Alzheimer’s is an expensive disease. The Azhars spend around Rs 30,000 on medicines alone.
“We tried to keep a maid, which costs us Rs 170 for eight hours, but she fled,’’ says Azhar’s son.
“There is no way of telling how she will behave. One day, she stopped eating. The doctors talked of putting her on a drip. Sometimes, she is happy. At times, she cries.’’
Azhar’s husband talks of how she loved dressing up in trendy sarees.
“Now, it’s a struggle to get her into a gown,’’ he says with tears in his eyes even as his wife looks on placidly.
Anthony says it’s crucial for an Alzheimer’s patient to have physical and mental activity and social interaction. “Otherwise, they deteriorate much faster,’’ she says.
Governments all over the world pay little heed to this ailment because it’s incurable and affects mainly the aged. The Alzheimer’s and Related Disorders Society of India, an NGO, offers dementia care, support and research to those suffering from this debilitating condition. Dignity Foundation has a day-care centre at Grant Road that currently caters to around 15 dementia patients in the city and a centre offering institutional care at Neral.
The symptoms vary but the first problem usually is forgetfulness. The other symptoms are difficulty in performing familiar tasks, problems with language, disorientation of time and place, problems with abstract thinking, decreased judgment, misplacing things, change in mood or behaviour, changes in personality and loss of initiative.
What causes it?
The cause is still unknown. Two microscopic structures called `plaque’ and `tangles are formed in the brain due to the disease though their exact role is still not known. Amyloid plaques are clumps of protein fragments while tangles are twisted strands of another protein.
Because there is no single test for Alzheimer’s, diagnosis involves a clinical and physical examination, verbal tests for memory and investigations.
Drugs approved by the US Food and Drug Administration may temporarily delay the onset of symptoms but they cannot arrest the degeneration of brain cells. Caregivers need to be sensitive not only to the patients’ needs but feelings as well. “Avoid discussing her condition in her presence, maintain a sense of humour and show a lot of love through hugs, if that’s convenient,’’ says Dr Shirin Barodawalla.
1. Alzheimer’s & Related Disorders Society of India — 23742479
2. Manav Seva Sangh - 24081487 (between 10 am and 12 noon)
3. Dr Dias Nursing Home - 26402283
4. Dr Mahalaxmi Iyer - 27549911
5. Masina Hospital - 23714889 / 90
- Low protein and low fat diet
- Fruit and vegetable juices
Who is susceptible?
Alzheimer’s advances at different rates. It could take three to 20 years to worsen. The areas of the brain that control memory and thinking are affected first
Late-onset Alzheimer’s is most common. It affects individuals over 65 years of age, especially among those with a family history of the disease. With the gradual increase in life expectancy, experts say the number of people with Alzheimer’s will triple by 2050.