Bangalore-based 26-year-old scribe Divya Jacob and her twin sister will never forget that moment. Their grandmother, Ammachi, had caked her face with powder and, when they asked her where she was going, she scolded the girls and said, "The boy's family is coming to see me for marriage prospects. " She was then 70. Ammachi died last week, at 84, after a gradual deterioration in her memory, orientation and behaviour. By the end of her life, she did not recognise the twins she had lovingly brought up. "She did not know who she was, where she was and what was happening around her, " recalls Divya. "The initial signs started setting in around 16 years ago when she sometimes served breakfast to my grandfather twice. When he questioned her, she would quietly take it back to the kitchen. "
Ammachi's condition, Alzheimer's Disease, has become one of the Indian family's most frightening realities. Numerous other grandchildren, children, siblings, and even parents sometimes, have had to confront - and patiently deal with - equally unnerving situations, sometimes for years on end. The examples abound. In one case, a retired engine driver refused to enter the bathroom or eat his food until his family cajoled him with "the train is waiting on the platform for you". An elderly woman, who had grown up in a village with two-storey houses, repeatedly wanted to go upstairs even though she had spent the last twenty years in a Mumbai flat.
"They forget to brush their teeth. They leave their keys in the refrigerator or sugar bowl. These are all the early signs. Over a period of time, hygiene becomes an issue, " says neuropathologist Dr Shirin Barodawala, who is associated with the Alzheimer's & Related Disorders Society of India (ARDSI). "Symptoms range from being extremely passive to extremely aggressive. It is important to understand that the patient is not doing anything deliberately;his disturbed behaviour is because of changes in his brain. "
The good news is that what ten years ago was viewed as inexplicably bizarre behaviour by family members is now being understood as an illness, albeit one for which there is no treatment other than love and care. As Dr Roop Gursahani, a neurologist with Hinduja Hospital in Mumbai says, "These days, people come in and say, 'I think my father has Alzheimer's'. Ten years ago, they may have come in and said, 'My father is behaving in a very odd way. '" Chairman and founder of the ARDSI, Dr Jacob Roy Kuriakose, explains that with life expectancy in India going up, age-related diseases like Alzheimer's and dementia are more likely to set in, but people today have managed to come to terms with such diseases and are actually taking their kin to doctors to be treated.
The Kolkata arm of the association points out that there are some 46, 000 Alzheimer's patients above 65 years in Kolkata alone. "The disease affects patients in varying degrees with many suffering just a partial memory loss but retaining their power of judgement, " says Nilanjana Maulik of the ARDSL. The association trains professional care-givers to assist patients. It also organises awareness camps for patients, counsels them and chalks out 'care plans' for their families. Interestingly, it has started addressing schools, because there is a sense that grandchildren are an important point of contact for Alzheimer's patients and can also go a long way in giving them sympathetic care.
But regardless of the increase in awareness, even today, most families still learn about the condition when the patient is quite far gone. In India, especially, where people are habitually in denial about intimate issues that are taking place in their home, diagnosis becomes difficult, say doctors. Moreover, the change in behaviour sets in gradually and there is also an overlap with normal aging and memory loss. Families tend to find out only when there is some major event - like if the patient has taken ill, has to be hospitalised, and suddenly seems very confused about where he is, say doctors.
Even after you find out, there is not much you can do. This absence of a cure is the greatest tragedy of the disease. Treatment essentially centres around creating a calm and nurturing environment for the patient. And the brunt of it falls on the care-givers, which in India is mostly family, sometimes domestic help. Dr Gursahani says that a number of his patients are the elderly parents of non-resident Indians. "I have three to four such cases. It's a terribly stressful period for the families. The patients are left in the hands of servants. You almost want their suffering to end. "
At such times, the absence of assisted living facilities or special nursing homes become especially glaring. Ironically, although there are no institutional support systems, in some ways India scores in the area of care-giving, because there is a strong family network and a high degree of compassion for the elderly. That has been the saving grace in low-income groups where care-giving for dementia-related illness is one of the greatest challenges.
"Coping with an Alzheimer's patient is particularly difficult for the poor because they are so busy running around making a living, " says Swati Ingole, medical and psychiatric social worker, who works in Mumbai's slums. But there is another factor which comes into play - which is community support. There is a lot of respect for elders in the lower economic strata, so they actually take it on as their collective responsibility to care for the patients. That is how they manage. "
She describes the example of a retired teacher in the Matunga Labour Camp, whom every one called 'guruji' long after he had turned into an almost child-like dependent. The whole community would be alert if he stepped out. Once he got lost, and the entire slum got together and searched for him and found him on a railway platform. "You will never find this in a middle or upper middle class nuclear family, " says Ingole.
By Namita Devidayal
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Saturday, September 18, 2010
Vanishing Mind :Alzheimer's Disease, has become one of the Indian family's most frightening realities
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