If you ever saw a house filled with lights and someone turning those off one by one, then you know what happened to her brain. The first signs were small and all too easy to dismiss.
She started losing words and could barely sustain a conversation. Slowly, as the spreading darkness of Alzheimer’s took over, she forgot how to cook, tell the time on a clock, dial a phone and speak five out of six languages she knew.
She also lost all the favourite tunes that she hummed aloud all her life. For the gutsy mother, who worked tirelessly to bring up two children after the sudden death of her husband, snapping pea pods takes concentration—lots of it—now. There’s no cure and no way to stop the lights from “turning off” in her brain. At least, not yet.
“Not yet” is the operative word, full of wonderful deniability. For few recognise that a dementia upsurge is looming over India. And the nation doesn’t even have the disease on its radar.
At the first National Dementia Strategy meet held in Delhi in Jan 2009, it was declared that India would be among the top five dementia hubs by 2020. If there are 24.3 million dementia patients in the world, India is believed to have nearly 3.5 million, rising at a rate that is three to four times higher than the developed world.
Each of our five metros have 30,000 to 50,000 such patients. According to the World Health Organisation (WHO), from one in 20 above 65 years of age suffering from dementia, India will face a steep rise of one-in-four sufferers in the near future.
What explains the rising numbers? “Age,” says Dr Sheilu Sreenivasan of Mumbai, “It is the only known risk factor for dementia. As a person grows older, the Alzheimer’s risk goes up too. After 60, it’s one in 20, but after 80 it is one in five.”
With rise in longevity, growth rate among the 80-plus segment has jumped up, explains Sreenivasan, the president of Dignity Foundation, a charitable organisation with social support deliveries for senior citizens.
“The number of dementia patients is also growing at a phenomenal rate,” she adds. To Nirmala Narula, vice-chairperson, Alzheimer’s and Related Disorders Society of India (ARDSI), there’s more awareness now. “So many more people come to us. Our helplines are constantly engaged these days,” she says.
The toxic brew for dementia is lifestyle, says Dr P.N. Renjen, senior neurosurgeon with Apollo Indraprastha, Delhi: “In India, dementia in the wake of strokes or cerebro-vascular diseases is very common—nearly 30 to 40 per cent.”
Hardly a surprise as the country gallops into the present, modernising and urbanising at blinding speed, western food habits take hold, physical activity drops alarmingly, long hours of work and stress make obesity, diabetes and other lifestyle disorders the order of the day.
“There has been a surge in dementia triggered by strokes,” says Renjen. If in the West, 100 people out of one lakh get a stroke each year, in India it’s 300 out of one lakh.
Dementia is a slow burn that strips sufferers of memory, personality and eventually their humanity. “It refers to the whole class of conditions characterised by the deterioration of cognitive skills of a person, in two spheres—say, memory and calculation or memory and language—bringing one’s quality of life down significantly,” explains neurologist Dr Manjari Tripathi of the All India Institute of Medical Sciences (AIIMS), Delhi, who set up the Cognitive Disorders Clinic 10 years back. “Dementia is the effect,” clarifies Dr V.S. Natarajan, geriatrician who runs the Senior Citizens’ Bureau in Chennai.
For over 60 per cent, the cause is Alzheimer’s Disease. A further 20 per cent have vascular dementia, caused by mini-strokes which disrupt the blood supply to the brain—most common in people with heart disease and high blood pressure.
The remaining 25 per cent have a range of causes, from hypothyroidism to vitamin B12 deficiency, explains the man who authored Goodbye To Dementia. “Some are reversible, but the more deadly varieties—linked to Alzheimer’s or Parkinson’s—are incurable.”
No one really knows why brain cells start dying. In Alzheimer’s, the condition is thought to be caused by the build-up of protein deposits in the brain—plaques and tangles—whose first symptom may be a difficulty in finding words.
“The only known risk factor is age,” says Dr Mathew Verghese of the National Institute of Mental Health and Neuro Sciences (NIMHANS), Bangalore. “But in Alzheimer’s, there is an overall shrinkage of brain tissue, very different from normal ageing,” he says.
But researchers still don’t understand why Alzheimer’s is selective in the way it attacks the brain. It begins in the memory areas—the hippocampus, which is critical to memory—and spreads slowly to other parts over a period of two to three years.
“We really don’t know why a disease would ravage certain areas of the brain but leave vision and hearing completely untouched,” says Verghese. In the early stage, when the hippocampus degenerates, shortterm memory is affected.
But as it spreads through the cerebral cortex (the outer layer of the brain), the sense of judgement declines and emotional outbursts occur along with language impairment.
Death of more nerve cells lead to further changes in behaviour— agitation and the tendency to wander off. In the final stages, the patient loses the ability to recognise their closest kins, muscle control, bodily functions and needs constant care.
And it’s a world of suffering—for both the patient and the caregiver. Vinod Chugh of Delhi got his first symptoms right after retirement. His mood swings were put down to depression. It took two years of visits and battles before he finally got a diagnosis.
Meantime, his personality turned abusive. Then he lost his sense of night and day. His wife would put him to bed; he would wake up and walk around the house. The process would be repeated 20 to 30 times at night.
Every night. Not just that. Suddenly, he would go missing and she would get phone calls from the police. He couldn’t recognise people who came into the house and was frightened because he did not understand what was happening to him.
Every act of care made him suspicious and scared him even more. His wife bore it all, but at a high price. For her, life became a little bubble—her home, her patient and nothing else.
What’s worse is that one family member struck by the disorder can mean several collateral victims, with heavy tolls on family life and resources. When 60-something Rama Ramachandraiah of Bangalore was diagnosed with Alzheimer’s, her family had to cope as much with the financial as the medical and emotional effects of the neurological disorder.
“The drugs would cost about Rs 2,500 a month,” says her daughter, “Then there are the tests. An MRI costs Rs 7,000 and a CT scan about Rs 2,000 and until it was diagnosed, we had about four of each done.”
Then there were the regular tests—blood sugar, TSH—which cost about Rs 1,200 every two months. Around Rs 7,500 went to the nurse, with the agency asking for Rs 3,000 every six months to renew the contract.
“In addition, it is said that an Alzheimer’s patient falls at least four times a year,” she says. “When my mother fell and broke an arm, we spent Rs 58,000 for the wrist surgery and 18 hours in hospital.”
Acure for dementia is still a distant dream. But there’s some action behind the scenes that raises new hope. Silently and largely out of sight, memory clinics are popping up in city after city, across the country— Kochi to Chandigarh, Thane to Siliguri—to address a crying need: a desperate shortage of affordable and qualified caregivers.
“Memory clinics help screening for dementia, counsel family members, help patients recall past events, provide techniques to recall things by giving them memory cards among other things,” says Kausik Majumdar, a UK-trained dementia specialist who now runs the service at the National Neurosciences Centre in Kolkata.
The Government has not gone out of its way to help these clinics. India Inc has not offered a helping hand. Yet, as some of the missing pieces start falling in place in the dementia jigsaw puzzle, a new legitimacy is being forged for a clutch of people who have always been discussed in hushed tones by family members and kept out of sight as an embarrassment.
The fear factor
• India to be among top five dementia hubs by 2020, says the WHO.
• 24.3 million is the number of dementia patients in the world. India has 3.5 million.
• One in five people at risk after 80 years of age
• 30-50 thousand dementia sufferers reside in each of the five metros, report surveys.
• 75 mn people above 60 make India a soft target for a dementia upsurge, predict experts.
• 8 mn people above 80 form the fastest-growing and most vulnerable group for the disease.
By Damayanti Datta
Courtesy: India Today :
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