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At first the Gupta family in the New Friends Colony in New Delhi did not pay much attention to it. The patriarch of the family, a cheerful, talkative and optimistic Virendra Gupta, had suddenly stopped speaking. The family badumed that his irritable and angry behavior was due to his old age.
A few days pbaded and Gupta began to fail buttoning his shirt. Soon he could not get dressed at all. Always dressed in a natural way, he started to leave his house naked. Then came a moment when he finally forgot how to even use his hands to eat food. All this happened in the space of 25 days.
Earlier, the family noticed sudden disorientation and a lack of attention to Gupta. After consulting their family doctor, he was taken to a nearby hospital for a routine examination. When medical reports arrived the next day, it was confirmed that Gupta was suffering from Alzheimer's disease, a neurological disorder in which the death of brain cells causes memory loss and cognitive decline.
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Virendra Gupta was married to Shalini, 57, for 36 years. This sudden change in her husband, Shalini said, occurred one morning, when Gupta failed to recognize his wife. "Imagine waking up next to your husband one morning and he can not seem to recognize you," Shalini said.
The state of Gupta continued to deteriorate until his death on January 28 of this year – bedridden and unconscious of the world that surrounds him – 83 days after he failed to to recognize his wife. He is sixty years old.
In India, more than four million people suffer from Alzheimer's disease and other forms of dementia, which places the country third among countries after China and the United States. India's dementia and the burden of Alzheimer's disease are expected to reach nearly 7.5 million by the end of 2030.
Yet, Alzheimer's disease in India is a hidden problem. Only a tiny fraction of patients are formally diagnosed or treated. Most Indians still consider memory loss as an inevitable part of aging, rather than signs of a degenerative disease.
According to the India Aging Report 2017, the elderly population, which is growing at a faster rate of three percent, Alzheimer's disease in India because the disease occurs mainly in patients over 60 years of age .
Associate Professor, Department of Neurology, NIMS, Dr. V. Sudhakaran said that the change in the age structure of the population India should increase dramatically. "It's all the more difficult to treat Alzheimer's disease because people think it's normal in the elderly.Most families do not even want to treat patients in the family ", Said Sudhakaran.
WHEN MEMORY FAILS
The most painful memory for Shalini is that where her husband did not remember she was." Sometimes he called me maa, thinking that I was his mother because I was the person who cared for him, "she recalls." He acted like a child. "
Shalini said that when Gupta was diagnosed with Alzheimer's disease, the first signs were subtle: small changes in his personality that accentuated over time. "This worsened with long-term memory loss term. Then came a growing incapacity to reason, disorientation, confusion and a lack of emotional control. Eventually, he lost control of basic bodily functions, "says Shalini.
Shalini's husband, Virendra, was diagnosed at an advanced stage, not only did he forget the names, but he also forgot how to make basic things like chewing, walking or pbading stool and urine.The worst, however, said Shalini, was that he suspected his own members of the family of unfair play.He suspected his own son of Plotting his murder, sometimes he used to hide in the closet for hours, "Shalini said.
"Illness has consumed his mind and body in a few months."
But not all Alzheimer's patients struggle with the disease. "It's very difficult to notice the effects of Alzheimer's disease at the beginning, many people pbad it as signs of stress," says Sudhakaran.
That is why, perhaps, Manoj Verma, a late-fifties banker, did not know what he was dealing with until he was trying to strangle him. own son thinking that he is a thief.
NOT ONLY THE DISEASE OF A MAN
It was a work-related stress. That was Verma's badumption when, in October of last year, he suddenly realized that he did not know which way he should drive. He began with his driving habits that became erratic while he was trying to turn left from the middle lane.
Proven indecision at 80 km / h was scary and driving difficulties persisted for some time. So, Verma consulted a doctor, who suggested antidepressants. But soon the new problems have emerged; "I do not remember much of what happened that day, but my wife tells me that I caught my son in the middle of the night and I tried to l & # 39; Strangling. "She told me that I was screaming" I caught a thief … "That's right, Shruti?" Verma asked his wife, unable to recount the incident. occurred three months ago.
Shruti, Verma's wife who teaches at a local private school, says the couple went to see a psychiatrist. a neurologist, who performed simple tests, such as asking him to point to scrambled numbers in the correct order. "Can you believe that a banker failed the test? He could not even add simple numbers," Shruti said.
The tests led to an MRI and finally a diagnosis in March of this year that proves once and for all that the symptoms that he was experiencing had nothing to do with stress. job. Verma exhibited posterior cortical atrophy, or PCA, a rare type of Alzheimer's disease caused by damage to brain cells in the back of the brain responsible for interpreting visual information.
"Once diagnosed, your life expectancy is less than 5 years. My only wish now is to see my son get married, "Verma said in a Delhi City hospital, where he was involved in studies and was badessed for a drug trial.
" I'm not in the denial. I know it will happen someday. I can not recognize Shruti and my son and it would be terrible, "says Verma.
Sudhir Trivedi, a neurologist who also treats patients in Alzhiemer says that many people badume that the disease only affects people who are more than 60 years old, but the condition may also affect people of working age.His research over five years estimate that almost one in four patients are under the age of 55.
"I have patients who Are not more than 30 years old and who have early signs of Alzheimer's disease, "said Trivedi.]
THE ALIENES
Stigma is one of the biggest hurdles for people with Alzheimer's disease who are trying to live with dignity in the face of a disease that gradually and progressively destroys the brain According to a study published by Alzheimer's Research UK and the Alzheimer Society, " Social stigma around ant dementia and dementia prevents early diagnosis, care and research on the disease. "
Vidya Kumar's father had been suffering from Alzheimer's disease for seven years. She often heard this phrase every time people questioned her father's health: "Is your father mad?"
"Social empathy," continues Vidya, "remains a challenge to the disease often confused with madness. the social stigma badociated with Alzheimer's disease, perhaps, is one reason why patients feel alienated.
When Vidya's father was diagnosed with an early stage of Alzheimer's disease; his first reaction was the outrage that he had developed progressive dementia. But it was the reaction of many who surrounded it that made the blow even more terrible to bear. "His friends were making jokes, making fun of his forgetfulness, my father was diagnosed with an incurable disease, his brain was slowly dying, and his friends were making fun of him," Vidya said.
Eventually, his father's condition worsened. He closed and stopped talking to people. The family, who had made peace with his constant anger outbursts, let him be, until one day they had to enter his room only to find him dead. Indra Gupta, a Delhi psychiatrist who has been treating patients with Alzheimer's and dementia for the last 30 years, said the stigma surrounding dementia can take many forms and that people diagnosed with it can "Patients with Alzheimer's disease usually receive stereotypical responses from friends and family, who will say," You should stay inside now because you could forget your way to your home. & # 39; This type of response immediately renders the person incapable in many aspects of life, "said Gupta, adding that standardizing the stigma around Alzheimer's disease is the biggest challenge in the fight against the disease
TO FIND
Many people with Alzheimer's disease who disappear without a trace – those who can not be located and often can not be found – are a rapidly growing crisis.
Arvind Sharma's mother, Sejal, 72, was diagnosed with Alzheimer's disease in 2016. Her symptoms worsened and her ability to talk decreased significantly over time, according to her son. that his mother was sitting on a chair when he came in to fetch water.When he returned, she was gone.
Sejal was last seen on May 12 near the subway station Badarpur. For many searches, it has never been found.
While the population of people diagnosed with Alzheimer's disease is in full swing, many – more than half, according to different surveys – will eventually drift. The stakes are also high: if a patient with Alzheimer's disease is not found within 12 hours, he faces 50% risk of injury or death, according to surveys.
People with Alzheimer's disease also have no opportunity to retrace their steps, which complicates the return home, "said Dr. Sushma Chawla, head of 39, an NGO, Hope Ek ASHA. organization that cares for Alzheimer patients and their caregivers.
Among the disaster statistics, a 60-year-old woman, Padma Kumar, a teacher, who has not been seen since she left her house An early morning walk on June 5th. Despite exhaustive research, there were no confirmed observations.
"Honestly, I can not think of a scenario where Padma can be found now, I just hope she's alive," Ved Kumar says her husband.
The incident was not the first time that someone was going astray in oblivion. Every day Delhi police receive hundreds of complaints from missing Alzheimer patients.
There are no statistics on wandering related to dementia, but according to the Alzheimer's Association, 60% of people with dementia and up to half do not not find within the first 24 hours suffer serious injury or death.
According to 2016 National Crime Records Bureau (NCRB) data, more than 13,200 seniors were missing in 2016 alone. According to many NGOs that run reception centers for patients with Alzheimer's and dementia disease News18 has mentioned, most of these cases are due to Alzheimer's disease. 1.25 billion people under 35, but more than 80 million Indians today have more than 65 years old. This means more cases of Alzheimer's.
With an increasing number of traditional joint families breaking down due to migration, Alzheimer's poses serious challenges. The problem is more serious in rural areas of the country where aging parents with Alzheimer's are often left to fend for themselves. Some of them later end up sleeping on the roads or in shelters for the homeless.
At Guru Vishram Vridh Ashram in Delhi, a retirement home for Alzheimer's patients, many homeless are housed and treated. Most of the patients inside the Ashram are picked up on the roads, bus stops and subway stations.
"We welcome them and our ashram doctors do various tests to check their mental health. According to Shweta, who is a volunteer at Ashram, most of these people are treated for Alzheimer's disease and dementia.
The Ashram has two branches, one in Badarpur, Delhi, and the other in Garh Mukteshwar, Uttar Pradesh. . While the first counts 130 seniors, the latter counts 110. Among them, 70% of patients suffer from Alzheimer's disease
Funded by individual companies and donors, the Ashram has been witness many cases of Alzheimer's. Most of these patients refuse to wear clothes. "If we try to get them to wear clothes, they scream and take them off," says Shweta.
Shweta recounted an incident where ashram volunteers found a stranger, an Alzheimer's patient near the New Delhi train station.
FOREIGN
It was winter 2015 and the alien was sleeping in the cold in a street near the station. Volunteers who found him said that he had nothing but clothes on his back.
"When we approached him, he could not give his address, the name of any parent or even his own, since he was suffering from Alzheimer's disease"
L & # 39; foreigner ended up spending two years at the ashram. Two years later, ashram volunteers learned that the stranger was Manoj Giani, a Hindi writer and columnist who wrote scathing articles during the 1975-1977 emergency in the country.
Giani, then aged sixty years, was shunned by members of his family because of his constant struggle against Alzheimer 's disease. Depressed, he left home and wandered the streets of Delhi for four years until he was found by the volunteers of Guru Vishram Vridh Ashram. Giani still lives at the Ashram, her memory is a little blurry, though.
"This disease [Alzheimer’s] made me helpless, sometimes I forget my own name, I have the impression of being alien to myself," Giani said.
(Some names have been changed on request.)
(More Sunday chroniclers)
| Edited by: Ahona Sengupta
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