Memory's Last Breath: Living With Alzheimer's In India
In India, more than 4 million people are estimated to be suffering from Alzheimer’s and other forms of dementia, giving the country the third highest caseload in the world, after China and the US.
Illustration by Mir Suhail/News18
At first, the Gupta family in Delhi’s New Friends Colony didn’t pay much attention to it. The patriarch of the family, a joyous, talkative and upbeat Virendra Gupta had suddenly stopped talking. The family assumed his irritable and short-tempered behavior is because of his old age.
A couple of days passed and Gupta started failing at buttoning his shirt. Soon, he couldn’t dress himself at all. Always dressed nattily, he then began to leave his house stark naked. Then came a time when he eventually forgot how to even use his hands to eat food. All this happened in a span of 25 days.
Earlier the family had noticed sudden disorientation and lack of attention in Gupta. After consulting their family doctor, he was taken to a nearby hospital for a routine check-up. When the medical reports arrived the next day, it was confirmed that Gupta was suffering from Alzheimer’s—a neurological disorder in which the death of brain cells causes memory loss and cognitive decline.
Virendra Gupta was married to 57-year-old Shalini for 36 years. This sudden change in her husband, Shalini said, happened one morning, when Gupta failed to recognise her wife. “Imagine waking up next to your husband one morning and he fails to recognise you,” Shalini said.
Gupta’s condition continued to deteriorate until he died on January 28th this year—bedridden and oblivious of the world around him—, 83 days after he failed to recognise his wife. He was sixty.
In India, more than 4 million people are estimated to be suffering from Alzheimer’s and other forms of dementia, giving the country the third highest caseload in the world, after China and the US. India’s dementia and Alzheimer’s burden is forecast to reach almost 7.5 million by the end of 2030.
Yet, Alzheimer’s 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 ageing, rather than signs of a degenerative disease.
According to the India Ageing Report 2017, the elderly population, which is growing at a faster rate of three percent, may up the burden of Alzheimer's in India, as the disease primarily occurs in patients over the age of 60.
Associate professor, Department of Neurology, NIMS, Dr. V. Sudhakaran said the shift in population age structure means that the burden of Alzheimer’s in India is set to increase considerably. “It makes it all the more difficult to treat Alzheimer’s because people think it’s normal among elderly people. Most of the families don’t even want to treat the patients in the family,” Sudhakaran said.
WHEN MEMORY FAILS
The most painful memory for Shalini is of the days when her husband could not remember who she was. “At times, he would call me maa, thinking I was his mother, as I was the person looking after him,” she recalled. “He acted like a child.”
Shalini said when Gupta was diagnosed with Alzheimer’s, the first signs were subtle: small changes in his personality that grew increasingly acute over the period of time. “It got worse with the long-term memory loss. Then came an increasing inability to reason, disorientation, confusion, and a lack of emotional control. Finally, he lost control of basic bodily functions,” Shalini said.
Shalini’s husband, Virendra, was diagnosed at an advanced stage, which meant that not only did he just forget names and had trouble remembering people but he also forgot how to do basic things like chewing, walking or passing stool and urine. The worst part, however, Shalini said, was that he suspected his own family members of foul play. “He suspected his own son of plotting his murder. Sometimes he even used to hide in the cupboard for hours,” Shalini said.
“The disease consumed his mind and body in just a couple of months.”
But not all, among the patients of Alzheimer’s, know they are battling the disease. “It’s very hard to notice the effects of Alzheimer’s in the beginning. Many people pass it off as signs of stress,” Sudhakaran said.
That’s why, perhaps, Manoj Verma, a city banker in his late 50s didn’t know what he was dealing with until the point when he tried to strangulate his own son thinking that he is a thief.
NOT JUST AN OLD MAN'S DISEASE
It was work-related stress. That was Verma’s assumption when in October last year he suddenly found he had no idea which lane he should be driving in. It started with his driving habits that became erratic as he tried to make left-hand turns from the middle lane.
The indecision—experienced at 80kmph—was frightening and the driving difficulties persisted for some time. So Verma consulted a doctor, who suggested antidepressants. But soon the newer problems emerged; this time more life threatening.
“I don’t remember much of what happened that day but my wife tells me that I got hold of my son in the middle of the night and I tried to strangulate him. She tells me I was screaming ‘I have caught a thief’. That’s right, Shruti?” Verma asked his wife, unable to recount the incident that happened just three months ago.
Shruti, Verma’s wife who is a teacher at a local private school, said the couple then went to see a psychiatrist and a neurologist, who ran simple tests, such as asking him to point to jumbled numbers in the correct order. “Can you believe that a banker failed the test? He couldn’t even add simple numbers,” Shruti said.
The tests led to an MRI scan and eventually a diagnosis in March this year that proved once and for all that the symptoms he was experiencing were nothing to do with stress at work. Verma had posterior cortical atrophy—or PCA, a rare type of Alzheimer’s disease caused by damage to the brain cells at the back of the brain responsible for interpreting visual information.
“Once you’re diagnosed, your life expectancy is less than 5 years. My only wish now is to see my son getting married,” Verma said at a city hospital in Delhi, where he was participating in studies and being assessed for a drugs trial.
“I am not in denial. I know it’s going to happen one day. I may not able to recognise Shruti and my son and that would be terrible,” Verma said.
Sudhir Trivedi, a neurologist who also treats Alzhiemer’s patients said that many people assume the disease only affects people who are over 60, but the condition can affect people of working age also. His five-year long research estimates that almost every fourth patient he has treated was under the age of 55.
“I have patients who are no more than 30 and they are having early signs of Alzheimer’s,” Trivedi said.
Stigma is one of the biggest barriers for people with Alzheimer’s trying to live their lives with dignity in the face of a disease that over time relentlessly and progressively destroys the brain. According to a study, New perspectives and approaches to understanding dementia and stigma, published by Alzheimer’s Research UK and the Alzheimer’s Society, “The social stigma surrounding Alzheimer’s and Dementia is impeding early diagnosis, care and research into the disease.”
Vidya Kumar’s father had been suffering from Alzheimer’s from last seven years. She often heard this phrase whenever people enquired about her father’s health: “Is your father mad?”
“Social empathy,” Vidya said, “remains a challenge regarding the disease which is often mistaken for insanity.”
This social stigma attached to Alzheimer’s, perhaps, is a reason that the patients feel alienated.
When Vidya’s father was diagnosed with early-stage Alzheimer's; his first reaction was outrage that he had developed the progressive dementia. But it was the reaction of many of those around him that made the blow even more terrible to bear. “His friends used to come over and joke around, make fun of his forgetfulness. My father was diagnosed with an incurable disease, his brain was slowly dying and here were his friends making fun of him,” Vidya said.
Eventually his father’s condition got worse. He shut himself and stopped talking to people. The family, who had made peace with his constant outburst of anger, let him be, until one day when they had to break into his room only to find him dead. He had hanged himself.
Indra Gupta, a psychiatrist in Delhi who has been treating Alzheimer’s and Dementia patients from last 30 years said the stigma surrounding dementia can take many forms, and people diagnosed with the condition can find themselves shunned by those in their social circle, most often people they have been interacting with for years.
"Alzheimer’s patients usually get stereotypical responses from friends and family, who will say, ‘You should stay indoors now because you might forget your way to your home.' This kind of response immediately renders the person competently incapable in many all aspects of life," Gupta said, adding that the normalisation of the stigma around Alzheimer’s is the biggest challenge in battling the disease.
THE LOST THAT ARE NEVER TO BE FOUND
A lot of people with Alzheimer's who vanish without a trace—the people who cannot be located and are often never found—constitute a rapidly growing crisis.
Arvind Sharma’s mother, Sejal, 72, was diagnosed with Alzheimer's in 2016. Her symptoms worsened and her ability to speak significantly diminished over time, according to her son. Arvind said his mother was sitting on a chair when he went inside to fetch her some water. When he returned, she was gone.
Sejal was last seen on May 12 near Badarpur metro station. Despite multiple searches, she has never been found.
As the population of people diagnosed with Alzheimer’s is soaring, many—more than half, according to different surveys—will eventually wander off. The stakes are high too: If a missing Alzheimer’s patient isn't found within 12 hours, he or she faces a 50-per-cent chance of injury or death, according to surveys.
"People can come to real harm in a very short period of time. Alzheimer’s also don't have the ability to retrace their steps and that makes it all the more difficult for them to return home," said Dr. Sushma Chawla, who runs an NGO Hope Ek ASHA, a voluntary organisation that takes care for Alzheimer's patients and their caregivers.
Among the grim statistics is, a 60-year-old with Alzheimer's patient, Padma Kumar, a teacher, who hasn't been seen since she left her home to go for a morning walk on June 5. Despite an exhaustive search, there have been no confirmed sightings.
"I honestly can't think of a scenario easily where Padma can be found now. I just hope she is alive," Ved Kumar, her husband said.
The incident was not the first time someone wandered away into oblivion. Every day Delhi police get hundreds of complaints of Alzheimer’s patients who go missing.
There are no statistics on dementia-related wandering, but as per Alzheimer’s Association, US, 60% of people with dementia wander and up to half of those who are not found in the first 24 hours suffer serious injury or death.
As per the NCRB (National Crime Records Bureau) data of 2016, over 13,200 elderly people had gone missing in 2016 alone. According to many NGO who run home shelters for Alzheimer’s and dementia patients News18 spoke to, most of these cases are due to Alzheimer’s.
NOWHERE TO GO
India may be a young country, with 65 percent of its 1.25 billion people under the age of 35, but more than 80 million Indians today are over the age of 65. This means more cases of Alzheimer’s.
With an increasing number of traditional joint families breaking down due to migration, caring for those with Alzheimer’s poses serious challenges. The problem is more serious in rural areas of the country where ageing parents with Alzheimer’s are often left to tend for themselves. Some of them, later on, end up sleeping on roads or in shelters meant for the homeless.
At Delhi’s Guru Vishram Vridh Ashram, an old-age home for Alzheimer’s patients, many such homeless people are accommodated and treated. Most of the patients inside the Ashram are picked up from the roads, bus stops and metro stations.
“We take them in and the doctors at our ashram do various tests to check their mental health. Most of these homeless people are being treated for Alzheimer’s and Dementia,” Shweta, who is a volunteer at the Ashram, said.
The Ashram has two branches, one in Badarpur, Delhi, and the other in Garh Mukteshwar, Uttar Pradesh. While the former has 130 senior citizens, the latter has 110. Of them, 70 percent of patients suffer from Alzheimer’s.
Funded by corporate and individual donors, the Ashram has witnessed many extreme cases of Alzheimer’s. Most of these patients refuse to put on any clothes. “If we try to make them wear clothes, they scream and take them off,” Shweta said.
Shweta recounted an incident when the volunteers of the ashram found a stranger, an Alzheimer’s patient, near New Delhi railway station, who after proper care and medical help surprised them all with his past.
It was the winter of 2015 and the stranger was sleeping in the cold on a street near the railway station. The volunteers who found him said he had nothing but the clothes on his back.
“When we approached him he could not provide his address, any relative’s name or even his own, for he had Alzheimer’s,” one of the volunteer said.
The stranger ended up spending two years in the ashram. Two years later, the ashram volunteers came to know the stranger was Manoj Giani, a Hindi writer and a columnist who used to write scathing articles during the 1975-1977 emergency in the country.
Giani, then in his late 70s, was shunned by family members because of his constant battle with Alzheimer’s. Dejected, he left from his home and wandered through the streets of Delhi for four years until he found by the Guru Vishram Vridh Ashram volunteers. Giani still lives in the ashram, his memory a little out of focus, though.
“This disease [Alzheimer’s] has rendered me helpless. Sometimes I forget my own name. It feels like I am stranger to myself,” Giani said.
(Some names have been changed on request.)
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