She wore her T-shirt wrong, its front facing the back. It was May 2017. The first symptoms of dementia had just surfaced in the 18-year-old Kiran (name changed). Two months later, she failed to identify her mother, brother, sister-in-law, newborn nephew and friends. A year later, She is now a frail 25 kg, lying on a mattress, social interactions stopped. Her medical papers identify her as a classic case of Subacute Sclerosing Panencephalitis (SSPE), but her mother does not understand this.
She only knows that her daughter suffers from dementia, the most hard-hitting symptom of SSPE. “Doesn’t memory loss affect older people?” she asks, sitting cross-legged on the floor in her one-room-hall chawl space in Nallasopara East, a far-flung suburb north of Mumbai.
Known to be a progressive degenerative brain disease, dementia is known to commonly affect one in 10 persons aged above 65 years. The last official document by Alzheimer’s & Related Disorders Society of India (ARDSI) in 2010 pegged Indian patients of dementia at 3.4 million, putting healthcare costs at Rs 14,700 crore annually. Cases of younger people, especially children, suffering from dementia are rare.
In Kiran’s case, doctors guess measles and HIV infection in childhood led to SSPE and subsequently dementia that progressed rapidly in a month. Incidence of SSPE is 21 cases per million population in India as opposed to 0.6 per million in USA, a study by University of Miami and New York Medical College says.
“We have no clue how the disease may progress. I see one SSPE case in every three to four months. But what she has is rarer,” says Dr Rahul Chakor, head of neurology department at Nair Hospital, who first diagnosed Kiran in June 2017.
SSPE occurs almost a decade after a person is cured of measles. Kiran had measles when she was six months old, her mother did not get her vaccinated. In India, over 2 million children contract measles. In 2017, Union health ministry introduced measles-rubella vaccination for children aged 9 months to 15 years to battle the contagious but preventable viral infection. World Health Organisation data shows India achieved 77 per cent coverage of national target population.
When Kiran was seven, she was diagnosed with HIV. Existing research suspects a mutant virus may be responsible for SSPE. From initial symptoms of dementia and behavioural changes, a patient goes into a vegetative state with involuntary jerky movements in the limbs.
“She didn’t remember her own birthday on May 22 last year,” says Karuna, who is employed as a domestic help.
Frames of various deities and spiritual leaders, including Jesus Christ and Hanuman, hang on the walls of their tiny hall. Confined there, Kiran alternates between sleeping and watching TV on a plastic chair. When she wants to use bathroom, she lets out a scream. When she wants water, she cries.
In October last year, the family cut her waist-long hair to a bob. Once a girl who loved painting her nails, clicking selfies, she is now invariably in shorts and a T-shirt, unable to walk on her own or remember daily chores, says sister-in-law Kavita.
There is no treatment to cure her yet. “There is research suggesting anti-viral medication can help, but we have seen no progress in her,” Dr Chakor says.
“We are with dementia where we were with cancer 30 years ago. We can see the pathology, we can see the brain shrink, the way amyloid plaque accumulates, but we don’t know what causes dementia. Maybe genomics will teach us,” Malcolm Grant, chairman of National Health Services, UK, told The Sunday Express. In UK, the British Medical Journal estimates 10,000 people suffer from young onset dementia.
This year US pharma-giant Pfizer withdrew its drug research in Alzheimer’s due to failure rates of clinical trials. Other pharma companies such as Janssen, Novartis, Biogen and Abbvie are still conducting research. One of the largest non-drug trials is currently underway in Toronto where a five-year study that costs $10 million is studying whether a combination of electric stimulation and mental exercise can delay the progression of the disease. Initial results are expected in 2020.
Kiran’s elder brother earns Rs 7,000 to feed a family of five, and her monthly antispasmodic and anti-retroviral drugs cost Rs 3,000. “We tried stopping medicines, they are so costly. But her jerks increased. I can’t leave my daughter to writhe in pain,” Karuna says. She recently stopped working as a domestic help to look after her daughter. “I sold the gold bangles my mother gave me for her wedding.”
Every six months, the Gawdes travel 65 km to Nair Hospital on a Mumbai local train. Handling Kiran is the most difficult task. She tries to get off the moving train.
“Dementia not only affects patients, but even their caregivers. It is emotionally draining,” says Vidya Shenoy, who runs Mumbai’s only day-care centre for dementia patients in Bandra. Old men and women play board games, paint and talk randomly, incoherently, with each other from morning to evening until their children pick them up.
In India, dementia cases are projected to reach 7.4 million by 2030, claims ARDSI. In 2016, the World Health Organisation formulated a global plan for dementia for better awareness, diagnosis and treatment for patients. Only 29 countries have a plan of action on dementia. India is not one of them.
“I don’t know what to do. Doctors say there is no treatment. How can I see my wife lose her memory every day,” says lawyer Takseer Khan, whose 35-year-old wife Hasinabegum is suffering from dementia following a brain infection, in Uttar Pradesh’s Pratapgarh.
It was December 2016 when she displayed a hint of symptoms. “She was making tea. And couldn’t remember if she added sugar,” Takseer recalls. She suffered from neuro-degenerative disease, and he was already tense about her lack of response to medications and aggressive treatment. “Memory loss was not on my mind until it accelerated this year,” he says.
Takseer now says Hasinabegum has lost 30 per cent of her memory — they tell her something and minutes later she forgets about it. “Thankfully, she remembers our four children.”
Hasinabegum did not lose her memory suddenly. It was slow, painful. “First her voice changed,” Takseer says. That was January 2016. Slowly she experienced weakness. Within six months, her right leg and hand ached. She realised it while washing clothes. After diagnostic tests failed to identify the problem in Pratapgarh, the couple travelled 200 km to Sanjay Gandhi Post Graduate Institute of Medical Sciences (SGPGI) in Lucknow, where a neurologist first identified signs of dystonia.
They then travelled to Mumbai’s Nair Hospital. Hasinabegum got admitted to the hospital on June 9 in 2017, and was discharged by July 30. She was given symptomatic support: Prednisolon 14 mg medicines first, then later a larger dose of 30 mg. “Nothing changed,” Takseer says.
“The problem is we can’t predict how dementia will progress or reverse the memory loss it has caused. When an infection causes dementia, we can only try and limit the infection,” a neurologist from the hospital explains.
The couple returned to Pratapgarh. Every fortnight, Takseer travels to SGPGI in Lucknow. “The doctor has asked me to stop bringing her. So, next time, I will make a video of her, so that they can see her condition.”
He then says again: “At least she remembers our children for now.”