Just a fraction of an estimated 5 million Indians with dementia are diagnosed. Do we need a new policy to ensure their well-being?
As India’s population ages, the number of people with dementia and Alzheimer’s is set to rise to 7.6 million by 2030. How prepared are medical and care networks to deal with this issue?
Vasanta Nagaraj*, 80, revelled in routine. The Chennai-based homemaker attended yoga classes after her morning cup of coffee, took a crack at Sudoku, listened to music, and sang, cooked, chatted with her neighbours, and settled down at the end of the day to her favourite Tamil soap, Nadhaswaram.
Her son and daughter-in-law, who she lived with, didn’t make much of it when, one evening, Vasanta forgot to tune in to her show. “She lay in bed instead,” recalls her daughter-in-law, Sushila*, who put it down to age or the grief of having recently lost her husband. “She wouldn’t normally let anything get in the way of her TV time; I told myself we all tend to be forgetful at times.”
Then a few weeks later, Sushila found Vasanta fixing breakfast a second time. “It struck me as odd… she had eaten just minutes ago. But even then, we believed it was a natural part of ageing. We tried to keep her spirits up, we took her to the movies, spent more time talking to her.”
It was only when Vasanta told her son one day that she was setting out to meet her father-in-law — “He is waiting for me to make him coffee,” she said — that the couple realised something was very wrong. “Her father-in-law had passed away 50 years ago. We knew it was time to see a doctor.” A physician directed them to a psychiatrist and Vasanta was diagnosed with Alzheimer’s, a progressive degenerative condition that causes brain cells to atrophy and amyloid plaques to form that impair everything from memory and comprehension to orientation and behaviour.
Medical science does not yet have definitive answers as to what causes Alzheimer’s, but it is understood that it is a combination of genetic and environmental factors that mostly afflicts the elderly. And in India, with increased life expectancy and an ageing population, it is estimated that over 5.3 million people live with dementia (a syndrome in which memory, thinking, communication and social abilities deteriorate), of which Alzheimer’s is the most common cause.
This figure is set to rise to 7.6 million in 2030, according to the Dementia in India Report 2020 published by the Alzheimer’s and Related Disorders Society of India (ARDSI). Treatments — including cognitive retraining and medication in the early stages — can help slow the progression of the disorder, but can’t cure it.
Day and night
Vasanta’s symptoms inevitably got worse over the months, but now her caregivers — her son and daughter-in-law — felt more in control with a diagnosis in hand. They found a support group where they could share their experience of caring for a person with Alzheimer’s with others who understood. They could turn to medication. Vasanta went through cognitive stimulation therapy and the couple attended caregiver training to better respond to her behaviour. “With time, I found I had to watch over her more. There were days I had to stop her from drinking phenyl thinking it was milk, I had to help her put on her clothes correctly, show her where the bathroom was, keep her from rubbing food in her hair, keep her from wandering out of the house, sometimes unclothed,” says Sushila. Six years after her symptoms first manifested, and just before her death in 2018, Vasanta had even lost the concept of day and night.
It took two long years for her condition to be diagnosed, and yet Vasanta was among the fortunate ones. According to the Dementia India 2010 report, published by ARDSI, 90% of people with dementia are never diagnosed or treated.
“There just aren’t enough memory clinics [for dementia screening] in the country, so there is under-diagnosis and delay in early intervention,” says Radha S. Murthy, Managing Trustee, Nightingales Medical Trust, a Bengaluru-based organisation that works with the elderly and people with dementia and Alzheimer’s. “There is low awareness about the protocol for the care of patients,” says Dr. Murthy. This means that people with the disorder can spend decades in a society that has little understanding of their condition or which stigmatises them.
An early diagnosis — made through a study of symptom history, cognitive tests and physical investigations — can also help people with dementia and Alzheimer’s leverage the provisions of laws such as the Mental Healthcare Act, 2017, and the Rights of Persons with Disabilities Act, 2016.
Under the Mental Healthcare Act, for instance, people with mental illness have the right to access health services that are affordable and accessible geographically; they have a right to live in, be part of, and not be segregated from society; they have the right to live with dignity, and be protected from cruel, inhuman treatment in any mental health establishment.
The Mental Healthcare Act also calls for services to support the families of people with mental illness — an important clause, as the vast majority of caregivers for people with dementia in India are members of the family. “The impact on them — psychological, social and financial — can be enormous,” says Sridhar Vaitheswaran, consultant psychiatrist and assistant director of dementia care at Schizophrenia Research Foundation (SCARF), Chennai. “Caregiving can be especially challenging because the illness can last up to 10 years,” he says.
A paper published in 2017 in the international journal Dementia, co-authored by Dr. Vaitheswaran, says that carers sometimes have to give up their jobs entirely to meet caregiving responsibilities. Moreover, “given the long period of illness, the costs for dementia treatment and management can be extremely high, even pushing some families into poverty,” the paper says. Dementia and Alzheimer’s are indeed expensive conditions. The annual household cost of caring for a person with dementia in India can be as high as ₹2,02,450 in urban areas and ₹66,025 in rural areas, according to a study published in the Indian Journal of Public Health in 2013 by professors Girish N. Rao and Srikala Bharath of the National Institute of Mental Health and Neurosciences (NIMHANS). This includes intangible costs — such as the loss of productivity or opportunities for the carer — and the cost of medication, consultation and hospitalisation.
Dementia in India 2020, meanwhile, calls for “specific legislation” that looks into aspects of “self-respect, healthcare rights, care, rehabilitation, testamentary capacity, handling property, financial transaction, and palliative care” for people with dementia, all of which can become casualties.
There is, however, good news emerging from India: Bengaluru features among the top 30 global cities in the Dementia Innovation Readiness Index 2020, published by Alzheimer’s Disease International, the Global Coalition on Aging, and the Lien Foundation. It defines ‘dementia innovation readiness’ as the level to which cities are prepared to innovate in terms of strategy, diagnosis, detection, treatment, care, and support of dementia. It helps that Bengaluru happens to have a hub of organisations that work in dementia care, research, risk reduction, and awareness building, such as ARDSI-Bengaluru, NIMHANS, and the Centre for Brain Research at the Indian Institute of Science.
“The fact that we are among the world’s top cities — we are above some developed countries too — is a feather in Bengaluru’s cap,” says Mathew Varghese, Professor of Psychiatry and Head of the Geriatric Clinic and Services, NIMHANS. “What India needs is a national dementia strategy that prepares us to fight this health problem smartly,” he says. “What we see in Bengaluru should be seen in the rest of the country; all places must be made elder and dementia-friendly.”
*Names changed to protect privacy.