JOIN USDementia: Why the disease needs to be a public health priority
In a recent interview with a television channel, actor Ranbir Kapoor mentioned that his uncle, Randhir, had early-stage dementia. The comment drew an immediate rebuttal from the elder Kapoor, who insisted that he had no such malady.
Because it involved Bollywood celebrities, the incident sparked a brief flurry of write-ups in the media on dementia, its symptoms, prevalence, and so on. However, dementia, which is a progressive neurological disorder that impairs one’s cognitive functions, leading to the loss of memory and reasoning, behavioural changes, and decline in the ability to perform daily tasks, needs to be talked about irrespective of whether or not it comes with a dash of Bollywood gossip.
With the improvement in life expectancy, the number of Indians living with dementia, which typically afflicts those above 60, is projected to rise sharply. (Alzheimer’s disease constitutes the majority of dementia cases.) And given that there is little awareness about the condition, denial even when diagnosis takes place, a lack of healthcare workers trained in dementia care, the financial and social cost of care — which is largely managed at home since institutional care is not only scant but also prohibitively expensive — dementia is likely to become a massive public health crisis in India in the not too distant future.
The World Health Organisation (WHO) estimates that about 55 million people worldwide are living with dementia. Since the percentage of older people in the population of most countries is rising, the number of people with dementia is expected to hit 78 million in 2030 and 139 million in 2050. India may contribute significantly to this total. A Global Burden of Disease study published in ‘The Lancet Public Health’ earlier this year said that by 2050, 11.44 million Indians are expected to have dementia — up from 3.84 million in 2019.
Incidentally, the number of Indians above 60 years of age is projected to go up from 10 per cent of the population currently to 19 per cent by 2050, which, needless to say, will also lead to an explosion in the number of dementia patients.
But the situation is grim already. A 2020 report by the Alzheimer’s and Related Disorders Society of India (ARDSI) estimates that there are 5.3 million people with dementia in the country. The figure could, in fact, be much more since the condition is largely under-reported, and there is a lack of robust mechanisms for tracking the actual number of cases.
Yet, despite the swift rise in the incidence of the disease, the conversation around dementia is all but absent. There are no public awareness campaigns about dementia and the ways to address it, there is no effort to educate people on mitigating the risk of developing it (hypertension, cardiovascular diseases, obesity, diabetes, social isolation, depression, and so on, maybe contributory factors), and there is no attempt on the part of the government to adopt public health measures geared towards early diagnosis and efficient and cost-effective care delivery.
According to a 2019 study in the ‘Journal of Global Health Reports’, only one in 10 Indians with dementia receive a diagnosis, treatment or care.
Care is, of course, the biggest challenge when a loved one develops dementia. And with no cure in sight as yet, care must necessarily be long-term and, more often than not, physically and emotionally draining for the caregiver. The challenge is even greater in the case of super nuclear households that do not have the support structures of the joint-family system of yore. Employing care staff is an expensive proposition. But even if you can afford them, their lack of awareness of and empathy for the condition can be a lesson in how not to manage the disease.
As for institutional care, the few that exist — mostly in the south of the country and in the National Capital Region — are beyond the reach of most Indian families, with costs ranging between Rs 45,000 and Rs 1,50,000. What’s more, if they do not have an NGO tag, private dementia care homes with better facilities are slapped with an eye-watering 18 per cent GST. This is brutal since families looking after a loved one with dementia are already dealing with a hefty, long-term financial burden.
In 2017 the government passed the Mental Health Care Act, which gives every person the right to receive mental health care and treatment from mental health services run or financed by the state. Those suffering from dementia should be able to profit from the provisions of the law, but for that to happen, the government must place the disease front and centre of its public health agenda.
Indeed, there is an urgent need for the state to bump up the allocation of resources for the detection and care of dementia, set up modern, affordable dementia care homes, and scrap the punishing GST on private entities that are providing the service. Above all, it must launch public awareness campaigns about the disease so that dementia is not misunderstood and dubbed as “madness” or misinterpreted as a manifestation of the usual age-driven deterioration of mental faculties.
Four years ago, my mother started showing signs of cognitive decline. I refused to believe that my brilliant, intellectual mother, who used to have a near-photographic memory, was suffering from anything other than a “little age-related confusion”. But it was dementia, all right. And it quickly worsened. Ever since, I have watched her personhood disintegrate by degrees; her memory — the repository of her life, the crucible of my childhood — vanished as though wiped clean from a slate.
Dementia is a horrifying disease with the capacity to ravage both the patient and their caregiver, albeit in very different ways. The rapid uptick in the number of cases, and the impending surge in numbers in the coming years, is really a call to action for the government to make every possible effort to reduce the economic and social burden of the disease and make sure that all those who are suffering from dementia are cared for and can live with dignity.
(Shuma Raha is a journalist and author)