Managing dementia care in an ageing India

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Prateep Sen and Tamojit Dutta, Co-CEO, Tribeca Elder Care, explain how dementia is a massive societal challenge, and the ways to prevent, and deal with it

According to Alzheimer’s Disease International, the total estimated cost of dementia is more than $1 trillion, globally. If dementia were a country, it would be among the world’s 20 largest economies. If it were a company, it would be among the top five, globally.

Dementia affects the way we remember, think and communicate. It is a drain on societies, healthcare systems, families, carers and of course, on the patients themselves. It is a progressive disease that affects personal behaviours, cognitive functions and financial capacity. It increases fall risks and compromises personal safety. While dementia develops over time, the rate of change varies greatly among patients – and creates challenges for families struggling to cope with a life-changing event.

Yet, in India, most patients remain undiagnosed. Those who are diagnosed struggle to find the right care at the right price in the right place. It was estimated that four million Indians suffered from dementia in 2015 and spent more than $3 billion on care. Half of that spend was probably on informal care. The true impact of dementia is likely to be a factor higher than these estimates.

By 2050, 19 per cent of the Indian population will be above 60 years. We will have one of the largest global patient populations of dementia. If we do not act today, the cost to society and our healthcare system would be devastating.

Dementia is not a single disease

Dementia is an umbrella term used to describe symptoms where there is a decline in brain functions. It is not a normal part of ageing, though the chance of developing the disease increases with age.

There are many kinds of dementia, some of which result from an abnormal build-up of proteins in the brain. This protein build-up may start impairing nerve cells and, over time, kill these cells. As nerve-cells die, different areas of the brain shrink.

Alzheimer’s disease is the most common cause of dementia, accounting for almost two-thirds of global cases among the elderly. Some patients may have multiple types of dementia at the same time. For example, they might have Alzheimer’s as well as vascular dementia or dementia with lewy bodies.

Dementia care needs specialist support

India spends about 1.5 per cent of GDP on healthcare. Of that modest spend, only one to two per cent is allocated for mental health. While the Mental Health Act, 2017 recognises our right to access public mental health care, the challenge of funding and resourcing these services remain real.

By 2050, 13.5 million patients will probably need dementia care. While the societal burden of the disease is high today, it will be catastrophic tomorrow if we do not plan for public funding and private initiatives from today.

Care for Dementia in India is funded and arranged for by families privately in a vacuum of specialist support and information. Mental health is still a taboo subject which many are unwilling to accept. This delays screening, identification, diagnosis, early intervention and overall management of dementia.

Further, there is poor awareness about this disease – even among clinicians. Dementia is not a public health priority – neither in terms of training personnel nor in creating community care models. Even the private sector has invested little in improving dementia care facilities or capabilities. There is limited advocacy work by patient or carer groups. Detailed national-level policy work needs more impetus to determine the most appropriate care delivery models.

India needs better dementia management

Dementia impacts much more than memory. It takes a toll on emotions – from anger to shock to fear and grief. Sometimes, it changes the sufferer’s behaviour quite dramatically– including intense aggression and violence. And finally, it throws unimaginable financial and logistical challenges for families managing a progressively worsening patient over years.

We need an immediate and broad partnership among key players – GOI, state governments, medical associations, community carers, private organisations and NGOs– to develop dementia-friendly policies, funding plans, clinical protocols, research, care facilities and specialist training.

Some of the specific ideas on improving dementia care in India are increased public and professional awareness, good-quality early diagnosis and early intervention for all, concrete information for dementia sufferers and their carers, improved community-based support services and better care in specialist facilities at hospitals.

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