Dementia — the urgent need for India to invest in elder care
India's population is rapidly ageing. The share of individuals aged 60 or older is expected to touch 20 crore by 2031. Estimates indicate it is then projected to increase to nearly 20% of the total Indian population by 2050.
With age being a major risk factor for dementia - an umbrella term for several diseases affecting memory, other cognitive abilities and behaviour that interfere significantly with a person's ability to maintain their activities of daily living - India faces an alarming potential increase in the number of people with age-related cognitive decline.
In 2023, the Longitudinal Aging Study in India (LASI) and LASI-Diagnostic Assessment for Dementia reported that the prevalence of dementia in India among individuals aged 60 and older was 7.4%, with higher rates in women and rural regions. The study estimated that by 2036, the number of cases would quadruple, touching 1.7 crore.
The World Health Organization (WHO) declared dementia a public health priority in 2012 and launched a Global Action Plan on the public health response to dementia (2017 – 2025) which emphasises critical areas such as dementia awareness, risk reduction, diagnosis, treatment, caregiver support, and research.
As India grapples with the challenges of a rapidly growing elderly demographic, the need for specialised elder care has never been more urgent, experts say. Currently, India has a severe shortage of resources, trained caregivers, and comprehensive healthcare systems to adequately address the needs of those suffering from dementia.
The first steps: risk reduction, early diagnosis
Despite advances in drug development, risk reduction remains the only proven prevention tool, Alzheimer's Disease International (ADI), the global federation of over 100 Alzheimer's and dementia associations, has warned. Calling on governments around the world to urgently fund dementia risk-reduction research, education, and support services, ADI has said that nearly 40% of projected dementia cases can be delayed or potentially even avoided by addressing risk factors. While 40 governments worldwide have so far developed national dementia plans, the proposal is yet to gain momentum in India.
Asserting the importance of early detection, awareness and effective care systems, Thomas Gregor Issac, associate professor at the Centre for Brain Research (CBR) at the Indian Institute of Science (IISc) in Bengaluru, said there is a need for expanded healthcare infrastructure, professional training, and a national dementia policy. This will help address India's growing dementia challenge, which includes early diagnosis and treatment gaps, he said.
Pointing out that dementia is often misunderstood in India, he said this was due to a lack of awareness and cultural misconceptions, which led to delayed evaluations and diagnosis. This in turn considerably impairs the quality of care.
'A large chunk of pre-dementia syndromes like mild cognitive impairment and subjective cognitive decline is often misdiagnosed, underdiagnosed and undiagnosed. While the thrust should be on better screening strategies at the community level, a national portal or dementia registry that is fully functional, ensuring patient and caregiver anonymity, but with proper medical data, blood test reports and neuroimaging data can be a wonderful resource for all researchers in the country working on different angles of this problem,' he said.
A previous global survey by ADI revealed that a shocking 80% of the public still incorrectly believes that dementia is a normal part of ageing rather than a medical condition.
'In a value-driven society such as India, where intergenerational support and family ties are strongly embedded in cultural norms, help-seeking behaviour for dementia remains low. The idea of using care facilities or depending on care homes is often perceived as a failure to fulfil familial responsibilities and is associated with stigma. The absence of proper support networks for caregivers greatly increases the financial, emotional, and physical strain, which frequently results in stress, burnout, and weakened health, all of which influence the standard of care given to people with disabilities or chronic illnesses,' Dr. Issac explained.
Community-level care
P. T. Sivakumar, professor of psychiatry, and head of the Geriatric Psychiatry Unit at the Department of Psychiatry, NIMHANS, Bengaluru, said dementia care requires a holistic, public health approach with a focus on prevention, early diagnosis, comprehensive post-diagnostic support, daycare, long-term care and caregiver support. Promoting public awareness to facilitate timely diagnosis, and a dementia-friendly community with adequate resources to support care were essential, he said.
Dementia care should be community-based through the development of a cadre of community-based health workers, with a primary focus on integrated health and social care for the elderly population, he said.
'Increasing the investment to promote community-based healthcare of the elderly and long-term care systems is essential to prepare for the rapid growth of the elderly population in the next two decades. The development of the cadre of ASHA workers at the community level two decades ago was one of the biggest healthcare reforms for maternal and child healthcare. It is time to develop a similar cadre of health workers with a dedicated focus on the elderly population, including for dementia care,' he said.
Asserting that training and capacity-building of health workers at all levels of the health system to promote dementia care was also essential, Dr. Sivakumar said there was an urgent need to develop programmes and services for dementia care under the existing policies and schemes relevant to the elderly.
'The National Mental Health Programme and the National Programme for Health Care of Elderly should be strengthened adequately to support dementia care. States with high proportions of elderly population like Kerala, Tamil Nadu, Karnataka, Himachal Pradesh, etc. need to focus on this area,' he said.
NIMHANS has launched a pilot study for Amyloid PET imaging to diagnose Alzheimer's disease, the most common form of dementia which can impair memory and significantly lower quality of life.
'A public health emergency'
Ramani Sundaram, executive director of Dementia India Alliance (DIA), said despite its impact, a majority of dementia cases are identified only in the advanced stages when intervention options are limited, care costs are high, and the quality of life for individuals and their families is severely compromised.
Pointing out that dementia is a public health and economic emergency, she said without early detection and intervention, India's already stretched healthcare infrastructure will bear the brunt of rising hospitalisations, emergency admissions, and long-term institutional care.
Late-stage dementia care is significantly more expensive than early interventions. DIA president Radha S. Murthy said public health systems would soon be overburdened due to a lack of community-based support. 'Families suffer financially and emotionally with unplanned expenses and the demands of full-time care,' she added.
According to a study published in the Indian Journal of Public Health in 2013, the cost of dementia care in India in 2010 for 37 lakh people was ₹23,300 crore annually. It was estimated that at present, families of 88 lakh people with dementia would be spending about ₹1,18,902 crore annually to take care of their kin. Based on current projections, the economic burden on households to take care of 1.7 crore people with dementia by 2036, would be a staggering ₹3, 08,395 crore annually, experts pointed out.
Despite this growing crisis, India continues to lack adequate infrastructure, resources, and policies to support dementia patients and their families.
Also Read: Indian Institute of Science researchers highlight India's need for national dementia policy with focus on cultural factors
Need for a comprehensive policy
A recent paper by researchers from CBR highlighted the need for a comprehensive dementia policy in India to address the needs of the older population and their caregivers on a national scale.
This policy should prioritise effective dementia prevention strategies and equitable allocation of resources, incorporating evidence-based approaches. The policy should also integrate dementia care into both geriatric and mental health plans, stated the paper published in The Lancet Psychiatry in January this year.
Establishing such a policy, the paper noted, required extensive consultations among various stakeholders and organisations, including government bodies, healthcare professionals, researchers, and individuals living with dementia and their caregivers.
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