The Long Forgetting: Inside India’s Dementia Emergency

Struggling with loneliness, the once vibrant woman was reduced to a hollow shell, losing her identity and sense of self. She could no longer remember words or names, and became occasionally aggressive. Unable to handle her behaviour changes, her relatives admitted her into an eldercare and dementia care facility, where she spent her last days in the midst of strangers.

Around 8.8 million Indians over the age of 60--that is 7.4% of India’s elderly--currently live with dementia. This number is projected to rise as India ages--one in every five Indians will be a senior citizen by 2050, when the number of elderly Indians is expected to reach 340 million. It's not just a burgeoning health crisis but also a societal challenge with immense implications for families, healthcare systems, and the nation's future productivity.

The World Health Organization defines dementia as “a term for several diseases that affect memory, thinking and the ability to perform daily activities”. It can be caused by conditions which over time destroy nerve cells and damage the brain. The symptoms of dementia begin with forgetting things or events from the immediate or recent past. These episodes gradually increase in frequency and may be accompanied with mood or behaviour changes, all of which affect everyday functioning.

“Changes in behaviour can be challenging and can include aggression, agitation, hallucinations, delusions, and suspiciousness,” explained Soumya Hegde, a geriatric psychiatrist based in Bengaluru. “For example, they may have hidden their keys in a drawer or under the bed to keep it safe, and forget, so they accuse someone else of taking it.”

Why prevalence is rising

Based on the Longitudinal Aging Study in India (LASI) conducted between 2018 and 2020, researchers from institutions in India and the United States found that dementia prevalence among women was almost double that of men, and higher in rural areas compared to the cities and towns. The study also found considerable variation across the country, with lowest prevalence in Delhi at 4.5% and highest in Jammu and Kashmir at 11.0%.

Using population projections and LASI data, researchers estimate that India’s dementia prevalence among the elderly will double from 8.8 million in 2016 to 16.9 million in 2036.

“There has been a noticeable increase in dementia cases in India over the past five to ten years,” Nilanjana Maulik, Secretary General of Alzheimer’s and Related Disorders Society of India (ARDSI) Kolkata, said. “This can be attributed to several factors such as aging population, sedentary lifestyles, poor diets, social isolation, reduced family support, and mental health issues among older adults and increased prevalence of lifestyle diseases such as diabetes, hypertension, and obesity—key risk factors for dementia.”

In 2017, the World Health Organization put out a Global Action Plan (2017 to 2025) on the Public Health response to dementia, and urged countries to come out with their own action plans. WHO’s initiative outlines seven action areas: awareness and friendliness; risk reduction; diagnosis, treatment, care and support; information systems; research and innovation; support for carers; and dementia as a public health priority.

Aligning with the WHO’s action plan to promote research and innovation, the Indian Institute of Science’s Centre for Brain Research (CBR) is conducting long-term studies on brain ageing, focused on capacity-building and risk reduction efforts. The research is specifically tailored to the Indian context. This is important as most existing research in this area is from Western populations and there is a dearth of longitudinal population-based data from low- and middle-income countries (LMIC), researchers say. The vast differences in lifestyle factors, diet, literacy, environmental stressors, and genetics render the findings from high-income settings ungeneralisable to LMIC populations.

The research could help generate context-specific evidence that could inform global frameworks for brain health that are more diverse, equitable, and inclusive of LMICs. For example, the researchers explained that exploring how factors such as undernutrition, cardiovascular risks, multilingualism, and intergenerational living (which are far more prevalent in India than in many Western countries) impact cognitive processes can significantly strengthen the understanding of dementia risk across different populations. Additionally, biomarker profiling and genomic characterisation from underrepresented populations would help build globally relevant risk prediction models, diagnostic tools, prevention approaches, and precision medicine.

The team is running two parallel urban and rural community-based long-term studies that aim to evaluate risk factors as well as protective factors of dementia and other related disorders among cognitively healthy individuals over the age of 45. The Tata Longitudinal Study of Aging (TLSA) includes participants from urban Bengaluru, and the Srinivaspura Aging, Neuro Senescence and COGnition study (SANSCOG) cohort includes individuals from the villages of Srinivaspura Taluk in Karnataka’s Kolar district.

The findings are still in the preliminary stage, but there is an indication of a high prevalence of non-communicable diseases (NCDs) such as hypertension, impaired blood sugars, dyslipidaemia, and obesity in both the urban and rural cohorts. Proportions of these NCDs were around 46% and 55% in rural and urban participants, respectively. “This implies that roughly one in two older adults had metabolic syndrome, urban significantly more than rural,” the researchers wrote in a 2022 article in eClinicalMedicine, a journal part of The Lancet Discovery Science. “The high prevalence of undiagnosed co-morbidities among rural adults is concerning, calling for urgent public health measures in this marginalised and health-disparate population.”

In a March 2025 article in the journal Acta Diabetologica, the team revealed that insulin resistance is associated with poorer cognitive performance related to auditory attention. Then, in an April 2025 article in Alzheimer's & Dementia: Diagnosis, Assessment & Disease Monitoring, the researchers showed that those with hearing loss are more likely to experience cognitive impairment compared to those without hearing loss.

These early findings are in line with the modifiable risk factors outlined by the 2024 Lancet Commission on Dementia, which include hypertension, traumatic brain injury, obesity, depression, social isolation, physical inactivity, diabetes, low literacy, hearing loss, among others.

Managing comorbidities like diabetes and vascular conditions is crucial, as they increase dementia risk, said Asha Dsouza, senior project manager and dementia care lead at Nightingales Medical Trust in Bengaluru. “Additionally, hearing impairment can exacerbate behavioural issues due to communication difficulties, while addressing hearing loss can improve cognitive function and quality of life.”

Awareness of the disease is key to developing interventions and managing the disease. Dsouza added that awareness about dementia is growing in cities like Bengaluru, leading to more families seeking diagnosis and care.

Why seeking help isn’t easy

Despite this growing awareness, there are multiple challenges when it comes to diagnosis. Misconceptions about normal aging versus dementia lead to delayed diagnosis, said Dsouza. “People with dementia often exhibit distinct memory patterns, such as vividly recalling childhood memories but struggling with recent events, often without insight into their memory loss.”

“In the beginning, most people are able to manage their daily functioning independently and the frequency of forgetting events/ names or conversations is sporadic," said Hegde. "If a diagnosis of dementia is delayed, symptoms can become more severe.”

Early detection and diagnosis is important as interventions can delay rapid deterioration. Some underlying medical issues such as a metabolic deficiency, thyroid abnormalities, tumours, autoimmune conditions, or even depression can mimic dementia. Hegde explained, “These need to be ruled out and appropriate treatment initiated. We don’t have a cure for dementia yet, but it is possible to manage the symptoms better, understand strategies to slow down the progression and help the person with dementia have a better quality of life.”

Caring for a family member with dementia can be challenging because of the behavioural challenges and loss of memory. Both patients and their families need support to manage the disease. Centres like Nightingales and ARDSI provide services such as patient and caregiver counselling, training for family and professional caregivers and conduct memory screening and awareness programmes in local communities.

Apart from memory loss, 81-year-old Anand Mehta (name changed) had hallucinations, wandered out of his home occasionally, had trouble sleeping and would not let his wife sleep. “He refused to acknowledge his difficulties, and blamed others," his wife said. "It was very difficult to deal with him.”

Harrowed by his behaviour, she sought help from a geriatric psychiatrist. Through counselling and therapy, she learned practical strategies to dementia-proof their home. This included placing bells on the main door to alert her if he wandered out, and creating flashcards with words and names he struggled to recall. These interventions improved their ability to manage Mehta's condition, bringing some much-needed relief to his wife.

However, Maulik of ARDSI said, specialised clinics are scarce, especially in rural and semi-urban areas. Private neurological consultations and scans can be expensive. “Further, there is a strong social stigma attached to memory loss or mental illness, often leading to delayed help-seeking, isolation of the person, or even neglect. The gap between demand and supply is vast and growing. A national network of dementia care services—anchored in the public health system and supported by public-private partnerships—is urgently required.”

Health systems need to improve

India has fewer than 50 full-fledged dementia care centers across the country, and they are unevenly distributed, with most located in major cities, run by private hospitals, or NGOs, Maulik explained. “The Kerala state government under the Vayomithram project runs mobile clinics including dementia screening and community support. ICCONS, a government‑linked neuroscience institute, provides cognitive disorder care, including dementia.”

She added that full-scale dementia care in India’s public health system remains limited, especially outside major cities. “There is no dedicated national policy for dementia and government health spending is low (~1% of GDP, with only 1–2% of that on mental health), though there’s a pledge to increase this to 2.5% of GDP by 2025. But there are encouraging signs - integration into Ayushman Bharat, National Program for Health Care for Elderly (NPHCE), and NMHP (National Mental Health Program) is being advocated, but implementation is still in early stages.”

IndiaSpend reached out to the Secretary, Ministry for Health and Family Welfare on July 15 regarding the current state of, and plans to enhance dementia care in government hospitals and centres. We will update this story when we receive a response.

“Current solutions, though few, are built for urban areas. There is a dire need for solutions for rural areas--because non-communicable diseases are not diagnosed or managed well, it is possible that dementia prevalence is more,” said Ramani Sundaram, executive director of Dementia India Alliance, a non-profit supporting dementia patients and their families. “But it is likely underreported due to poor awareness, limited diagnostic infrastructure and appropriate screening tools. If people in semi-urban and rural areas are to be reached, the government has to get involved.”

To address this gap in Karnataka to start with, Dementia India Alliance and National Institute for Mental Health And Neuro Sciences (NIMHANS) promoted advocacy with the Government of Karnataka and in 2023, the state government declared dementia as a public health priority.

“In continuation with this, a draft action plan for the state has been submitted by experts from NIMHANS, Dementia India Alliance and the Department of Health and Family Welfare, Government of Karnataka,” Prathima Murthy, director and professor of psychiatry at NIMHANS said. “The implementation of the provisions in the action plan requires multi-sectoral intervention with the role of Government, Health Professionals and Non-Governmental Organizations.”

There are several other initiatives planned through NIMHANS, Dementia India Alliance, Government of Karnataka, the Karnataka Brain Health Initiative and other stakeholders towards the implementation of the action plan, which is still an ongoing process, she explained.

“Some of these initiatives include training primary and community health centre staff and ASHA workers for initial screening and establishing pathways including memory clinics to reach as many people as possible,” Sundaram elaborated. “The memory clinics work with patients and their families, help adhere to treatment plans, do meticulous follow-ups, provide family support and train caregivers to dementia proof their homes.” Aligning with the WHO action plan, the focus is also on creating awareness, promoting research, enhanced diagnosis, and capacity development.

The science shaping dementia care

The Centre for Brain Research is also working to address these focus areas. As the team continues to gather data on risk factors and protective factors, the findings could potentially shape age-specific cognitive screening protocols that could be incorporated into the state’s primary healthcare systems.

The researchers say substantial data on potential modifiable risk factors such as hypertension, diabetes, low-quality sleep, and lack of education could play a pivotal role in informing/designing targeted strategies such as state-level health promotion campaigns and lifestyle interventions for risk reduction. Based on learnings thus far from its cohort studies, CBR is planning to conduct a lifestyle-based non-pharmacological intervention study for dementia risk reduction (inspired by the World-Wide FINGERS trial).

CBR’s research collaboration with UK Dementia Research Institute on blood-based biomarkers that is just taking off, could pave the way for minimally invasive, scalable, and cost-effective methods for early diagnosis of dementia and other related neurodegenerative conditions. In this domain, efforts will also focus on developing scalable tests that move from conventional venous blood draws to simpler, at-home ‘finger-prick’ methods.

Through national and international collaborations, the scientists aim to build AI infrastructure that may make cognitive testing and follow-up feasible in low-resource settings. They plan to team up with existing health programmes across the country. By combining their data, they hope to create a national source of information that can guide public health strategies, policy decisions, and scalable interventions for dementia prevention and healthy brain aging.

The researchers from CBR say that in the long run, they aspire to extend the cohort studies to other regions of India, representing different linguistic, socio-cultural, and genetic groups in order to enhance the generalisability of the findings. CBR’s work has implications not only for improved brain health outcomes in Karnataka and across India, but also for equity-centric global dementia prevention strategies.

Dementia is a life-altering disease. D’Souza of Nightingales said, “Public awareness, timely screening, and comprehensive care are essential for early detection, effective management, and creating a comprehensive care ecosystem for individuals with dementia and their families.”