HealthGap Project

Dementia is not a single disease but a syndrome which is a constellation of symptoms including decline in memory, thinking, reasoning and daily functioning, sufficiently severe to interfere with a person’s independence. 1

Its progressive symptoms worsen over time, though the pace and pattern may vary across types (e.g. Alzheimer’s disease, vascular dementia, Lewy-body dementia)2 In India, dementia is already widespread. Among adults aged 60 and above, the estimated prevalence as of 2023 is about 7.4%, translating to roughly 8.8 million older Indians living with dementia3 .This figure is higher than earlier estimates and suggests a rapidly growing burden4 . 

Dementia in India: 

The Rising Tide and the Unseen Burden on Caregivers

Dementia is rapidly emerging as one of India’s most pressing public health challenges. Between 50–70% of people with dementia in India require care, and most of them need increased care as the disease progresses. The societal cost of dementia in India was already pegged at US$ 3.415 billion (INR 147 billion) in 2010, with informal care making up 56% of the costs and direct medical care accounting for 29%. Household costs vary depending on disease severity, ranging from INR 45,600 to INR 2,02,450 annually in urban areas, and INR 20,300 to INR 66,025 in rural areas. As the number of people with dementia grows, these costs, both financial and social are only expected to multiply.

Despite the growing prevalence, dementia awareness in India remains poor. Families and even healthcare professionals often have limited knowledge about the disease’s nature, causes, and treatment options. Misconceptions, with many attributing dementia to vitamin deficiencies, nervous system issues, or simply “old age” dilute the seriousness of the condition. Focus group discussions with families and doctors reveal widespread concerns about misdiagnosis, with dementia often mistaken for depression, OCD, or general age-related decline. These knowledge gaps delay diagnosis and deny families timely access to support and care. 

The stigma surrounding dementia exacerbates the problem. Families fear the social consequences of acknowledging dementia, particularly in relation to marriage prospects or hereditary concerns. People often believe no treatment or support exists, and even when care is available, it is concentrated in large hospitals and memory clinics in urban areas. In rural regions, frontline doctors, who are often MBBS graduates without specialized neurology training, struggle to recognize dementia symptoms. This leaves families confused, unsupported, and unsure of where to turn for help6. 

The burden of caregiving falls disproportionately on families. Informal caregiving in India far outweighs professional support, with family caregivers providing nearly ten times the care of healthcare professionals. Caring for someone with dementia is emotionally, physically, and financially exhausting. Caregivers often report stress, depression, and a decline in their own well-being, including reduced happiness and inner peace. Many sacrifice their jobs or daily wages to take loved ones to hospitals, creating significant indirect costs. Over time, this strain leads to burnout and emotional exhaustion, particularly in nuclear families where caregiving responsibilities cannot be shared. 

India’s shifting family structures make this situation even more complex. The traditional joint family system which was once a cushion that allowed caregiving duties to be shared is eroding, especially in urban areas. Rising numbers of nuclear families and working women mean caregiving falls on fewer shoulders, often a single family member. While joint families can ease the caregiving burden, they may also introduce conflicts over responsibility, especially where gender expectations dictate that women shoulder most of the care. This social transition raises questions about how Indian society will sustain dementia care in the future7. 

Professional care services are limited, and when available, they are often prohibitively expensive. Employing a home nurse costs between INR 15,000–20,000 per month, far beyond what many families can afford. Moreover, caregivers express a lack of trust in hired nurses, perceiving them as untrained, unloving, and motivated solely by wages. This reinforces the belief that only family members, bound by love and trust, can provide adequate dementia care, even though it places unsustainable demands on them8. 

Medical costs form only a fraction of the overall burden. Studies suggest that medical expenses like consultations, hospitalizations, and medications, make up 20–35% of total dementia care costs. The majority arises from indirect costs like home care, residential support, and the opportunity costs of lost income for caregivers. This means that improvements in medical technology alone will not reduce the financial strain of dementia. Without parallel investment in caregiver support, respite services, and affordable community-based care, the societal burden will continue to rise9. 

Several government and private initiatives have started dementia-focused programs, but they remain limited in scale and reach. Dementia care outside the home is still a relatively new concept in India, and stigma often prevents families from seeking help. Caregivers consistently report a lack of guidance, respite care, and adequate training to manage dementia at home. In some cases, families resort to coercive measures, such as sedatives, seclusion, or restraints, to manage behavioral symptoms, underscoring the urgent need for education and support systems6. 

The Way Forward

India faces a looming dementia crisis. With prevalence rising, costs escalating, and family caregivers already under strain, the country urgently needs a national strategy to address dementia care. This should include awareness campaigns to tackle stigma, training programs for healthcare workers, expansion of memory clinics into primary health centers, and financial and psychological support for caregivers. Policy efforts must recognize that caregiving is not just a family responsibility, it is a public health priority.

If ignored, dementia will not only devastate the lives of those affected but also overwhelm families and health systems. India must act now to prepare for this rising tide.

Bibliography

1.WHO. Dementia. Who.int. Published March 15, 2023. https://www.who.int/news-room/fact-sheets/detail/dementia?utm_source=chatgpt.com

2.What is dementia? Symptoms, causes and treatments. Alzheimer’s Society. Published August 3, 2022. https://www.alzheimers.org.uk/about-dementia/types-dementia/what-is-dementia?utm_source=chatgpt.com

3.Lee J, Meijer E, Langa KM, et al. Prevalence of dementia in India: National and state estimates from a nationwide study. Alzheimer’s & Dementia. 2023;19(7). doi:https://doi.org/10.1002/alz.12928

4.New estimate of dementia prevalence indicates magnitude of India’s challenge - Fogarty International Center @ NIH. Fogarty International Center. Published 2023. Accessed September 28, 2025. https://www.fic.nih.gov/News/GlobalHealthMatters/march-april-2023/Pages/new-estimate-dementia-prevalence-magnitude-india-challenge.aspx?utm_source=chatgpt.com

5.Hurzuk S, Farina N, Pattabiraman M, et al. Understanding, experiences and attitudes of dementia in India: A qualitative study. Dementia. 2022;21(7):147130122211187. doi:https://doi.org/10.1177/14713012221118774

6.Hurzuk S, Farina N, Pattabiraman M, et al. Understanding, experiences and attitudes of dementia in India: A qualitative study. Dementia. 2022;21(7):147130122211187. doi:https://doi.org/10.1177/14713012221118774

7.Angrisani M, Reed NS, Banerjee J, Lee J. Dementia caregiving in India: New evidence from a National representative sample. Alzheimer s & Dementia. 2025;21(5). doi:https://doi.org/10.1002/alz.70266

8.The Experience of Advanced Dementia in India Developing Community Capacity to Provide Care for People with Advanced Dementia in India.; 2019. https://www.uws.ac.uk/media/5654/the-experience-of-advanced-dementia-in-india-report-4.pdf

9.Dementia in India 2020.; 2020. https://ruralindiaonline.org/en/library/resource/dementia-in-india-2020/

10.Hurzuk S, Farina N, Pattabiraman M, et al. Understanding, experiences and attitudes of dementia in India: A qualitative study. Dementia. 2022;21(7):147130122211187. doi:https://doi.org/10.1177/14713012221118774