Dementia is a chronic progressive neurodegenerative disease that affects one or more cognitive processes of memory, thinking, comprehension, learning ability, calculation, language, and judgement and leads to functional impairment.¹ Dementia is the leading cause of dependency and disability among the elderly and poses significant health and economic burden to society.² Dementia is not only devastating to individuals who have it, but also to families and society. The huge cost of disease poses challenges to health systems in terms of currently available resources and future ability to handle the predicted increase in disease burden.³ There is a growing body of evidence on the costs of dementia globally suggesting that dementia is already imposing a huge economic burden.⁴ However, most of the epidemiological cost of illness studies for dementia are conducted in high-income countries with better healthcare resources and the data remains sparse in low and middle-income countries(LMIC), where costs tend to be higher than global average and affordability is lesser.⁵

There is a need to estimate costs of dementia in various settings as it is crucial to understand its impact on families, governments, and their health and social care systems, which is fundamental for raising awareness, achieving proper prioritisation, and focusing efforts toward improving the lives of people with dementia and of their caregivers.^6,7 This cost-of-illness study aimed to analyze the total, direct, and indirect costs of dementia in a population of patients suffering from the illness, attending a tertiary specialty clinic in the private setting in Chennai, India.

The analysis of the cost of illness in patients who had visited GCC in the previous year with the diagnosis of dementia was done from the caregiver perspective.

Table 1 shows the socio-demographic and clinical characteristics of patients with Dementia. Of the 30 patients, 22 were males,19 had primary school level or less education. Majority of them lived with their families and were retired from formal employment.

Table 2 shows resource consumption for patients with Dementia attending GCC in the last one year. Among indirect costs, productivity loss secondary to illness (early retirement, decreased work productivity etc) and unpaid inputs from caregivers (lost leisure time and caregiver burden) couldn’t be computed due to non- availability of the data. Only loss of wage days for the caregiver was assessed in this study.

The study is one of the very few that is done in India, which has looked at the health care costs of dementia. Low- and middle-income countries (LMIC) have a different care pathway for people with dementia compared to advanced economies, and the support services are non-existent in most cases.8,9 The current study covered a population that visited a tertiary care treatment centre in the private sector. The direct health care total cost incurred in lieu of physician consultation, investigations, medication was around rupees 22720/-, which comes to one-seventh of the annual per capita income of an individual in India.10 The direct costs emerged to be most expensive category in this study, similar to the findings from another study done in a LMIC nation, Thailand.11 Notably, in our study, direct social costs exceeded direct medical costs for dementia patients, suggesting that the financial burden of non-medical care and support services could impede patients access to continued rehabilitation, nursing, and day care services. These findings highlight the need for targeted interventions and policy measures aimed at alleviating the economic burden on families and facilitating improved access to essential care services for individuals with dementia. While the medications and most of the basic investigations are provided free of cost in government settings, inconsistency in care and non-availability of resources lead to many seeking more expensive private care, escalating costs.

The direct social costs in dementia are seldom considered in public health policies in Indian setting, as most of the burden of care is borne by the immediate relatives, and it is considered as part of the routine expenses of care for the aged. Our study shows a wide discrepancy in this, primarily because of the difference in the socio-economic backgrounds of the family accessing care. Affluent families were more likely to keep additional specialized personnel for the care of the patient at home, where as lower- and middle-income families bore the entire burden on themselves, directly leading to increased care giver burden. The details of care giver burden were not however available for this study, as this was a retrospective review from the clinical records of the patient alone.

Wage loss for the caregiver in this study appears to be lesser than expected, but this is due to the fact that caregivers had regular salaried employment in most cases (especially children of the patients) and they could avail carer’s leave. Spouses of the majority of the patients were retired and providing most of the day-to-day support. This assumes huge significance when it comes to daily wage earners form the primary carer, and is not reflected in the current study.

However, this study also throws light into the unique characteristics of the population under study. It shows how a serious condition like dementia impacts the society, with all the characteristics intrinsic to the urban population in India, where traditional family attitudes and care giving still form the back bone of care for the patients. This comes with a huge cost on physical and psychological wellbeing of the carers and it remains unnoticed and unpaid for. Introduction of carers pension is an important social support initiative that could be taken up by the government to mitigate this burden.

The study also highlights the urgent need for dementia care services in the public sector like day care centres, respite homes and nursing homes to cater to the escalating costs of care and diminishing supportive care from families for people with dementia.

Our study has many limitations. The sample studied is small, not representative of the full spectrum of persons with dementia in the society, as it was conducted in a tertiary care institution rather than in the community. The study being a retrospective record review, not all information were redeemable, especially related to caregiver burden, and indirect costs related to unpaid work. There is a wide variation in socio-economic backgrounds of the patients and their families. Provision of care by close family members makes it impossible to standardize costs incurred. The stage of dementia and utilization of existing support services from government were not evaluated in the study.

The availability and accessibility of support services for persons with dementia are minimal in LMIC like India. There is a huge variation in the costs incurred as affordability decides utilization when the services are not state sponsored. The cultural norms and attitudes towards elderly play a huge role in determining the societal costs and indirect costs in a country like India. There is a need for prospective epidemiological studies to understand the cost estimates of dementia to direct future service development and fund allocation for provision of care for persons with dementia.