|Year : 2013 | Volume
| Issue : 2 | Page : 71-77
Cost of dementia care in India: Delusion or reality?
Girish N Rao1, Srikala Bharath2
1 Additional Professor, Department of Epidemiology, National Institute of Mental Health and Neurosciences, Bangalore, India
2 Professor, Department of Psychiatry, National Institute of Mental Health and Neurosciences, Bangalore, India
|Date of Web Publication||15-Jul-2013|
Girish N Rao
Additional Professor of Epidemiology, National Institute of Mental Health and Neurosciences, Bangalore - 560 029
Source of Support: None, Conflict of Interest: None
| Abstract|| |
Context: In 2010, nearly 37 lakh Indians have been estimated to be suffering from dementia. Estimated costs of care in published literature do not reflect the actual expenses of individual households. Hence, a household budget approach was undertaken to arrive at the costs of dementia care in India. Materials and Methods: We identified and listed the different components of care, classified the applicability of care for the different components with respect to mild, moderate, and severe cases. This framework was utilized to assign costs of care and arrive at the household costs of care for a Person with Dementia (PwD) in both urban and rural areas. Results: The total expense was similar to that reported by individual households. The annual household cost of caring for a person with dementia in India, depending on the severity of the disease, ranged between INR 45,600 to INR 2,02,450 in urban areas and INR 20,300 to INR 66,025 in rural areas. Costs increased with increasing severity of the disease process. The costs of informal care contributed to nearly half of the total costs either in rural or urban area. With increasing severity, proportion of medical costs decreased while social cost increased. Medical costs in rural areas were nearly one-third of the total costs as against less than one-fifth in urban areas. Conclusion: The household budget model realistically estimated the household costs of care. It is hoped that the comprehensive and generic framework would prompt health professionals, researchers, and policy makers in India to catalyze geriatric health services, particularly for care for PwD.
Keywords: Alzheimer′s dementia, Costs of care, Dementia, Economic analyses, Household expenses
|How to cite this article:|
Rao GN, Bharath S. Cost of dementia care in India: Delusion or reality?. Indian J Public Health 2013;57:71-7
| Introduction|| |
Estimating the economic impact of an illness is a challenge. Traditionally, disease burden is measured using one or more of the epidemiological indices (incidence, prevalence, and mortality rates) and the socio-economic impact of illness is acknowledged but poorly quantified. Despite one or more limitations, economic impact studies contribute significantly to health systems analysis, choosing alternatives for interventions or evaluating the interventions.  Under the aegis of the National Macroeconomics Commission, Government of India attempted to estimate the economic burden of different diseases in India.  Lack of empirical data proved to be a major limitation for making realistic estimates. There have been focused efforts with respect to select conditions like malaria,  road crashes, Ischemic Heart Disease (IHD), stroke, diabetes, and cancer , and also regarding risk factors like tobacco  and alcohol. 
Recent studies indicate an alarming increase in the numbers of Persons with Dementia (PwD). Global estimates have revealed that the proportion of PwD in developing countries like China and India is huge: Nearly one-fourth (26.8%) of the global burden in 2001 was from these two countries and estimates indicated a 300% increase between 2001 and 2040.  Amidst competing interests, health services for PwD are neglected both by the families and by the health policy-makers. Consequently, there is a dearth of scientific scrutiny and published work on dementia and its economic impact. The problem would become acute with changing lifestyles and breakdown of traditional social security systems. A recent study in five locations in India listed 84 types of acute, chronic, accidental, and other types of illness and examined for cost analysis.  Dementia, or 'memory disturbances,' or abnormal behavior following memory disturbance were not among these 84 complaints.
International experience has shown that economic analysis significantly influences health administration to action. , Cost of Illness studies have been a vital tool for planning and initiating a health program or services. With a projected increase in the number of elderly with dementia amidst diminutive health services, the need to undertake an economic analysis of the services for PwD is urgent and imperative. The present endeavor was undertaken to identify a framework to meaningfully and realistically estimate household costs of care and thereby costs of dementia services in India. Additionally, an attempt is also made to estimate the cost of care of a PwD from diagnosis to resolution.
| Materials and Methods|| |
The present work to delineate a framework to estimate the household costs of caring for a Person with Dementia (PwD) adopted a household budget approach i.e. listing all heads / expense, which the household can possibly make due to illness and its management and has to budget for its expenditure due the natural course of illness. The different components of care for PwD were comprehensively listed out during the brain-storming session and modified after feedback obtained during the Alzheimer's and Related Dementias Society of India (ARDSI) national meeting in Kerala, India. In the absence of published literature, PwD were functionally classified as mild, moderate, or severe depending on need for care and / or medical attention: Persons with mild dementia (approximately about 30% of all PwD) need care and medical attention of some level greater than a normal elderly; persons with moderate dementia need extra care and medical attention (approximately 60% of all PwD); persons with severe dementia require special care all time around and medical attention (approximately 10% of all PwD); these assumptions were based on the clinician's acumen of the psychiatrist (SB) and was whetted by two other psychiatrists independently. Survival of PwD after diagnosis was assumed to be 5 years, 3 years, and 2 years for mild, moderate, and severe cases, respectively. The relative priority for different care components with respect to mild, moderate, and severe cases of PwD was arrived at by consensus (between NG and SB), and applicability was arrived at keeping in mind the severity of disease and the proportion of PwD needing care; and was finalized after obtaining feedback from a larger group consisting of psychiatrists, public health persons, and social work [Table 1], who has met to finalize the ARDSI report.
The number of persons with dementia was taken to be proportionately distributed in urban and rural areas (30% and 70%, respectively). Over the counter rates of medication (cognitive enhancers and anti-psychotics) of common Indian brands were utilized to assign the costs of medications. Wherever applicable (lost productivity), the minimum wages in rural areas under the Mahatma Gandhi Rural Employment Guarantee program of Government of India was used as a benchmark. Overall costs were the sum of the individual costs. Where individual cost component was not readily available, realistic assumptions (costs for travel) were made or nominal amounts assigned (house modification, dietary modifications) [Table 1]. The life cycle approach (detection / diagnosis to death) was adopted to calculate lifetime costs of care for a PwD.
The prevalence of dementia in Indian elderly population was taken to be 3.69 million.  Indian epidemiological studies have shown that the predominant type of dementia is Alzheimer's variety and hence the discussion within this paper is predominantly with respect to Alzheimer's Dementia (AD).
The overall and the individual costs were reconciled with available information from two day care centers (Trivandrum and Bangalore), two residential centers (Trivandrum and Guruvayoor), a hospital running a special clinic of Geriatric Psychiatry (NIMHANS), and the information available with ARDSI national office.
| Results|| |
The framework to cost an illness and in this context for dementia comprehensively covered all the plausible expense undergone by a household [Table 1]. In the absence of empirical information of incurred costs, this template reflects all the expenses of the household including the negative impact of illness on productivity. The dimension of need and applicability further refines the costs of care. While need reflects the requirement of expense component, applicability factors the differential demand [For example: Informal care giving is not needed by those with mild dementia, those with severe dementia would need it to a greater extent. In addition, informal care giving is equally applicable to all PwD. In contrast, while medication to manage Behavioral and Psychological Symptoms in Dementia (BPSD) is needed by all types of severity, the costs of medications are applicable to only 50% of the persons with severe dementia, remaining requires supportive care but not medication for BPSD]. This template was used to calculate the costs of care for PwD.
The annual household cost of caring for a person with dementia in India, depending on the severity of the disease, ranged between INR 45,600 to INR 2,02,450 in urban areas and INR 20,300 and INR 66,025 in rural areas, and the costs increased with increasing severity of the disease process [Table 2]. Extrapolating these costs, nationally, it was estimated that households would be spending INR 23,330 crores. The total money spent is similar in urban and rural areas [Table 3].
|Table 2: Break up of costs (in Indian rupees) per year per person for care of PwD according to place of residence|
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|Table 3: Total household costs (in crores of Indian Rupees) per year for care of PWD in India|
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The informal care cost contributed to nearly one half of the total costs either in rural or urban area [Table 4]. While medical costs proportionately decreased with increasing severity, cost of care increased nearly two-fold in urban areas and four-fold in rural areas. Nearly two-thirds (60.3%) of the total costs was due to informal care, and more than one-fourth due to care costs (26.1%), remaining (13.6%) was due to medical costs. With increasing severity, proportion of medical costs decreased while care cost increased. However, medical costs in rural areas were nearly one-third of the total costs as against less than one-fifth in urban areas.
It could be ascertained from personal experiences of carers (middle socio-economic strata) from Trivandrum, Kerala that the approximate costs for managing a PwD with professional carers round the clock at their residence in the city to be about INR 14,000 per month, while the same in a smaller town with a semi-trained carer to cost about INR 8,000 per month. A person with AD and staying in an old age home in a metropolis would spend approximately INR 9,000 per month. Costs differed in different stages of illness; during the 1 st stage (mild), it cost INR 7,000 per month and was INR 10,000 and INR 14,000 per month during 2 nd (moderate) and 3 rd (severe) stages of illness, respectively. With progression of disease, the expenses increased consequent to home visits of the doctor and frequent need for investigations. 
Few case studies
Mr. P is a retired government official from Trivandrum. His wife had Alzheimer's Dementia and later passed away. An active member of a support group for families with dementia, he wrote - "I have looked after my wife personally over the years. Initially, it was minimal help. She started attending the day care center in our city. As she worsened, the cost increased - often she became confused. Almost every month, there used to be 2 - 3 to visits to the doctors, and the investigations advised by them used to cost a lot. Approximately, I must have spent about Rs. 6000 to 8000/ pm on various issues including juices. I did not have to pay to the attenders, but took a lot of help from the home care team of the day care center. My whole day was spent in her care. I could not even visit my son abroad."
Mrs. SB has severe AD. Her daughter MR wrote: "My mother had been ill for over 6 years. Over the years, she has worsened, and now she is totally taken care of by two ladies over the day and night. One of them is our maid who also takes care of her in the night; I also have arranged for a male person to come and sleep in the night in the house; my mother is very agitated often, and I need help to control her. I spend about Rs. 1000/ per month each on medication and diapers. I have to pay Rs. 6000/pm to the day lady, Rs. 2000/pm towards the additional charges to my maid, and Rs. 2000/pm to the security. We have not hospitalized her in the last 2 years. We manage the restlessness and the agitation at home. We cannot have many visitors. I have bought a wheel chair, 2 commodes, and a walker and a hand liquidizer in the last 2 years when she has worsened. We need to buy more fruits and protein drink as she does not eat any solid food; even soft rice and dal had to be made into liquid (for her to eat)."
Mrs. C is a widow and daily wage worker from Chittoor whose mother has moderate dementia. She said - "My mother is forgetful (ness). My brother is not willing to look after her (so she with me). She passes urine in the dress daily - I need to go for work - to feed both of us. I am afraid she may open the door (of the house) and go. So I lock the house from outside and go to work. I get Rs. 150/per day. I lose that wage if I do not go to work. So by the time I come back, my mother would have passed urine in her saree. I feed her in the morning and after I come back. I have no money to pay our neighbor to feed her in the noon. I spend Rs. 100/- to come to the hospital every 2 months. The free medicines by the hospital help me to manage my mother in the night. Without medication she cannot sleep."
| Discussion|| |
The geriatric health services in India have perceptibly changed in the recent past; however, this is not commensurate with the felt-needs.  The health of the elderly in India is constrained by, not just availability and accessibility, but also, affordability of services. The national health accounts indicate that nearly 90% of the health expenditure in India is Out-Of-Pocket (OOP) expenditure.  With burgeoning elderly population, managing the costs for care, even at the household level through OOP expenses is not a perceivable viability. Public health needs to step in for developing systems of management and care. In this context, if state health care systems are not prepared, they could get paralyzed by the demand placed on it as a result of the illnesses of the large elderly population. Hence, cost analysis of dementia, both in household and national context, is not just necessary but also relevant.
The present study did a comprehensive listing of the different components for care and management of PwD and used it to arrive at per person cost of caring and the total cost of care by the households. This template provided the household perspective of costs. WHO  recommends an algorithmic approach to address variations and heterogeneity in methodology of different economic analyses and in this framework, the present approach classifies itself as a microeconomic estimate at household level.
Empirical data on costs of care is limited by the health-seeking behavior of the individual patients or their carers and results in very low costs of care.  An expert guesstimate of the individual components of care provides a realistic near-actual estimate of care provision. This approach reflects the desirable goal of a health care delivery system and hence, the true expenditure. The corroboration that the concerned households actually spend such amounts further strengthens the method adopted.
A rural and urban differential in costs have been considered for estimating the expense of care as the costs of care is known to vary widely. In addition, it is widely acknowledged that as the disease process varies amongst individuals, not all persons with the diagnosis will need all the services. Hence, a lesser proportion of PwDs (10% of moderate cases and 20% of severe cases needing hospitalization and 10% of mild cases and 20% of moderate cases needing day care, etc., as noted in [Table 1]) has been taken for calculations. This approach further provides realistic estimate of household level costs and also a meaningful estimate of the total expenses incurred by households with PwD in the country.
Prince and Wimo,  in their recent estimates using time taken by carers, either for Personal or Instrumental Activities of Daily Living (PADL or IADL), have factored the average national wage to arrive at societal costs. The per capita cost for managing a PwD has been estimated to be about USD 941 (INR 43,000) for the year 2010 and extrapolating it total costs for the country would be USD 3,472.3 million (INR 159 billion). In earlier estimates, Wimo et al. , in their series observed that between 2005 and 2008, the cost of dementia globally increased by 34%. Assuming a relationship between the cost of care per PwD and Purchase Power Parity (PPP) adjusted Gross Domestic Product (GDP) per person of a specific county, their projected total cost of dementia for India in 2009 (with 3.2 million PwD) was USD 13,700 million (INR 618 billion). While both direct and indirect costs were included, the indirect cost was calculated at 1.6 hours/per day of care for ADL and 3.7 hours /per day for instrumental activities. Obviously, the estimates for 2010  are not just lesser but also quite conservative compared to the estimates of 2009. 
The huge difference in the cost estimates for 2009  and 2010  is glaring and points to the differences in methodology adopted. While the estimates highlight and compares the huge costs and the burden of caring for a PwD, globally and with respect to India, the annual cost of USD 941 (` 43,000)  belies the actual expenses of the carers and fails to account for the increasing demand placed on the carer in later stages of moderate and severe dementia. The model developed by the present study budgets the household expenses for care of PwD, relates all expenses incurred by the family and its members, and incorporates several naturalistic details into the framework of costs. For example, it includes one-time house modification, puts a value to the wages lost for informal household carer and guesstimates lost productivity of the PwD. The model thus developed apart from being comprehensive, permits focused data collection for estimating costs of care and in absence of data from community, also provides for meaningful estimates derived from expert consensus, which is comparable across countries.
A 'willingness-to-pay' approach would summarize the household aspirations and assign a money value for the health problem but, in reality, does not include the several intangibles (like lost productivity of the informal carer, diet costs, etc.,); loss of productivity of both the PwD (though elderly and retired), and also the carers are relevant but often understated. Hence, the expert guesstimates seem plausible and realistic, and an empirical study will validate and refine the estimates.
Ideally and desirably, a cost of illness study is relied upon to give estimates of care burden. There is a serious lack of such data from India with regard to not just dementia but also other illnesses with a substantial care component. Published work on the cost of two chronic illnesses (diabetes and epilepsy, [Table 5]) though not comparable show that the costs estimated do not realistically reflect the ground realities. Hence, the current estimates of an annual cost of INR 20,300 to 2,02,450 to care for a PwD, depending on the severity, is probably a true reflection of the economic burden of an Indian PwD. Personal experience of individual accounts of middle class families with PwD during moderate and severe stages of dementia lends validity to the current work.  Congruence between the current estimates and the earlier international estimates  lends further strength to the framework developed and the estimates derived.
In conclusion, dementia till date is in the 'blind spot' of health professionals, researchers, and policy makers in India. ,, The current work indicates the enormity of the economic burden of dementia in India both in 2010 and in future, particularly on the households. Time would not be far off before the service providers, and policy-makers are forced to note this 'black hole' of 'economic drain and demand.' The framework developed for costing care for PwD at household level is most comprehensive and sufficiently generic to permit costing for other diseases / illnesses. 
| Acknowledgement|| |
The authors would like to acknowledge the critical support of Dr. Mathew Varghes and Dr. G Gururaj, of NIMHANS, in refining and revising the manuscript; Dr. Shaji K S, Dr. Amit Dias, Dr. Jotheeswaran, and Dr. Kavita Rajesh for their invaluable suggestion while drafting the manuscript; Dr. Jacob Roy and ARDSI team who encouraged us to take up this effort; Dr. Martin Prince for his resourceful insights during the drafting of the earlier version of the manuscript.
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[Table 1], [Table 2], [Table 3], [Table 4], [Table 5]
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