Cost of Dementia in India Srikala Bharath & Girish N. Rao1 NIMHANS, India Dr. Srikala Bharath DPM, MD, DC,AP FRCPsych Professor of Psychiatry, srikala.bharath@gmail.com 1Dr. Girish N. Rao, MD Associate Prof Epidemiology NIMHANS, Bangalore, India

Srikala Bharath, India Cost of Dementia, ADI 2012 Disclosure No Conflicts of Interest Srikala Bharath, India Cost of Dementia, ADI 2012

Srikala Bharath, India Cost of Dementia, ADI 2012 Dementia – so what? DEMENTIA IS A CONDITION OF THE ELDERLY INDIA IS GRAYING RAPIDLY Srikala Bharath, India Cost of Dementia, ADI 2012

Srikala Bharath, India Cost of Dementia, ADI 2012 AGE PYRAMID                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                     77 million in 2001 100 million currently 177 in 2050 Srikala Bharath, India Cost of Dementia, ADI 2012

New estimates for India millions 12.5 6.4 ADI commissioned a group of researchers to review the available epidemiological estimates, and come up with consensus estimates of the prevalence of dementia in all world regions, from which a total number of cases worldwide could be calculated2.2 Million of Women and 1.5 Million of Men 3.7 Az Srikala Bharath, India Cost of Dementia, ADI 2012

Srikala Bharath, India Cost of Dementia, ADI 2012

Srikala Bharath, India Cost of Dementia, ADI 2012

Srikala Bharath, India Cost of Dementia, ADI 2012 Cost of Illness Direct Cost – Medical and Non Medical (social) Indirect cost – Loss of Productivity, Wages, Transportation etc Intangible cost – Suffering, Pain etc Direct Cost - Out of Pocket Cost (OOPs) Srikala Bharath, India Cost of Dementia, ADI 2012

Srikala Bharath, India Cost of Dementia, ADI 2012 WHY ASSESS COD? Provides the Economic Burden of Dementia Informed Choices can be made by the government about priorities in Elderly - Which Health issues to be addressed - Which interventions work - Policies /Program Srikala Bharath, India Cost of Dementia, ADI 2012

Srikala Bharath, India Cost of Dementia, ADI 2012 Earlier Estimates Wimo et al (2010) Alz & Dementia Cost in 2009 Based on prevalence, country specific GDP per person, average wage, Purchase Power Parity (PPP), available COD studies from different countries. 34.4 million PwD. $ 422 million in 2009 $ 142 million for informal care (34%) Depending on quantum of Informal care (1.6 hrs/ day or 3.7 hrs/day) the cost varied from $142 to 329 million. An increase of 34% in the cost from 2005 to 2009 incl. 18% increase in fixed costs. 77% of the cost is from more developed regions (MDR) with 46% prevalence. Wimo did the following. Looked at all available economics of Dementia care in the various countries. Converted them into hours of care. Calculated Direct Cost and Informal Care. Srikala Bharath, India Cost of Dementia, ADI 2012

Cost of Dementia Care in India Wimo et al 2010 Readjusted total societal cost of Dementia US$ 9.4 to 13.7 million / INR 451 to 657 billion Direct costs USD 6.1 million /INR 292 billion Informal care 34 % 56% Annual cost / person US$ 2, 295 (INR 96,850) to USD 5061 (INR 263,350) According to them the actual cost now in India is $3.415 million (INR 147 billion) 2/3 informal care. 29% is direct medical cost and cost PwD $925 (INR 43, 285 /pa) Srikala Bharath, India Cost of Dementia, ADI 2012

Srikala Bharath, India Cost of Dementia, ADI 2012 Methodology Desk work using a naturalistic approach. Different components of care for PwD comprehensively listed out during the brain storming session Cost the individual components of care: experience and expert guesstimates. Consensus on relative priority for care components Modified after feedback from families/ care providers Life cycle approach adopted to calculate life time costs of care for a PwD 2 epidemiologists, one social worker, 4 psychiatrists Srikala Bharath, India Cost of Dementia, ADI 2012

Srikala Bharath, India Cost of Dementia, ADI 2012 Realities Expenses incurred by 3 different persons A person taken care by professional carers round the clock at home in a city Rs. 14,000 p.m. A person with AD who is staying in an old age home in Chennai Rs. 9,000 p.m A person staying in a small town and taken care of by semi-trained carers Rs. 8,000 p.m.   Srikala Bharath, India Cost of Dementia, ADI 2012

Srikala Bharath, India Cost of Dementia, ADI 2012 Assumptions Prevalence of dementia taken to be 3.69 million PwD were functionally classified depending on need for care and or medical attention: Mild (30% of all PwD) need care and medical attention of some level greater than a normal elderly; Moderate (60% of all PwD) need extra care and medical attention; Severe (10% of all PwD) need special care all time around and medical attention. Survival of PwD was assumed to be 5 years, 3 years and 2 years for mild, moderate and severe cases respectively. The human capital value to estimate cost of care-giving. Over the counter rates of medication (cognitive enhancers and anti-psychotics) of common Indian brands were enquired before assigning the costs of medications. Srikala Bharath, India Cost of Dementia, ADI 2012

Needs, Components & Assumptions Components and assumptions for costs Need and Applicability Mild Mod Severe Medical Consultation ++; 100% +++; 100% 2. Medication 50% 3. Lost Productivity 4. Informal Care Giving - ; +++; 5. Paid care / residential care by health aide- NA  60% HIC 30% MIC 75% HIC 25% MIC Srikala Bharath, India Cost of Dementia, ADI 2012

Needs, Components & Assumptions Components and assumptions for costs Need and Applicability Mild Mod Severe 6. Hospitalization - ; Not expected +; 10% ++; 20% 7. Day Care NA 8. Special Food 33% 75% 9. House Modification 50% +++; 100% Note: 1) -,, +, ++, +++ indicates the priority from lowest to highest 2) Applicability is the proportion of PwDs needing that particular service Srikala Bharath, India Cost of Dementia, ADI 2012

Srikala Bharath, India Cost of Dementia, ADI 2012 Particulars Severity of Dementia   Mild Moderate Severe 1)     Medication 3,600 18,000 2,700 2)     Consultation 1,700 3)     Investigation (one time) 3,000 4)     Hospitalisation 2,000 4,000 5)     Transportation 1,200 800 6)     Paid / Residential care 27,600 1,05,000 7)     Day care 9,600 19,200 8)     Lost Productivity 36,000 48,000 60,000 9)     Informal Care (Opportunity Lost) 12,000 10) Special food 2,970 20,250 11) House modification (one time) 2,500 3,750 5,000 Srikala Bharath, India Cost of Dementia, ADI 2012

TOTAL for all PwD in India INR 500,279 million (house hold cost) Particulars Severity of Dementia Mild Moderate Severe TOTAL cost per person 69,600 1,51,420 2,38,450 PwD (in millions) 1.107 2.214 0.369 Overall cost (in millions) 77,047 335,244 87,988 TOTAL for all PwD in India INR 500,279 million (house hold cost) Srikala Bharath, India Cost of Dementia, ADI 2012

Srikala Bharath, India Cost of Dementia, ADI 2012 Particulars   Severity of Dementia Mild Moderate Severe Direct medical care 11.9% 16.3% 4.8% Direct social care 15.5% 25.4% 38.1% Informal care 72.6% 58.3% 57.1% Srikala Bharath, India Cost of Dementia, ADI 2012

Srikala Bharath, India Cost of Dementia, ADI 2012 Projections Over a 10 year period, (after diagnosis, being as mild dementia for 5 years, moderate dementia as 3 years and severe dementia as 2 years), the total cost for an individual household would be nearly Rs 1.3 million. Compared to 2010, with average annual inflation of 10%, the costs would more than double by 2025 increase five-fold by 2045 seven times by 2050 Srikala Bharath, India Cost of Dementia, ADI 2012

Srikala Bharath, India Cost of Dementia, ADI 2012 Take home messages A comprehensive estimate Realistic estimate Household costs calculated Several unanswered questions Most importantly what next????? Srikala Bharath, India Cost of Dementia, ADI 2012

Work in the Geriatric Services, NIMHANS Household Burden of Dementia – cross sectional enquiry of 100 families with persons with dementia on their OOPS Cost of Dementia – a prospective study of 250 families over one year on their OOPS in persons with dementia in comparison to elderly with severe mental illness. Both initiated in 2011 Srikala Bharath, India Cost of Dementia, ADI 2012

Srikala Bharath, India Cost of Dementia, ADI 2012 Thank you Acknowledgements : Dr. Girish Rao, Assoc. Prof Epidemiology, NIMHANS, Prof. M. Varghese, Dr. Sivakumar PT, Dept Psychiatry, NIMHANS, Geriatric Group Sanofi India – for new initiatives Families of PwD and members of ARDSI Srikala Bharath, India Cost of Dementia, ADI 2012