Chairperson, Alzheimer’s and Related Disorders Society of India India Dementia Strategy International Conference of ADI London, March 8th 2012 Meera Pattabiraman Chairperson, Alzheimer’s and Related Disorders Society of India

Agenda Dementia – A Significant Challenge in India Importance of Advocacy in Dealing with Dementia Dementia India Report Recommendations to Indian Government Key Achievements till Date Learning for Other Associations

Dementia in India: The Numbers are Daunting Number of People with Dementia in India (Million) Over 3.7 million people with dementia in 2010 Number expected to double by 2030 Only ~10% of cases are diagnosed 2005 2010 2015 2020 2025 2030 2035 2040 2045 2050

Cost Burden on Indian Society is Huge Dementia Care in India – Total Societal Costs (USD Billion) Total cost per person with dementia is USD 925 per annum; per capita income is ~USD 1,500 In comparison, annual cost per person with diabetes is ~USD 550 and epilepsy is ~USD 450 Informal dementia care cost in urban India nearly 2.5 times that of rural India 1.9 (56%) 3.4 (100%) 0.5 (15%) 1.0 (29%) Direct Medical CostDirect Medical Cost Direct Societal CostDirect Societal Cost Informal Care CostInformal Care Cost Total Cost to SocietyTotal Cost to Society

Advocacy: The Need of the Hour Lack of policies and programmes to address challenges Inadequate dementia identification facilities and tools Extremely low dementia awareness levels Need for Advocacy in India Scarce funding for dementia services, research and training Insufficient dementia care facilities Limited formal training for professional carers and family

Dementia India Report: Background Initiative to meet the challenge of growing number of persons with dementia in India Meetings held across India – in Delhi, Mumbai, Coimbatore, Bangalore, Kolkata, Trivandrum – from Jan 2009 to Mar 2010 Presentations, group discussions by all stakeholders – Caregivers, Public, Doctors, Government, Policy Makers, Health Associations Collation of presentations and group discussions

Dementia India Report: Methodology Jan, 2009 – Mar, 2010 Review of dementia research and literature Review of other country reports – UK, Australia, Canada, France, USA Analysis and compilation of data by team of editors Preparation of Dementia India Report and circulation to expert consultative group for review and feedback Formal release of Dementia India Report at Dementia India Summit, New Delhi Apr – Jul, 2010 21st Sep, 2010

Dementia India Report: Contents Introduction – problem, public health issue, prevention Estimates of numbers of persons with dementia – prevalence, state wise numbers and projections for 20 yrs Impact of dementia and costs (family, quality of life, society, health services, disability) Services and treatments available The gap in India and call for action

Key Recommendations of Report Make dementia a national health priority Increase awareness about dementia Improve dementia identification and care skills Develop community support Guarantee carer support packages Develop Comprehensive Dementia care models Increase funding for dementia research Develop new national policies and legislation for persons with dementia

Recommended India Dementia Strategy 1 Health Interventions 2 Social Interventions 3 Policy Initiatives

National Programme for Dementia 1. Health Interventions Setting up of national and regional centers for research, training and treating dementia Periodical training of doctors, para medical staff on the nuances of dementia, its early detection and care giving Setting up of memory clinics at all civil and government hospitals in each district to ensure early diagnosis Awareness generation in all districts and regional levels Media propaganda for extended outreach 2. Social Interventions 3. Policy Initiatives

Rehabilitative Facilities 1. Health Interventions Pan-India assisted living facilities (at least one for each state and in all major cities), with trained personnel to care for persons living with dementia Facilities to be equipped with provisions for Preliminary memory screening (MMSE) Training of care givers Rehabilitative therapies including physiotherapy, occupational, music, reminiscence, yoga 2. Social Interventions 3. Policy Initiatives

Making Dementia a Health Priority 1. Health Interventions Active Government participation Enumeration of persons with dementia during census Establishing magnitude of the problem through epidemiological studies Easier access to health care Rehabilitative and therapeutic interventions Development of services 2. Social Interventions 3. Policy Initiatives

Key Achievements since Publication Submission of Dementia India Report to Prime Minister, Health Minister, Social Justice and Empowerment Minister Translation of report into four major regional languages Inclusion in the Committee of Social Justice Ministry to prepare next 5 year plan of Government of India Invited by the parliamentary forum on population and public health to discuss the Dementia India Report Made member of task force of Indian council of medical research

Impact of Dementia India Report – Boost in Awareness Increase in awareness among General Public Creation of increased interest from Government More interest by the media More involvement of professionals, especially medical community

Message for Other Associations Establishes prevalence and true societal cost of dementia Quantifies economic burden and funding requirements Highlights country-specific social / care-giving issues Essential to advocate with government and policy makers Increases awareness amongst public, media and medical community Country-specific dementia report crucial to dementia awareness generation and policy advocacy

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