Slide 1

FROM RESEARCH TO HEALTH POLICY Lessons learnt from India Dr. Amit Dias, MD,DTM&H Jt. Secretary, ARDSI Hon. Secretary, The Dementia Society of Goa Lecturer, Dept. of Preventive and Social Medicine, Goa Medical College Slide 2 Ageing Scenario in India Dementia research in India Implications of Research Findings The Dementia Home Care Project Future Directions Objective of the Presentation Slide 3 India: Total elders: 70million People with Dementia: *: >2.5 million (* Rajkumar et al, Shaji et al,) Goa: Elders: 0ne Lakh People with dementia: > 3000 ** ( ** Dias A, Vas C.2002 Prevalence of Neurological disorders in a community in Goa.) Slide 4 Care of the elders in India Family care : breaking up No financial independence Old aged homes: deny admission to people who have memory problems. No Full Fledged Dementia Home in the country ARDSI HAS RECENTLY STARTED A RESPITE CENTRE Slide 5 Prevalence of Dementia in Old Aged Homes Do not admit people with dementia 9% of the residents in the aged homes have some form of Dementia* * Dias A, Survey of People with dementia in Aged Homes in Goa, Dementia Society of Goa. Slide 6 10/66 Dementia Research in India Slide 7 Ageing & Mental Health in Goa: - Qualitative studies Findings Dementia and depression widely recognized, but not viewed as an illness normal part of ageing no Konkani terms to describe the disorders thus, very rarely brought to health services frequent instances of elder abuse and neglect Patel & Prince, Psychol Med, 2001, 31, 29-38 Slide 8 CARE GIVING IN DEMENTIA: The burden on carers Slide 9 CARE GIVING IN DEMENTIA: The mental health of carers Slide 10 Health care preference Slide 11 The out of pocket cost Slide 12 Carers of persons with dementia were significantly more likely to: require outside help cut back or take time off work spend more time in face to face caring activities spend more money on private health care have much higher burden scores have much poorer mental health scores (Dias, Samuel, Patel, Prince et al, IJGP) Impact on the Carers Slide 13 Good quality research Generate awareness Shape policy Encourage service development Slide 14 Formation of the Dementia Society of Goa ( ARDSI - Goa ) June 2002 Focus Areas The Home Care Project Raising awareness and Advocacy The Dementia Home Capacity building Service development should go hand in hand with raising Awareness Slide 15 The Dementia Home Care Project An action research project to help those affected by dementia Supported by the WHO Slide 16 Randomized controlled Trial Slide 17 Study Area Population (3,35,826) Tiswadi1,46,443 Bardez 1,89,383 23,500 >60 years ?? 700 with dementia Case Finding: Snowballing Slide 18 The Home Care Project Team Slide 19 Intervention -+Networking ++Unrestricted Medical Care -+Follow up Medical care -+Care Advisor ++Education ++Initial Medical Assessment ControlIntervention Slide 20 Assessment Two Assessments ( By Research Assistants ) First Assessment ( 3 months ) Second Assessment (6 months ) Process Assessment (e.g. number of visits by HCA; medication use) Carer Assessment: ZBS/ GHQ Subject Assessment: NPIQ/EASI Economic outcomes: Cost Analysis Slide 21 INTERVENTION Medical intervention Diagnosis Medical Advise Discuss with family physician Home Care Advisor Intervention Non Pharmacological intervention provided as per individualised protocol HIGH RISK APPROACH Slide 22 Problem Solving Identify problem Get information Identify possible solutions Choose the best solution Have plan of Action Clinical Advisors inputs Project Counsellors inputs Slide 23 Training the Home Care Advisors Understanding dementia Management of Problem behaviours Assisting ADL Listening and communicating skills Other relevant training: Bereavement counselling, First Aid, diseases in the elderly, Managing Support Group meetings, dietary advise, stress management etc. Objective tests Slide 24 Intervention 1. Identify Carer Burnout 2. Balance Family support 3. Understand dementia 4. Understand problem behaviours 5. Medical intervention Slide 25 Intervention ( cont. ) 6. Making the home dementia safe 7. Nutrition advise 8. Understanding associated conditions 9. Structure the day 10. Build up the dementia support system Slide 26 GHQ decreased NPIQ decreased ZB scores decreased Results 6 deaths12 deaths Slide 27 The Impact of Research Slide 28 Increased media attention Slide 29 ACh esterase inhibitors (India ) Rivastigmine Donepezil Drugs are cheaper: Rivastigmine 6mg twice Daily for 1 month = US $13 Donepezil 10 mg Once Daily for 1 month = US $ 7 Trade-Related Intellectual Property Rights (TRIPS), may change the scene ( Process and Product Patent ) Slide 30 Improved relationships with policy makers Shift towards evidence based Policymaking Slide 31 Better Community Participation Involvement of other NGOs WAD 2001 WAD 2002 WAD 2004WAD 2003 Slide 32 Demand for dementia services Letters to the DSG Increased phone calls Thank you for being there when I needed you the most - Carer, in a letter to the DSG The Home Care Project has helped me understand myself - Carer, In a letter to the DSG Slide 33 YOUNG DOCTORS FOR DEMENTIA WE CAN MAKE A DIFFERENCE WORLD ALZHEIMERS DAY 2005 Slide 34 The Center for Dementia Care Need to raise $ 0.5 MILLION for the Center Slide 35 We can do no great things only small things with great love. Mother Theresa Slide 36 Acknowledgements Monica Goncalves Dr. D.S. Goel Jean DSouza Prof. D.D. Motghare Chicot Vas Vikram Patel Dilip Panikker KS Shaji Rajiv Menon Martin Prince Parmeshwaran Slide 37 Thank you Slide 38 Lack of Empowerment Lack of an Organized Advocacy Programme Lack of Awareness Lack of Professional help Poverty Stigma Lack of Local research Lack of Political Commitment Lack of Age Sensitive Services Other Health Priorities Lack of Funds BARRIERS TO DEVELOPING DEMENTIA SERVICES IN INDIA ARDSI fighting all odds for 12 years Slide 39 Slide 40 Descriptive Study Prevalence of Dementia: Goa