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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,

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Presentation on theme: "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,"— Presentation transcript:

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

2 Ageing Scenario in India Dementia research in India Implications of Research Findings The Dementia Home Care Project Future Directions Objective of the Presentation

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.)

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

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.

6 10/66 Dementia Research in India

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

8 CARE GIVING IN DEMENTIA: The burden on carers

9 CARE GIVING IN DEMENTIA: The mental health of carers

10 Health care preference

11 The out of pocket cost

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

13 Good quality research Generate awareness Shape policy Encourage service development

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

15 The Dementia Home Care Project An action research project to help those affected by dementia Supported by the WHO

16 Randomized controlled Trial

17 Study Area Population (3,35,826) Tiswadi1,46,443 Bardez 1,89,383 23,500 >60 years ?? 700 with dementia Case Finding: Snowballing

18 The Home Care Project Team

19 Intervention -+Networking ++Unrestricted Medical Care -+Follow up Medical care -+Care Advisor ++Education ++Initial Medical Assessment ControlIntervention

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

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

22 Problem Solving Identify problem Get information Identify possible solutions Choose the best solution Have plan of Action Clinical Advisor’s inputs Project Counsellor’s inputs

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

24 Intervention 1. Identify Carer Burnout 2. Balance Family support 3. Understand dementia 4. Understand problem behaviours 5. Medical intervention

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

26 GHQ decreased NPIQ decreased ZB scores decreased Results 6 deaths12 deaths

27 The Impact of Research

28 Increased media attention

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 )

30 Improved relationships with policy makers Shift towards evidence based Policymaking

31 Better Community Participation Involvement of other NGOs WAD 2001 WAD 2002 WAD 2004WAD 2003

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


34 The Center for Dementia Care Need to raise $ 0.5 MILLION for the Center

35 “ We can do no great things only small things with great love”. Mother Theresa

36 Acknowledgements Monica Goncalves Dr. D.S. Goel Jean D’Souza Prof. D.D. Motghare Chicot Vas Vikram Patel Dilip Panikker KS Shaji Rajiv Menon Martin Prince Parmeshwaran

37 Thank you

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


40 Descriptive Study Prevalence of Dementia: Goa

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