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Effective Community-Based Solution for Dementia Care in India

This presentation discusses the impact of a successful home care project for dementia in India, addressing the treatment gap, increasing awareness, and providing support for both patients and caregivers.

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Effective Community-Based Solution for Dementia Care in India

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  1. Emerging Approaches in Psychosocial Research A Successful Community Based Solution from India Amit Dias, MD, DTM&H, DGM Epidemiologist and Geriatrician Secretary, the Dementia Society of Goa Coordinator, MSAP, ARDSI Coordinator, 10/66 Dementia Research Group-India Asst. Prof. Dept of Preventive Medicine, GMC Project Director, Dementia Services, Sangath

  2. Parts of the presentation • Dementia scenario in India • The Home Care Project • Evaluating the impact of the project • Impact of the evidence

  3. About Goa

  4. New estimates for India millions 12.5 6.4 3.7

  5. Biggest Challenge: bridging the treatment gap for dementia Treatment gap • In Goa: > 90% • 51% had seen a doctor but only 5% got the diagnosis & dementia specific medication Dias, Patel. Bridging the treatment gap for dementia, IJP 2009

  6. Needs assessment: Dementia Care in India • Families play an important role • Family care : weakening • Migration of children/ working women • Majority of the elders are looked after in the community in their homes Need to assist the family members

  7. Knowledge & Attitudes of the community towards people with dementia • Dementia and depression widely recognized, but not viewed as an illness • Considered to be “normal part of ageing” • Rarely brought to health services • frequent instances of elder abuse and neglect Patel & Prince, Psychol Med, 2001, 31, 29-38 Need to increase awareness in the community

  8. Assessment: Impact of caring 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)

  9. Health care preference

  10. The needs • Need to support person with dementia • Need to support the caregiver • Should be home based • Should not be too expensive

  11. How to bridge the gap in services? Understand your strengths Be innovative Lead the way!!

  12. Our response to the need The Dementia Home Care Project Supported by the WHO & The Ministry of Social Justice and Empowerment

  13. Objectives of the intervention To adapt and apply a flexible, stepped-care intervention designed to…. • Improve awareness and knowledge of caregivers • To maximise caregiving resources and to improve caregiving skills. • To help reduce behaviour problems in persons with dementia

  14. The Home Care Project Team Non specialist workers: Home Care Advisors

  15. Scarcity ofHuman Resources for Mental health services(N=157 to 183 countries)

  16. The WHO Mental Health Global Action Plan • Seven priority areas – Dementia, depression, psychosis, epilepsy, child and adolescent disorders, alcohol use, suicide • Development of evidence-based practice guidelines for non-specialists in LAMIC

  17. Intervention Control Initial Medical Assessment + + Education + + Unrestricted care + + Follow up + - Care Advisor + - Networking + - Intervention

  18. Intervention Medical component Non pharmacological component Home Care Advisor Non Pharmacological intervention provided as per individualised protocol HIGH RISK APPROACH

  19. 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

  20. Monitoring and supervision Identify problem Get information Identify possible solutions Choose the best solution Have plan for intervention Clinical Advisor’s inputs Project Counsellor’s inputs

  21. The Intervention: 10 steps • 1. Identify Carer Burnout • 2. Balance Family support • 3. Help them Understand dementia • 4. Understand problem behaviors • 5. Medical management- treatment • 6. Making the home dementia safe • 7. Nutrition advise • 8. Understanding associated conditions • 9. Structure the day • 10. Build up the dementia support system

  22. Identify stress in the caregiver Help them make time for themselves Congratulate them The First Step:

  23. The Second Step:Balance Family Support

  24. The Third Step:Help the family understand the condition • Get a proper diagnosis • Accept the diagnosis • Dementia is not normal aging • Life does not end when dementia starts • Learn where andwhen to seek help

  25. Eating Dressing Toileting Sleep disturbances Bathing Communicating Hallucination Repetitive behaviour Wandering Suspicion &accusation Screaming episodes Depression The Fourth Step:Assist ADL & manage problem behaviours

  26. Problem behaviours associated with dementia

  27. Eating Problems • Establish routine • Encourage self feeding • Serve familiar food • Serve one food item at a time • Encourage fluid intake • Do not neglect food • Have a Dental check up

  28. Sleep hygiene

  29. Wandering • Look for pattern/ reason • Go for regular walks • Secure the house • Lock gate - ensure compound is safe • Identification/ safety bracelet • Inform neighbours

  30. Toileting • Establish routine • Make sure person can find the toilet • Use velcro / elastic waist band for clothes • If cannot recognize need- frequent visits to the toilet. • Consider incontinence products

  31. The Fifth Step:Medical management • Ensure that the treatment is taken on time • Monitor for any side effects • Report the progress to the doctor One can get dementia specific medication for around $10 – 12 / month

  32. The Sixth Step:Making the home dementia safe. • Uncluttered environment • Keep sharp electrical and poisonous items out of reach • Appropriate temperature • Handrails / secure steps, windows. • Remove rugs • Avoid nylon clothing • Non slip floor

  33. The Seventh Step:Understand the diet • Ensure adequate fluid intake • Ensure balanced diet • Knowledge of locally available nutritious food items

  34. The Eighth Step:Understanding other Associated Conditions • Diabetes • Hypertension • High Cholesterol • Coronary heart disease • Stroke • Bed sores • Arthritis • Osteoporosis • Infection

  35. The Ninth Step:Structuring the day • Morning routine • Afternoon routine • Evening Routine • Night Routine

  36. The Tenth Step:Understand the dementia Support system • Dementia Help Line • Contact the local ARDSI Chapter • Memory clinics • Support group • Avail of services : • Day care • Respite care • Residential care

  37. Results GHQ decreased NPIQ decreased ZB scores decreased 6 deaths 12 deaths

  38. Results Differences in outcome between intervention and control groups • GHQ** -1.1 (-2.1 to -0.2) • Zarit*-3.3 (-6.8 to +0.2) • EASI -0.4 (-1.0 to +0.3) • NPI severity -1.2 (-2.8 to +0.5) • NPI distress** -2.0 (-3.5 to -0.4)

  39. The Dementia India report suggests that the home care programme is a cost effective way of reaching out to the 3.7 million people with dementia in India

  40. Good quality researchGenerate awarenessShape policyEncourage service development 10/66 dementia Research group

  41. Reason to rejoice!! Rotary Club of Crosby supports the Sangath Dementia project Project won the FMA-ADI award 2010

  42. Media attention

  43. Government of Goa puts dementia on the Public Health Agenda Chief Minister of Goa supports Dementia services in the State: Goa Budget 2011-12

  44. Acknowledgements • Participants in the trial • Prof VikramPatel • Prof Martin Prince • Management of the the Dementia Society of Goa • Goa Medical College • Dr. Jacob Roy, ARDSI • Sangath & the Rotary Club of Crosby, UK • FondationMédéric Alzheimer • Alzheimer’s Disease International

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