Dementia Care and Research in Asian Region – A Quality of Life Perspective

1. Dementia Care and Research in Asian Region – A Quality of Life Perspective Professor Edmond Chiu A.M. Academic Unit for Psychiatry of Old Age University of Melbourne

2. Population Ageing • By 2020, one person eight in the world will be over 60 years of age. • By 2050, the number of elders will exceed the number of younger persons.

3. Population Ageing in Asia • East and N.E. Asia 1.5 billion@14% 210 mill. • S.E. Asia .57 billion@8% 45.6 mill. • S.& S.W. Asia 1.7 billion@8% 136 mill. • N.& Central Asia .218 billion @14% 30.5 mill. • ESCAP region 4.1 billion 420 mill. ESCAP – U.N. Economicand Social Commission for Asia and the Pacific

4. Population Ageing in Asia – bycountry China 156 millions Japan 36 millions Korea 7 millions Indonesia 21 millions India 94 millions Bangladash 9 millions Pakistan 10 millions China + India 250 millions

5. Dementia numbers follow population ageing. • By 2025, around 20 millions people in Asia will have dementia.

6. Major Barriers to response • Policy vacuum in health and welfare. • Inadequate human and financial resources. • Inadequate training for formal and informal carers. • Lack of support for informal carers. • Family unit restructure – urbanisation related social changes.

7. Development of Professional Response • Programme of Consensus meetings of Asian leaders in dementia care. • 3 years, 2004 - 2006. • Supported by Eisai Human Health Care Co. • Develop guidelines in Quality of Life care for Asian people with dementia – the QoLDEM Consensus

8. Participants From :- • Hong Kong SAR • China. • Korea. • Indonesia. • Malaysia. • Philippines. • Singapore. • Thailand. • Australia.

9. Defining QOL for PWD Lawton – 4 domains. Behavioural competence The Environment Psychological well being Perceived Quality of Life

10. The WHOQoL Multidimensional concept Six domains – Physical Psychological Independence Social Relationships Environment Spirituality

11. The Pathway of dementia • Pre-dementia • Mild Cognitive Impairment (MCI/CIND) • Early dementia • Moderate dementia • Severe dementia • End of life

12. What contribute to QOL? Pre-dementia – Relieve poverty Improve education Financial security Quality basic health services Health maintenance and promotion Transport Ready access to services which are affordable

13. What contributes to QOL? MCI/CIND – Early detection plus assertive follow-up Enhance intellectual and physical activities Public education – awareness with positive messages

14. What contributes to QOL? Early dementia –Early intervention Accurate diagnosis and information Access to affordable treatments Manage co-morbidity Home based support

15. What contributes to QOL? Moderate dementia – QOL pleasurable activities Effective management of symptoms Safety Social supports Reduce carer stress Maintain physical health Public education

16. What contributes to QOL? Severe dementia – Manage co-morbidity Mobility and falls Prevention of abuse Appropriate and nutritious food Privacy, dignity, autonomy “Comfort and peace”

17. End of Life Issues • Living wills – culture - appropriateness? • Inheritance distribution and Wills • Palliative care • “Comfort and peace” – spiritual, religious and cultural rituals

18. Service Systems • Appropriate for each stage of pathway. • Early diagnosis – memory clinics, non-threatening, non-stigmatising, affordable and accessible location • Incorporate general health services • Co-ordinated available medical and support services • Holistic care • Continuing policy development, implementation, adequate funds. Partnerships.

19. Strategies in Quality Care • Harm minimization – eliminate negatives. • Enabling– ability to do and function. • Positive feelings – being valued, feeling satisfied, contentment, spiritually fulfilled.

20. Minimal Service Provision ServicesCare Locale Level Activities Health Community Primary Early detection and screening Hospital Secondary Diagnosis and treatment Education, pats and family Tertiary Memory clinics Training primary care and secondary care, NGO Public awareness

21. Minimal Service provision Services Care Locales Activities Social services Community Financial aid Shelter for those in need Provision of equipment NGOs Community Day activities Education for carers Counselling carers Public awareness

22. Human Resources Training for- Family carers Neighbourhood and significant others Family substitutes (“maids”) Primary care professionals Specialists Policy makers The Public and media – de-stigmatisation

23. Consumer participation • PWD • Family Participate in:- Care plan development. Education. Policy development and implementation. Evaluation.

24. Conclusions Real Life Outcomes

25. Real Life Outcomes for PWD • Symptom reduction. • Improve/maintain function. • Continue activities and life enjoyment. • Family and social connectedness. • Less dependency. • Communication.

26. Real Life outcomes for Carers • Support in all domains. • Education, knowledge, understanding. • Adaptation – psychological, environment. • Health maintenance. • Grief counselling.

27. Real Life Outcome for system • A comprehensive, holistic, innovative, culturally appropriate, affordable, accessible system of care in all Asian countries. • Effective contribution by consumers to policy development, planning and implementation. • Regular evaluation, review, revision.

28. This QoLDEM consensus is likely to be very similar to that throughout the world with minor local variations. It affirms the universality of PWD in Asian countries and of their needs. It calls upon all advocates for PWD in Asian countries to work towards achieving these Outcomes.

29. Publication:- International Psychogeriatrics (2005), 17.1 International Psychogeriatrics (2006), 18:176-185.