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THE ROLE OF ALZHEIMER ASSOCIATIONS IN CAMPAIGNING FOR CHANGE Marc Wortmann

THE ROLE OF ALZHEIMER ASSOCIATIONS IN CAMPAIGNING FOR CHANGE Marc Wortmann Alzheimer’s Disease International. Overview. What is ADI Global impact of dementia ADI advocacy campaign The work of Alzheimer associations Policy initiatives Look into the future ADI World Report.

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THE ROLE OF ALZHEIMER ASSOCIATIONS IN CAMPAIGNING FOR CHANGE Marc Wortmann

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  1. THE ROLE OF ALZHEIMER ASSOCIATIONS IN CAMPAIGNING FOR CHANGE Marc Wortmann Alzheimer’s Disease International

  2. Overview • What is ADI • Global impact of dementia • ADI advocacy campaign • The work of Alzheimer associations • Policy initiatives • Look into the future • ADI World Report

  3. What is Alzheimer's Disease International (ADI)? • The international federation of 71 Alzheimer associations around the world; • Members are national associations; • Network to share information, resources and skills; • ADI was founded in 1984 and is in official relations with the World Health Organization (WHO) since 1996 • Achieves its goals by member support, coordinating World Alzheimer’s Day, annual conference, research, advocacy

  4. Global Impact • Prevalence: currently over 30 million (Ferri 2005, ADI 2008) • Global cost $ 315 billion (Wimo et al, 2007) • Social: impact on family lives • Public health impact: many do not receive diagnosis to ensure better quality of life • Equity: many people don’t have access to primary health care, especially in developing countries • Very little public funds spent on dementia research, compared to other diseases with same impact

  5. ADI Advocacy Campaign • ADI Strategic Plan: Influencing Policy Makers • Advocacy is most effective when done by patient & family organisations • Campaign towards World Health Organization (WHO) started 2008 • ADI visited five out of six WHO regional committee meetings, including Europe and Middle East and North Africa and did a statement at every meeting • 2009: Last week World Health Assembly event

  6. Advocacy campaign (2) • 21 September 2008: launch of the Global Alzheimer’s Disease Charter and special website www.globalcharter.org • One page document with patient rights and call to action • Petition can be signed online; we aim at 10,000 signatures by 21-9-2009 Now around 4,300 – SIGN TODAY • 21 September this year: World Report

  7. The Work of Alzheimer associations Depends on stage: Emerging associations Developed associations

  8. Emerging Associations • Raise awareness about Alzheimer’s disease and other dementias • Provide information • Support people with the disease and their families • Build their own capacity: • Recruit volunteers • Fundraising • Governance

  9. Developed Associations • Raise awareness about Alzheimer’s disease and other dementias • Provide information • Support people with the disease and their families • Develop other services • Stimulate research • Influence policy makers & campaign for change in more and more countries • The role of a strong association is vital

  10. Policy examples • Australia • Asia Pacific • France, UK • Korea • India • Taiwan

  11. Policy examples • Alzheimer’s Australia campaigned successfully to make dementia a national health priority • This happened in 2004 • $ 230 mln extra for dementia care and research • New commitment for the future

  12. Policy examples - 2 • 2006 ADI Asia-Pacific report ‘The Epidemic is Here’ • Country date from the whole region • In most countries dementia still seen as a normal part of ageing • First opportunity for many associations to meet Health Minister

  13. Policy examples - 3 • France: initiative from president Sarkozy for a French plan with € 1.6 bln for 2008-2012 • 44 measures in all areas, for instance Memory Clinics, case managers, training for carers and health professionals, new technology and more research funding • UK National Dementia Strategy 2009 • Main aims are: • Improving awareness • Early and better diagnosis • Improved quality of care • Delivering the strategy

  14. Policy examples - 4 • South Korea: Long term care insurance and WAR on dementia; increase quality of life; stimulate early diagnosis; improve services; support caregivers • India: regional meetings organised by ARDSI • Taiwan: use Asia-Pacific conference in 2008 for agenda-setting; TADA president now chairing the committee

  15. Look into the future • A national action plan in every country? • Support from ADI and Alzheimer Europe • World Alzheimer Report to be launched at 21 September 2009 as a tool for associations

  16. World Alzheimer Report • Overview where we are • Relevant data: prevalence, mortality, burden of disease • Good examples from pioneer countries • Long term impact of dementia on patients and their families • Ideal model and stepped approach • Needs to be relevant for low, medium and high income countries

  17. Ideal model for dementia services

  18. Stepped approach to dementia service development

  19. Link with WHO • Dementia movement is seeking the help of World Health Organization • New Mental Health GAP programme will be implemented from 2010 on • Dementia one of the priorities • Link with cancer 30 years ago and HIV/AIDS 15 years ago • Dementia will be the main health challenge of 21st century!

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