THE ROLE OF ALZHEIMER ASSOCIATIONS IN CAMPAIGNING FOR CHANGE Marc Wortmann
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Transcript of 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
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
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
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
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
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
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
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
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
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
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
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
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
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!