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 One page document with patient rights and call to action Petition can be signed online; we aim at 10,000 signatures by Now around 4,300 – SIGN TODAY 21 September this year: World Report

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

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 Australia Asia Pacific France, UK Korea India Taiwan

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 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 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

Ideal model for dementia services

Stepped approach to dementia service development

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 21 st century!