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

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 - 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

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 21st century!

ADI conference10-13 March 2010