Transcript Document

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 conference
10-13 March 2010