Making dementia a European priority

Marseille – 17 October 2008

Jean Georges, Executive Director

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Overview

• Alzheimer Europe

• Paris Declaration of the political priorities of the European Alzheimer movement

• Campaign to make dementia a European priority

• Campaign outcomes

• Lessons learned

Alzheimer Europe

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AE Mission Statement

• Changing perceptions, policy and practice in order to improve the access by people with dementia and their carers to treatment options and care services

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Strategic Objectives• representing the interests of people with dementia and their

carers,

• involving and supporting national Alzheimer associations,

• improving the information exchange between Alzheimer Europe, its members and European structures,

• promoting best practice through the development of comparative surveys,

• developing policy statements and

• developing strategic partnerships

Paris Declaration

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Paris Declaration• Adopted by Annual General

Meeting in Paris (May 2006)

• Political priorities in the field of:

– Public health

– Medical and scientific priorities

– Care and social issues

– Ethical and legal questions

– Alzheimer associations

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Key challenges• 6.1 million people with dementia in European Union

• Socio-economic impact of the disease

• Late diagnosis

• Impact on carers

• Lack of services

• Differences across Europe with regard to access to treatment and services

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Delays in diagnosisMonths between first symptoms and diagnosis

32

24

23

18

14

10

0 5 10 15 20 25 30 35

UK

France

Poland

Spain

Italy

Germany

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Carer burden

41%

32%

20%

39%

50%

25%

32%

23%20%

<4 hours/ day 4-<10 hours/ day >10 hours/ day

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From problems to solutions• Dementia as a public health priority

• Increased research funding

• Awareness campaigns

• Dementia in medical training

• Exchange of best practices (care models, guardianship systems)

• Support to Alzheimer associations

AE Campaign

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Making dementia a European priority

• Paris Declaration adopted in 2006

• Creation of European Alzheimer’s Alliance chaired by Françoise Grossetête (France) (grown from 30 members to 53)

• Total of 82 MEPs pledged their support

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Making dementia a European priority (II)

• Week long exhibition in the European Parliament (17-21 September 2007)

• Lunch debates in European Parliament

Campaign outcomes

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Increased public support

• 72 Members of the European Parliament (all parties and 20 European countries)

• Written Declaration in the European Parliament

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National Initiatives

• French Alzheimer’s Plan (€1.6 billion)

• German Research Initiative

• UK Dementia Strategy

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European initiatives

• French Presidency Conference on Alzheimer’s disease (30-31 October 2008)

• Council of Ministers decision to improve European collaboration on dementia research

• European Action Plan on Alzheimer’s disease (???)

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Lessons learned

• Collaboration with national associations is key

• Development of relationships over time

• Scientific support for statements

• Strategic alliance with other stakeholders

• Transparency on funding

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For more informationwww.alzheimer-europe.orgwww.dementia-in-europe.eu