EN Official Journal of the European Union C 255/76

Opinion of the European Economic and Social Committee on the ‘Communication from the Commission to the European Parliament and the Council on a European initiative on Alzheimer's disease and other dementias’

COM(2009) 380 final

(2010/C 255/14)

Rapporteur: Ms O'NEILL

On 22 July 2009 the Commission decided to consult the European Economic and Social Committee, under Article 262 of the Treaty establishing the European Community, on the

Communication from the Commission to the European Parliament and the Council on a European initiative on Alzheimer's disease and other dementias

COM(2009) 380 final.

The Section for Employment, Social Affairs and Citizenship, which was responsible for preparing the Committee's work on the subject, adopted its opinion on 10 November 2009. The rapporteur was Ms O'Neill.

At its 458th plenary session, held on 16 and 17 December 2009 (meeting of 16 December 2009), the European Economic and Social Committee adopted the following opinion unanimously.

1. Conclusions and Recommendations

1.1 Conclusion

1.1.1 The EESC welcomes the Communication from the Commission to the European Parliament and the Council on a European Initiative on Alzheimer's disease and other dementias because it is an issue of critical importance in Europe which has implications for individuals, families and society, given the ageing population.

1.1.2 The EESC recognises that the primary responsibility for tackling dementia and providing care lies with the member states but welcomes the attention drawn by the communication to the role of the EU in enhancing national progress.

Note on terminology: since the term Alzheimer's disease does not include all dementias, this document refers to ‘Alzheimer's disease and other dementias’ or simply ‘dementia’.

1.2 Recommendations (not prioritised but taken in the order of the text)

1.2.1 The EESC recommends that the Commission supports awareness campaigns to improve public knowledge of dementia in order to increase timely diagnosis and to reduce stigma.

1.2.2 The EESC recommends a greater breadth in the range of research areas for support.

1.2.3 The EESC in welcoming the Joint Programming approach in research urges the Commission to implement this timeously.

1.2.4 The EESC recommends that the open method of coordination is extended to health so that the Commission can actively encourage the development of specific national strategies and quality frameworks for dementia.

1.2.5 The EESC urges the Commission to promote widely the use of the Health Programme to develop models of care and to actively work with national governments on the use of the European Structural Funds to develop and implement training in dementia care at local level in acute, long term care and in the community.

1.2.6 The EESC strongly emphasises the importance of the application of the European Convention on Human Rights for people with dementia.

1.2.7 The EESC supports the action point in the Communication for the establishment of a European Network using the facilities provided by the Health Programme.

1.2.8 The EESC urges the dissemination and implementation of the Communication at local, national, EU and international levels in collaboration with Alzheimer organisations, national governments, the Commission and other appropriate bodies, including the EESC.

2. Background

2.1 The White Paper ‘Together for Health: A Strategic Approach for the EU 2008-13’ (1) explicitly identified and addressed the importance of developing a better understanding of neurodegenerative diseases such as Alzheimer's disease and other dementias.

2.2 The Commission has made it a priority to ensure that that there should be proper recognition of the issue given the magnitude of the problem and the impact on individuals, carers and the costs to society.

2.3 The long-term action that is proposed will focus on strategies for prevention, non-medical intervention, skills for professional and voluntary caregivers and an emphasis on a collaborative approach between Member States and the Commission in the field of research (2).

2.4 The European Commission will also link the relevant parts of future work on Alzheimer's disease to the European Pact for Mental Health and Well-being, established in 2008, acknowledging that mental health is one particular dimension in Alzheimer's disease.

2.5 The European Parliament also passed a Declaration (3) on the priorities in the fight against Alzheimer's disease and other dementias, to give political commitment to research, prevention and social protection, eliminating stigma and the importance of supporting Alzheimer associations.

3. Context

3.1 Dementia is characterised by a progressive loss of mental functions caused by a range of conditions of which the most common is Alzheimer's disease which affects around 50-60 % of people with dementia. Other conditions include vascular dementia and Lewy-Body dementia. A project carried out by the EU patient’s platform Alzheimer Europe supported by the EU Commission identified the most significant rare forms of dementia (4).

3.2 It was estimated in 2008 that in the 27 EU Member States 7,3 million people between the ages of 30 and 99 years were suffering from the different kinds of dementia. More women (4,9 million) than men (2,4 million) are affected (4).

3.3 Because of the general increase in life expectancy and the ageing of the ‘baby boomer’ generation the number of older people is projected to rise substantially, with the oldest groups experiencing the largest relative rise. An increase in the number of age related conditions, particularly dementia, is likely to continue with current forecasts predicting a doubling of the number of persons affected in the next 20 years. Alzheimer's Disease International estimates that worldwide 104 million people will have dementia by 2050.

3.4 The impact of the dementias both currently and in the future on family and professional carers, on public health and the cost of care is significant. Alzheimer Europe (2008) estimated that the total direct and informal care costs of Alzheimer's disease and other dementias in 2005 amounted to EUR 130 billion for the EU 27 member states – EUR 21 000 per person/year of which 56 % was generated through informal care (5).

3.5 At the Conference ‘The fight against Alzheimer's disease and related disorders’ during the French Presidency it was emphasised that it was vital as Europeans to share our knowledge and to mobilise the skills and experiences in the different member states in order to wage the fight against this disease and the conclusions were discussed by the Health Council in December 2008.

3.6 The primary responsibility for tackling dementia and providing care lies with the Member States. However, under Article 152 of the Treaty in relation to health there is an expectation that the EU lends it support to national action and under Article 165 requires the Community and Member States to coordinate their research and technological development to ensure that national and community policies are mutually consistent.

4. The Commission Communication

The objective of the Commission's Communication is to set out the areas and actions at EU level which bring added value in support of the Member States.

4.1 The Communication sets out five key issues for Community Action to address:

— Prevention

— Improved understanding of dementias – the coordination of research

— Sharing best practice

— Ensuring the rights of people with dementia are upheld

— Establishing a European Network.

4.2 A joint action between the EU Commission and the Member States, set out in the Work Plan for the implementation of the Second Health Programme for 2008-2013, will be launched in 2010 and will form part of the overarching goal in the Lisbon Strategy in relation to improvements in health outcomes (6).

5. Prevention

At the present time it is not possible either to prevent or to cure Alzheimer's disease and other dementias and cognitive decline was seen as an inevitable part of ageing. However, with increased knowledge about ageing and the brain possible means of prevention are being investigated.

5.1 Since dementias can, to a greater or lesser extent, be related to cardiovascular problems, prevention includes having a good diet (7), controlling blood pressure and cholesterol is important as well as not smoking, drinking only moderate amounts of alcohol (8) and taking exercise.

5.2 Other preventative strategies include social activity, involvement and support and intellectual stimulation.

5.3 Good physical and mental health through life can assist in maintaining cognitive function. This is sometimes referred to as a ‘healthy brain lifestyle’ (9).

5.4 The evidence to support these strategies is still limited and the EESC supports the Commission in calling for more targeted research to better understand the potential preventative strategies. This is supported by Alzheimer Europe.

5.5 The EESC welcomes the proposed action to incorporate a dementia dimension into the EU's ongoing and future actions on health prevention, including education, and to work with Member States to develop and provide guidance for the widest dissemination to the public and health and social care organisations.

5.6 A key challenge is to enable earlier and more reliable diagnosis. This would alleviate uncertainty for the individuals concerned and those who care for them so that they can make appropriate legal, financial, medical and other plans.

5.7 Among the barriers to early diagnosis is that people do not recognise the symptoms or consider them to be a normal part of ageing. This is also tinged with denial and fear because of the perceived stigma attached to dementia. A recent survey showed that the average delays from symptoms to diagnosis varied considerably between European countries ranging from 10 months in Germany to 32 months in the United Kingdom.

5.8 However, the EESC is concerned about the number of people throughout the EU who might not have access to diagnosis because of a lack of knowledge or the provision of services, particularly in rural areas and disadvantaged communities.

5.9 The EESC supports the call from Alzheimer Europe for the EU Commission and national governments to support awareness campaigns for the general public, a wide range of stakeholders on a local, regional, and national basis, including the media, to improve the recognition of the symptoms of dementia and to reduce stigma (10).

6. Improved understanding of dementia conditions – the coordination of research

6.1 The EESC recognises the commitment that has been made by the Commission in its support of research through the Framework Programmes in relation to brain research, causes and prevention strategies for healthy ageing and public health.

6.2 However, the EESC emphasises that research is also required in the efficacy of various models of care, psycho-social and non-pharmaceutical interventions as well as the impact of demographic changes, such as divorce/remarriage/cohabitation, migration and urbanisation on the experience of dementia and dementia care.

6.3 Although there has been substantial EU funded research on Information and Communications Technology (ICT) and dementia care, more is required, and the key findings suggest that if technology is used ethically and integrated into care plans it can assist in helping people with dementia to make choices, to remain safely at home and it can improve quality of life in all settings.

6.4 The EESC welcomes the commitment of the Commission to the specific actions on ICT research in the Framework Programmes as well as the large scale pilot projects that have been launched between the EU and 23 European countries on ICT products and services (11).

6.5 Given the increased prevalence of dementia it is essential that there is cooperation between research institutions and funding bodies in the Member States. The EESC welcomes the Joint Programming approach, on a voluntary basis, to ensure that the available funding from within Member States and the EU programmes is spent to best effect.

6.6 The EESC therefore believes that it is essential that Member States commit to this research, its funding and collaborative working.

7. Sharing best practice

7.1 Given the recognised need for further research, the importance of early diagnosis, the range of treatments and health and social care available throughout the Member States, the open method of coordination plays a crucial role in relation to considering the effectiveness of social protection, social inclusion and long term care services available.

7.2 The provision of quality services to those who have dementia and their carers is essential. For some Member States this is part of an overall strategy but to date only two have formally produced a strategy in the EU and the EESC believes that the Commission by extending the open method of coordination to health could encourage both the development of specific national strategies and quality frameworks which could provide benchmarks for other Member States and for improvement in relation to policy, services, training and research.

7.3 The EESC welcomes the commitment to the provision of special training for health and care staff, and family members of those with dementia, with its holistic approach to care. The EESC believes in the use of the EU Health Programme to develop models of care complemented by Member States making use of the European Structural Funds to enable their implementation. This is particularly important in the light of a shortage of trained people in health and social care (12). The provision of training to improve understanding of Alzheimer's disease and dementia and ethical practice for staff in acute, long term care and in the community is essential.

7.4 The EESC supports the sharing of good practice in the identified areas of prevention and services which improve the quality of life for those with Alzheimer's disease and other dementias.

7.5 The EESC strongly supports the empowerment of national, European and international Alzheimer's associations and other relevant patients’ organisations. These organisations provide a range of services to those with dementia and their carers and play an important part in preventing social exclusion and discrimination and promoting the rights of individuals with dementia.

7.6 These organisations provide valuable information (13) which can influence and inform research, policy and practice and enable the voice of those with dementia and their carers to be heard. The EESC would wish to lend its support and influence through its involvement in liaison work with a range of organisations across the Member States and internationally.

7.7 The EESC supports the call from Alzheimer Europe to national governments to recognise the important contribution made by Alzheimer associations and to fund them in order to support the projected increase in the number of people who will be affected by Alzheimer's disease and other dementias in the context of pan-European solidarity.

8. Ensuring the rights of people with dementia are upheld

8.1 ‘First and foremost, people with dementia are friends, relatives, neighbours and fellow members of society. The fact that they have a specific medical condition is secondary’ (14). The EESC upholds the right of individuals with Alzheimer's disease and other dementias to be treated with dignity and allowed the right to self determination.

8.2 The impact on individuals and carers both of the diagnosis and the progressive loss of capacity can be socially isolating and negative with resulting affects on their health and well-being. The EESC calls upon the Commission and National governments to inform and educate society to eliminate the stigma that is attached to dementia.

8.3 The EESC urges that the rights of those with dementia be upheld in the context of the European Convention or Human Rights which has been further strengthened by disability rights and patients’ rights (15). Information must be provided both on the condition and the services available and those individuals and their carers must be involved in the decisions made about them.

8.4 The EESC supports the Commission influencing the political leadership in the EU in recognising the rights of incapacitated older people to enable their rights to be upheld and to be free from neglect and abuse (16).

9. Establish a European Network

9.1 The EESC considers the establishment of a European Network, through the Health Programme to be critically important. It would enable the sharing of good practice, contribute to the development of consistent standards and approaches (17) in relation to vulnerable older people across the member states and create the opportunity to develop common principles and definitions on the rights of people with Dementia.

9.2 In addition a European Network could contribute to:

— improved education for a wider group for health and social care staff in relation on dementia and how those affected and their carers can be supported;

— improved education about dementia to reduce stigma and encourage early diagnosis;

— improved coordination between professionals who work with people with dementia and their carers so that individual needs can be met (18)

across the Member States.

9.3 The Network could include work with the national governments on the development of advance statements for an individual, whilst they still have the capacity to consent, taking into account medical treatment, care, support, financial and legal matters and the potential to designate in advance a trustworthy person to speak on their behalf.

9.4 The EESC would urge close collaboration between the Network and Alzheimer Europe in order to ensure the provision of good and consistent information about dementia which is vitally important to reduce stigma, to encourage people to seek medical advice and to develop knowledge of the services and support that are available to them, as well as promoting the rights of individuals to enable their dignity and self determination to be sustained.

Brussels, 16 December 2009. The President of the European Economic and Social Committee Mario SEPI

(1) OJ C 77 of 31.3.2009, p. 96.

(2) Dementia Year Book 2008 Alzheimer Europe.

(3) EP Declaration PE414.434.

(4) COM(2009) 380 final.

(5) Alzheimer Europe(2008) Dementia in Europe Yearbook.

(6) Decision No 1350/2007/EC of the European Parliament and of the Council of 23 October 2007, establishing a second programme of Community action in the field of health (2008-13). See http://ec.europa.eu/health/ph_information/indicators/lifeyears_en.htm.

(7) OJ C 24 of 31.1.2006, p. 63.

(8) OJ C 318 of 23.12.2009, p. 10.

(9) Dementia Risk Reduction: The evidence. Alzheimer's Australia Paper 13 September 2007.

(10) Alzheimer Europe Paris Declaration on the political priorities of the Alzheimer movement (2006).

(11) Decision No 742/2008/EC of the European Parliament and of the Council of 9 July 2008, COM(2007) 332 final, OJ L 201 of 30.7.2008, p. 49.

(12) OJ C 317 of 23.12.2009, p. 105.

(13) The European Collaboration on Dementia (EuroCoDe) exists to produce consensual indicators and to undertake joint surveys.

(14) Alzheimer Europe Year Book 2008.

(15) OJ C 10 of 15.1.2008, p.67.

(16) OJ C 44 of 16.2.2008, p.109.

(17) OJ C 204 of 9.8.2008, p.103.

(18) Baseline assessment of current information provision to people with dementia and their carers; Alison Bowes NHS Quality Improvement Scotland and the Dementia Services Development Centre at Stirling, Scotland.