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Marina Yannakoudakis (UK)

MEPs speak out on dementia


On 11 October 2011, Marina Yannakoudakis co-hosted the APPG / Alzheimer’s Society lunch debate along with Keith Taylor, MEP (UK).

Ms Yannakoudakis was shadow rapporteur for the European Conservatives and Reformists (ECR) group for the European Parliament Resolution on a European initiative on Alzheimer’s disease. She reminded the audience about the necessity to increase awareness about dementia, the importance of early diagnosis and the need to increase research in dementia.

On 21 October, Ms Yannakoudakis organised a European information event at Europe House in London to discuss Alzheimer’s disease with Dr. Simon Ridley, Head of Research at Alzheimer’s Research UK as guest speaker. The event focused on developing new treatments for Alzheimer’s disease and other forms of dementia.

Ms Yannakoudakis said that increasing awareness about the disease can help early diagnosis which in turn will lessen the effects of the disease while reducing healthcare costs. She added that best practices needed to be shared at EU level and research should be pooled to better use the resources. In spite of all efforts made, Ms Yannakoudakis called on the EU to dedicate more funding for dementia research.

Dr Ridley reminded the audience that dementia is not a normal part of ageing;.it is caused by brain diseases which can be beaten with enough research.

On 1 April 2014, Marina Yannakoudakis, MEP (UK) and Vice-Chairperson of the European Alzheimer’s Alliance, organised a meeting in the European Parliament to explore how the EU’s 2009 European initiative on Alzheimer’s disease has supported progress in the field of dementia across Europe


Ms Yannakoudakis welcomed the delegates and opened the meeting on a positive note, saying that dementia has been a priority of the current European Parliament. She hoped this would continue in the future, as dementia remains a pressing challenge: in the UK, one third of people over 65 have dementia, which represents 800,000 people. The UK has shown leadership on the issue with the Prime Minister’s Dementia Challenge and the organisation of the G8 Dementia Summit.

MEP Yannakoudakis also highlighted her personal commitment to the cause and mentioned that she was one of the shadow rapporteurs for the EP report on dementia and then turned over the stage to her guest speakers.

Alzheimer Europe: making dementia a public health priority

Jean Georges, Executive Director of Alzheimer Europe (AE), presented highlights of the organisation’s campaign to make dementia a European public health priority:

  • 2013: AE research findings showed that 8.7 million people have dementia in the European Union. This figure will double in Western Europe and treble in Eastern Europe by 2050.
  • 2011: AE and Harvard School of Public Health conducted a joint survey on public perceptions on Alzheimer’s disease in five countries. Results showed that AD was the most feared disease after cancer.
  • 2008: The organisation’s EuroCoDe project estimated the cost of AD at EUR 156 billion (EUR 22,000/person/year) with 56% of the costs being borne by informal carers.
  • 2007: The European Alzheimer’s Alliance was set up in the European Parliament and unites over 70 MEPs from 24 EU countries and all political group groups.

Looking beyond the implementation of the 2008 European Alzheimer’s Initiative, he suggested that the Commission appoint a dedicated EU dementia official to coordinate the various European programmes on dementia and collaborate with the WHO and G8 efforts. He also proposed the creation of a Standing Committee on Dementia which could include representatives from Member States and civil society and serve as a forum for the exchange of best practices. He closed by thanking the European Alzheimer’s Alliance members for their efforts over the past seven years. Alzheimer Europe looks forward to continuing this work in the new European Parliament.

Alzheimer’s Research UK: promoting excellence in medical research

Matthew Norton, Head of Policy and Public Affairs, Alzheimer’s Research UK (ARUK), explained the organisation’s strategy to find treatments and cures for dementia through world-class biomedical research. He also presented ARUK’s six key priorities for the G8 Dementia Summit:

  • double dementia funding every five years until 2025.
  • double the number of researchers in neurodegenerative research by 2025.
  • invest in the development of new treatments.
  • ensure easier market access for new treatments.
  • share research results on an open and global basis.
  • establish a long-term, collaborative Global Dementia Strategy.

Alzheimer’s Society: aiming for 1 million Dementia Friends

Alison Cook, Director of External Affairs at the UK Alzheimer’s Society, presented ”Dementia Friends”, the organisation’s campaign to raise awareness about dementia and enroll one million dementia friends. It began in 2013 and has already made 80,000 Dementia Friends in local communities, authorities and businesses all over the UK.

The campaign focuses on community engagement and social action and aims to change peoples’ behaviour toward dementia. Dementia Friends hopes to involve people in all sectors, including people and organisations providing services in the vicinity of people with dementia.

Individuals and businesses wishing to become Dementia Friends can visit a dedicated website that provides information about the campaign as well as various incentives.

European Commission: enabling international cooperation and research

Joanna Darmanin, Head of Cabinet (Health) at the European Commission, presented an overview of EU activities following the Communication on “European Initiative on Alzheimer's Disease and other forms of dementias” in 2009:

  • ALCOVE (ALzheimer COoperative Valuation in Europe) brought together 30 partners from 19 countries to evaluate information on epidemiological data and issue recommendations for the timely diagnosis of dementia, the treatment of behavioural and psychological symptoms, the rights of people with dementia and limiting the use of antipsychotic drugs.
  • JPND (EU Joint Programme – Neurodegenrrative Disease rRsearch) coordinates and funds the efforts of dementia research projects that involve organisations from 27 countries.
  • As part of the FP7 Research Programme, the EU allocated EUR 100 million to dementia research for the period 2011 to 2014.

Ms Darmanin also noted that the recent revision of legislation on clinical trials will undoubtedly benefit people with dementia. Finally, she mentioned two action groups of the European Innovation Partnership on Active and Healthy Ageing:

  • The “Prevention of Frailty and Functional Decline” group looks at the role of new information and communication technologies in improving screening and diagnostic tools to detect early stages of dementia.
  • The “Age Friendly Environments” group is developing solutions to allow people with dementia to live as independently as possible - including designs that aim to preserve the dignity, physical and mental health of people with dementia.

The final speaker was Dr Catherine Berens, Head of Sector (Neuroscience), DG Research and Innovation, European Commission. She gave an overview of the EU’s current funding programmes.

The Innovative Medicines Initiative (IMI) is a partnership between the European Commission and the pharmaceutical industry to speed up drug development. IMI’s latest call for proposals included EUR 53 million for the EPOC-AD project: the "European platform for proof of concept for prevention in Alzheimer’s disease" will promote more efficient clinical trial designs and execution to prevent AD. The second phase of the initiative (IMI 2) is about to begin and the first calls for proposals are expected in July 2014.

Horizon 2020is the new EU research and innovation programme that intends to address society's biggest health challenges with nearly EUR 7.5 billion in funding. The programme will support research into biomarkers, diagnostics and new medicines in a similar way to its Seventh Framework Programme (FP7) predecessor. In addition, Horizon 2020 will seek to develop ICT-based approaches for self-management of health and diseases; this includes advancing active and healthy ageing as well as integrated and sustainable citizen-centred care.

The EU also supports the Human Brain Project, launched in May 2013, with EUR 500 million. This project focuses on ICT as a means to understand the brain, develop new treatments for brain diseases and build revolutionary new computing technologies.

The presentations were followed by a lively discussion period where the following items were addressed:

In response to a question from Ms Yannakoudakis, Mr Georges further elaborated on his vision of an EU dementia official within the Commission and a Standing Committee on Dementia. He cited the French Alzheimer Plan 2008-2012 as a reference, partly for its clear guidelines and indicators but also the fact that a coordinator and several Ministers reported directly to the French President. Mr Georges believes that such a model could easily be adapted to the European Commission.

Mr Georges also referred to a recent meeting organised by the Commission where representatives from various European Health Ministries shared information about their respective activities on dementia. This meeting proved to be highly valuable for sharing information and building relationships between the countries.

Ms Tina Leonard from the Alzheimer’s Society of Ireland gave a short overview of her organisation’s activities in developing Dementia-Friendly Environments. She then asked how such activities could be integrated in European Parliament and Commission policies. More specifically, she wanted to hear how dementia will be specifically taken into account, rather than under general headings like “ageing”. Ms Berens answered that the topics were very broad; the proposals can be extremely focused and offer many opportunities to bring some projects forward.

Ms Yannakoudakis closed the meeting by thanking all the speakers and participants. She called for the next European Parliament to continue fighting dementia and join forces with all stakeholders, including patient organisations.

Marina Yannakoudakis, MEP (UK), talks with Alzheimer Europe about her reasons for becoming Vice-Chair of the European Alzheimer’s Alliance and the role of the European Union in facing the challenge of dementia


Alzheimer Europe (AE): Marina, thank you for accepting to become a Vice-Chair of the European Alzheimer’s Alliance in the European Parliament. What were the reasons why you decided to join the Alliance back in 2010?

Marina Yannakoudakis (MY): In the European Parliament’s Environment, Public Health and Food Safety committee I focus on the health portfolio. While focusing on health issues I have followed the issue of dementia, including Alzheimer’s disease, for some time. This is because in my London constituency alone, 68,000 people have developed dementia. And what is worse is that another 40,000 Londoners do not realise they have the condition. Currently fewer than 50% of cases of dementia are diagnosed in the UK. One of the issues which I would like to raise awareness of is early diagnosis of Alzheimer’s disease and we must encourage families to be alert for the signs of dementia in their relatives, especially as relatives get older.

AE: What do you hope to achieve in your role of Vice-Chair of the European Alzheimer’s Alliance?

MY: Dementia is the largest healthcare challenge which we shall face this century. We need a comprehensive, multinational approach and the European Alzheimer’s Alliance has an important role to play here. In my new role I would like to encourage the sharing of best practice on Alzheimer’s disease, especially on the four themes of prevention, diagnosis, treatment and cure. I hope that I can do the Alliance justice and live up to the expectations of the millions of people affected  by Alzheimer’s disease in the EU as I take on mynew role as Vice-Chair.

AE: What are the areas where you feel the European Union could do more to answer the dementia challenge?

MY: I think that the European Union works best when its sovereign Member States share best  practice. For example, a recent survey showed that 28% of carers for people with dementia in France felt that the healthcare system ignored the wellbeing of older people. In Spain the figure is only 16%. Why is there a difference and how can French carers access the same level of support as their counterparts in Spain? Until we have a cure we need to increase funding for scientific studies into the disease. Medication has come a long way and I hope that the revision to the Clinical Trials Directive on which I’m working in Parliament will make it easier to develop new Alzheimer’s disease treatments. Research – be it in the field of medical or technological innovation – is one of the few areas where I think EU funding should actually be increased. The European Commission’s Seventh Framework Programme has made over EUR 600 million available to study neurodegenerative diseases including Alzheimer’s disease. This should go hand-in-hand with national research such as the recent decision in the UK to invest EUR 22 million in 21 pioneering dementia research projects.

Marina Yannakoudakis attends a meeting of the Dementia Action Alliance (DAA) on 30 May 2012


Marina Yannakoudakis, MEP (UK), attended the last quarterly meeting of England's Dementia Action Alliance (DAA) held on the 30th May in London. The DAA brings together over 120 organisations from across the not for profit, private and statutory sectors to radically improve the lives of people living with dementia. The Alliance takes a voluntary and organic approach to bringing change with each member committing to specific actions such as training staff and conducting research, and then holding each other to account on fulfilling them.

Members meet quarterly to exchange good practice and listen to keynote speakers. At this meeting, members listened to Senior Civil Servant David Behan and British celebrity Angela Rippon describe Prime Minister David Cameron’s Challenge on Dementia and how members could get involved. Ms. Yannakoudakis received feedback from members and people living with dementia on the strengths of the Challenge and its possible implications for work at a European level.

 

 
 

Last Updated: mercredi 06 février 2013

 

 
 

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