22 June 2010: Debating dementia in the European Parliament
The latest lunch debate, which Alzheimer Europe organised in the European Parliament, was dedicated to the discussion of the French and English national approaches to dementia.
On 22 June 2010, Dagmar Roth-Behrendt (MEP, Germany) and Vice-chair of the European Alzheimer’s Alliance, hosted Alzheimer Europe’s 8 th lunch debate held in the European Parliament which was entitled “Alzheimer’s disease and dementia as a national priority: contrasting approaches by France and the UK”. Dagmar Roth-Behrendt welcomed all 36 participants (including 7 MEPs or their repr
esentatives) to the debate.
Ms Roth-Behrendt explained that dementia became a personal issue to her, as her mother lived with the disease until recently. She believes that despite Alzheimer’s disease presenting the EU with an enormous challenge and everyone saying that age-related diseases should be a priority, the reality is that Alzheimer’s disease is not given the same high priority as other diseases within EU health programmes. She also reflected on the need for greater awareness within the EU about the disease and on the lack of information at the time of diagnosis. In her case, she was grateful she could resort to Alzheimer Europe to find information and help. Ms Roth-Behrendt acknowledged the role Alzheimer Europe plays, saying “I have to thank Alzheimer Europe for the huge amount of work you do, it is very appreciated. Without you a lot of us would be lost.”
Ms Roth-Behrendt highlighted the issue of diagnosis and asked how a faster and better diagnosis could be achieved and, if that can be obtained, how can we ensure that the best treatments and practices are known throughout the EU. She also asked how we can help families get information about the disease and support. She then invited the speakers to first introduce their respective national plans.
The French and English National Plans
Presenting the French Plan Ms Lustman said that the first step France had taken was to establish that Alzheimer’s disease was indeed a public policy issue. Ms Lustman emphasised that the French plan was a globalone and that this, 3 rd French plan, focused more than ever on the person with dementia and their carer. The first objective of the 3 rd plan, she said, is that of knowing the disease and finding a medical treatment or cure. Therefore, research has been given a high priority within this plan. This differs to the previous Alzheimer plans and Ms Lustman was proud that in the last two years progress has been made. The second objective of the French plan is to take care (from both a medical and social point of view) of people with dementia and their carers by looking after them and improving their quality of life. The third objective is that of respect and Ms Lustman said that it was vital to guarantee the dignity of the person with Alzheimer’s and that an ethical approach was employed.
Mr Ketteringham then took the floor and reflected on the fact that the English strategy was adementia strategy, not only an Alzheimer’s disease strategy, and how the term dementia and Alzheimer’s disease had connotations associated with them and that language usage played a part in the stigma associated with them. Removal of such stigma, he said, was a key element of the English strategy.
He explained that the English strategy came into being as a result of two events: an Alzheimer Society report on dementia which highlighted the impact dementia had on the nation and the public dissatisfaction with the inaccessibility of dementia drugs. These two elements put the disease onto the political agenda.
Commenting on the strategy itself, Mr Ketteringham said that the English strategy has three key elements: raising awareness, providing information and giving support, all of which aim to put people with dementia in control of their own lives, with the message that one can live well with dementia. The Society put in place a powerful campaign of which the message was ‘I have dementia but I also have a life’ and the English strategy entitled “Living well with dementia” was born.
Ms Roth-Behrendt then asked for clarification regarding investment in dementia research and whether collaboration between Member States could be achieved.
Florence Lustman said that the 3rd plan identified a number of weaknesses in dementia research. A particular problem highlighted was that there were too few high quality researchers and, specifically, not enough young researchers working on dementia. In addition, a lack of collaboration and structure on a global level was identified as a weakness. As none of these issues could be overco
me quickly, the Alzheimer Plan included the setting up of the Alzheimer Plan Foundation and EUR 200 million was committed to dementia research over a five year period. Ms Lustman was proud to acknowledge that, after just two years’ work, the Foundation had been recognised at highest national level in a report on the identification by the Foundation of two new genes as being one of the 10 major scientific discoveries throughout all disciplines (2009 “Nature Genetics”).
In addition, France put a lot of energy into encouraging the European Parliament and the European Commission to take action, and into the development of the joint programming of research initiative, which now has participation of 24 Member States.
With regard to the English strategy, Andrew Ketteringham said that following pressure from the Society the government accepted that research should be included. However, he said that dementia research remains a ‘poor relation’ to other research areas, such as cancer. Acknowledging the problems faced within the current economic climate, Mr Ketteringham posed the question whether we can really afford not to invest in research, especially in light of the fact that it is often said that if you can delay the onset of Alzheimer’s disease by five years, the number of people with dementia can be reduced by 50%.
Despite the current financial situation, Mr Ketteringham believes the financial argument to be strong, the political will evident and, a desire for action from the public will ensure that awareness will be maintained. In addition events such as the International Conference on Alzheimer’s Disease (ICAD) which will command considerable media attention.
Some Member States, said Ms Roth-Behrendt, believe that health is a national issue and not one that the EU should have competence to deal with. This being so, what can the EU do to help? Ms Roth-Behrendt said that action can be taken which doesn’t cost anything, such as just being open and talking about dementia. However, if the EU were to assist, Ms Roth-Behrendt thinks that national competence needs to be given up and she questioned whether the Member States were really ready take this action.
Nessa Childers (MEP, Ireland) explained to the participants that she had initially wanted to help in this area for personal reasons (her mother had died May 9 th this year). She felt that MEPs can help, even if it’s by just speaking about dementia. Ms Childers said that it simply is not acceptable for health care professionals to say they don’t know what people with dementia and/or carers should do and that national associations can be of great help. She highlighted the fact that in Ireland there is no Strategy and that there is a serious situation.
Magda Aelvoet, Minister of State, Belgium, confirmed that policy makers in Belgium would be keeping dementia on the political agenda when they take on the EU Presidency. The Belgian government has decided to organise a high level meeting entitled “how to improve the quality of life for people with dementia” to which people from the Member States would be invited. Within this context, Ms Aelvoet is supervising a report on a survey which the Belgian authorities sent to both health authorities and associations within the Member States. The report will be shared at the high level meeting and Ms Aelvoet said that already the message is being heard that when one talks about quality of life, the carer should receive a lot of attention. Ms Aelvoet said, “it is important to see there are good practices which should be common knowledge.”
Sirpa Pietikäinen (MEP, Finland) said that she had her own personal experience of dementia as her mother has it. She highlighted three ways in which the EU could work in the area of dementia. Firstly, by extending the principle found in the Århus Convention, whereby an NGO is appointed to represent the interests of “those who cannot speak” more widely. Ms Pietikäinen mooted whether Alzheimer associations could provide this for people with dementia. Secondly, Ms Pietikäinen said that she believed it important that Member States have national programmes for dementia and then have a system of open co-ordination. Lastly, Ms Pietikäinen said the rights laid down in the Lisbon Treaty could be used more fully.
Newly-elected MEP, Keith Taylor (UK) said that he had found the debate to be interesting but sought clarification that research has economic benefits. Mr Ketteringham replied that in the UK less than GBP 40 million of public funds is put into dementia research each year, which, he said, is tiny compared to that of other diseases. Mr Ketteringham also said that if the onset of the disease can be delayed by five years, then some figures can be reduced including the numbers of people but also the financial burden.
Elisabeth Morin-Chartier (MEP, France) also highlighted the fact that in the UK people often pay for their own care, incurring enormous costs which could be deferred and even excluded if the onset of Alzheimer’s disease could be delayed. She concluded that we simply cannot keep talking in economic terms but keep in mind the human aspect of the disease.
Florence Lustman said that the economic cost is not the most important aspect of the plan and that she feels uncomfortable when discussions become limited to public funding. She reiterated the need for a diagnosis. In France, there is a relatively short waiting time (around 50 days) to receive a diagnosis and yet only one out of every two cases of dementia is diagnosed. Ms Lustman believes that doctors hold the key to why rates are so low. When she had meetings with them she was told that they were hesitant to give a diagnosis of dementia as some of them believed nothing could be done – a fact which Ms Lustman vehemently disagrees with. She would like to see that the message is received throughout Europe that there is help and intervention programmes which can improve the quality of life for people with dementia and their carers.
Jean Georges said there is a huge growing sector in which more people are being employed to take care of people with dementia. This has benefits in terms of employment and taxation which can be seen as an investment.
Ms Morin-Chartier concurred and said that the EU needs to introduce flexible hours in the field of employment to enable people to have time to care and that the workforce need training programmes to help them detect symptoms and care in the best possible way.
Magda Aelvoet called for the image of dementia to be changed within society. She felt that we should all prepare our own societies, making them aware that although dementia is indeed a difficult disease to live with, you can live with it and live with it well.
Andrew Ketteringham agreed that Member States need to address the stigma of the disease but he said he preferred to use the term ‘understanding’ rather than ‘awareness’ as he believed understanding is twofold: of the disease itself and of how to respond.
Mr Ketteringham thanked the EU Parliament for calling for an action plan and applauded the EU Presidencies for placing and keeping dementia on the political agenda, but called for the EU to do more. He called on the Parliament to take the leadership in this issue. Florence Lustman thanked Ms Roth-Behrendt for organising the lunch debate and said that whilst recognising the tremendous steps taken, France wants more action from the European Commission.
Closing the debate, Mr O’Connell, Chairperson of Alzheimer Europe, said that as Vice-Chair of the Alliance he knows that Ms Roth-Behrendt will continue to make dementia a priority. He noted that, yet again, Ms Lustman’s enthusiasm for the French plan and her commitment was something every participant could take away from the meeting with great fondness and, he thanked Andrew Ketteringham for his deep insight into the issues which need to be addressed. The next debate in the European Parliament will be held on 7 December 2010.
Last Updated: mardi 27 mars 2012