28 June 2011: Lunch debate to introduce the ALCOVE project
On 28 June 2011, Sirpa Pietikäinen, MEP (Finland) hosted Alzheimer Europe’s 10th lunch debate, which presented the European Joint Action on Dementia, namely "the Alzheimer Cooperative Valuation in Europe" or ALCOVE project. Ms Pietikäinen was joined by Dr. Armelle Leperre-Desplanques, ALCOVE project leader.
Nearly 40 participants, including Frieda Brepoels, MEP (Belgium), several MEP’s assistants, representatives from DG Research, the Innovative Medicine Initiative, National Health Ministries, Permanent Representations and national Alzheimer associations took part in the debate.
Ms Pietikäinen gave a brief overview of how European action to address dementia has increased in recent years, citing the Alzheimer Europe 2006 Paris Declaration (which lists the political priorities of the European Alzheimer movement), the 2008 French European Presidency conference (on the fight against Alzheimer’s disease), subsequent Council health recommendations, the 2009 European Parliament Written Declaration (on priorities in the fight against Alzheimer’s disease) and the call by the European Parliament for European action on dementia. ALCOVE is an example of one such action.
Dr. Leperre-Desplanques, explained that the presentation was developed by herself, Nathalie Riolacci-Dhoyen and Maggie Galbraith. Dr. Leperre-Desplanques said that ALCOVE is a Joint Action which is co-financed by the European Commission and it combines a wide spectrum of expertise by including input from physicians, researchers, clinicians, policy makers and legal experts. Having established dementia as a public health priority, she said, it was necessary to share experiences to develop a health policy. The project has the aim of capitalising on the work conducted during previous European studies [including Alzheimer Europe’s European Collaboration on Dementia (EuroCoDe) project].
The French Ministry of Health appointed Haute Autorité de Santé (HAS) in France as the main partner of the project. A willingness to participate and work collaboratively in this voluntary joint action has been shown by 30 partners from 19 countries (Belgium, Cyprus, Czech Republic, Finland, France, Greece, Hungary, Italy, Latvia, Lithuania, Luxembourg, Malta, Netherlands, Norway, Portugal, Slovakia, Slovakia, Spain, Sweden and the UK) all of which have agreed to work in a collaborative manner at European level. Seven countries are leaders of 7 work packages and the work package leaders will identify key stakeholders, including national Alzheimer associations, to involve in carrying out their work. The Executive Board is composed of the 7 workpackage leaders. Essentially, four core questions are to be addressed:
- How to improve data for better knowledge about dementia prevalence? This workpackage (WP4) is led by Italy (Istitute Superiore di Sanita) and the aim is “to assess available epidemiological studies on dementia and to define best criteria for them in order to improve epidemiological data collection”. New studies will not be conducted, rather the group will consider existing information systems in all countries.
- How to improve access to dementia diagnosis as early as possible? The UK (Department of Health) will lead this workpackage (WP5) and will “address diagnosis through the assessment of (i) national recommendations, (ii) health care systems for early diagnosis of dementia and (iii) the implementation of such recommendations and systems”. Dr. Leperre-Desplanques emphasised the importance of not only identifying systems for early diagnosis, but, of also of assessing how to implement them in different countries.
- How to improve care for people living with dementia and particularly those with behavioural disorders? Dr. Leperre-Desplanques reflected that this is perhaps the most challenging of the workpackages and currently the analyses are completed but now consideration is being given to how the different health care systems can provide best practice guidelines. Finland (National Institute for Health and Welfare) are the leaders of this workpackage (WP6) which will “assess existing practices in home and institutionalised care and in training provided to carers and health professionals”.
- How to improve the rights of people with dementia, particularly with respect to advance declarations of will? This workpackage (WP7) will be led by Belgium (King Baudoin Foundation) and this group will “examine the issue of autonomy and dignity of people with dementia from an ethical and legal perspective”.
There are three transversal workpackages : coordination (WP1) led by France (HAS), dissemination (WP2) led by Spain (Instituto de Salud Carolos III) and evaluation (WP3) led Slovakia (Neuro Immunology Institute).
Work began on the project this year in Luxembourg with the Executive Board and Steering Committee deciding on the method to be employed. Over a period of 2 years, existing information will be collected, analysed, needs and priorities identified and finally recommendations made and information disseminated at the ALCOVE seminar planned in March 2013. Dr. Leperre-Desplanques assured the national Alzheimer associations in the audience that they would be exposed to the outcome of the workpackages before they were published.
Three main outcomes are anticipated:
- The establishment of sustainable European network for the exchange of experiences and knowledge at the level of health care institutions in order to improve quality of care and services
- To inform and advise decision-makers, health care professionals, care givers and citizens in general through convergent recommendations in terms of health policy and
- A reduction in the risks associated with psychotropic drugs, with a common focus on the use of psychotropic drugs, in particular antipsychotics.
Dr. Leperre-Desplanques focused on the issue of antipsychotics and highlighted that the knowledge we have now (that antipsychotics can be non-effective, have side effects and can have a negative impact on the quality of life) was not available five years ago. This leads to different solutions being proposed such as an increase in care and an increase in the quality of life.
Sirpa Pietikäinenaffirmed this by explaining that she had had the privilege of caring for her mother, who had dementia and that it proved highly beneficial to her mother to walk 3-4 km each day. The issue regarding antipsychotics is, said Ms Pietikäinen, that the use of antipsychotics is an abuse of human rights and not ethically right.
Frieda Brepoels, MEP (Belgium), wanted to know why certain Member States had not committed to this project such as Germany and Poland, the latter having the incoming Presidency of the EU. Dr. Leperre-Desplanques said that reasons could be that the project has a limited budget, limited resources, is maybe perceived as not as important as other projects and is very short-term: all of these factors can make the project one which can be challenging to commit to. The project was also set up in a short time which may have resulted in less responsiveness. On the other hand, Dr. Leperre-Desplanques reminded the audience that it was not too late to become a partner of the project and that the work groups are open to cooperation. She explained that it is the workpackage leaders who are in charge of the coordination of the project and that Germany had been invited to participate but chose not to.
Clarification was sought by Ms Brepoels regarding the competence of partners required at national level and Dr. Leperre-Desplanques said that the project is voluntary and that partners cannot be forced to work on it. It is the choice of each national government to propose a partner for the project and therefore the issue of competence is addressed at national level.
Whilst applauding the tight deadline within which the project is to be completed, Jeremy Hughes, Chief Executive of the Alzheimer’s Society, UK, stressed the importance of collecting data in a standardised way, which is challenging when some countries do not have data. Ms Leperre-Desplanques explained that the workpackage leaders agreed with this concern and want to propose a common set of standards which would be implemented in all countries.
Heike von Lützau-Hohlbein, Chairperson of Alzheimer Europe, asked how the results of the recommendations can be measured to ensure that they are implemented? Dr. Leperre-Desplanques said that this will be difficult as ALCOVE is such a short project. Work is on-going on quality indicators but at this point in time she is not able to give concrete outcomes, although because the work on antipsychotics is so advanced it would be possible to propose a concrete programme about their use.
The issue of dissemination and involvement by civil society was raised by several participants. Charles Scerri, General Secretary of the Malta Dementia Society, asked if patient organisations would be involved in the dissemination part of the ALCOVE project. Dr. Leperre-Desplanques said that it is early days yet and national Alzheimer associations will be invited along with all participants of ALCOVE but that it was up to the workpackage leaders to identify who to include. Dr. Leperre-Desplanques also remarked that before the process of data dissemination takes place, it is clear that better coordination with Alzheimer associations needs to be achieved before publication. Mary Van Dievel, Mental Health Europe, reinforced the importance of including civil society and asked not only how civil society will be involved in future projects (especially in the forthcoming joint action on mental health) but also whether partners in the joint actions are urged to involve civil society. Ms Van Dievel highlighted the importance of such involvement, especially as it is at Member State level that results will be seen.
Jean Georges, Executive Director of Alzheimer Europe, said it would be very helpful to have some way of continually monitoring policy by way of a Dementia European observatory. Replying, Dr. Leperre-Desplanques said that the ALCOVE network is not a specialist body of European policy, rather it is a network of experts on policy in each country and therefore don’t have the necessary expertise for European level. However, she believed that it is possible to work together to bring the expertise to European level.
Mr Georges also reflected that the cost of joint action on Alzheimer’s disease is quite moderate. Recognising that dementia is one of the most costly diseases (e.g. it costs more than cancer and cardiovascular disease combined), Mr Georges asked what other joint action has been financed and to what level. Dr. Leperre-Desplanques said that this joint action had been strongly supported by France. She gave an example of a currently discussed joint European action on patient safety, which had more than 40 partners, with a time frame of 3-4 years and a budget of EUR 6m. Mr Manuel Romaris, DG Research, explained that since 2007, EUR 300 m had been invested on brain neurodegenerative research in Europe. He highlighted the joint programming initiative which has a small budget of EUR 2m, but that the idea is for Member States to pool their own resources and that the Commission’s role is to support the initiative by coordinating the project to facilitate Member States working together. Jean Georges remarked that it would be nice to see the same investment in DG Sanco (public health) as in DG research.
Sirpa Pietikäinen concluded the debate by stressing the need to engage everyone at all levels and that national Alzheimer associations be included in this process.
Heike von Lützau-Hohlbein closed the debate by thanking Dr. Leperre-Desplanques for such a clear and interesting presentation and the audience for their active participation. She identified three elements which she would take away from the meeting:
- Collaboration: Better ways needed to be found to collaborate with patient organisations and that we all need to consider how to reach countries which are not yet involved.
- Dissemination: That Alzheimer associations can play an important role in this process.
- Monitoring implementation: Whilst Ms von Lützau-Hohlbein was very positive that this work was being done, she said it is a weakness if the results are not measured.
Ms von Lützau-Hohlbein concluded by saying, “We must be willing to measure the results of our work because we are the ones who want to help people with dementia and their carers. This is why we are here”.
Last Updated: Tuesday 27 March 2012