June 2013: Debating dementia in the European Parliament "Joint Action on Alzheimer Cooperation Valuation in Europe (ALCOVE)"
Maria Matias, MEP (Portugal) hosted Alzheimer Europe’s 15th lunch debate with the European Parliament which was dedicated to a discussion of the Joint Action on Alzheimer Cooperation Valuation in Europe (ALCOVE).
Maria Matias, MEP (Portugal) opened the debate by explaining that the work on issues surrounding Alzheimer’s disease by in Europe needs to continue and will indeed continue. She thanked her Parliamentary colleagues, MEPs Martina Anderson (UK), Sirpa Pietikäinen (Finland) and Angelika Werthmann (Austria), representatives from the European Commission, the pharmaceutical industry and national Alzheimer associations for supporting the debate.
Armelle Leperre-Desplanques, PhD, Manager of the Pilot Programmes, Division of Quality and Safety Improvement in Health Care, French National Authority for Health, presented an overview of the results and recommendations from ALCOVE. It was a collective work that enjoyed the commitment of 19 countries, 30 organisations, 100 authors and contributions from Alzheimer Europe and many national Alzheimer associations. The work packages were led by seven country leaders: Belgium, Finland, France, Italy, Slovakia, Spain and the UK.
ALCOVE arose from a need to share knowledge and experiences between European Member States, in order to make health policy recommendations to improve care for dementia in Europe. The project's scientific methodology is available on the ALCOVE website (www.alcove-project.eu). Once data was collected it was reviewed and analysed by European experts. The teams compared the situation within the EU and identified good practices to ensure that their recommendations were based on reality. and offer ways in which situations could be improved. By working together and also alongside other EU initiatives, Ms Leperre-Desplanques said that the proposed recommendations are well-adapted to the continuous evolution of our current knowledge and that they respect the links between social, medical care and research issues. The recommendations are directed at each of the four core areas [epidemiology, timely diagnosis, behavioural and psychological symptoms of dementia (BPSD] support systems and ethics) and also the additional topic of antipsychotics.
Dr Leperre-Desplanques highlighted the issues raised when trying to understand prevalence and epidemiological data about dementia. Analysis revealed that different studies on prevalence employed different criteria. A better estimation of dementia prevalence, based on shared quality criteria will better inform policies and help planning. Consequently, the first recommendation is to promote the highest quality epidemiological studies, which in turn will enable the monitoring of dementia prevalence.
There is a lack of information in many countries regarding the use of antipsychotics for dementia. Nowadays there are other possibilities yet they are not always applied. This situation needs to be monitored if changes are to be achieved and ALCOVE recommends that data collection on antipsychotics for dementia be urgently improved.
Health and social systems need to be adapted to meet the needs of people with dementia and we also need to establish whether treatment is effective. This can only be done by having access to the best available knowledge. ALCOVE conducted a survey of more than 80 databases across the EU and found many cases where information was inconsistent or missing. Another recommendation is that a minimum data set, shared among different Member States, should be adopted for administrative, clinical, epidemiological and other relevant data sources. The dataset should include general data on chronic diseases and specific data on dementia.
Dr Leperre-Desplaques explained that the issue of diagnosis is complex, as there are many competing views on when a diagnosis can or should be made. There are some who are keen to work at the very beginning of the disease process, while others believe that a diagnostic policy should be concrete but also beneficial for the maximum number of people. Then there are those who focus on the importance of the consequences that a diagnosis brings, as dementia happens to real people with families and has profound consequences on all. Therefore, a double approach was taken when considering various diagnostic opportunities: this considered not only the science and literature, but also the reality of what a diagnosis means to a person at the receiving end.
At the moment, approximately 50% of people with dementia in the EU are still left undiagnosed and existing diagnoses are generally made at a late stage of the disease. ALCOVE recommends that the point of diagnosis move to an earlier stage in the disease. This would respect the individual’s right to know, adjust, plan, make decisions and also allow for the possibility of an improved quality of life with access to treatment, intervention and services. It would also give families more time to adjust and obtain support. However, these benefits will only be realised if health and social policies are adjusted and services are in place and accessible: without these, an earlier diagnosis could result in a misdiagnosis, potentially leading to feelings of isolation and negative attitudes.
The four principles of diagnosis identified by ALCOVE are that (i) it should be timely and accessible, (ii) fear and stigma about dementia need to be addressed if an increase in the number of people coming forward for a diagnosis is to be achieved, (iii) the rights and wishes of the person should be paramount and (iv) giving and receiving a diagnosis of dementia is a key intervention in the adjustment process. These principles may be used in each country to assess where they are on issues of diagnosis and also to plan national and EU strategies to improve timely diagnosis.
ALCOVE considered the best strategies for dealing with the behavioural and psychological symptoms of dementia (BPSD). These represent the main causes of a dramatic impairment of quality of life for people with dementia and carers and are also the principal cause of institutionalisation. ALCOVE recommends a patient pathway with dedicated “3D support systems” for BPSD. These consist of how to develop and/or implement (i) structures and care organisations for BPSD (ii) individualised patient and family carer interventions and (iii) a skilled workforce.
Bénédicte Gombault from the King Baudouin Foundation presented an overview of work package 7, which focused on the ethical and legal aspects of competence assessment and advance directives for people with dementia. The team carried out a literature review, a survey of 27 countries and held three workshops. It was clear that whilst there are many different religious and philosophical backgrounds in the EU, there are also some basic common values: the most important being that human dignity needs to be respected. She explained that the issue of competence is of particular importance in cases of dementia, as it will change over time, and that it is essential to strike a balance between the autonomy of the person with dementia and his/her protection. Two tools may help: Advance Directives can facilitate the dialogue between the person with dementia and professional carers and competence assessments can be used to support the presumption of competence whilst taking into account the capacity of the person with dementia. Recommendations for Advance Directives include that they should be part of the broader context of advance care planning. The team found the process of defining competence assessment to be highly complex. Ms Gombault said that much work remains to be done on this issue and that there is an urgent need for additional research.
Dr Leperre-Desplanques concluded the presentation by explaining that a detailed report from each work package is available on the ALCOVE website. She noted that there is a particularly nice presentation of the toolbox to reduce antipsychotics which includes a concrete proposition of programmes. There are now 53 recommendations based on science, exchange and collaboration. Over the next two years, the results of ALCOVE will be shared and discussed in order to ascertain how best to implement the recommendations. In this regard, she thanked Alzheimer Europe for providing a platform to do so at the organisation's conference in Malta in October.
Sirpa Pietikäinen, MEP (Finland), thanked the presenters and added that it was necessary for politicians to push the message that people with BPSD can be helped at home and that it isn’t always necessary to be institutionalised. In addition, she emphasised the importance of ensuring that people realise advance directives are about choice: to accept or reject specific care. She believed that many people immediately associate advance directives with the rejection of care and that it is essential that this be corrected (or cleared up). Lastly, Ms Pietikäinen asked whether these issues could be raised as human rights issues on a national level.
Ms Matias supported the ALCOVE recommendations and embraced the holistic approach which the project adopted. She also spoke of the huge challenge of lack of resources, faced in particular by southern EU countries. Ms Matias believed that the Parliament wants to support these measures but asked how MEPs can fight for their implementation when there is a constant demand to cut back on resources in the public health domain. Dr Leperre-Desplanques agreed that people with dementia and their carers need a response to this dilemma. She reflected that the situation was the same in France, where there is an Alzheimer plan with only limited resources. She said it is important to enlighten decision makers about the balance to be struck between research and care. Investment in research is certainly required and national strategies can provide solutions which offer a balanced approach. As an example, she highlighted psychosocial intervention programmes, which have proved effective and yet less costly than other solutions. Dr Leperre-Desplanques explained that it was the need to strike this balance which necessitates the need for concrete discussions between experts and governmental policy makers. She also believed that the EU should have a key role in facilitating these discussions.
Hegla Rohra, who lives with dementia and is the Chairperson of the European Working Group of People with Dementia, raised the issue of addressing the special needs of younger people with dementia. Dr Leperre-Desplanques explained that the project was limited to two years so they had not been able to explore every issue but agreed that a better understanding is required of the issues which arise for younger people with dementia. There is a specific recommendation for this included in ALCOVE.
Jean Georges, Executive Director, Alzheimer Europe, thanked the presenters for the recognition given to Alzheimer Europe’s work. He said that one of Alzheimer Europe’s roles is to highlight differences between countries. He explained that the organisation is developing a benchmark known as the “Dementia Monitor” that will monitor these differences. He said that in times of austerity, we owe it to people with dementia to offer the best possible care, treatment and diagnosis and that he hoped to be able to use the data from ALCOVE to this end.
Ms Matias thanked the presenters. She said that we should all work together and even create a revolution to build on this information.
Heike von Lützau-Hohlbein, Chairperson, Alzheimer Europe, emphasised the importance of sharing, saying “We need to be sensitive to the fears of people with dementia and of their families. We know it works both ways: just as a person with dementia can be in denial, a family may also be in denial because they do not want to accept that a loved one is getting memory problems.” She thanked everyone for their support and participation and closed the meeting.
Last Updated: Wednesday 20 November 2013