6 December 2011: Lunch debate on the "Value of Knowing" survey
Frieda Brepoels, MEP (Belgium) and Vice-chair of the European Alzheimer’s Alliance (EAA), hosted Alzheimer Europe’s 11th lunch debate, “Public perceptions of Alzheimer’s disease and the value of diagnosis”. The survey was carried out by Alzheimer Europe in association with the Harvard School of Public Health in four European countries (France, Germany, Poland and Spain) and the US. The debate in the European Parliament was attended by nine MEPs and/or assistants, national policy makers, representatives from the European Commission, Alzheimer associations and pharmaceutical companies.
Opening the debate, Ms Brepoels reminded the audience that in Europe 7.3 million people have dementia and that this is estimated to increase significantly. She illustrated how EU policy makers are prioritising Alzheimer’s disease and said “It is indisputable that early diagnosis will help people with dementia and their carers to put in place measures that help them to deal with the disease in a better way.”
A summary of the findings was presented by Jean Georges, Executive Director, Alzheimer Europe. (Further details of the findings were reported in issue 9 of the Dementia in Europe magazine). During the debate some of the key issues discussed were:
- A willingness to see a doctor and to receive a diagnosis
- A high level of fear amongst the public of the disease, with Alzheimer’s disease being the 2nd most feared disease
- An overwhelming support for greater public investment in care and research
- A lack of understanding of later symptoms and the severity of the disease
- A misunderstanding of the efficacy of available treatment and the reliability of existing diagnostic tests
Marina Yannakoudakis, MEP (UK) questioned why there was a delay of 32 months in the UK to receive a diagnosis of dementia from the first presentation of symptoms. Mr Georges explained that the structure of healthcare systems can have an impact on prolonging the time to diagnosis, especially if the primary care sector plays a gatekeeper role in which general practitioners need to refer suspected cases to a specialist for diagnosis and treatment. This UK approach contrasts with other countries, such as Germany, where general physicians can diagnose Alzheimer’s disease.
Nessa Childers, MEP (Ireland) asked whether symptoms may be missed during the primary care process and Mr Georges highlighted that another survey had revealed early symptoms such as forgetfulness and other minor symptoms are not always picked up on. Even when people presented symptoms such as behavioural issues it was found that a diagnosis was not given and therefore, Mr Georges said that a lot of awareness raising still needs to be done.
Ms Brepoels was interested to know why it was that only in Poland people were more frightened of heart disease than dementia. Alicja Sadowska, Chairperson of the Alzheimer’s Association in Poland, explained that a very successful campaign had been run on raising awareness about the consequences of heart disease and that now the government needs to develop a national Alzheimer’s plan which incorporates raising awareness and understanding of dementia and prescribes ways to support people with dementia and their carers.
As more investment in research was endorsed in the survey, Vittorino Prodi, MEP (Italy) suggested that the European Parliament use the Horizon 2020 initiative to secure this. Mr Georges concurred and suggested that the public health programme is also of key importance. He said, “from our point of view, the European Parliament and the European Alzheimer’s Alliance have been fantastic allies and we are counting on their continued support to ensure that Alzheimer’s disease and other forms of dementia are recognised as priorities in the new research and public health programmes.”
To a question about the development of a predictive test, Sigurd Sparr, Honorary Secretary of the Board of Alzheimer Europe, explained that there is currently no such test and highlighted the importance of ethical consideration for predictive tests in the absence of treatment and preventive measures.
Heike von Lützau-Hohlbein, Chairperson of Alzheimer Europe, took the opportunity to present the 2011 Alzheimer Europe Yearbook which is dedicated to the legal provisions relating to the restriction of the freedom of movement of people with dementia (details of this can be found on p 12 on this magazine).
Frieda Brepoels concluded that “this survey clearly shows significant public interest in dementia and reinforces the commitment to support early diagnosis in Europe. It also highlights the importance of managing false expectations and this is precisely why it is important that realistic awareness raising is supported by the EU”. She closed the debate saying, “Since I joined the Alliance, important achievements have been made but it is also thanks to the work of Alzheimer Europe. However, a lot remains to be done and I can assure of my continued support as well as that of my colleagues here today.”
The report with the “Value of Knowing” survey results is available in English, French, German, Polish and Spanish from Alzheimer Europe.
Last Updated: Tuesday 27 March 2012