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Symposium S4: Facing dementia together - The dementia community and policy makers

Detailed Programme and abstracts

Saturday, 2 October 2010: 16.00-17.30 (Red Room)

S4.1. European initiatives in the field of Alzheimer’s disease

Antoni Montserrat Moliner, Policy Officer for Rare and Neurodevelopmental Diseases, Directorate C ' Public Health and Risk Assessment', Unit C-2 , European Commission

The European Commission adopted on 22 July 2009 a proposal for a Council Recommendation on measures to combat neurodegenerative diseases, in particular Alzheimer's, through joint programming of research activities and the Commission Communication COM(2009) 380/4 to the European Parliament and the Council on a European initiative on Alzheimer’s disease and other dementias.

To implement the actions scheduled in Commission Communication, the Joint Action "ALzheimer COoperative Valuation in Europe" (ALCOVE), has been launched under the Work Plan 2010 for the implementation of the Second Health Programme Tin order to map the existing and emerging good practices related to treatment (including early detection) and care for persons suffering from Alzheimer's disease and other forms of dementia and to improve the dissemination and application of such practices.. This Joint Action between the Commission and Member States is led by the Haute Autorité de Santé (France), and intends to improve knowledge and to formulate recommendations in four specific fields of activities, in order to facilitate policy and health care decision making in European countries: (1) Improvement of epidemiological data on AD and other dementias; (2) Improvement of prevention and diagnosis, particularly early diagnosis; (3) Improvement of existing practices of care, both medical and social care and of practices in training; and (4) Improvement of consent and use of the advance declarations of will as well as practices in assessing competence of elderly people with cognitive impairments. The European Commission will be supporting the work of the Joint Action an EU contribution of close to € 0.7 million

The initially proposed Council Recommendation was finally reconverted in a Commission initiative adopted on 15th April 2010 as a wide Research initiative to tackle neurodegenerative diseases such as Alzheimer’s and Parkinson’s disease. This is the first of the new European Union Joint Programming initiatives. To achieve this goal, 24 European countries, sharing a common vision, have decided to work together in an unprecedented collaborative initiative in research which is seeking to align their scientific competencies, medical strengths and social approaches to tackle the challenge. The European Commission will be supporting the work of the initiative through a coordinating action with an EU contribution of close to € 2 million.

Under the initiative of the European Parliament Interest Group on Carers DG EMPL is implementing the December 2009 Council conclusions, which call for a European action programme on healthy and dignified ageing (as a result of the September Swedish presidency conference on that topic). Carers and their issues will certainly feature in this action programme; the need for better dialogue and cooperation between professional and informal care providers will be another important focus. The European Social Fund provides funding for training; training of carers would certainly be considered part of this. Current discussions are ongoing on designating 2012 as the European Year on Active Ageing and Solidarity between the Generations.

The PharmaCOG (Prediction of Cognitive properties of new drug candidates for neurodegenerative diseases in early clinical development) project, co-coordinated by the Université de la Méditerranée (Marseille, France), will create a new and unique partnership between the European Commission and the EFPIA (European Federation of Pharmaceutical Industries and Associations). With a co-founding of € 9M by the Innovative Medicines Initiative of the European Union and € 13M by the EFPIA partners, it is the most ambitious project tackling Alzheimer's disease ever funded at European level in order to validate tools necessary to streamline Alzheimer's disease drug discovery and accelerate effective medicine to patients.

The Commission will also launch a very important initiative in the context of the European Year of Active Ageing 2012 consisting in a Active and Healthy Ageing Innovation Partnership with the strategic objective to maintain the rapidly ageing European population healthy, active and independent thus contributing to the objectives of growth as outlined in the Europe 2020.

S4.2. Dementia as a national priority: An overview of dementia strategies

Heike von Lützau-Hohlbein, Deutsche Alzheimer Gesellschaft, Germany,

At its Annual General Meeting in 2006, Alzheimer Europe and its national member organisations unanimously adopted the Paris Declaration on the political priorities of the European Alzheimer movement. As its first priority, Alzheimer Europe called upon the European Union, the World Health Organisation and national governments to recognise Alzheimer's disease as a major public health issue and develop European and international programmes as well as national action plans to adequately respond to the challenges posed by the growing numbers of people with dementia.

In her presentation, Heike von Lützau-Hohlbein will consider the efforts undertaken in a number of European countries towards the establishment of such national dementia strategies or Alzheimer plans. Furthermore, she will compare how far countries have progressed in the implementation of the key priorities of Alzheimer Europe’s Paris Declaration.

As a former carer of her mother and mother-in-law who had dementia, she will provide a very personal evaluation of how the policies of dementia strategies can affect people with dementia and their carers.

S4.3. The care sector as an economic and employment factor

Jeannot Krecké, Minister for the Economy and Foreign Trade, Luxembourg

The number of studies on the economic cost of dementia to our societies is significant. The recent project “European Collaboration on Dementia – EuroCoDe” financed by the European Commission and coordinated by Alzheimer Europe estimates the overall cost of illness in Europe (EU-27) for people with Alzheimer’s disease and other forms of dementia at EUR 160.3 billion (i.e. EUR 71.7 billion for direct costs and EUR 88.6 billion for informal care).

In a number of European countries, discussions are underway on the future financing of long-term care in general and dementia care in particular. As a member of the Luxembourg Parliament and chair of the Luxembourg Alzheimer’s association, Jeannot Krecké took an active involvement in the introduction of the long-term care insurance in Luxembourg in the late 1990s.

In his presentation, he will assess in his current position as Minister for the Economy and Foreign Trade, how the introduction of the long-term care insurance contributed to a significant growth of the care sector in economic and employment terms.

S4.4. A societal response to dementia

Gerrit Rauws, King Baudouin Foundation, Belgium,

Dementia is a decline in mental ability that usually progresses slowly, in which memory, thinking, and judgement are impaired, and personality may deteriorate. It mainly affects those aged over 60. It is one of the most important causes of disability in the elderly.

Contrary to what usually is thought, dementia is more than loss of memory. It causes deterioration in all areas of mental ability and function. Most often it is accompanied by changes in behaviour and personality. As the disease progresses, people change from being healthy, autonomous members of society to being more dependent on others, both physically and mentally.

We also have a growing awareness of the abilities and emotions which are retained long into dementia, despite serious cognitive decline. Yet, this increase in knowledge has not yet delivered effective medical treatments to reverse, halt or even significantly slow down the deterioration of the brain function in dementia. Treatments to mitigate the effects of dementia remain limited. This lack of effective cure challenges society as a whole to look more closely at how people can be supported to live well with dementia, how their experience of disability can be minimized, and how their relatives can be supported in coping well with the disease of their loved ones.

Dementia is a challenging phenomenon particularly in western societies as the condition is opposite to the human ideal our societies strive for; a person with dementia is not any longer competent, not quick and efficient, not trendy. In one word, a person with dementia is the living antipode of the successful modern man.

Therefore the way we see, feel and fear dementia has a lot to do with the dominant image of the disease in our society. The outspoken negative image influences very strongly our view on people who are confronted with dementia, it colours our feelings and conditions our way of dealing with this reality. The attitude our society adopts towards dementia and those immediately involved with it is of utmost importance.

As the WHO has emphasised, the symptoms of dementia are “powerfully stigmatising”. Consequently, public awareness campaigns are required in Europe and worldwide, so that the stigma effect is reduced and people with dementia no longer experience exclusion pressures with a concomitant improvement in their quality of life.

The stigmatising labeling of people with dementia sort of locks them up whereby their shrinking possibilities shrivel untimely. Getting rid of the stigma is a heavy and difficult process requiring the commitment of different levels, actors and authorities. It is the precondition for levelling the path to enhanced quality of life for people with dementia and their carers.

The local community can help in this situation by maintaining the social network of the family carer and by creating links between people facing the problem and the local community as a whole . The “dementia friendly communities” initiatives are particularly interesting in this respect. Reducing the isolation of the carer has also a knock-on benefit for the wellbeing of the person with dementia delaying the need for institutional care. Greater openness about dementia by high profile people with dementia can make a profound contribution to this process

It is clear from the wide variability in the disease progression and in individual circumstances that support for carers and people with dementia needs to be tailored to the individual situation. Furthermore, it should be noted that socio-psychological interventions which are aimed at both the person with dementia and the carer are most effective.



Last Updated: Wednesday 03 November 2010