Alzheimer Europe chief: Holistic approach needed to tackle dementia

Alzheimer’s disease and other forms of dementia remain underdiagnosed in most European countries, Jean Georges told EURACTIV.

Jean Georges is the Executive Director of Alzheimer Europe, a non-profit organisation aiming at improving care and treatment of patients with Alzheimer’s disease. 

Georges spoke with EURACTIV’s Sarantis Michalopoulos.

According to the 2016 Alzheimer’s Disease International report, dementia affects 47 million people worldwide and this number will treble by 2050. What are the reasons for that? Do you believe that the current care system for dementia should be redesigned?

Age is the primary risk factor for Alzheimer’s disease and for that reason the numbers of people affected is increasing as our populations are ageing. Alzheimer Europe estimates that 8.7 million people are living with Alzheimer’s disease or another type of dementia in the European Union alone.

In 2008, a group of researchers estimated the cost per person with dementia in the European Union to be €22,000 per year, with great variations across the EU since the societal costs were estimated to be eight times more in Northern Europe than in Eastern Europe. However, it is  the growing numbers of people with dementia in all European countries will pose serious challenges to the sustainability of current health and care systems.

For that reason, Alzheimer Europe and its national member organisations have been actively campaigning to have dementia recognised as a public health priority at EU and national level.

Rising dementia numbers in EU causes alarm

The European Union is stepping up efforts to combat dementia, but is being urged to do more, as 18.7 million EU citizens are expected to suffer from the illness by 2050.

Do you see political appetite among EU politicians to address this situation? Do you believe that EU politicians realise the seriousness of Alzheimer’s disease and other dementias?

We are encouraged by the growing number of EU politicians who have supported our campaign over the past years. In 2007, a small group of MEPs helped us in setting up the European Alzheimer’s Alliance which has since grown to 127 MEPs from 27 EU countries.

Thanks to their support, awareness of dementia has increased, the need for greater European collaboration has been recognised and we have seen a number of EU Presidencies making further progress.

One of the first EU presidencies to do so was the French Presidency of the European Union in 2008 which organised the first Presidency Conference dedicated to Alzheimer’s disease and which led to the creation of the Joint Programme on Neurodegenerative Diseases Research (JPND) and the adoption by the European Commission of its European Alzheimer’s Initiative.

Since then, the EU Presidencies of Italy (2014), Luxembourg (2015) and the Netherlands (2016) have continued the focus on dementia and the current Slovak EU Presidency will organise a conference on 29 November entitled “Alzheimer’s disease – epidemic of the third millennium – Are we ready to face it?”

What kind of initiatives do you think should be taken at EU level in order to put this chronic disease under control?

We have been campaigning since 2006 to have dementia recognised as a European priority. In our Paris (2006) and Glasgow (2014) Declarations, we called for the development of national dementia strategies in all European countries as well as the development of a European action plan.

Such a European action plan or strategy should be comprised of two key elements:

1. On the one hand, the European Union should develop a comprehensive and holistic research agenda, which encompasses and supports all types of research (basic, clinical, psychosocial, care, epidemiological, health systems and health economics). Funding for dementia research should be increased substantially and better coordinated at EU level.
2. On the other hand, the European Union should promote the collaboration between health and social ministries and encourage them to learn from one another by exchanging information on innovative initiatives and existing good practices.

I would also like to see the appointment of a dementia coordinator at European Commission level and the further development of the European group of government experts on dementia.

The EU Council of Ministers has urged member states to set up national strategies to address the situation as well as boost their multilateral collaboration. What is the current state-of-play? Which countries have made the most progress and which ones are still lagging behind?

We welcomed the efforts of the Luxembourg Presidency of the European Union which resulted in the adoption by health ministers of very ambitious Presidency conclusions on Supporting people living with dementia, which called for greater European collaboration and the development of national dementia strategies. It was great to see that Health Ministers thus gave a ringing endorsement to our own campaign.

When we issued our call to have countries develop national dementia strategies in 2006, France was the only EU country which had a very modest Alzheimer’s plan. The number of countries with such plans in place has continued to grow and we now have dementia or neurodegenerative disease strategies in place in Austria, Belgium, Cyprus, Czech Republic, Denmark, Greece, Ireland, Italy, Luxembourg, Malta, the Netherlands, Norway, Slovenia, Spain, Switzerland and the UK (with separate strategies for England, Northern Ireland and Scotland).

There are of course huge variations between countries as to the contents, funding and monitoring of these strategies. Also, some countries without strategies have very comprehensive guidelines or research programmes in place without these having been formalised into a strategic framework.

What do you believe should be done in order to improve diagnosis of dementia? Are you satisfied with the research initiatives taken at EU level?

Alzheimer’s disease and other forms of dementia remain underdiagnosed in most European countries. Our national associations have estimated that between half and two-thirds of people with dementia do not have a formal diagnosis. Also, research has shown that people are diagnosed in the later stages of the disease and that timely diagnosis remains the exception, rather than the rule.

However, those countries which have adopted national dementia strategies all have identified timely diagnosis as a key priority area. Awareness campaigns therefore need to target the general population to identify the first symptoms and general practitioners to ensure they either diagnose or refer to specialists.

In addition, timely diagnosis was the focus of ALCOVE, the first Joint Action on Dementia which resulted in recommendations which should be taken up by health ministries. The new Joint Action on Dementia (2016-2018) coordinated by the Scottish Government is looking to build on these recommendations to further promote models for timely diagnosis.

Similarly, a number of EU-funded projects focus on developing new diagnostic methods or in comparing diagnostic strategies. Alzheimer Europe is delighted to be a partner in a new IMI-funded project entitled “MOPEAD – Models for Patient engagement in Alzheimer’s disease” which will compare different approaches to identify which strategies lead to earlier identification and diagnosis.

We fully support the campaign for a timely diagnosis of Alzheimer’s disease and dementia, but we stress that timely diagnosis should always be accompanied by the adequate post-diagnostic support (information on the local or national Alzheimer’s association, access to treatment and psychosocial interventions, peer support, advance care planning and advance directives, possibility to participate in research and clinical trials).