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December 2013: "Comparing and benchmarking national dementia policies"

Alliance activities

Joseph Cuschieri, MEP (Malta) and member of the European Alzheimer’s Alliance, hosted an Alzheimer Europe lunch debate that was dedicated to a presentation of the “European Dementia Monitor”.

Joseph Cuschieri welcomed all 40 participants – including fellow MEPs Anneli Jäätteenmäki (Finland) and Marina Yannakoudakis (UK) – to this debate. Delighted to be hosting this event, he explained that his being a member of the European Alzheimer’s Alliance is an important part of his work. Dementia is a challenge for all EU Member States: over seven million Europeans live with dementia and there are some 21 million informal carers. The cost of formal and informal care per patient per year is estimated to be EUR 21,000. The impact of this complex disease is vast and with no known cure, ways at delaying the onset and improving the quality of life of people with dementia need to be pursued.

It is imperative to address both the stigma associated with the disease and the fact that the treatment and care of people with dementia differs between EU Member States. All have a part to play: citizens need to be informed and aware while EU institutions and national governments need to collaborate. Policy makers and practioners need to be informed and enlightened and the lunch debate would help to do this. European Dementia Monitor Jean Georges (Executive Director, Alzheimer Europe) thanked Joseph for his support. He explained that the aim of European Dementia Monitor (EDM) is to benchmark national dementia policies which will help lobbyists to compare, on a regular basis, various issues for people with dementia both at EU and national levels.

The EDM offered an exciting new way to work as Alzheimer Europe and national Alzheimer associations had collaborated alongside pharmaceutical companies. Jean acknowledged the general support of GE Healthcare, GlaxoSmithKline, Janssen, Lilly, Nutricia, Pfizer and Sanofi and particular support in data provision by Lundbeck, Merz and Piramal. The EDM is based on data from existing, well established and trust-worthy sources. Comparable data is a challenge and, to overcome this, the EDM is based on a simple point system which will enable the results to be presented in a simple and clear table.

Prevalence

By applying the EuroCoDe prevalence rates to the 2012 UN population statistics, it is possible to estimate the number of people living with dementia in the EU at 8.7 million. However if non-EU Alzheimer Europe members (Iceland, Monaco, Norway, Turkey and Switzerland) are also included, the figure would be 9.2 million. This calculation could be used as a benchmark figure when considering other issues. Considerable differences are found when comparing prevalence of people with dementia as a percentage of the population between countries. Overall it ranges from between 0.44% (TR) to 2.09% (IT). Amongst others, Turkey has a young population which will impact on this figure.

Diagnosis

Although the vast majority of countries were found to have diagnostic guidelines in place, several countries did not (CY, EE, IE, IT, JE, LU, MT, MC, PT, CH and TR). Some countries have put in place specific incentives to encourage GPs to diagnose dementia (DK, FR, NL, UK (Eng and Scot)). On the other hand, two countries (IT and RO) make it impossible for GPs to take an active role in diagnosis. A key element of the diagnostic infrastructure is the ability to offer access to an MRI scan. Again, a wide range of results reached from two MRI machines per 10,000 people with dementia (HU) to 23 (TR). In the future, amyloid imaging could be more widely used in the diagnostic process and this will require PET machines. Data from the WHO Health Resources Database was applied which showed variations from zero (CY, IS) to 3.6 (DK). This would suggest that, should we want to change the way in which diagnosis is done, there are real challenges ahead in terms of the existing diagnostic infrastructure.

Availability and reimbursement of medication and nutrition

Alzheimer’s disease medicines (donepezil, rivastigmine, galantamine and memantine) as well as the existence of a strategy to reduce the use of antipsychotics were considered. Three countries (JE, SE and UK) offer all four drugs with full reimbursement and have a strategy in place to reduce the use of antipsychotics. Other countries varied with regard to which drug could be reimbursed and whether antipsychotics were being targeted via a strategy. A relatively new area of treatment is that of medical nutrition and the availability of the nutritional drink “Souvenaid” was considered. Cost issues aside, it was found that Souvenaid was available in seven countries (BE, DE, IE, IT, NL, ES and UK).

Clinical trials

Jean highlighted five big clinical trials (AE58054, gantenerumab, MK-8931, solanezumab and TRx0237) which are currently being carried out across the EU. In order to ascertain whether people with dementia in the EU have access to these, the website www.clinicaltrials.gov was accessed. Unfortunately, for over half of the countries it was not possible for people with dementia to access any of these trials. Of the other 14 countries where clinical trials were active, only one offered access to all five (ES) and three countries (DK, PT and CH) offered access to just one.

Care services availability

Alzheimer Europe identified those care services which should be made available in all EU countries and asked national associations to indicate whether each service was sufficiently available for people with dementia in their country. In some countries these vital services were either not available or not in sufficient numbers to really benefit people with Alzheimer’s disease (BG, PL, PT, RO and TR) whereas in others the reverse was true (MC). Whilst it could be argued that smaller countries may find it easier to organise such services, the analysis revealed that some larger countries (AT, BE, DK and FI) were also able to do so.

Dementia strategies

A priority of Alzheimer Europe has been the call for national dementia strategies. The analysis revealed a geographical division in this area. In 2006 only France had a strategy in place whereas in 2013, the majority of northern and central European countries have developed, or are in the process of developing, a strategy. This situation contrasts starkly with that in much of Eastern Europe, where there appears to be no interest, commitment or even indication that the governments support such a strategy.

Dementia research and funding

Countries’ approaches to dementia research were found to be highly variable throughout the EU. Members of Alzheimer Europe supported dementia research to the tune of EUR 12.6 m. Three countries (DE, FI and UK) were able to provide the contribution their government dedicated to dementia research (which amounted to EUR 140 m for the three countries) but on the whole it was difficult to ascertain the individual amount given by Member States. This was due to the fact that the research was fragmented and across different budgets.

Legal issues

Variations were also evident in each country’s approach to legal issues. Alzheimer Europe advocates the use of advance directives, the possibility of appointing a person as financial and health care proxy and it supports a person with dementia’s right to vote, rather than being perceived as a ‘noncitizen’. Four countries (AT, FI, NL and UK [E & S]) complied with these recommendations but at the other end of the spectrum six countries (CZ, LT, MT, NO, PT and TR) only complied with one recommendation. International and EU conventions There are six conventions which Alzheimer Europe believes should be signed and ratified. Slovenia had ratified the most (five), many had ratified four or more (CY, EST, GR, FR, HU, LU, SI and UK [E & S]). Again, there were huge differences in approaches to this by Member States and two countries had ratified only two or less (IE and MC).

Size and budgets of Alzheimer associations

Members of Alzheimer Europe make an enormous contribution which should be recognised. Currently, membership consists of 36 national Alzheimer associations from 32 countries across Europe. Employing over 3,800 staff, the associations total expenditure amounted to some EUR 190 m in 2012. Jean stressed that we should all be very proud of the work that they carry out and fully support them: indeed, this was an area which needs to be looked at in more detail, especially with respect to governmental support. The size of the associations varies hugely from country to country. A figure representing the amount of money per person with dementia was calculated for each country which revealed that it was not necessarily those with the largest budget which had the highest allocation per person with dementia, as this title went to Luxembourg with EUR 2,528 spent by the association per person with dementia.

Conclusions

Jean explained that it was necessary to use the data with caution as it is in its very raw quantitative (not qualitative) form and it should be noted that there were many questions which could not be answered on a comparative basis. Elisabeth Calov and Marina Yannakoudakis concurred, suggesting a cautious approach when interpreting the data. In addition, even if some data appears very positive, it might hide a negative situation. Nevertheless, the results so far have revealed that there are a wide range of differences between European countries on each issue examined and this is useful as shortcomings can be identified. This will be a priority for Alzheimer Europe in 2014. It is also envisaged that the findings will be published in a scientific journal by the end of 2014.

Jean also emphasised the enormous role that the European Alzheimer’s Alliance has played in lobbying for change for people with dementia. He called on MEPs to indicate their continued support by signing the European dementia pledge which confirms their willingness to become members of the EAA after the European elections and to make themselves available to people with dementia in their own country.

Marina asked Jean to what extent the differences in the statistics were due to the fact that Alzheimer associations varied in their abilities and scope to influence the agenda. Jean acknowledged that there is a real connection between the awareness of dementia in a country and how effective an association has been. He also called on politicians to come together with the associations in order to make a real difference to the lives of people with dementia.

Heike von Lützau-Hohlbein, Chairperson, Alzheimer Europe thanked Joseph and Jean for the debate. She emphasised the need to share the work of Alzheimer Europe, learn from each other and highlight differences across Europe.

 

 
 

Last Updated: Monday 15 September 2014

 

 
 

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