Alzheimer Europe’s Policy Officer, Owen Miller, speaks with SciTech Europa about Alzheimer’s disease and what has changed since we spoke with them.
Back in November 2018, we spoke to Alzheimer Europe’s Jean Georges and Owen Miller about their case for a co-ordinated approach to dementia in Europe, following the European Commission’s decision to disband the Expert Group on Dementia.mSince then, things have progressed and SciTech Europa spoke with Miller again, regarding Alzheimer’s disease’s relationship with the European political landscape, as well as what has changed since we last spoke towards the end of 2018.
How would you describe the way Alzheimer’s disease is being included in the political landscape as a policy priority at the European level?
Overall, Alzheimer’s disease and dementia strategy is making progress and has progressed considerably in comparison to five years ago. Our recent Dementia in Europe Yearbook 2018 provided a comparison of dementia strategies across Europe, providing an overview of the position of dementia strategies in the countries which had them (or an equivalent neurodegenerative strategy) and the areas of focus which have been prioritised.
Whilst around half of European countries have some form of strategy, our members tell us that issues such as implementation and a lack of dedicated funding, mean that although policy has progressed, the required shift in services and supports for people living with the condition has not necessarily occurred. Acknowledging dementia as a policy priority is undoubtedly important, however, we now need to see governments follow-up with dedicated resource to realise fundamental shifts to the way in which care, services and supports are delivered.
At a European level, the picture is equally mixed. The Horizon 2020 research programme has been a positive area where research projects that are focused on, or include, dementia and Alzheimer’s disease received considerable investment, including the European Prevention of Alzheimer’s Disease (EPAD) and Amyloid imaging to Prevent Alzheimer’s Disease (AMYPAD) projects. Additionally, the second Joint Action on Dementia, funded through the EU’s Health Programme, has been an area where countries have worked together to exchange knowledge, information and best-practices across a number of areas of day to day life.
However, we are now beginning to see EU policy shift away from disease-specific policies towards broader ‘catch-all’ health approaches (e.g. the disbanding of all disease-specific expert groups, including dementia, which were replaced by a Steering Group on Health Promotion, Disease Prevention and Management of Non-Communicable Diseases). Whilst understanding the wish to address areas of commonality between disease areas, there is a risk that doing so will overlook the unique challenges and experiences of people living with dementia.
In your previous article, you said that you were “disappointed there has been no significant progress towards the development of a strategy for dementia in Europe”. Is this still the case, and can you see potential for this developing?
Alzheimer Europe continues to believe a European Dementia Strategy, supported through dedicated resources and measurement, would be the most effective way to deliver a co-ordinated approach to dementia across all European countries. However, in light of the EU’s shift in approach, we believe that the development of such a strategy is increasingly unlikely.
We must therefore look at other ways of achieving the intended outcomes of such a strategy. One approach could be to produce a roadmap or strategic document setting out how the EU will support Member States meet objectives set out in the World Health Organisation’s (WHO) Global Action Plan on Dementia (2017-2025).
Another possibility would be to have a dedicated research mission area or mission within the forthcoming Horizon Europe (2021-2027) research programme. From some of the public statements from the Research Commissioner during the development of the programme and prior to the agreement between the Parliament and the Council, hopes had been raised that a dedicated research mission, or mission area, might be included for Alzheimer’s disease or dementia. Disappointingly, this did not occur. However, it appears that there will be opportunities in future to influence these, and as an organisation, we will look to ensure that dementia will be included as a priority.
Last time we spoke, there were indications from the European Commission that there would be a modest increase in spending in the health budget. Has this been realised?
The discussions on the place of health within the budget of the European Union, the Multi-annual Financial Framework (MFF), are ongoing and are not expected to conclude until the end of the year. Since the publication of the previous article, there has been no significant shift in the budget negotiations which suggest that health spending will substantially increase.
As things stand, Health spending would be subsumed into the European Social Fund Plus (ESF+), with a move towards ‘health in all policies’. There is a danger that such an approach diminishes the place of health (and as a consequence, dementia) as a European priority or becomes a minor ‘add-on’.
As such, we have actively supported ‘EU4Health’, an ongoing campaign of health and patient organisations which seeks to ensure that health remains a priority within the policies and budget of the EU. The campaign focuses around seven key areas, including ensuring there continues to be a dedicated Commissioner for health, development of a framework to tackle non communicable diseases and empowerment of citizens and patients.
Ideally, we would like to see specific funding for dementia policy and research. Given the demonstrable success of programmes such as the second Joint Action on Dementia (which has worked towards the sharing of best practice across diagnosis, community care, care homes, and dementia-friendly communities), we believe that such an approach should be continued.
How is Alzheimer Europe’s 2019 work plan developing and what are your hopes for this moving forwards?
Our work plan for 2019 continues to make good progress, in what is an incredibly busy year for us, with some new exciting areas of work underway. We are currently undertaking a campaign in the run up to the European Parliament elections asking candidates to sign up to our #DementiaPledge2019.
The pledge asks candidates to commit to three actions: joining our European Alzheimer Alliance (a cross-party grouping of MEPs who support our objectives), supporting a number of dementia-specific policy objectives and a commitment to become a ‘Dementia Friend’ within their country.
We are excited to be working with partners on a newly launched three-year project ‘NEURONET’, a new collaborative pan-European co-ordination and support initiative for the Innovative Medicines Initiative (IMI) projects within the Neurodegenerative Disorders (ND) portfolio. NEURONET aims to establish a platform that will facilitate communication across among current and future IMI ND projects, mapping of ND actions, initiatives and partnerships (including impact analysis of the individual projects) and identification of project best practices and providing the tools for transferability of best practices across the ND portfolio.
Aside from the policy challenges already outlined, there are also challenges in relation to dementia research, including a high attrition rate in drug development for dementia. Recently we saw an example of this, where Biogen and Eisai discontinued two phase-three clinical trials investigating the promising drug ‘aducanumab’. Such setbacks are naturally disappointing for all, however, it is therefore incumbent upon us to ensure that we reiterate the importance of further research and work across all disciplines, to ensure that research continues.
What does the future hold for Alzheimer Europe?
For Alzheimer Europe, our work will continue to focus on ensuring that dementia remains a European priority and that the voice of people with dementia is heard. Once the elections have concluded, we will work to ensure that all MEPs, as well as newly-appointed Commissioners are fully aware of the challenges experienced by people with dementia, their families and carers. We will work to ensure that all relevant policies and legislation reflect the needs, wishes and aspirations of people living with the condition, encouraging decision makers to use their position to deliver on these.
As always, Alzheimer Europe will continue to work with partners in academia and industry on research projects which contribute towards improving our understanding of the conditions, as well as improving clinical practice and care.
As an umbrella organisation, we will also continue to support our members to ensure that policy at a European-level is informed by the experiences at a national level, whilst ensuring that our members are aware of the more recent and relevant developments likely to affect people with dementia, their families and carers in their countries.