Alzheimer Europe welcomed attendees to its lunch debate on 5 December 2023 in Brussels, Belgium, hosted by Vice-Chair of the European Alzheimer’s Alliance (EAA), Deirdre Clune MEP (Ireland). During the session, Alzheimer Europe launched its European Dementia Monitor and shared key messages for its forthcoming election campaign. Ms Clune opened the session by noting that these events were a welcome opportunity to bring together stakeholders from across civil society, industry, governments, academia and people with lived experience to share knowledge, experiences and information. She further expressed her view that coming together from different countries and backgrounds was essential to ensure that dementia remains a political priority. She welcomed the work on the Dementia Monitor 2023, explaining that benchmarking the situation in countries across Europe allowed for the identification of the gaps in policies and services within countries, whilst also identifying trends across Europe. Ms Clune stressed the need to better coordinate efforts at a European level to better utilise the knowledge and resources from different levels, to drive improvements in policy and practice.
European Dementia Monitor
Alzheimer Europe Chief Executive, Jean Georges, opened by introducing the objectives of the European Dementia Monitor, explaining that it was intended to provide a benchmark of national dementia policies in order to compare and rank European countries in relation to dementia policies and practice. The survey covered all Member States of the European Union (with the exception of Latvia), as well as Armenia, Iceland, Israel, Jersey, North Macedonia, Norway, Serbia, Switzerland, Turkey, United Kingdom (both England and Scotland) and Ukraine. He further highlighted that the European Dementia Monitor compares countries on 10 different categories:
• The availability of care services
• The affordability of care services
• The reimbursement of medicines and other medical interventions
• The availability of clinical trials
• The involvement of the country in European dementia research initiatives
• The recognition of dementia as a policy and research priority
• The development of dementia-friendly initiatives
• The recognition of legal rights
• The ratification of International and European human rights treaties
• Care and employment rights.
He explained the ranking system for each segment of the Dementia Monitor, as well as highlighting some of the emerging themes and trends across Europe. Some of the key findings presented included:
• Luxembourg scored highest on care availability with most services rated as sufficiently available, whereas Norway scored highest on care affordability as it ensured that these services were accessible and affordable for people with dementia and their carers. On both care availability and care affordability, Bulgaria ranked last.
• On the availability and reimbursement of medical interventions, Sweden scored highest as all included medical interventions (with the exception of Fortasyn Connect) were covered by the national reimbursement system. Armenia ranked last in this category as none of the medical interventions were reimbursed.
• As Europe is waiting for the authorisation by the European Medicines Agency of new anti-amyloid treatments for Alzheimer’s disease, only Greece, Ireland, Slovakia, Sweden and the United Kingdom (England) had set up a working group or strategy to prepare for the introduction of these new treatments.
• France scored highest in the category of clinical trials as the only country where it was possible for people with dementia to take part in eight of the 10 phase III clinical trials which were studied for the report.
• France, Germany and the Netherlands were the countries that were the most active in European dementia research collaborations scoring 100% in that category.
• For recognition of dementia as a national policy and research priority, the United Kingdom (Scotland) came first with full marks whereas North Macedonia, Serbia and Ukraine did not score any points in this category.
• The United Kingdom (England and Scotland) had the most dementia-inclusive initiatives and communities, but Luxembourg, North Macedonia, Portugal and Serbia did not score any points in this category.
• The Czech Republic, the Netherlands and the United Kingdom (Scotland) were the three countries where all care and employment rights were recognised, whereas Armenia, Cyprus and Ukraine came last in this category with none of these rights recognised in legislation.
• In the overall ranking of countries, the Netherlands, UK – Scotland and the Czech Republic came first, second and third respectively.
Panel discussion
Following Jean’s presentation, attendees heard the thoughts and reactions from a panel comprised of people with lived experience of dementia and professionals working in the health field:
• Chair of the European Working Group of People with Dementia – Chris Roberts
• Chair of the European Dementia Carers Working Group – Sonata Mačiulskytė
• Executive Director of European Patients’ Forum – Anca Toma
• Senior policy advisor international affairs and dementia research, Netherlands Government – Abida Durrani.
Chris stated that the report was excellent resource and commended Alzheimer Europe on its work, welcoming that progress had been made in a number of areas. He noted that financing and resources was a key barrier to action and progress in a number of areas. Additionally, he expressed surprise that so many countries do not recognise dementia as a disability, as well as the lack of training and support for informal carers, despite them being key to supporting people with dementia. He also expressed disappointment that so many countries were failing to take action on the misuse of anti-psychotic medications, particularly given the potential harm that such drugs have for people with dementia.
Sonata also welcomed the report, noting it was a useful exercise to compare and benchmark progress, especially for neighbouring countries, noting that the Baltic countries often compared their situation. She noted that it was helpful to have the “big picture” across Europe and to see the inconsistent progress across Europe – she highlighted that the presence of a dementia strategy wasn’t necessarily a guarantee of progress in all areas. She expressed her surprise at the lack of dementia-inclusive initiatives in so many countries, whilst also highlighting that availability and affordability of care services were crucial to the quality of life of individuals.
Anca shared that from her personal perspective, it was disappointing to see Romania ranked so lowly in many categories, reflecting on her own experience, with her mother caring for her grandmother who has Alzheimer’s. She noted that it was surprising to see so many countries not having ratified human rights treaties and that that the EU needed to take further actions to embed basic rights-based approaches across Europe. She further noted that despite conversations about ageing demographics and about preparations for the future, there was still a lack of services and supports for people with dementia and carers now. However, she welcomed that the situation was improved compared to three years ago.
Abida expressed that she was pleased to see the Netherlands do well in many areas but that there was work still to do. She shared some of the activities ongoing in the Netherlands, including the 2021-2030 Dementia Strategy, which focuses on research and anti-stigma, as well as care and support, and assistive technologies. She further noted that the set up of the health and care systems and relevant legislation, was a key factor in ensuring people’s needs were covered – in the Netherlands there are three complementary pieces of legislation which ensure that everyone’s needs are covered. However, she also noted that as societies age, ensuring access to care will become more difficult and that as such, preventative approaches were becoming more important as well.
Alzheimer Europe election campaign 2024
Alzheimer Europe Policy Officer, Owen Miller, presented on the organisation’s plans for the 2024 European Parliament elections. He provided a brief overview of Alzheimer Europe’s previous campaigning activities, including the Paris Declaration 2006 and the Glasgow Declaration 2014, as well as the European Parliament election campaigns of 2014 and 2019. Setting out Alzheimer Europe’s approach to the election, he outlined the key messages of the campaign, which would highlight the increasing prevalence and cost of dementia across Europe, the need for greater focus on dementia within health and research programmes, the need for dementia to be recognised as a disability and the need for greater support for informal caregivers. He further explained that the campaign would have three distinct elements:
• The Helsinki Manifesto – a document outlining specific demands of the European Commission and national governments, which will be the basis of Alzheimer Europe’s public affairs work in the coming years.
• A public Call to Action – a short statement highlighting the key figures associated with dementia cost and prevalence, to which members of the public will be invited to sign up to demand that European decision makers prioritise dementia as a priority issue.
• The Dementia Pledge 2024 – a short commitment to which candidates standing for the European Parliament elections will be invited to sign, pledging their support, following their election, for dementia in the areas of health, research, disability policy and informal carers. The campaign will begin officially launch in January 2024.
Closing remarks
Alzheimer Europe Chair, Maria do Rosário Zincke Dos Reis, closed the session, thanking the attendees for their participation and the panel members for sharing their reactions to the Dementia Monitor, noting that the report had highlighted the inequities for the diagnosis and treatment of dementia across Europe. She further noted the importance of all associations taking part in the European election campaign to convince decision makers to prioritise dementia as a policy issue. The videos of the presentations from the lunch debate can be watched here:
https://www.youtube.com/playlist?list=PLO-PgQHI1WQVfFRfuNGYkClui9b4xQBtQ
