Helsinki, 18 October 2023 – Today was the third and final day of the 33rd Alzheimer Europe Conference (#33AEC) “New opportunities in dementia care, policy and research”. The plenary sessions for this final day were “New opportunities” and a policy round table on “Dementia as a European public health and policy priority”.
Plenary four opened the conference programme on this final day, and comprised four presentations revolving around the theme “New opportunities”.
Nicolas Villain, Associate Professor of Neurology at Sorbonne University, Paris, France and at the Institute of Memory and Alzheimer's Disease, Department of Neurology, Pitié-Salpêtrière Hospital, Assistance Publique – Hôpitaux de Paris, opened the plenary with a presentation looking at “How to evaluate the efficacy and safety of anti-amyloid treatments as a researcher, a clinician or patient”. Anti-amyloid therapies have shown efficacy in the early stages of Alzheimer's disease. However, serious side effects are a potential concern that cannot be overlooked, he stressed, also noting that the complexity of their implementation in the healthcare system can affect their accessibility as a treatment option.
Dr Villain stated that, when assessing drug efficacy, “it is essential to consider the perspectives of various stakeholders”. This is because while minimal benefits may be meaningful for some individuals, a quantitative evaluation of drug efficacy that takes into account the complete disease course is necessary “to provide a global perspective and balance the risks”. He also stressed the importance, in the future, of clinical trials aiming to better capture the potential efficacy and risks according to the overall disease course. Additionally, he emphasised that such trials should take into account the complexity of implementing the treatment within the healthcare system, to help ensure it can be an accessible treatment option.
Summing up, he said:
“Anti-amyloid therapies hold promise for Alzheimer's treatment, but they are not a cure-all. A fair and quantitative evaluation of their risks and benefits, not just statistical significance, is crucial to assess their value.”
Ukrika Granér, Silvia Nurse, MSc Specialist Nursing – Elderly Care and Cognitive Impairment Care, Stiftelsen Silviahemmet, shared her presentation with the audience next, focusing on “Vision zero: A Swedish model for dementia care without restraint”. Despite current legislation and declaration of human rights, restraint in dementia care is still common, she said, which both violates self-determination and causes reduced quality of life for people living with dementia:
”Reflection on the use of restraint in dementia care and working with person-centred methods are basic prerequisites for safeguarding the human rights of people living with dementia”, she commented.
Her presentation demonstrated that working with a person-centred approach, to prevent the use of restraint, is possible, as long as the care team in question has the knowledge, structured tools and clear leadership that is absolutely vital for success. She particularly emphasised the importance of strong leadership in this area.
The third speaker up to the podium was neurologist Eino Solje, Adjunct Professor and research director at the University of Eastern Finland and at the Brain Research Unit and Kuopio University Hospital Neuro Center. He made the point that accurate diagnosis of both dementia with lewy bodies (DLB) and frontotemporal dementia (FTD) is essential, to ensure the correct disease management is attributed to the right patient, stressing the important differences that exist in the management of common neurodegenerative diseases. “The role of the correct diagnosis will become even more pronounced in the future, when disease modifying, biology-specific medications become available”, he finished.
Professor Martin Orrell, Director of the Institute of Mental Health at the University of Nottingham United Kingdom, was the fourth and final speaker in Plenary 4. His talk revolved around ways to improve the lives of people with dementia through the use of technology. Technology can help people living with dementia to maintain their independence and autonomy, he noted, but said that it was not always clear what technology was needed or what works well. This is due to a poor understanding of how people with dementia use technology in everyday life, he said, and new applications are designed without an in-depth appreciation of people’s needs, preferences, and difficulties.
In closing, he highlighted that international consensus good practice guidelines could enable researchers and developers to design better technology to help improve lives for people with dementia: “Designing better technology based on the needs and preferences of people with dementia can help them feel more confident managing at home and maintain their independence for longer”.
Afterwards, attendees were invited to take their coffee break as an opportunity to view the many and varied poster presentations exhibited in the conference centre. They then had the choice of eight parallel sessions, followed by a session for Quick Oral Presentations (QOP) before the lunch break. At the same time as the QOP session, two special symposia were held, one by Gates Ventures, on “New discoveries from shared data” and one by Lilly, exploring “Optimizing Alzheimer’s disease Health Care Pathways today: best practices in action”.
The afternoon programme began with another opportunity for delegates to choose from a further seven parallel sessions, after which the final plenary took place.
Dementia as a European public health and policy priority
The fifth and final plenary session at the conference, took the form of a roundtable discussion. To open the session, Dr Natasha Azzopardi Muscat, Director of the Division of Country Health Polices and Systems at the WHO Regional Office for Europe, addressed delegates on behalf of Hans Kluge, WHO Regional Director for Europe, in a video message. She welcomed everyone to the policy round table on “Dementia as a European public health and policy priority” and noted the growing numbers of people with dementia in the European region, with approximately 10 million people in European region and numbers set to almost double by 2050, to around 18 million.
The WHO is working with partners around world, implementing the Global action plan on the public health response to dementia 2017-2025 and has a number of tools and resources to support countries in achieving the 2025 targets therein. But, Dr Azzopardi Muscat noted, “we are in danger of falling short of the targets if we don’t step up our work together and push for change across some key areas”. She mentioned five key areas in which more needs to be done:
1. Ensuring that all countries have dementia policies with plans, with appropriate resources and investment, so that they reach the people who need them most.
2. We need to set up strong health and long-term care systems to provide universal access to diagnosis, treatment and care.
3. Expanding age-friendly environments to be dementia inclusive, will be key to make sure that people can connect with the communities and thrive.
4. We need to improve countries’ capacity to maintain health information systems.
5. Finally and crucially, we really need to increase investment in dementia prevention.
Despite these areas of improvement, she noted and celebrated recent scientific breakthroughs and commented that technological advances also provide some promising avenues to improve the health and wellbeing of individuals with dementia and their caregivers through early detection, personalised treatment plans, medication reminders, safety monitoring, remote person monitoring and online peer support forums.
In closing, she reminded delegates:
“We have a collective responsibility to build a society that is inclusive for all, including people living with dementia and their families. As we redouble our efforts to realise the goals set forth in the Global Action Plan on Dementia by 2025, let us draw inspiration from the Finnish concept of 'sisu' or tenacity.”
You can watch the video, here: https://youtu.be/ZiOIdzo90YA
Roundtable panellists were: Andy Heffernan, Chief Executive, The Alzheimer Society of Ireland; Taru Koivisto, Deputy Director General, Department for Communities and Functional Capacity, Ministry of Social Affairs and Health, Finland; Sonata Mačiulskytė, Chairperson of the European Dementia Carers Working Group (EDCWG) and Board member of Dementia Lithuania; Anne Remes, Vice-Rector and Professor of Neurology at the University of Helsinki, Finland; Chris Roberts, Chairperson of the European Working Group of People with Dementia (EWGPWD) and Elina Suzuki, Health Policy Analyst, Organisation for Economic Co-operation and Development (OECD).
Participating in the discussions, Andy Heffernan noted that Ireland is approaching 10 years since the inception of its National Dementia Strategy, with philanthropy being very much the catalyst initially. The strategy included 35 actions and a review on its 10th anniversary in 2024 is timely, he said. He also highlighted that significant Government funding and supports in recent years have been supported by the Department of Health, The Health Service Executive and a very interested and committed Minister. The launch of the Model of Care for Dementia in Ireland, in June of this year, has the potential to be a ‘game changer’, as it sets out a range of targets and advice on assessment, diagnosis (and communication of diagnosis), treatment, care and supports. Finally, he noted that the Assisted Decision Making capacity Act commenced in April 2023, having being legislated for as far as back as 2015. It moves away from a ‘best interest’ approach towards that of graduated supports.
Taru Koivisto emphasised that “good brain health should be promoted in all stages of life - prevention of memory disorders can be improved. We need an active and visible debate on the memory disorders, with the voice of older people at the centre. A whole-of-society approach is necessary, as the population’s ageing will affect all sectors of society.”
Sonata Mačiulskytė stated that people often tend to shift the responsibility for delayed or misdiagnosis of dementia on to the professionals and to blame shortcomings of diagnostic practices, while less consideration is given to the lack of brain health awareness among the general public, which continues to allow stigma to thrive. “The level of dementia awareness varies between countries with and without national dementia plans, but it is still insufficient everywhere”, she said. Regarding the situation in timely dementia diagnosis, she pointed out the inequalities in health services access across and within countries, saying “we are used to focus on the development of diagnostic infrastructure, leaving the gatekeeper – primary health – behind our field of vision. We should maintain an equal focus on the preparation of GPs and their teams to play a leading role in timely diagnosis.” She also stressed that European governments shift the burden of ageing and long-term care onto the community and onto families, but don’t think about the long-term economic consequences for the labour market and the impact on the national GDP. Real support, she said, tends to come from the NGO sector, but it is not sufficiently developed and supported by the state in all countries.
Anne Remes felt that memory disorders should be included in national health-related strategies, either as separate programmes (memory programmes) or integrated into broader public health promotion efforts. However, she said, “mere strategic discourse is not sufficient; practical measures and adequate financial resources are needed.” More investment is also needed in research and in “actions are required to make the field of memory disorders and dementia attractive to researchers, clinicians, and healthcare personnel”, she commented.
Panellist, Chris Roberts commented that, from his perspective, “everything is changing but nothing is changing regarding dementia; We need to do more!”. With one in three people affected by dementia, he pointed out that nobody is safe and that we need to work together to solve this. On the topic of making dementia a public health priority, he stated “dementia ‘IS’ a European public health and policy priority!” and reminded those present that “we have a right to quality care and services, don’t leave us behind!”
Hyvästi Helsinki, Hallo Genf!
The closing ceremony of the conference included a presentation by the winner of the Anti-Stigma Award. Congratulations again to the winning initiative, Touchstone’s BME Dementia Service, represented by Ripaljeet Kaur.
Closing comments were then made by Anne Remes, in her capacity as President of the Union Council of The Alzheimer Society of Finland (Muistiliitto) and Rosário Zincke dos Reis, Chairperson of Alzheimer Europe, who then invited Stefanie Becker, Executive Director of Alzheimer Switzerland up to the stage and share her excitement that the 34th Alzheimer Europe Conference will be held in Geneva, from 8-10 October 2024. Save the dates!
Alzheimer Europe would like to thank to all delegates who joined us at #33AEC, and we hope to see you next year for #34AEC in Geneva!
Alzheimer Europe gratefully acknowledges the support of all conference sponsors, with particular thanks to our Gold sponsors, Lilly and Roche and Bronze sponsors, BioArctic, Eisai, MSD and Prothena.