Geneva 10 October 2024 – The second day of the 34th Alzheimer Europe Conference (#34AEC) “New horizons – Innovating for dementia” took place yesterday, 9 October 2024, with the programme focusing on making dementia a priority and on innovation in dementia care.
Making dementia a priority
The second plenary of the conference was on “Making dementia a priority” and was moderated by Charles Scerri (Malta). Margit Jochum Christin was the first speaker. Responsible for the specialist area “dementia” and co-responsible for the Coordination Centre of the National Dementia Platform at the Federal Office of Public Health, Switzerland, she gave a talk on dementia in Swiss health care policy. She highlighted that the Swiss National Dementia Platform brings together almost 90 stakeholder organisations and is dedicated to ensuring a healthcare system that provides appropriate support, care and treatment for all people with dementia and their relatives.
Up next, Katrin Seeher discussed key achievements of the World Health Organization (WHO)’s Global Action Plan on Dementia. Katrin Seeher, from the WHO’s Brain Health unit stated that the current round of Global Dementia Observatory (GDO) data collection indicates that none of the global targets of the Global action plan on the public health response to dementia (2017-2025) will be achieved by 2025. “To continue building on recent scientific advances and momentum created by the adoption of the Global dementia action plan in 2017, we need renewed global commitment to implement the actions outlined in the global action plan and realize its vision”, she urged. She also noted that the Pan-European Mental Health Coalition provides an important mechanism to scale up action across the region.
The third speaker was Alex Gobey, Director of the Dementia Care Directorate in Malta. His presentation focused on the National Dementia Strategy for the Maltese Islands 2024 – 2031, titled ‘Reaching New Heights’, which was launched on 21 February 2024. It builds on the first national strategy, which ran between 2015 and 2023. This strategy aims to improve the quality of services and the quality of life for people living with this condition in the Maltese Islands and was produced after extensive research and work carried out by an expert stakeholder committee, after which the policy was submitted for public consultation. “This new strategy”, he stressed, “aims to make significant advances in dementia prevention, diagnosis, treatment, and care by implementing the latest developments in the field."
The fourth and final speaker at this session was Giovanni Frisoni, Clinical neurologist, full professor of Clinical Neurosciences at the University of Geneva, Switzerland, and director of the Memory Center at Geneva University Hospital. He delivered a presentation about the Swiss Brain Health Plan (SBHP), which, he highlighted, “was conceptualised to value, promote, and protect brain health over the entire life course.” The five strategic objectives of the SBHP, are: to raise awareness; to strengthen cross-disciplinary and interprofessional training programmes for healthcare professionals; to foster research on brain health determinants and individualised prevention of brain disorders; to prioritise a holistic, integrated and person-centred public health approach to promoting brain health and preventing brain disorders; and to support, empower, and engage patients, caregivers, and patient organisations, helping to reduce stigma and discrimination.
After the plenary, delegates were able to view poster presentations, exhibited in the CICG foyer area, and to speak to poster presenters about their research.
Parallel sessions and special symposia
Nine parallel sessions followed, including an INTERDEM session on “Advances in social health, brain health and methodological research of psychosocial interventions in dementia care”, and a session exploring the lived experience of dementia among members of the LGBTQ+ community. This session was chaired by Paddy Crosbie (Ireland), who is a member of the European Dementia Carers Working Group (EDCWG). There was also a session showcasing a series of quick oral presentations on the topic of Artificial intelligence and technology, as well as one about physical activity and dementia, organised by the Synapsis Foundation, at the invitation of our conference co-host Alzheimer Switzerland.
After a short break, four further sessions took place simultaneously. Three of these were special symposia, one of which was on “Preparing for new AD treatments”, organised by Alzheimer Europe and supported by the gold sponsorship from Lilly. Another was called “Enhancing impact: bridging dementia research and practice” and was organised by Dutch project DEMPACT, whilst the third was a session for young researchers, titled “Dementia researchers of the future”, organised by the Alzheimer Europe Foundation and the INTERDEM Academy, thanks to the support of the silver sponsorship of Biogen. The other session taking place in tandem was another opportunity for attendees to view quick oral presentations, this time on the theme of minority ethnic groups.
After a lunch break, nine further parallel sessions were held, including one called “Empowerment and self-management”, chaired by Sonata Mačiulskytė, Vice-Chairperson of the EDCWG, while Trevor Salomon, Chairperson of the EDCWG, moderated a series of quick oral presentations in a session called “People with dementia”. Another parallel session was organised by INTERDEM, which delivered “An intersectional perspective on dementia care research: Understanding and reducing inequities”.
Meanwhile, Silver sponsor TERUMO Blood and Cell Technologies held a session discussing “Innovative approaches in Alzheimer’s disease: real-world safety and efficacy of therapeutic plasma exchange with albumin replacement”, and Alzheimer Switzerland and Swiss Memory Clinics hosted a session titled “Preparing for new horizons: best practices in Switzerland”.
At the end of the second day of #34AEC, two further symposia were organised, one of which was supported by Gates Ventures and focused on “European platforms advancing dementia detection, diagnosis and care”, while another was organised by the Fondation Médéric Alzheimer. Meanwhile, public involvement in research was the theme of another series of quick oral presentations.
Preparing for new AD treatments
At Special Symposium 1, “Preparing for new AD treatments”, organised by Alzheimer Europe, chaired by Director for Research Angela Bradshaw and supported by the gold sponsorship from Lilly, four speakers shared the stage. First up was Jan Runar Eliassen (Norway), a member of the EWGPWD, who shared his personal perspective as a person with early-onset Alzheimer’s dementia. He was diagnosed at the age of 45 which was a huge shock for him and his family. “In Norway, we are proud of our health care”, he said, “but care regarding people with dementia has a long way to go”. Jan Runar and his family have had little or no contact or support within their local community since the diagnosis and this is sadly far from a unique story. “When I travel around Norway this is something I hear all over”, he said. Thankfully, he and his wife have established good contact with the Norwegian Health Associations and he was asked to be a member of their working group for people with dementia and, more recently, was nominated to the EWGPWD as well. These groups and contacts, as well as joining Norway’s “Dementia Choir”, a television programme inspired by that of the BBC in the UK, have been a saving grace for Jan Runar and his family. In closing, he stated that his sincere wish for the future of dementia care is that “no one should feel they are alone with this disease”.
Cath Mummery spoke about “Moving from research to clinical practice in the treatment of AD”. Her presentation highlighted that dementia services are currently primarily community based and are insufficiently resourced, while clinical trials environments are highly-regulated, well-resourced and typically manage patients with minimal comorbidities. The arrival of disease-modifying therapies, and the beginning of a treatment era in dementia, “provides a golden opportunity to reshape services, improve access to diagnostics and reframe conceptualisation of dementia”, she said. However, she also emphasised the importance of bridging the gap between the ‘real world’ and clinical trials. She explored some of the questions that arise from this, and what might be done “to start a journey towards access for all to a biological diagnosis and treatments for dementias.”
The next speaker was Julius Popp, head of the Centre for Cognitive Disorders and Alzheimer’s disease at the Hirslanden Hospital Zürich and the head of the research group Biomarkers and Neuropsychiatry at the University of Zürich. He pointed out that “the use of biomarkers is often recommended, but is currently still limited by their relative invasiveness, limited availability, and costs.” He also said that with new drug therapies targeting specific brain pathologies, biomarkers would become mandatory to determine the presence of pathology and to evaluate the therapy effects on this pathology. Finally, he stated that “blood-based biomarkers and other non-invasive markers will become available for clinical practice in the near future. These developments will lead to a much broader utilisation of biomarkers and accelerate the development of tailored prevention and treatment approaches.”
The fourth and final speaker at this symposium was Leonie Visser, PhD, Amsterdam UMC, who began her talk on the paradigm shift in healthcare and professional-patient communication with the assertion that "initiating disease-modifying treatment for AD is a preference-sensitive decision. Shared decision-making is not a new concept, yet it is even more important but also complex, because of the uncertainties regarding the benefits, risk of side effects, and burden of administration and monitoring”. She also noted that, in order to encourage patient engagement and support meaningful conversations about disease-modifying treatment initiation, educational materials and communication tools are needed, and that these should be developed taking a co-creation approach.
“Dementia Researchers of the future” symposium highlights the work of ten early stage researchers who won bursaries to attend and present
The symposium “Dementia researchers of the future” was organised by the Alzheimer Europe Foundation and the INTERDEM Academy, thanks to the support of the silver sponsorship of Biogen.
This session afforded a great opportunity to ten early stage researchers, who were selected by our jury to benefit from bursaries to attend and present at the conference. The selection of these ten bursaries was based on the best average scores each received from the jury members.
Iva Holmerová (Czechia) and Fania Dassen (Netherlands) co-chaired this special symposium, and the ten researchers who presented their work were:
• SS3-01 Özlem Çiçek Doğan (Turkey): Understanding the experiences of individuals with dementia and their caregivers after the Turkey-Syria earthquakes: a qualitative study
• SS3-02 Natalia Soldevila-Domenech (Spain): Predictors of the cognitive response to multimodal lifestyle interventions for cognitive decline prevention: pooled analysis of four clinical trials
• SS3-03 Electra Chatzidimitriou (Greece): The predictive value of social cognition assessment over and above neuroimaging for 1-year functional outcomes in behavioral variant frontotemporal dementia
• SS3-04 Raphaella Paradisi (Greece): Modified Cued Recall test for the diagnosis of dementia of the Alzheimer's type in a Greek population of adults with Down syndrome: a validation study
• SS3-05 Matěj Kučera (Czech Republic): The role of risk factors in development of cognitive disorders and cognitive decline in the Czech Republic and the Netherlands: comparative SHARE prospective study
• SS3-06 Eda Atay (Turkey): The effect of cognitive stimulation therapy on apathy, loneliness, anxiety and activities of daily living in elderly individuals diagnosed with Alzheimer's
• SS3-07 Nina Stopar (Slovenia): Risk factors for dementia among patients in memory clinic
• SS3-08 Marina Makri (Greece): An innovative online educational program on Neurodegenerative Genetic Counseling developed in Greece, Germany, Belgium, Spain and Turkey
• SS3-09 Gabriela Początek (Poland): The meanings of the life story of a person living with dementia and their tendency to "wander"-the narrative perspective of Polish caregivers
• SS3-10 Anja Mrhar (Slovenia): The effect of individual characteristics on the level of nutrition related knowledge: exploratory study for older adults across levels of cognitive impairment.
Innovation in dementia care
The third plenary of the conference covered topics related to innovation in dementia care. The session was moderated by Marjolein de Vugt (Netherlands) and Tobias Nef, the first speaker, delivered a presentation titled “Digital Biomarkers to support dementia patients and their caregivers”. He is a Full Professor of Gerontechnology and Rehabilitation at the ARTORG Research Center for Biomedical Engineering and the Department of Neurology at the University of Bern, Switzerland. He began by sharing results from a large survey of Swiss nursing staff in various hospitals (https://matchrn.unibas.ch/), which found that one of the greatest challenges for nursing staff, particularly at night, is to maintain an overview and decide which patient requires attention at any given time. Tobias Nef and colleagues put together a research project investigating whether the introduction of sensor-based digital nursing assistance systems could help nursing staff to keep track of patients on the ward, prevent unnecessary rounds, intervene quickly in emergencies and reduce stress for nursing staff. The study was conducted on a 22-bed geriatric psychiatric ward (Beyeler Ward, University Psychiatric Services Bern) and the results were good, with both patients and staff responding positively to the system.
The next speaker was Esther Loseto-Gerritzen from the Institute of Mental Health at the University of Nottingham, United Kingdom. She spoke about online peer support for people with Young Onset Dementia, and began by noting that peer support is known to be an important source of post-diagnostic support for this particular group of people. However, she specified, in-person peer support groups are not accessible for everyone.
“Our research shows that the benefits of peer support for people with Young Onset Dementia are not limited to in-person settings”, she continued, also pointing out that online peer support can foster social support, information sharing and friendship. “Moreover, it offers unique advantages, such as the ability to engage from the comfort of one’s own home and access to a wide range of platforms and modes of communication, allowing people to choose something that suits their needs, abilities and preferences.”
Future work, she stressed, should focus on improving signposting, reducing digital exclusion and gathering more quantitative evidence, to inform policy and practice and improve the availability and accessibility of online peer support.
The third speaker at this session was Aisling Flynn, Lecturer in Occupational Therapy, Bournemouth University, United Kingdom, whose talk centred on virtual reality as a means of promoting the social connectedness of people living with dementia and their supporters.
“Given the social health challenges that many people living with dementia face, it is important to explore innovative solutions that promote social connectedness”, she began, also stressing that multi-user virtual reality “enables people living with dementia and their caregivers to share immersive experiences, potentially promoting social connectedness, all from the comfort of their own homes.”
She concluded her talk by saying that, while still under-researched, multi-user virtual reality “shows significant potential in enhancing social health outcomes for people living with dementia, offering a promising frontier for future research."
The fourth and final speaker in Plenary 3 was Lizzy Boots from the Alzheimer Center Limburg/Maastricht University, Netherlands. In her presentation, “From research and development to implementation - the Evaluation in Life Cycle of Information Technology (ELICIT) framework” she highlighted the need to involve end-users and potential financiers at an early stage, to build a business case together with stakeholders, to invest in (tailored) training for coaches and ambassadors, and she especially urged researchers to “ Stay open” and to “keep on co-creating to improve your innovation. The perspective of ambassadors can help you keep up with new challenges in the ever-changing care climate.”
Alzheimer Europe would like to extend a warm welcome to all delegates and remind everyone to use the hashtag #34AEC to join/follow the conversation on X (formerly Twitter).
Acknowledgement
Alzheimer Europe gratefully acknowledges the support of all conference sponsors, with particular thanks to Gold sponsor Lilly, Silver sponsors Biogen, Novo Nordisk, Otsuka, and Terumo, and Bronze sponsors, BioArctic, Bristol Myers Squibb, MSD, Prothena and Roche.