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Special symposia held during #29AEC in The Hague

Wednesday 30 October 2019

On 24 and 25 October 2019, during the 29th Alzheimer Europe Conference (#29AEC), several special symposia were held, including:

Clinical trials in Alzheimer's disease

This Special Symposium, which was sponsored by a grant from Janssen, focused on the past, present and future of clinical trials in Alzheimer’s disease. To complement the Special Symposium, conference bags included a copy of the Clinical Trials Supplement, accompanying the October 2019 edition of our Dementia in Europe magazine. The Symposium was chaired by our Executive Director, Jean Georges.

The speakers were Brian Inglis, Simon Lovestone and Philip Scheltens. Brian Inglis, a Scottish participant in the EPAD (European Prevention of Alzheimer’s Disease) longitudinal cohort study, who spoke about his experiences of this clinical study and about what motivated him to participate in research. Simon Lovestone, Professor of Translational Neuroscience at the University of Oxford, and one of the academic partners of the EPAD consortium, took stock of what we have learned from unsuccessful clinical trials for Alzheimer’s disease (AD). Philip Scheltens, Director of the Alzheimer Center Amsterdam at Amsterdam UMC, discussed new avenues for AD research.

European Working Group of People with Dementia (EWGPWD): "Inspired by connections"

Members of the EWGPWD discussed how people with dementia connect to their communities and looked at the importance of these connections for maintaining a meaningful and full life and for continuing to contribute to society. One of the areas mentioned several times during the session was transport. Members of the group feel strongly that this is a key factor in living well with dementia, as it affects whether or not they can maintain social connections, access medical appointments and other important events, and remain as independent as possible.

The symposium was chaired by Helen Rochford-Brennan (Ireland). Angela Pototschnigg (Austria), Stefan Eriksson (Sweden) and Chris Roberts (United Kingdom) gave presentations during the session, while Tomaž Gržinič (Slovenia), Petri Lampinen (Finland), Idalina Aguiar (Portugal) and Geert van Laer (Belgium) made their contributions via the medium of video clips filmed at the group’s most recent meeting. The group hopes that their short speeches and video clips will inspire people with and without dementia, to find new ways to connect with each other.

The four videos are now available on Alzheimer Europe’s YouTube channel:

The achievements of the 2nd European Joint Action on dementia

Since its inception in 2016, the 2nd European Joint Action on dementia – “Act on Dementia” has been promoting collaboration among EU Member States to improve the lives of people living with dementia and their carers. Act on Dementia comes to a close this year and this symposium was an opportunity to showcase its results and findings.

The symposium was jointly presented by Geoff Huggins, Director of the NES Digital Service (which is part of NHS Scotland and has responsibility for developing Scotland’s National Digital Platform); David Nuttall, Department of Health and Social Care, UK Government; Pierre Krolak-Salmon, Institut du Vieillissement, Lyon, France; Nicola Vanacore, National Institute of Health, Italy; Oyvind Kirkevold, Aldring og Helse, Olso, Norway; Mireia Espallargues and Vicky Serra-Sutton, Avaluacio Sanitaries de Catalunya, Spain; and Gillian Barclay, Scottish Government, Edinburgh, UK.

Data sharing in dementia research

This Special Symposium, which was sponsored by a grant from Gates Ventures, was chaired by Angela Bradshaw, Project Officer at Alzheimer Europe. The session aimed to provide a broad overview of the state-of-the art on health data sharing, from clinical research to data protection and, finally, the views of patients.

The speakers were Pieter Jelle Visser, Manuela Mayrhofer and Nicola Bedlington. Pieter Jelle Visser, Associate Professor at the Alzheimer Center of Amsterdam University Medical Center, highlighted the lack of effective drug therapies for Alzheimer’s disease (AD) and underlined the importance of accessing large clinical datasets to speed up research. He discussed a number of recent initiatives aimed at facilitating data sharing, including Dementias Platform UK (DPUK), the Netherlands Consortium of Dementia Cohorts and the European Medical Information Framework - Alzheimer’s disease (EMIF-AD) project. Manuela Mayrhofer of the Biobanking and Biomolecular Resources Research Infrastructure (BBMRI) focused on the legal frameworks that underpin responsible data sharing in health research. She outlined one of the central ambitions of the General Data Protection Regulation (GDPR): to strike a balance between the protection of individuals’ personal data, whilst also enabling the free movement of this personal data. She also looked at the scope of the GDPR and discussed some recent data scandals, outlining how the EU are handling these situations to ensure data is held, processed and shared securely. Nicola Bedlington of the European Patients’ Forum (EPF) shared the views of patients and the general public on data sharing, presenting the work that the EPF has undertaken with its member organisations. She introduced delegates to the “Data Saves Lives” initiative, a multi-stakeholder platform hosted by the EPF that aims to provide up-to-date information about health data in an accessible format.

Alzheimer Nederland symposia

Alzheimer Nederland, co-host of the 29th Alzheimer Europe Conference, held three special symposia, during the event.

The first was a special edition of an “Alzheimer Café”. Famous author Nicci Gerrard was interviewed about her latest book, “What Dementia Teaches Us about Love”. The book gained a lot of attention in the media and among the general public. After her own father dying from dementia, she set out to explore the illness. Her book is an attempt to understand and is filled with stories, both moving and optimistic, from people living with dementia to those planning for the end of life, from the scientists unlocking the mysteries of the brain to the therapists using art and music to enrich the lives of affected people; from the campaigners battling for greater compassion in care to the families trying to make sense of dementia. The book explores memory, language, identity, ageing and the notion of what it truly means to care.

The second Alzheimer Nederland symposium focused on the Netherlands’ national dementia strategy, the “Deltaplan Dementie”. Speakers at the session were Philip Scheltens (Deltaplan Dementie), Marianne De Visser (ZonMW Program Committee), Dinant Bekkenkamp (Alzheimer Nederland) and Karlijn Kwint (Vilans). All four speakers are closely involved in the implementation of the Deltaplan. The Deltaplan was launched in 2012, to address and manage the growing problem of dementia in the Netherlands. This second national strategy was launched by the Ministry of Health, Welfare and Sports and comes to an end next year. The Deltaplan Dementie is also a cooperative network with member organisations in the fields of science, education, healthcare, healthcare insurance and business, as well as patient organisations.

The third and final symposium organised by Alzheimer Nederland was “Innovations in dementia care in the Netherlands”. The speakers were Bere Miesen (The Hague), Bernadette Willemse (Reigershoeve), Simone De Bruin (RIVM – Netherlands National Institute for Public Health and the Environment) and Willem Draaisma (Participe). The Dutch innovations examined during this session were: the “Alzheimer Cafe”, new developments in small-scale housing and care farms; and “Odensehuizen” (a Danish creation, picked up and developed into a new facility in the Netherlands).