On 4 and 5 December 2018, Alzheimer Europe (AE) hosted the fourth edition of its annual Alzheimer’s Association Academy. Participants included 31 representatives from AE member organisations; 4 company representatives, 4 members of the European Working Group of People with Dementia (EWGPWD) and 7 AE staff members. There were 9 expert speakers European and national institutions/organisations and topics were defined based on a survey of participants at the 2017 Academy and AE members.
The first day began with a session on “Involving carers of people with dementia in Alzheimer’s associations” and was moderated by James Pearson, from Alzheimer Scotland. This session included presentations by Stefanija Lukic-Zlobec (Spominčica, Slovenia), who spoke about the experience of Spominčica in involving and supporting carers of people with dementia; Bernard O’Hagan (National Dementia Carers Action Network – NDCAN, Scotland, UK), who told delegates about the experiences of carers of people with dementia advocating for policy change at national level, in Scotland; and Mario Possenti (Federazione Alzheimer Italia, Italy), who shared the experience of Federazione Alzheimer Italia in surveying the views of carers of people with dementia. During their presentations the speakers addressed the key questions: How can Alzheimer’s associations effectively involve carers of people with dementia in their governance and activities? How should Alzheimer Europe effectively involve carers of people with dementia in its governance and activities? How are the interests of people with dementia and of carers represented by Alzheimer’s associations?
The second session of the day was on “Giving a voice to and involving people with dementia in Alzheimer’s associations” and was moderated by Iva Holmerová, Chairperson, Alzheimer Europe. This session included presentations by Dianne Gove (Alzheimer Europe), who discussed the findings of Alzheimer Europe’s mapping exercise on the development and growth of working groups of people with dementia in the European region; and Jesús Rodrigo (CEAFA, Spain), who spoke about PEPA, the Spanish Group of People with dementia, as an example of a recently-created working group. The speakers looked at how national organisations can better involve people with dementia in their governance and activities, and at some of the barriers identified.
Day two of the Academy began with a session on “Challenges for the introduction of Alzheimer’s innovation”, which was moderated by Jean Georges, Executive Director, Alzheimer Europe. This session included presentations by Tim Shakespeare (Alzheimer’s Society, United Kingdom), who shared the experience of the Alzheimer’s Society on preparing for the introduction of new Alzheimer’s medicines; Andy Bolan (Biogen), who discussed “Health System Preparedness of Six EU Countries for future Alzheimer’s Innovation”; and Krista Tromp (Erasmus Medical Centre, Netherlands), who spoke about how the introduction of preventative treatments impacts the ethical issues raised by genetic and biomarker risk disclosure. All three presentations helped give delegates at the Academy a clearer picture of how the introduction of disease-modifying treatments impacts on the role of Alzheimer’s associations, how health care professionals need to respond to the introduction of new treatments, whether healthcare systems have the necessary infrastructure and procedures in place for the introduction of new medicines, and how society might respond to the introduction of these medicines as well as ethical issues needing addressed.
The second morning session, was on “Promoting the participation of people in dementia research”, with moderator Charles Scerri of the Malta Dementia Society. This session included presentations by Ana Belén Callado Gil (Fundació Pasqual Maragall, Spain), who gave the example of the foundation on the effective use of communication to increase research participation – specifically in its ALFA cohort; Marissa Zwan (VUMC, Netherlands), who presented “Hersenonderzoek” – the Dutch registry for brain research and nationwide online platform for recruitment and pre-screening of participants for neuroscience studies; and Piers Kotting (Join Dementia Research, UK), on increasing the participation of people in dementia research, using Join dementia research as an example. This session introduced some of the initiatives at national level to promote the involvement of people with dementia, carers and people at risk of developing dementia in dementia research, the role Alzheimer’s associations have in promoting opportunities for research participation, and whether or not it could be feasible to encourage common systems or databases for people interested in participating in dementia research.
The final session of the Academy was a consultation with the Prevention of dementia using mobile phone applications project (PRODEMOS). Krista Tromp was the moderator. The PRODEMOS project aims to make an evidence-based dementia prevention strategy using mobile Health accessible to those at increased risk of dementia who are usually not reached by preventive medicine. It is targeting socio-economically deprived populations in the EU and a population at risk of dementia in China. The final aim is to implement a flexible, fully-adaptable mHealth platform in a culturally appropriate form in a range of healthcare settings across the globe. Project researchers Marieke HOEVENAAR-BLOM, Edme EGGINK, both at Amsterdam Medical Centre, and Shanu SADHWANI (University of Sussex) asked delegates to reflect on a number of questions related to the app and some of the possible difficulties that they might encounter in creating and implementing it, as well as coming up with solutions and other ideas.
The two-day Academy was a very interactive event, with plenty of interesting and thought-provoking discussions. Given the success of its Alzheimer’s Association Academies to date, AE will host a fifth edition in December 2019.