Issue 36 June 2021 Helena Dalli Equality Commissioner outlines the new European Disability Rights Strategy Helen Rochford-Brennan Michael Hornberger Deirdre Clune, MEP member of the European Working Group of Professor of Applied Dementia Research at chairs Alzheimer Europe’s online European People with Dementia shares her experience of Norwich Medical School comments on the link Parliament Workshop on the importance bereavement during the COVID-19 pandemic between traumatic brain injury and dementia of data for dementia research TABLE OF CONTENTS Contents Contact Alzheimer Europe 3 Welcome by Iva Holmerová, Chairperson of Alzheimer Europe 14, rue Dicks L-1417 Luxembourg Alzheimer Europe +352 29 79 70 +352 29 79 72 4 Alzheimer Europe co-hosts European Parliament Workshop on “Digital data for https://www.alzheimer-europe.org dementia research and innovation” [email protected] 6 Alzheimer Europe publishes report on Data Sharing in Dementia Research @AlzheimerEurope 8 The PARADIGM project presents its Patient Engagement Toolbox alzheimer.europe 11 AI-Mind – New initiative to develop artificial intelligence tools for dementia prevention alzheimereurope 14 LETHE project looks at digital cognitive biomarkers Alzheimer Europe 16 Alzheimer Europe hosts Alzheimer’s Association Academy session focusing on sports and dementia 17 Prioritising of people with dementia and their carers for COVID-19 vaccination Policy Watch 18 Alzheimer Europe speaks to Equality Commissioner Helena Dalli about the EU’s action on disability rights Board 20 Czech Republic launches its second national action plan on dementia Chairperson: Iva Holmerová (Czech 23 The Netherlands launches its fourth national dementia strategy Republic) 26 Alzheimer Scotland builds on Fair Dementia Care Campaign during national elections Vice-Chairperson: Charles Scerri (Malta) 28 Italian Government commits to providing funding for its national dementia plan Honorary Secretary: Jim Pearson (UK – Scotland) 30 World Health Organization developing new global action plan for epilepsy and other neurological disorders Honorary Treasurer: Marco Blom (Netherlands) Members Dementia in Society Chris Roberts, Chairperson of the European Working Group of People with Dementia 32 Living with dementia and bereavement (UK – England and Wales) Stefanie Becker (Switzerland) 35 Changing seasons – A year with dementia during COVID René Friederici (Luxembourg) 38 Spotlight on early-career researchers: a Neuronet interview with Lena Sannemann Sabine Jansen (Germany) 40 Ping4Alzheimer – Table tennis to help slow cognitive decline Pat McLoughlin (Ireland) 42 Voting for people with dementia in the Netherlands Sirpa Pietikäinen (Finland) 44 Behind the headlines: What is the link between contact sports-related head injuries Karin Westerlund (Sweden) and dementia? Maria do Rosário Zincke dos Reis (Portugal) Staff Jean Georges, Executive Director Christophe Bintener, Project Communications Officer Cindy Birck, Project Officer Kate Boor Ellis, Communications Officer Angela Bradshaw, Project Officer Ana Diaz, Project Officer Dianne Gove, Director for Projects Gwladys Guillory, Event and Conference Coordinator Owen Miller, Policy Officer Stefanie Peulen, Finance Officer Grazia Tomasini, Administrative Assistant Photo credits Michael Wodak / MedizinFotoKöln European Commission European Parliament World Health Organization Layout: The Publishing Bureau 2 Dementia in Europe WELCOME Welcome At the national level, we speak to the Coordi- with two articles by members of our Euro- nator for the Czech Republic’s new National pean Working Group of People with Dementia Action Plan for Alzheimer’s Disease and (EWGPWD). Each explores aspects of life Related Illnesses 2020–2030, Marketa Švejdová during the ongoing COVID-19 pandemic. In Jandová and to Martina Mátlová, Director of the first, Helen Rochford-Brennan shares her the Czech Alzheimer Society, who shares her experience as a person living with young-on- organisation’s views on this, the country’s sec- set dementia, dealing with bereavement ond dementia plan. From the Czech Republic, during the pandemic, following the loss of we head to the Netherlands, where a fourth her husband. Petri Lampinen then tells read- national dementia strategy has been launched. ers what it has been like for him, living with Anne de Boer, Advocacy Officer at Alzheimer frontotemporal dementia during lockdown Nederland, examines the strategy from her and some of the difficulties he faced as well Iva Holmerová, Chairperson organisation’s perspective. Ms De Boer also as methods he uses to counter them. discusses some of the issues surrounding It gives me great pleasure to introduce issue voting for people with dementia in her coun- Up next, we hear from a researcher on the 36 of Alzheimer Europe’s Dementia in Europe try, in the Dementia in Society section of this MOPEAD (Models of Patient Engagement for magazine, which highlights our efforts and magazine, and highlights some of the work Alzheimer’s Disease) project, Lena Sanneman, those of our member associations to make Alzheimer Nederland has been doing to sup- who was interviewed by the Neuronet initiative dementia a European priority, and pro- port them in exercising their democratic rights. (Efficiently Networking European Neurode- vides updates on the latest national- and generation Research), as part of its series of European-level policy developments in the Alzheimer Scotland’s Director of Policy and interviews with Early Career Researchers. dementia field. Research, Jim Pearson, then provides an update on the organisation’s Fair Demen- One of the expert speakers at our previ- The first section of the magazine includes cover- tia Care Campaign and how this formed ously-mentioned Alzheimer’s Association age of the online European Parliament workshop the basis of their recent Scottish Parliament Academy online event on sports and demen- we co-hosted earlier this year with Charité – Uni- Election Pledge Campaign, which sought the tia, Renato Walkowiak, shares details of the versitätsmedizin Berlin. At the event, which was support of candidates standing in the Scot- “Ping4Alzheimer” initiative which involves chaired by Deirdre Clune, MEP and explored the tish Parliamentary election in May. Finally, giving special table tennis sessions for peo- theme of “Digital data for dementia research at the national level, Mario Possenti, Secre- ple with dementia and carers, while a second and innovation”, we launched a report setting tary General of Federazione Alzheimer Italia, speaker at the event, Professor Michael Horn- out recommendations to improve data sharing highlights the recent commitment from the berger, rounds off the 36th edition of our in dementia research. We recently published a Italian Government to provide funding for the magazine with an in-depth look at the link position paper, also, on the importance of pri- country’s National Dementia Plan, which was between contact sports-related head injuries oritising people with dementia and carers in first launched in 2014. and dementia. COVID-19 vaccination programmes, and have dedicated an article to this topic. Other articles At a global level, the World Health Organiza- I would like to warmly thank all the contrib- in this section share details of a recent Alzhei- tion (WHO) is in the process of developing an uting authors, interviewees and our sponsors, mer’s Association Academy online event about “Intersectional global action plan on epilepsy without whom our Dementia in Europe mag- sports and dementia, as well as our involvement and other neurological disorders”, which is azine would not be possible. in three different European research projects. discussed in the closing article of the policy watch section of this magazine, by Stéfanie I wish you good health and happy reading!: In the Policy Watch section, we are delighted Freel and Katrin Seeher of the WHO. to have an interview with EU Commissioner for Equality Helena Dalli, who introduces the The third and final section in this edition is EU’s new disability rights strategy. the Dementia in Society section, which opens Dementia in Europe 3 ALZHEIMER EUROPE Alzheimer Europe co-hosts European Parliament Workshop on “Digital data for dementia research and innovation” Alzheimer Europe co-hosted an online European Workshop, Deirdre Clune, MEP (Ireland) chaired the online Workshop chaired by Deirdre Clune, MEP, about how developments in the use and application of data were being used in the field through multi-scale brain simulation using The Virtual Brain (or TVB) simulator. However, it of dementia research to improve our understanding of the was explained that to achieve this, there are a condition, as well as the sharing and reuse of data. significant number of challenges in relation to both the required infrastructure for the sharing and processing of health data at a large scale, On 23 February, Alzheimer Europe co-hosted Opening remarks as well as the complications of doing so in a an online European Parliament workshop way which is compliant with the EU’s General with Charité – Universitätsmedizin Berlin. In her opening remarks as chair, Ms Clune Data Protection Regulation (GDPR). Chaired by Deirdre Clune MEP (Ireland), Vice- thanked members for their attendance and Chairperson of the European Alzheimer’s spoke of the need for a common European Human Brain Project and EBRAINS Alliance (EAA), the workshop featured pres- approach to the issue of dementia research, entations from speakers working in the field noting that