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JUNE 2021 ALZHEIMER EUROPE TABLE OF CONTENTS NEWSLETTER HIGHLIGHTS IN THIS ISSUE 01 7 June: FDA approves aducanumab for Alzheimer's disease 19 Welcome 14 June: Alzheimer Europe AGM adopts Strategic Plan 2021-2025 3 02 15 June: New issue of Dementia in Europe magazine published 5 COVID-19 Situation 15 June: European Parliament Workshop focuses on AD spectrum 4 03 25 June: DG Santé removes key health NGO funding mechanism 6 Alzheimer Europe 30 June: Call for abstracts for our Annual Conference is closed 7 07 WELCOME Alzheimer Europe networking At the start of June, the U.S Other Alzheimer Europe meetings and Food and Drug Admin- events this month included a meeting of the 09 istration (FDA) delivered a European group of governmental experts on EU projects highly-anticipated and con- dementia and an online European Parliament troversial decision, approv- Workshop on “The Alzheimer’s spectrum: 13 ing aducanumab for the Changing our understanding of Alzheimer’s European Alzheimer’s treatment of Alzheimer's disease and dementia” attended by EU Alliance disease (AD). Biogen's drug is policymakers, representatives from national the first AD treatment to be approved by the Alzheimer’s associations, national health 13 FDA since 2003, and is the first potentially ministries, pharmaceutical companies, EU developments disease-modifying therapy to reach the researchers and members of the European market. Biogen is now required to conduct a Working Group of People with Dementia. 16 post-approval clinical trial and if it does not Many thanks to MEPs Deirdre Clune, Colm Policy watch confirm the drug's benefit for its target Markey, Roberta Metsola and Włodzimierz population - people with mild cognitive Cimoszewicz who attended or were 16 impairment or mild dementia - the FDA may represented. We also held a roundtable Members’ news remove the drug from market. meeting with our corporate sponsors. I In another controversial decision this month, would like to thank those sponsors for, 18 which is making waves in the European among other things, making the publication Science watch Health NGO community, the European of our Dementia in Europe magazine possible, a new edition of which has just 23 Commission excluded the operating grants mechanism from its 2021-2022 EU4Health been released. The e-magazine highlights our Living with dementia Annual Work Programme. This decision efforts and those of our members to make dementia a priority, and provides updates on 24 seriously undermines key activities of European health NGOs including Alzheimer the latest national- and European-level policy Dementia in Society Europe, and this, during the greatest public developments in the dementia field. The 24 health crisis in living memory. We hope that, June edition includes an interview with EU Commissioner for Equality Helena Dalli, New Publications & as the only DG to have made this regrettable decision rather than following the lead of its introducing the EU disability rights strategy. Resources counterparts who have not only kept Lastly, I would like to note that the call for st 25 operating grants but increased their scope abstracts is now closed for our 31 Annual Job opportunities and funding, that DG Santé and Conference, taking place online from 29 Commissioner Kyriakides will reconsider. November to 1 December. We are pleased to 25 On a more positive note, our AGM has have received almost 300 abstracts, all of Education approved a new Strategic Plan 2021-2025 which will now be reviewed by the Scientific and together with our dedicated team, I look Committee. 27 forward to the challenge of fulfilling our Jean Georges AE calendar ambitious objectives for this five-year period. Executive Director 27 Conferences 1 JUNE 2021 COVID-19 SITUATION 18 June: Analysis of UK ONS data shows that communities with a high density of care homes and residential overcrowding experienced higher excess mortality during the COVID-19 pandemic In order to better understand the impacts of the COVID-19 pandemic on dementia research, Dr Natassia Brenman (in collaboration with Dr Richard Milne and a team from Dementias Platform UK/DPUK) held focus group discussions with on-site During the first wave of the COVID-19 pandemic, severely- clinical researchers, off-site researchers using digital and affected countries experienced high levels of excess mortality. remote methods, and Investigators leading clinical research In England, over 50,000 excess deaths were reported by the UK sites. Office for National Statistics (ONS), with variations in excess Four key themes emerged from these discussions. Firstly, deaths between different areas. To understand community researchers felt that COVID-19 research was being prioritised characteristics that might influence these patterns, a team of over research on dementia, increasing academic precarity for researchers led by Prof. Paul Elliott at the UK Dementia early-career researchers and slowing the progress of ongoing Research Institute applied statistical models to ONS data on studies. Compounding this issue, discussions also identified excess mortality from the first wave of the pandemic. concerns relating to inclusion and access to dementia research Lowest levels of excess mortality were reported in remote rural for older people with cognitive impairment or dementia. areas, with the largest increases in mortality in London. Investigators highlighted the fact that underrepresentation of Communities with greater environmental and social certain groups in dementia research (e.g. ethnic minorities) has deprivation tended to have larger increases in excess mortality. been exacerbated by the pandemic, in part due to practical Excess mortality risks did not appear to be linked to higher issues in accessing clinical sites and also due to lower levels of population density; instead, they were related to poverty, vaccine uptake in certain populations. Another key theme was overcrowded homes, and non-white ethnicity. Of note, centred around practical and ethical challenges to conducting communities with a high density of care homes were linked to dementia research during a pandemic: for example, a 21-27% increase in excess mortality. maintaining a connection with study participants whilst Together, these results underline the importance of bolstering respecting physical distancing guidelines and wearing face- protection for care home staff and residents, and improving obscuring personal protective equipment. Finally, the focus public health and healthcare measures that target the group participants expressed differing views on the increasing communities most at-risk for excess mortality. use of digital technologies for remote assessment and https://www.nature.com/articles/s41467-021-23935-x#author- monitoring, with enthusiasm for new and more accessible information methodologies on the one hand, and concerns about their scientific and clinical validity on the other. 24 June: Dementias Platform UK report reveals Commenting on the report, Dr Brenman said: "This research multiple impacts of COVID-19 pandemic on raises even more questions than it answers, highlighting the dementia research need to engage with the social and ethical uncertainties about The COVID-19 pandemic has disrupted all aspects of life, as dementia research as well as the practical and scientific measures aimed at slowing the spread of COVID-19 have challenges. This should be done by listening closely to those interrupted normal ways of working. Many types of research navigating these issues day-to-day." have been put on hold, with restrictions on the numbers of https://www.dementiasplatform.uk/news-and-blogs/news/report- researchers able to work on-site and reductions in face-to-face reveals-the-effects-of-covid-19-on-dementia-research clinical research visits to limit physical contacts between individuals. 2 JUNE 2021 disease and other types of dementia where new treatment ALZHEIMER EUROPE options are included alongside counselling, support and 7 June: Alzheimer Europe welcomes FDA adequate care of people with dementia and their carers at all decision to approve aducanumab stages of the disease. On 7 June 2021, the US Food and Drug Administration (FDA), in 8 June: Alzheimer Europe contributes to paper on a highly anticipated decision by the global dementia “Dementia and COVID-19, a Bidirectional Liaison: community, authorised aducanumab for the treatment of Risk Factors, Biomarkers, and Optimal Health Alzheimer's disease and asked Biogen to conduct a post- Care” approval clinical trial to verify the drug's clinical benefit. The journal Alzheimer’s and Dementia has published a paper on Alzheimer Europe welcomes the approval of the first treatment the possible bidirectional relationship between dementia and to modify disease progression, rather than provide COVID-19. Cases of cognitive impairment after a SARS-CoV-2 symptomatic relief, as currently authorised medicines do. This infection are being more and more recognized as an acute and decision constitutes a significant advance in the treatment of (possibly) also long-term condition. Alzheimer’s disease and gives hope to patients and their The identification of reliable biomarkers for COVID-19-caused families that the cognitive and functional impairments cognitive impairment is still in its early shoes, but the associated with the disease may be slowed or delayed. researchers report that there is already emerging evidence that Alzheimer Europe also welcomes the decision by the FDA to ask SARS-CoV-2 could preferentially target