MARCH 2021 ALZHEIMER EUROPE TABLE OF CONTENTS NEWSLETTER HIGHLIGHTS IN THIS ISSUE 01 1 March: Alzheimer-Europe-backs-European-Health-Union-initiative 12 Welcome 9 March: Our new report looks at legal capacity and decision making 2 02 29 March: EU4Health programme enters into force 15 COVID-19 Situation 30 March: “Dementia Monitor 2020” looks at policies across Europe 4 02 0 Alzheimer Europe WELCOME 05 March saw two new Taking a look at the EU landscape, there publications for Alzheimer have been some exciting developments in Alzheimer Europe Europe: Our latest ethics the past weeks, including the European networking report, identifying key Union’s EU4Health programme being 06 recommendations on legal published in the Official Journal of the EU projects capacity and decision European Union, which marks the new making of people with programme’s official start. The EUR 5.1 11 dementia; and the billion programme will undertake a range of European Alzheimer’s “Dementia Monitor 2020”, outlining the actions in relation to health across the EU, Alliance state-of-play of dementia policy in Europe. with around 20% earmarked for prevention. We were also involved in two new research The European Commission launched two 12 papers, published in the Journal of Health important documents, this month: a new EU developments Expectations, both based on the work of the disability rights strategy, outlining how the PARADIGM project. Dianne Gove and Ana Commission aims to support the rights of 15 Diaz were among the co-authors of the first people with disabilities across the EU; and Members’ news article, on “Understanding multi- an Action Plan on the European Pillar of stakeholder needs, preferences and Social Rights, which was proclaimed by the 18 expectations to define effective practices European Parliament, the Council and the Policy watch and processes of patient engagement in Commission in 2017, at the Gothenburg medicine development: A mixed-methods Summit. The Pillar sets out 20 key principles 18 study”, and Ana is a co-author of the second and rights essential for fair and well- Science watch article, “Evaluation of patient engagement functioning labour markets and welfare in medicine development: a multi- systems, and the new Action Plan sets out 22 stakeholder framework with metrics”. how the EU intends to achieve these. Dementia in Society We are delighted to be increasingly involved Also, at the EU level, we have joined other in EU-funded dementia research projects health-focused civil society organisations in 23 and one such project which recently came supporting a manifesto, coordinated by New Publications & to an end was European Prevention of European Health Forum Gastein, focused on Resources Alzheimer’s Dementia (EPAD). EPAD shaping the future of the EU’s European announced this month that its latest and Health Union. The manifesto sets out a 24 final dataset, which went into open access series of goals, policies and principles and Job opportunities in late 2020, has now been incorporated calls upon European leaders, within the into the Alzheimer’s Disease Data Initiative European Council and as part of the 25 (ADDI) Alzheimer’s Disease Workbench. Conference on the Future of Europe, to Education Finally, on the EU project front, the new embed these in the European Health Union. 24 H2020-funded project, AI-Mind, which is I hope you enjoy our newsletter! focusing on artificial intelligence for AE calendar dementia prevention, held its official kick- Jean Georges off meeting, attended by almost 50 project 24 Executive Director Conferences contributors from 15 partners, including Alzheimer Europe. 1 MARCH 2021 COVID-19 SITUATION 11 March: WW‐FINGERS researchers describe 18 March: Care Quality Commission review finds how study protocols and processes have been that more than 500 people in the UK were put on adapted during the COVID-19 pandemic "do-not-resuscitate" orders during the The Finnish FINGER trial was pandemic, without their consent among the first to show the According to a report by cognitive benefit of multi-domain England's Care Quality interventions including exercise, Commission (CQC), more than improved diet, social stimulation 500 people in the United and management of lifestyle Kingdom were put on "do-not-resuscitate" orders without factors in older people at risk of their consent or their carers' consent during the coronavirus developing dementia. World- pandemic. The report was published on 18 March. Wide FINGERS (WW-FINGERS) is an interdisciplinary network "From the beginning of the COVID-19 pandemic, there were that brings together several clinical studies and research concerns that 'do not attempt cardiopulmonary resuscitation' groups evaluating preventive interventions targeting (DNACPR) decisions were being made without involving modifiable risk factors based on the FINGER model, including people, or their families and/or carers if so wished, and were the US-POINTER, J-MINT and AgeWell.de studies, three clinical being applied to groups of people, rather than taking into trials in the US, Japan and Germany. account each person's individual circumstances," said the CQC In a perspective article, published in the journal Alzheimer's & in its report. Dementia: Translational Research and Clinical Interventions, Out of 2,048 adult social care providers who responded to the Dr Susanne Rohr, Prof. Mark Espeland and colleagues in the CQC's information request, 5.2% (508 out of 9,679) of DNACPR WW-FINGERS study shared experiences on the design and decisions put in place since 17 March 2020 "had not been management of clinical research during the COVID-19 agreed in discussion with the person, their relative or carer". In pandemic. The article describes COVID-19-related experiences one care home, everyone over 80 with dementia had a from US-POINTER, J-MINT and AgeWell.de and alterations and DNACPR order applied. adaptations made necessary by the pandemic in these clinical trials involving people at risk for cognitive decline and The report comes after the UK's Department of Health and dementia. Social Care requested a rapid review into the do-not- resuscitate decisions following "concerns that they were being For example, the Japanese 18-month multidomain inappropriately applied to groups of people without their intervention for dementia prevention trial called J-MINT has knowledge." been affected by the pandemic mainly in the recruitment process. Compared to the schedule originally planned, the "Across the review process, whilst inspectors did find some progress of the study has been delayed more than half a year. examples of good practice, they also found a worrying picture J-MINT investigators describe how face shields and/or masks of poor involvement of people using services, poor record and social distancing are used during exercise classes, while in keeping, and a lack of oversight and scrutiny of the decisions Germany, AgeWell.de participants are offered assessments in being made," the study found. their homes as well as at study sites. While recruitment and The CQC has called for government action to address a baseline assessments were completed before the pandemic "worrying variation" in people's experiences of do-not- for the AgeWell.de study, infection control measures and resuscitate decisions and "to take responsibility for delivering post‐intervention follow‐up assessments have been impacted. improvements in this vital and sensitive area." The CQC report In addition, authors provided recommendations for future can be read here: behavioural intervention trials and emphasised the https://bit.ly/3wb32FP importance of ensuring that study designs are sufficiently flexible to enable lifestyle interventions to be delivered in a ALZHEIMER EUROPE physically distanced environment, with remote follow-up 9 March: New Alzheimer Europe report identifies assessments as required. The authors identify some statistical considerations, indicating that study designs may need to be key recommendations on legal capacity and adapted to preserve statistical power and facilitate statistical decision making of people with dementia analyses. On 9 March 2021, Alzheimer Europe launched a new report, https://alz-journals.onlinelibrary.wiley.com/doi/10.1002/trc2.12143 “Legal capacity and decision making: The ethical implications of lack of legal capacity on the lives of people with dementia”, which looks at the intersection between legal rights and 2 MARCH 2021 2017 ethical considerations in Every person should have access to an independent supporter relation to legal capacity and to make a will and to include members of their entourage in decision making. this process if they wish. The working group A diagnosis of dementia or guardianship measure should never responsible for the report was result in the automatic loss of the right to vote, marry, divorce set up by Alzheimer Europe in or make a will or advance directive. 2020 and was composed of Dianne Gove, Director for Projects at Alzheimer Europe and experts in dementia, law, co-author of the report, stated: “Any loss of the right to make ethics, policy, research, decisions, including both formal and informal restrictions, can psychology and the have a considerable psychological, emotional and practical experience of having impact on people’s lives and wellbeing. It is important to dementia and supporting reflect on ethical issues related to legal capacity and decision people with dementia. making, such as the need to respect human rights, protect the This report contains a detailed