Dementia in Europe magazine issue 33, summer 2020 by Alzheimer Europe

Issue 33 June 2020

Svandís Svavarsdóttir

Icelandic Minister of Health discusses Iceland’s newly launched national dementia strategy

Christophe Hansen, MEP

moderated the lunch debate on Innovative Medicines Initiative funded projects on dementia

Senator Fiona O’Loughlin

sets out her priorities following her election to the Seanad Éireann

Mischa Kamp

discusses “Romy’s Salon”, her awardwinning film about dementia

TABLE OF CONTENTS

Contents 3

Welcome by Iva Holmerová, Chairperson of Alzheimer Europe

Alzheimer Europe 4 9 11 13

Lunch debate explores the work of the Innovative Medicines Initiative (IMI) in advancing Alzheimer’s research through private-public partnerships Patient and Public Involvement in research EURO-FINGERS: Europe at the forefront of Alzheimer’s dementia prevention ADAIR: Examining the link between air pollution and dementia

Contact Alzheimer Europe 14, rue Dicks L-1417 Luxembourg +352 29 79 70 +352 29 79 72 www.alzheimer-europe.org info@alzheimer-europe.org @AlzheimerEurope alzheimer.europe

Policy Watch Iceland launches first national dementia strategy Spain publishes national dementia strategy 20 European Alzheimer’s Alliance (EAA) members reiterate importance of dementia as a European policy priority 22 The Alzheimer Society of Ireland campaigns for change during Irish General Election 24 Continence care matters for people living with dementia 15

Dementia in Society 26 33 36

Dementia Friends – keeping up the good work Exercise and dementia – Petri Lampinen’s story Dementia in the arts: An interview with “Romy’s Salon” director Mischa Kamp

Focus on COVID-19 39 41 45

Alzheimer Europe responds to COVID-19 pandemic “We never close!” – our members continue to support people with dementia and carers in these difficult times Living with dementia during the COVID-19 pandemic

Board Chairperson: Iva Holmerová (Czech Republic) Vice-Chairperson: Charles Scerri (Malta) Honorary Secretary: Jim Pearson (UK – Scotland) Honorary Treasurer: Maria do Rosário Zincke dos Reis (Portugal) Members Helen Rochford-Brennan, Chairperson of the European Working Group of People with Dementia (Ireland) Stefanie Becker (Switzerland) Marco Blom (Netherlands) Sabine Jansen (Germany) Pat McLoughlin (Ireland) Sirpa Pietikäinen (Finland) Jesús Rodrigo (Spain) Karin Westerlund (Sweden) Staff Jean Georges, Executive Director 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 Aideen O’Brien, Administrative Assistant Stefanie Peulen, Finance Officer Grazia Tomasini, Administrative Assistant Photo credits Icelandic Ministry of Health European Parliament Bob Bronshoff Layout: The Publishing Bureau

2 Dementia in Europe

WELCOME

Welcome

Iva Holmerová, Chairperson of Alzheimer Europe

I am pleased to welcome you to the 33rd edition of Dementia in Europe - the Alzheimer Europe magazine. This is the first time we have had a fully electronic edition of the magazine. I hope you enjoy it! The decision to go electronic, for this issue, was made due to the uncertainties around the COVID-19 pandemic and its impact on service providers. The first section of the magazine highlights some of our efforts to ensure dementia remains a European priority. It begins with coverage of our February 2020 lunch debate, organised together with the Neuronet project and focusing on research collaborations at a European level. The debate was hosted by European Alzheimer’s Alliance Vice-Chairperson, Christophe Hansen, MEP (Luxembourg). I would like to thank him for the interest he has shown in the work we are doing to support dementia research. The Alzheimer Europe section then looks at some of the work we are doing with the European Working Group of People with Dementia (EWGPWD) in the area of Patient and Public Involvement (PPI) in research. We are also pleased to announce the start of two new JPND-funded projects, in which we are participating: EUROFINGERS and ADAIR. The project coordinators share more

information about these exciting new ini- For our final ”society” article, Dutch film tiatives, both of which our team is looking director Mischa Kamp tells our readers about forward to supporting. her award-winning movie “Romy’s Salon”, released at the start of this year. The movie The Policy Watch section presents the new- shines a spotlight on the changing relationly-launched national dementia strategy from ship between hair salon owner Stine and her Iceland, with input from Icelandic Minister of granddaughter, Romy, as Stine’s dementia Health, Svandís Svavarsdóttir, as well as from progresses. our member, Alzheimer Iceland. We then take a closer look at Spain’s recently-published Our final section pays special attention to strategy, with feedback from our member, some of the changes that have been happenConfederación Española de Alzheimer (CEAFA). ing for people with dementia, their carers, and Also at the national level, we spoke to The for the associations and organisations that Alzheimer Society of Ireland, which recently are working to support them, during this ran a campaign for change during the Irish COVID-19 pandemic. The section covers our General Election. own activities in response to the crisis, as well as some of those of our members, who At the European level, we include an inter- continue to work tirelessly to find new and view piece with new EAA Office Bearers, MEPs creative ways to ensure people living with Christophe Hansen, Hilde Vautmans and Sirpa dementia and their supporters can continue Pietikäinen. to access much needed care and services during this time of confinement, closures, and The final article in the policy section reflects social distancing. on the key issues around continence care for people with dementia and identifies some of On the subject of changes due to COVID-19, the ongoing efforts to improve the quality Alzheimer Europe’s 30th Annual Conference of their care and treatment, including work #30AEC, which was planned to take place in Alzheimer Europe has done on this topic in Bucharest, will now be a virtual conference, recent years. under the banner “Dementia in a changing world”. This decision was taken by the Our third section, Dementia in Society, begins Alzheimer Europe Board at an online meetwith a piece about Alzheimer’s associations ing on 19 May 2020, in light of the continuing throughout Europe which have imple- pandemic. It was also decided by the Board mented Dementia Friends programmes in that, rather than cancelling it, the Bucharest their countries and about how successful this conference “Building Bridges” would move to movement has been, as well as about how 29 November to 1 December 2021. More inforsuch programmes continue to engage people mation about the 2020 virtual conference is after they become “Dementia Friends”. available on our website. Next, we have an article written by Finnish member of the EWGPWD, Petri Lampinen, who shares his thoughts on life since a diagnosis of Frontotemporal Dementia and on the importance of exercise, diet and careful planning.

I wish you all good health!

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Lunch debate explores the work of the Innovative Medicines Initiative (IMI) in advancing Alzheimer’s research through private-public partnerships Alzheimer Europe and Neuronet co-organised a lunch debate, moderated by Vice-Chairperson of the European Alzheimer Alliance (EAA) Christophe Hansen, MEP, examining the work of the Innovative Medicines Initiative (IMI) in relation to dementia research.

Dr Hansen noted that progress could only be made with investment in research, with a significant source of funding being public-private collaborations such as IMI 1 (2008–2013) and IMI2 (2014–2020). Mr Hansen concluded his remarks by noting that it was essential that Horizon Europe continued this collaborative approach to research. The Neuronet Coordination and Support Action Carlos Díaz, Project Coordinator for Neuronet, opened his presentation by providing an overview of the project and its role in supporting the neurodegeneration portfolio of the second IMI.

He elaborated that Neuronet aimed to better support and integrate 16 different projects underlying conditions, such as Alzheimer’s from the IMI neurodegeneration disorders disease. In relation to how dementia is under- portfolio, boosting synergy, preventing prostood, Dr Hansen briefly outlined some of the jects from working in isolation, identifying changes in recent years, including develop- gaps across the neurodegeneration portfolio ments in pre-symptomatic detection and and enhancing the visibility of the findings development of new ways of detecting the of projects. condition (e.g. through biomarkers) shifting the focus in relation to diagnosis and detec- He then provided an overview of the current tion of the disease. landscape in relation to research projects on neurodegeneration within the IMI portAlzheimer Europe co-hosted the lunch debate with the NeuHe further highlighted that the focus of folio. In particular, he explained the complex ronet Coordination and Support Action research had not solely been on basic science nature of the five key components which On 18 February, Alzheimer Europe held its first or drug discovery, but also on how health impact upon each project: Targets; Timeslunch debate of 2020, entitled “The Innova- records and data can be better utilised to cales; Knowledge; Hierarchies; and, Funding. tive Medicines Initiative (IMI): Advancing facilitate high quality research. However, this Within the IMI projects, Mr Díaz noted that Alzheimer’s research through public-private had also led to the need for data and infor- this translated into hundreds of institutions partnerships”. The lunch debate was organ- mation generated to be better coordinated, and thousands of researchers, each bringised by Alzheimer Europe, in partnership to ensure data did not remain fragmented ing their own considerations with regards to with the Neuronet Coordination and Sup- and difficult to access. these five areas. port Action. A total of 70 people attended the debate, including national member organisations, members of the European Working Group of People with Dementia (EWGPWD), academics, industry representatives and policy makers. Christophe Hansen, MEP (Luxembourg), Vice-Chairperson of the European Alzheimer’s Alliance (EAA), opened the session, welcoming attendees and thanking them for taking the time to attend the meeting. He acknowledged that dementia should be a research priority since there is no disease modifying treatment and no cure for the 4 Dementia in Europe

(left to right) Pierre Meulien, Bart Vannieuwenhuyse, Christophe Hansen, MEP, Jean Georges and Carlos Diaz

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Neuronet therefore aims to avoid a top-down approach, instead operating a “switchboard” model, connecting people, tools and technologies, as well as supporting synergies between projects. As part of this, a just in time approach ensures timely linkages between projects and their outputs, aligning to other projects which may have related or relevant work. Mr Díaz outlined the governance structure of Neuronet, setting out the roles of the Scientific Coordination Board (SCB), the Working Groups (WG) and Task Forces (TFs). He explained that the SCB is composed of leaders of the IMI projects, who set the overall direction and strategy for Neuronet. He further outlined the role of the four thematic WGs which contain expert members from the projects and which are tasked with drafting guidelines and white papers on the subjects of data sharing and reuse, regulatory issues, ethics and patient privacy, and sustainability. Finally, the TFs are designed to be small cross-project teams which will implement specific work on synergies within a set time frame.

Lenny Shallcross of the World Dementia Council speaks to Alzheimer Europe Vice-Chairperson Charles Scerri

try and lead) and which cultivate a problem solving culture.

The project had three components: EMIF-Platform; EMIF-Metabolic; and, EMIF-AD. The overarching platform aimed to The European Medical Information develop a framework for evaluating, enhancFramework ing and providing access to human health data across Europe, whilst also supporting Bart Vannieuwenhuyse, the Senior Director of the condition-specific areas of obesity and Health information Sciences for Janssen, pre- Alzheimer’s disease. sented on the European Medical Information Framework (EMIF) project, which had been For the EMIF-AD component of the proundertaken as part of the IMI 1 partnership. ject, the goal was to identify predictors and diagnostic biomarkers for AD; idenA key area of work for Neuronet is the devel- This project stemmed from recognition of the tify and link AD cohorts; define phenotypes opment of a knowledge base, a resource many silos of data which were not being uti- and develop a prediction model for cogniproviding an overview of projects and activ- lised in an optimal way for research. The work tive decline; and, acquire data to discover ities within the IMI neurodegeneration was a precursor for and provided much of the biomarkers and genetic markers for pre-deportfolio in the form of a dashboard. As part data and infrastructure for later projects and mentia AD. of this, an asset map will provide a visual programmes, such a Big Data for Better Outoverview of the outputs of each project. comes (BD4BO). Mr Vannieuwenhuyse described the AD Catalogue, which had been developed as part of Mr Díaz concluded by noting that the future Mr Vannieuwenhuyse outlined the EMIF pro- the project to create a publicly available tool landscape should be one where there are joint ject, which ran between 2013–2017, involving allowing researchers to find AD cohorts of perspectives, embedded ideas of leadership 58 partners from 14 European countries and interest based on cohort metadata, aiming (which recognise that not everyone has to had a total budget of EUR 56 million. to stimulate the re-use of data and establish

A total of 70 people attended the lunch debate

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new research collaborations, as well as providing a comprehensive overview of all available AD cohorts, with tools to search, select, and compare different AD cohorts.

Dr Meulien continued by noting that about 20% of active IMI projects have patient organisations as full partners, about 50% have a strong patient voice (either as full partners or through having a role in the He further explained the AD cohort explorer project) and about 30% have patient organprocess which allows for group level queries isations represented on advisory boards to identify subjects and variables of inter- or have consulted with patient organisaest, on harmonised datasets, in addition to tions. He also noted that IMI had developed enabling researchers to easily find the right a pool of patient experts, 118 patients and subjects, stimulating and facilitating the 39 family carers, including 3 members of re-use of AD cohort data. Key to this area of the EWGPWD. work was the common data model of variables, which is also compatible with projects He articulated the IMI as an ecosystem for such as the European Prevention of Alzheim- innovation, allowing for multi-sector and er’s Dementia (EPAD) project. multi-disciplinary engagement at the forefront of cutting-edge research, providing the Mr Vannieuwenhuyse also highlighted the necessary scale for funding, expertise, knowlEMIF 1000 cohort, which aimed to establish edge, skills and resources. large sample sets for biomarker discovery in EMIF-AD, by re-using data and samples The difference in the funding mechanisms of existing AD cohorts spread over Europe. between IMI 1 and IMI 2 was explained, with In doing so, this created a digital cohort of a new concept of “Associated Partners”, over 1000 people, incorporating data from providing an opportunity for other organMRI scans, Cerebrospinal Fluid (CSF), DNA pro- isations to contribute to and play an active filing and amyloid measurement. This digital role in the research programme, with 36 cohort continues to be used by researchers, having done so, contributing over EUR 200 even after the conclusion of the project. million, so far.

In relation to the dementia portfolio specifically, Dr Meulien highlighted AETIONOMY, EMIF, EPAD and AMYPAD as some of the most prominent and successful projects. Respectively, these projects address issues around the underlying cause of dementia, the risk factors in developing the condition, improving clinical trial design and the uses of brain scanning. In concluding his presentation, Dr Meulien outlined some of the broad themes which have so far emerged in relation to a future public-private partnership on health. The focus will go beyond medicines development, with prevention and early detection at its core, as well as integrating big data and digital solutions. Additionally, he explained that the voice of patients and citizens would continue to be prominent within the future collaboration. Open discussion

An open discussion followed, with attendees raising questions and comments. Nelida Aguiar, supporter of Idalina Aguiar from the EWGPWD, shared her experience of struggling to participate in research due to her location on an island and urged the panellists to ensure that people in rural areas and The presentation concluded by highlighting In relation to neurodegeneration, Dr Meu- islands were able to participate. a successor project to the EMIF, the European lien noted that diagnosis and therapeutic Health Data and Evidence Network (EHDEN), research had shifted earlier in the disease Lenny Shallcross, Executive Director of the which aims to harmonise 100 million health process, moving the focus towards the World Dementia Council (WDC), addressed records, create an ecosystem of certified har- pre-symptomatic diagnosis based on bio- the issue of the difference between the monised data sources and create a system of logical aspects of the condition. Long term, messaging for people with a diagnosis of federated analytics. this shift will continue as developments are dementia and those at future risk of develmade into pre-symptomatic risk prediction. oping the condition. Dr Meulien noted that Neurodegeneration in the Innovative Medicines Initiatives Pierre Meulien, the Executive Director of IMI, presented on the work of public-private partnerships in neurodegeneration research to date, as well as looking towards future collaborations. The presentation highlighted that the nature of the IMI partnership was unique and that it was unlikely that such a collaboration would be possible elsewhere in the world. It was explained that the IMI portfolio covers many different areas of work including brain disorders, drug discovery, cancer and data knowledge and management, amongst others. Members of the European Working Group attended the lunch debate

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The discussion also covered the sustainability and legacy of projects after the initial period of funding, with the suggestion of an approach with national “nodes” contributing funding to ensure continuity. Mr Díaz proposed longer funding periods of 10–15 years, with clearer targets for deliverables or objectives which would have to be met at set intervals. Christophe Hansen addressed questions to each of the presenters, asking: y Mr Vanniewenhuyse how data sharing could be facilitated given the difficulty Alzheimer Europe launched two reports at the lunch debate with data which was often coded, prohealth systems are not currently sustainatected or subject to IP rights ble and discussion around prevention must y Mr Díaz how collaboration could be be part of the discussion around dementia. encouraged more widely, beyond Europe, for issues which had a global impact Chris Roberts, Vice-Chairperson of the EWG- y Dr Meulien for his thoughts on the future PWD, spoke of the need to start at school of the UK within the Horizon Europe and to educate young people in relation to research programme. dementia. Mr Vanniewenhuyse reiterated the imporJean Georges, Executive Director of Alzheimer tance of public-private collaborations but Europe, asked what could be improved for noted that research in this area was still in future research projects and programmes. its early stages, with new science and new Dr Meulien highlighted the need to have therapeutic interventions needed. He noted more small and eastern European countries that as progress was made towards a treatinvolved in projects. Mr Vannieuwenhuyse ment, it may lead to stronger collaboration noted that there was a need to find a better and greater sharing of data. balance on reporting for projects, as well as a better way of establishing consortia between Mr Díaz noted that too often researchers/ public and industry partners. organisations approached research in terms

of possessing data, research, etc. and that there was a need for projects such as Neuronet to play an ambassador role, emphasising the mutual benefits of collaboration. Dr Meulien commented that Horizon 2020 would continue to fund UK partners for the duration of the projects, not just until the end of the transition period. He noted that as the UK received 25% of all IMI money, coupled with the research expertise in the UK, Brexit was a lose-lose situation for the future programme. Launch of Alzheimer Europe reports Jean Georges launched two reports at the meeting: the Dementia in Europe Yearbook 2019 on the prevalence of dementia and a discussion paper entitled “Overcoming ethical challenges affecting the involvement of people with dementia in research: recognising diversity and promoting inclusive research”. Closing remarks Charles Scerri, Vice-Chairperson of Alzheimer Europe, brought the session to a close by thanking attendees and speakers for their contribution to the event. Christophe Hansen, MEP reflected on the need to reduce the fragmentation in research, as well as maintaining significant funding in the future of research at the European level.

Acknowledgements AE gratefully acknowledges the corporate supporters which contributed to the organisation’s activities as gold and silver sponsors: Biogen, Lilly and Roche. The Neuronet project has received funding from the Innovative Medicines Initiative 2 Joint Undertaking (JU) under grant agreement No 821513. The JU receives support from the European Union’s Horizon 2020 research and innovation programme and the European Federation of Pharmaceutical Industries and Associations and Parkinson’s UK. Any information in this article solely reflects the author’s view and neither IMI nor the European Union, EFPIA, or any Associated Partners are responsible for any use that may be made of the information contained herein.

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Christophe Hansen, MEP – Innovation and research are key if we want to fight diseases such as dementia and Alzheimer’s As Vice-Chairperson of the European Alzheimer’s Alliance, I was honoured to host Alzheimer Europe’s lunch debate on research collaborations at EU level. New numbers from the Alzheimer Europe Yearbook 2019 report on the prevalence of dementia in Europe finds that even though a reduction in the prevalence of dementia can be observed, the number of people with dementia is set to double by 2050. Demographic changes are among the main reasons for this increase: The population in Europe is getting older. Consequently, more people are likely to get Alzheimer’s disease or dementia. Today, there is no cure or disease modifying treatment for Alzheimer’s or dementia. For this reason, they must be a priority when it comes to research and the development of new medicine or treatment. Innovation and research are indeed key if we want to fight diseases such as dementia and Alzheimer’s. Therefore, we also need better cooperation between researchers in the EU.

However, the Initiative has also made clear that cooperation and the exchange of data and information are just as important. Sharing findings from research and working together on innovative projects, Neuronet and EMIF have shown how collaboration can work.

quite challenging in the current political and economic context. The UK, one of the biggest net contributors to the EU budget has left the European Union, global challenges such as climate change and trade tensions with the US and China are a strain on Members States economies.

The Coronavirus crisis has put additional stress on the EU. At the same time, these challenges call for an ambitious EU budget in order to tackle them as a Union. Unfortunately, many Member States are reluctant to raise their contributions. It is Over the past decade, the Innovative Medtherefore of utmost importance to ensure icines Initiative (IMI) has already proven to The successful continuation of the initi- that the budget for Horizon Europe is not be a successful tool for public-private part- ative however requires sufficient funding. reduced. If the Coronavirus pandemic has nerships. Through cooperation between The negotiations on the Multiannual made one thing clear, it is that funding for the European Union and private partners Financial Framework (MFF) 2021–2027 are innovation and research are essential in in the pharmaceutical industry, better and therefore essential. Discussions are cur- order to support a health sector which is safer medicine is being developed. rently ongoing and have proven to be able to react to new challenges.

“

It is good to see that this flagship, established under the EU Horizon programme for Research and Innovation, is working and that there will be a successor, the “European Partnership for innovative health” under the new Horizon Europe.

Innovation and research are indeed key if we want to fight diseases such as dementia and Alzheimer’s. Therefore, we also need better cooperation between researchers in the EU.”

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Patient and Public Involvement in research In early 2020, an article entitled “Our reflections of Patient and Public Involvement in research as members of the European Working Group of People with Dementia” was published in the journal Dementia. Alzheimer Europe spoke to three of the co-authors – Chris Roberts, Helen RochfordBrennan and Jayne Goodrick – about the article and about their own experiences of PPI. Since 2012, when the European Working Group of People with Dementia (EWGPWD) was set up, Alzheimer Europe has increasingly involved people affected by dementia in Patient and Public Involvement (PPI) activities, in particular in the context of large European research projects. In 2017, and in collaboration with the pan-European network of researchers, INTERDEM, Alzheimer Europe and its EWGPWD developed a position paper on PPI in dementia research. The position paper was approved by the Boards of Alzheimer Europe and INTERDEM and published in an academic Journal (Aging and Mental Health) so that other organisations could use or adapt it. The 2017 position paper highlighted seven key areas

“

It is very important for experts by experience to be involved in all relevant research and that they are given what is their right: a say in what and how research is undertaken. Our inclusion in PPI provides a unique and valuable perspective of the lived experience.” Chris Roberts

which form a framework for the development, which tend to receive less attention in the litimplementation and monitoring of PPI work erature. Based on their own preferences and in the context of dementia research. interests, each person affected by dementia decided to review one of them. In the article: As a follow up, in early 2020, a new article entitled “Our reflections of Patient and Pub- y Chris Roberts presents his experience lic Involvement in research as members of and views on the issue “Recognition and the European Working Group of People with acknowledgement of the contribution Dementia” was published in an international made by people with dementia” peer-reviewed journal (Dementia). The arti- y Helen Rochford-Brennan presents her cle was co-authored by Chris Roberts, Helen experience and views on the issue “ProRochford-Brennan (both living with demenmoting and protecting the rights and tia and members of the EWGPWD), Jayne well-being of people with dementia” Goodrick (supporter, Chris’s wife) and Dianne y Jayne Goodrick presents her experience and Gove, Ana Diaz and Jean Georges (Alzheimer views on the issue “Training and support” Europe staff). To write the article, all the co-authors worked together and identified The article was selected by the website comthree of the seven areas of the framework mittee of INTERDEM as the January ‘article of the month’, due to its relevance for researchers working in dementia.

Chris Roberts, first author What did it mean to you to be first author of this peer-reviewed journal article and how important was it, for you, to write such an article, recognising and acknowledging the contribution made by people with dementia, in the area of PPI?

Helen Rochford-Brennan (L), Chris Roberts and Jayne Goodrick (R) attending Alzheimer Europe lunch debate, 10 December 2019

It was and always is a great pleasure and experience to work with Alzheimer Europe as a member of the European Working Group of People with Dementia (EWGPWD) and it was a real honour to be asked to be the lead author on this journal article. Usually we, as people living with dementia, are asked for advice, feedback and comments for articles but hardly ever are we asked to Dementia in Europe 9

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“

be lead authors. It is an important stateEquality is critical during PPI. People living with dementia need ment that people living with dementia are to be equal partners – we must be listened to and have shared still capable members of our society after their diagnosis. It is very important for power for decision making. An integral part of this is appropriate experts by experience to be involved in all support to participate.” relevant research and that they are given what is their right: a say in what and how Helen Rochford-Brennan research is undertaken. Our inclusion in PPI provides a unique and valuable perspective of the lived experience. to review documents, travel and expenses. This peer reviewed article showed just how Equality is practical as well as theoretical! intelligent and capable people with dementia Papers such as this are an important can still be. Dementia does not compromise reminder to continue to include and pro- Can you also comment on the principle of your intelligence. Chris has retained many of mote the collaboration of people with involving people with dementia as authors his cognitive abilities and I am still astounded dementia. Such papers also serve to inspire and co-authors in peer-reviewed journal by his ability to work around any difficulties other experts by experience to also take part articles? he encounters in that respect. in PPI and to assure them of the value of their potential contribution. This is important for recognition. If our work It is for these reasons that PPI is so vital. We on the project is important, then we need to can demonstrate that whatever assumpHelen Rochford-Brennan, co-author be involved in writing up the work. I believe tions people may have about dementia, there are clinical experts, academic experts and about all those affected by dementia, As a co-author of this article, can you tell and experts by experience. People with are just assumptions and do not apply in us more about one of its main focal points: dementia are experts by experience. If you each individual case of dementia. It is espepromoting and protecting the rights and leave out one group of experts, the article cially important that organisations, which well-being of people with dementia tak- will be the weaker for it. are producing or developing products and ing part in PPI? services for the very people who will be the I find a great joy in collaboration and the writ- beneficiaries of those products and services, For too long, people living with dementia ing process, but I need support to do that. It understand this basic concept.” have been involved in research by simply is really important to have practical support answering questions. However, to ensure to consider ideas and type them up. You can read the full article on PPI here: that we are represented and that our voices www.bit.ly/PPI-article are heard, we need to set the question and On a personal level, being involved gives me have a seat at the table when that question a wonderful hope and a sense of purpose. is being refined. Getting recognition is empowering, not just for myself, but for others, in particular those Equality is critical during PPI. People living newly diagnosed. with dementia need to be equal partners – we must be listened to and have shared power Jayne Goodrick, co-author for decision making. An integral part of this is appropriate support to participate – support As a co-author of this article, can you give us some insights into your personal and ongoing experience of PPI? The EWGPWD was launched by PPI is so vital. We can Alzheimer Europe and its member demonstrate that whatever I was extremely pleased and very proud to associations in 2012. The group is be asked to contribute to this article. As carcomposed entirely of people with assumptions people may have ers, we can sometimes be overlooked. That’s dementia, nominated by their national about dementia, and about all nobody’s fault, just the way it is, so to be Alzheimer associations. They work to those affected by dementia, are included meant so much. It is particularly ensure that the activities of Alzheimer important as people with dementia are often Europe duly reflect the priorities and just assumptions and do not considered incapable of anything, even today. views of people with dementia. apply in each individual case of As my husband Chris says, there is a begindementia.” ning and a middle before you get to the late www.bit.ly/EWGPWD stages of dementia.

“

Jayne Goodrick

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EURO-FINGERS: Europe at the forefront of Alzheimer’s dementia prevention

we have 7 countries involved, but we envision the consortium will grow over time and include more nations. What are some of the main challenges you are facing with this research?

AD and dementia prevention is a relatively new field, and we have learned from other recent multimodal prevention RCTs that there is no “one-size-fits-all” solution. Late-life AD is a complex and heterogeneous disorder. Only by deciphering this complexity and heterogeneity, can we find effective preventative solutions. We need to implement Precision Prevention, which means defining preventive strategies tailored to specific risk groups, identified by clinical and biological features and environmental risk factors exposure. To achieve this, What are the concrete objectives and actions EURO-FINGERS will leverage unique Eurothat will be undertaken by the project? pean long-term data from observational studies and RCTs, covering the full spectrum EURO-FINGERS builds upon the successful from at-risk states to early-symptomatic AD. experience of FINGER: the Finnish Geriat- These studies provide multidimensional ric Intervention Study to Prevent Cognitive data (lifestyle, clinical, genetic, omics), that Impairment and Disability (led by Prof. Kivi- will be analysed with novel AI-based methpelto, Ed.). In this pioneering RCT, we ods, able to translate complex and large data demonstrated that a 2-year multimodal life- into fingerprints of individual AD risk and style intervention consisting of nutritional prevention potential. guidance, exercise, cognitive training, and control of vascular risk factors benefitted Precision Prevention is already developed cognition in senior community dwellers at in oncology, and we are learning from this increased risk of dementia. In EURO-FINGERS, field. In progressing Precision Prevention we aim to develop tools to advance, optimise strategies for AD dementia, we focus on and scale-up the FINGER model across Europe. the “what”, which risk factors to target , These tools include methods to accurately the “why”, the biological mechanisms that measure the level of AD risk in seniors, as mediate prevention effectiveness , and well as their prevention potential, in order to the “how”, the most cost-effective impleidentify subjects with different risk profiles, mentation approaches. Indeed, another who are more likely to benefit from specific big challenge is that Precision Prevenpreventative interventions. tion strategies must be developed and implemented in ways that will make them We will also develop an innovative RCT accessible to all who may benefit from model, where for the first time, multimodal them. This is especially important as the lifestyle interventions can be tested in com- sustainability of many healthcare systems bination with drugs that might halt AD. can be challenged by acute crises such as Although no disease-modifying drug has the current pandemic. In EURO-FINGERS we so far been approved for AD, we are working have unique ready-available long-term data to identify medications that can synergise from prevention RCTs, that can be used for with the benefit of the multimodal inter- cost-effectiveness analyses, to assess the vention. Additionally, we will build the sustainability of prevention strategies in EURO-FINGERS online registry, which will targeted populations who are most likely facilitate the recruitment of participants to benefit. in AD prevention RCTs across Europe. So far,

Alzheimer Europe is part of the newly-launched JPND project “EURO-FINGERS: multimodal precision prevention toolbox for dementia in Alzheimer’s disease”. We spoke to Professor Miia Kivipelto, scientific coordinator of EURO-FINGERS, to discuss the project’s aims and expectations at the time of the COVID-19 pandemic. The EURO-FINGERS project starts at a historical moment for Europe and many other world regions, which are focused on halting the COVID-19 pandemic while ensuring adequate medical care of people with chronic non-communicable disorders (NCDs), who are mostly seniors. Older adults are a large and fast-growing portion of the population; they are the most vulnerable to the SARSCoV2 infection, and they also have increased risk to develop Alzheimer’s disease (AD) and dementia. Curative drugs for dementia and AD are not yet available, and repeated negative results of randomised controlled trials (RCTs) testing pharmacological interventions make the timeline for a cure uncertain. Prevention for AD and dementia has been identified as a global public health priority. In this landscape, the EURO-FINGERS project brings together European top researchers to develop the next generation of RCTs for the prevention of AD dementia. EURO-FINGERS is supported by the EU Joint Programme – Neurodegenerative Disease Research (JPND), the largest global research initiative aimed at tackling the challenge of neurodegenerative diseases. EURO-FINGERS officially started on 1 March 2020 and is a 3-year project. Alzheimer Europe is a key partner in this project and is contributing towards the patient and public involvement and communication activities. Alzheimer Europe will also have a key role in the scientific dissemination of the EURO-FINGERS results to key stakeholders and the general public.

Dementia in Europe 11

ALZHEIMER EUROPE

What are your expectations from and hopes for the project, also bearing in mind the current pandemic? The AD research field is heavily affected by the COVID-19 outbreak, with many activities being delayed or paused. In EURO-FINGERS, a large amount of data is already available, and activities have started as planned. Depending on how the pandemic and its control measures will evolve, we will adapt to prevent and minimise delays in delivering the project.

As an example, we will develop e-tools (e.g., remote visits, online surveys) suitable for seniors with cognitive impairment, and the PPI activities led by Alzheimer Europe will ensure inclusion of the users’ preferences. How will this project collaborate with other projects in the field?

EURO-FINGERS follows another successful JPND-funded project, MIND-AD, in which we tested for the first time the feasibility of a multi-domain intervention in subjects with EURO-FINGERS synergises and builds upon early-symptomatic (prodromal) AD. Many of cutting-edge studies to produce crucial knowl- the MIND-AD consortium members particiedge for effective and sustainable prevention. pate in EURO-FINGERS, and they collaborate The project will bridge the gap between also within the IMI-EPAD project, a large non-pharmaceutical and pharmaceutical trials European initiative focused on AD demenby designing the first combined lifestyle + drug tia prevention, with relevant insight on large prevention RCT protocol. Additionally, through cohorts and RCT design for early stages of AD. the creation of EURO-FINGERS online registry, we can address the recruitment challenges in Overall, EURO-FINGERS brings forward a AD trials. Finally, thanks to the JPND widen- successful research pipeline through a well-esing concept, the EURO-FINGERS consortium tablished European network. EURO-FINGERS includes Hungary, often under-represented will provide a common framework and align in this research field. In the future, we aim to the main European cohorts in the AD field, expand the consortium so that more European to deliver results easily implementable in countries can participate in harmonised efforts Europe. Additionally, EURO-FINGERS is closely for AD prevention. linked to the recent World-Wide FINGERS initiative (WW-FINGERS, led by Prof. Kivipelto, In relation to the current pandemic, we expect Ed.), aiming to test the FINGER multimodal that EURO-FINGERS results can benefit the precision prevention model in various geomanagement of risk factors, including NCDs graphical, cultural and economic settings (e.g., hypertension, diabetes) and lifestyle-re- (e.g. trials now in the planning stage in lated factors (e.g., diet, physical activity), Europe, North and South America, Asia and which are relevant to AD dementia but also Australia). EURO-FINGERS represents the scito the overall morbidity burden of seniors. entific engine of WW-FINGERS, providing tools The pandemic has negative effects on the and methodology that ensure synergy, harmanagement of all these factors, because of monisation, and more effective and targeted changes in the functioning of the healthcare interventions across WW-FINGERS trials, ultisystem, seniors being reluctant to seek care mately leading towards the identification of due to infection risk, and lifestyle changes due globally effective prevention strategies. to the outbreak control procedures, such as limited physical activity due to home isolation. How will this project benefit people at risk In this context, EURO-FINGERS is a very timely of Alzheimer’s disease dementia? project which can inform sustainable healthy lifestyle and management of NCDs in seniors, According to a recent Alzheimer Europe with benefits beyond AD dementia prevention. report, despite a reduction in the age-specific Acknowledgement Eurofingers is an EU Joint Programme-Neurodegenerative Disease Research (JPND) project and is supported by the Luxembourg national research fund (FNR). The project code is INTER/JPND/19/BM/14012609

12 Dementia in Europe

prevalence of dementia, the total number of affected individuals in Europe is expected to double by 2050, consistently with global estimates. Current data suggest that about 1 in 3 cases of AD may be attributable to modifiable risk factors, including lifestyle, metabolic and vascular factors. This indicates the presence of a prevention potential, which might be even larger than the current estimates. Results from EURO-FINGERS are expected to benefit people at risk of AD dementia by creating knowledge on effective and sustainable prevention strategies for seniors, as well as a solid framework for AD prevention Europe. This includes a tool (EURO-FINGERS online registry) to easily direct research-interested citizens/patients to the most suitable prevention trials. Furthermore, through their active engagement in EURO-FINGERS, individuals at risk (or at early-stage) of AD dementia are empowered by integrating their views and preferences in guidelines on how clinicians should disclose the at-risk status. The project will also identify strategies for shared decision-making to improve patients’ and caregivers’ involvement in the diagnostic process and the choice of preventive strategies, ultimately bringing dementia prevention closer to society in general. EURO-FINGERS project partners Karolinska Institute, Sweden (Coordinator); Alzheimer Europe, Luxembourg; Combinostics Ltd., Finland; Finnish Institute for Health and Welfare, Finland; IIS Instituto Hospital del Mar de Investigaciones Mèdicas, Spain; National Institute of Clinical Neurosciences and Semmelweis University, Hungary; Saarland University (Germany); VU University Medical Centre, Netherlands. Contact info for EURO-FINGERS miia.kivipelto@ki.se francesca.mangialasche@ki.se

ALZHEIMER EUROPE

ADAIR: Examining the link between air pollution and dementia Using the most advanced research methods, models and cohort studies, the ADAIR project hopes to unravel the link between air pollution exposure, brain health and Alzheimerâ&#x20AC;&#x2122;s disease (AD), with the end goal of finding ways to identify at-risk individuals and to prevent the disease. Alzheimer Europe spoke to project coordinator Katja Kanninen to learn more.

What are the concrete objectives and actions that will be undertaken by the project? Despite some progress in the field, many questions remain unanswered as mechanistic information on air pollutant effects in brain is scarce. Importantly, biomarkers for air pollution and AD risk prediction do not currently exist, thus hindering the identification and stratification of individuals at risk for harmful air pollution effects. Researchers involved in the highly innovative ADAIR project will use the most advanced research methods, models and cohort studies to unravel the link between air pollution exposure, brain health and AD.

The ultimate goal of the project is to develop strategies for early identification of people at risk of developing AD, and to discover new approaches for disease prevention. For this According to Katja Kanninen, Alzheimerâ&#x20AC;&#x2122;s dis- (PM). Yet, epidemiological studies and con- purpose, ADAIR uses three clinical, populaease (AD) is a devastating disorder without a trolled animal studies show that exposure to tion cohorts: 1) Betula Study in Sweden, 2) cure, but remarkably little attention is paid air pollutants also impairs the brain. Recent Rotterdam Study in the Netherlands, and to the involvement of environmental factors epidemiological research demonstrates a 3) the Pearl River Delta study in China for in AD research. link between cognitive dysfunction/AD and in-depth investigation of pollutant effects exposure to high levels of air pollution in in healthy individuals as well as those diagAir pollution, a massive public health issue, is humans. Inhalation exposure to diesel engine nosed with AD. In addition to using these an important, ever-increasing global concern. exhaust or PM has been shown to aggravate three large population-based cohorts, ADAIR Every year, about 7 million premature deaths AD-like pathology in mice. However, detailed utilises highly translational human-based in from cardiovascular and respiratory condi- understanding of the connection between air vitro research models for biomarker discovtions occur as a direct result of exposure to pollution and AD does not exist. ery and functional studies. The clinical and air pollutants, especially to particulate matter in vitro data will be combined using emerging new technologies including integration of omics in a systems biology platform, for the identification of novel biomarkers for air pollutant effects and risk prediction. This will allow us for the first time to identify altered molecular and functional interactions, and key pathways associated with air pollutant effects and AD for better understanding of this complex disease. What are some of the main challenges you are facing with this research?

ADAIR consortium at kick-off meeting in Prague, Czech Republic, 16 January 2020

One of the main challenges in this research is deciphering which exact type of air pollution exposure is harmful for brain health. The duration and level of exposure are likely to be critical in determining the consequences on health. In addition, deciphering how genetically determined predisposing factors may play a role in the risk of health impairment is another complex challenge that requires intensive investigation. Dementia in Europeâ&#x20AC;&#x192; 13

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What are your expectations from and hopes for the project? We expect that this project will produce important information on the impact of air pollution exposure on brain health. We hope that this information can in the future be used for identification of at risk individuals and for preventive interventions. We also hope that the information generated during the project will generate strong interest within relevant stakeholder communities both in Europe and beyond, including policymakers, health and safety sector, patients and advocacy groups, and research communities.

The results of the project can be used to make informed decisions that create better and safer settings and policies for protection of human health.

impact on air quality project called “Transport derived Ultrafines and the Brain Effects” (TUBE), which started in May 2019 and continues until April 2023.

How will this project collaborate with other EU projects in the field?

How will this project benefit people with dementia?

ADAIR is a multi-national collaboration between neuroscientists, environmental scientists, clinicians, epidemiologists, informaticians, and non-profit organisations. We collaborate with several national and international projects in the field, most notably with the InCo flagship on reduction of transport

We hope that the results of this project will in the future aid in early identification of individuals at risk of air pollution effects. We also hope that the results will lead to increased understanding of AD disease mechanisms that can form the basis for new therapies in the future.

Acknowledgement The ADAIR project is funded under the 2019 JPCO-Fund call for Personalised Medicine under the grant number, JPND2019-466-037 . ADAIR is funded from 2019 to 2022.

14 Dementia in Europe

Contact info for ADAIR Katja.Kanninen@uef.fi @ADAIRjpnd www.adair-jpnd.eu/

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Iceland launches first national dementia strategy Following the publication of Iceland’s first national dementia strategy in April 2020, Alzheimer Europe spoke to Icelandic Minister of Health, Svandís Svavarsdóttir, about the strategy and to Árni Sverrisson, Chairperson of Alzheimer Iceland, about their response to the strategy how it aims to change the lives of people with dementia and their carers. It is fantastic that Iceland has launched its dementia strategy – what was the key driver for the development of the strategy? Iceland has a long history of specialised services for people who are diagnosed with dementia, with many specialists – geriatricians, nurses, social workers and psychologists – working in this area. The country’s first specialised day-care centre for people with dementia was established more than 30 years ago; this was a progressive move in international comparison, and still is. In spring 2017, a parliamentary resolution was adopted by the Althingi (the Icelandic Parliament), commissioning the Minister of Health to draw up a strategy on persons with dementia; this was to include raising public awareness and understanding of the issues, give greater prominence to the gathering of statistics, encourage focused research programmes and launch a campaign aimed at greater quality of care for what is a rapidly growing patient group in the community. The resolution received cross-party support and the creation of the strategy was adopted as one of the priorities of the government that took power at the end of 2017.

and their families from the time of diagnosis to the end of the patients’ lives. Emphasis is also placed on individually tailored, non-institutional services which take account of the needs of the individual and the family, both as regards daily training services and services in the home.

Priority is given to upgrading education and awareness of dementia for staff in both primary health centres and nursing homes, and on improving people’s health literacy. One important aim is to establish, and then use, a range of treatment methods including art and handicraft therapy of various types. The strategy includes setting up a database on Snædal, to draw up a policy draft. He submit- dementia disorders, with an emphasis on ted his report in summer 2019. This was then integrating and coordinating services. In placed in a web consultation portal where Iceland, social services come under local anyone could submit criticisms, comments government, while all health services are and suggestions on it. Contributions were the responsibility of central government. The received from the main stakeholders, includ- division has long meant that certain admining healthcare professionals and Alzheimer istrative complications have to be dealt with, Iceland; these were of great value in formu- and here, it is essential to integrate services lating the strategy. Work then followed on as far as possible. drawing up an implementation schedule based on the proposals in the report and the Does the strategy have a dedicated budget comments received. The strategy has now to implement its objectives/commitments? been unveiled. The strategy covers a five-year period, ending Can you give us an insight into some of the in 2025, and the aim is that all components key areas of focus for the strategy? in it will be funded during this time. Many of them do not entail great expense, being The key points in this strategy could be said centred rather on shifts in emphasis in colto be the same as those in other countries. laboration between parts of the health and They include seamless support for individuals social service infrastructure that already exists.

In spring 2019, I submitted to the Althingi the Health Policy until 2030, which was passed unanimously. It is on the basis of that policy that strategies in individual areas are being developed. Work on a strategy on persons with dementia began early in 2019 when I commissioned one of Iceland’s most respected geriatricians, Jón

Icelandic Minister of Health, Svandís Svavarsdóttir

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Icelandic Dementia Strategy

dementia takes in patients and how it affects clients and service-providers in their day-today work, and also how service-providers can best deal with patients and clients.

knowledge of, the plight of dementia patients and their families. Our strategy is, first and foremost, a matter of integrating these various factors.

Alzheimer Iceland has also been commissioned to set up peer-to-peer educational programmes on dementia in nursing homes, whereby non-specialised employees can share their knowledge and experience, as well as the methods they use in dealing with and caring for patients. It is by no means the case that this knowledge and experience can all be imparted through formal study and training; personal elements play a large role in positive and successful handling of dementia patients. It is important to harness this knowledge on the part of non-specialist staff in a deliberate way and to make sure that it is shared by other staff. Alzheimer Iceland has now been entrusted with helping nursing homes to disseminate these insights and skills to workers in all nursing homes.

Further comment from the Minister regarding COVID-19 The current circumstances resulting from the COVID-19 pandemic have forced everyone to re-think priorities in our health services. In Iceland, the emphasis has been on maintaining services to vulnerable groups in the community; for example, we have kept the specialised daily training centres for dementia patients open despite the restrictions on movement and gatherings. Our view is that disruption of these services could quickly lead to a deterioration in the health of the individuals concerned and result in the necessity of more people being hospitalised. This policy was adopted not least in the light of recommendations from Alzheimer Iceland, which operates some of the daily training centres in the metropolitan area. These centres admit up to 20 individuals at a time, which is also the maximum number allowed under the current restrictions on gatherings to combat the COVID-19 hazard in Iceland. Monitoring of elderly people, and those who have not been able to attend the daily training sessions, takes place by phone calls from staff of the social services on a daily basis.

How will the government be monitoring the implementation of the strategy and measuring the impact it has for people? What do you see as being the most important factor in the success of the strategy? The strategy has been set out in an outcome sequence chart where each of the main tar- The strength of this strategy lies in many facget areas is broken down into modules with tors. One of the most important is that all measurable goals. It should therefore be interested parties had the opportunity of takeasy for the Ministry of Health to monitor ing part in designing the strategy by means of implementation of the strategy and assess their contributions via the web consultation its results. We will rely on the involvement portal. Another valuable point is that there is of stakeholders via the consultation portal a high level of general interest in the commuwhen it comes to revising and updating the nity regarding people with dementia, as well strategy at the end of this five-year period. as a broad cross-party consensus in the Alth- So far we have succeeded reasonably well in At that point, it will be possible to arrive at a ingi and in society at large on the importance protecting the older generation from COVIDcomprehensive assessment of what has been of upgrading services to this patient group. 19. It was decided early on to prohibit visits achieved and to identify new priorities. to nursing homes and hospitals and clear International collaboration, both with guidelines were issued for the elderly and Will you work with Alzheimer Iceland and other European countries and, particularly other vulnerable groups. Official guidelines people with dementia to ensure their voices within the Nordic countries, is of immense issued by the authorities in connection with are heard? importance for a small country like Iceland, the pandemic can be found on the website complementing the excellent professionals www.covid.is, including information in varAlzheimer Iceland was actively involved in we have here at home. The infrastructure of ious languages and also information on the drawing up the present strategy by con- our health and social services is strong and age distribution of those who have been diagtributing its comments, and it has already many people take an interest in, and have nosed with the virus and other statistical data. been assigned important tasks in the implementation of the strategy as regards awareness-raising and education, both in the International collaboration, both with other European countries community at large, the administrative sector and, particularly within the Nordic countries, is of immense and in nursing homes. This includes, primarily, the production of educational materials importance for a small country like Iceland, complementing the for public services covering the forms that excellent professionals we have here at home.â&#x20AC;?

â&#x20AC;&#x153;

16â&#x20AC;&#x192; Dementia in Europe

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Árni Sverrisson, Chairperson of Alzheimer Iceland responds to the new Icelandic dementia strategy expected to be fully implemented by 2030 but funding will be ensured for all aspects of the plan by 2025 at the latest. Some elements are already underway, others are in preparation, and there are several Iceland has launched its first dementia elements that need to be launched. The strategy aspects that Alzheimer Iceland has come to, include: education, prevention, workAlzheimer Iceland welcomes the “Action ing with the opinions and wishes of the Plan on Services for Individuals with patient and their relatives, professional Dementia”. assistance of various types and professional and specialised day training centres. The Action Plan is set for the year 2025, and Other major factors that Alzheimer Iceit lists many of the main policies of the land has begun to work on and prepare, association, most notably: Rights of peo- are: ple with Dementia, Education - Information Flow, Friendly Communities, Service Center, New educational programme and Registration of Statistical Information. Alzheimer Iceland has been tasked by the The Action Plan is divided into 6 catego- Minister of Health to initiate peer-to peer ries, which are: education and training on caring for people with dementia. This training will take 1. Self-determination, patient involve- place in Nursing homes for those employment and legal framework. ees who do not have specialised training 2. Prevention. to care for these individuals. 3. Timely diagnosis of dementia in the right place and follow-up after diagnosis. Friendly communities 4. Activity, self-help and support. 5. Proper service based on the level of One cooperation agreement has already dementia. been made with one of the largest munici6. Scope, research, knowledge and skills. palities in the country on the development of a Friendly community and four other Within each subject area in the 6 catego- municipalities have already requested ries, it is defined: What are the Minister’s cooperation with the association on such priorities – what action needs to be taken projects. – what impact it has on society - what will be the situation in 2030. Service Center

scheduled to become a Service Centre. It assumes that the main activities of the association will be housed together with special services for young diagnosed persons with dementia. Now that the Action Plan has become official, the entire work of the association will be much more focused and direct cooperation with the health authorities will increase. All of this makes it easier for people with dementia and their families to know about their rights, hopefully all of them for a better future.

The Action plan will be revised in 2025, The organisation has been in talks with a taking into account the Health Plan until municipality in the Greater Reykjavík area 2030. All 6 elements of the programme are about long-term lease of housing that is

“

The association has been working for many years to come up with a recognised policy on these issues, and this is a major step on the vision of improving and clarifying the rights of this patients group and their immediate relatives. Iceland now joins a group of European nations that have already formulated policies on these issues.”

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Spain publishes national dementia strategy Following the announcement of the Spanish Government towards the end of 2019 regarding the agreement of the country’s national dementia strategy, Alzheimer Europe looks at the content of the strategy and hears from Jesus Rodrigo of Confederación Española de Alzheimer (CEAFA) on their reaction to the strategy. The Spanish Government has published its “Plan Integral de Alzheimer y otras Demencias” (Comprehensive Plan for Alzheimer’s and other dementias), setting out its national strategy to improve the lives of people living with dementia in the country.

Plan Integral de Alzheimer y otras Demencias (2019-2023)

2. The person at the centre of social and health care: prevention, diagnosis and treatment SANIDAD 2019 MINISTERIO DE SANIDAD, CONSUMO Y BIENESTAR SOCIAL

Under the second axis, the strategy sets out measures to enhance the early, accurate and Spanish Dementia Strategy timely diagnosis of dementia by modernisAlthough the Plan was confirmed by the ing the attitudes, techniques and processes Spanish Government last year, at the time involved. As part of this, the Plan identifies institutionalisation of the person and enaof its announcement, it had not been pub- the need to promote good clinical practice ble them to remain within their natural lished and the full details were not known. (including diagnosis, treatment etc.) based environment for as long as possible. Intended to cover a period of four years, the on current available scientific evidence. Plan has four axes along which the actions This section of the strategy seeks to estabof the plan are based. Under these sections, Additionally, the Plan addresses the imple- lish conditions for better knowledge, access 20 “objectives” which outline more specific mentation of dementia prevention strategies and exercise of rights, both for the person action points, detailing how the objectives from the perspective of the current state of with dementia and their informal caregiver, are to be achieved. The four main sections medical and social science. Specifically, it encouraging the incorporation of ethics in of the Plan are: identifies the need for a supportive approach, interventions and the elimination of situawith coordinated social and health care ser- tions of abuse or abandonment. 1. Awareness raising and transformation vices around each person, which should be of the environment specialised and adapted to the needs of the 4. Research, innovation and knowledge person at each stage of the disease. FurtherThe first section focuses on transforming more, it highlighted that such an approach The final axis of the strategy is concerned the societal perception and understanding must be based on the specific condition of with the promotion of biomedical, social of dementia and Alzheimer’s disease, increas- and must enhance the participation and and health research on dementia, particuing the level of knowledge, acceptance and self-determination of the person. larly from a translational research approach. compassion towards people affected by the This will be based on the establishment of condition (both the person with the condi- 3. Rights, ethics and dignity of the person a research framework which is regulated by tion and the informal caregiver). quality and rationality criteria, introducing The third section underscores the impor- scenarios of funding (both public and priIn doing so, the Plan aims to reduce instances tance of measures to improve the vate), optimising the resources available of stigma, rejection and exclusion experienced understanding of the role of informal car- from collaboration and network research. by people with dementia and their carers, so egivers of people with dementia, to ensure The strategy additionally identifies the need that they may continue to have opportunities the prevention of situations of overload to generate information and knowledge to participate and contribute to the commu- and stress. In relation to services, sup- related to the size and situation of people nity in which they live, as full active citizens. ports and benefits, these should avoid the affected by the disease.

18 Dementia in Europe

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Jesús Rodrigo, Executive Director of CEAFA responds to the new Spanish dementia strategy Does the strategy have a dedicated budget to implement its objectives/ commitments?

It is fantastic that Spain has launched its dementia strategy – what was the key driver for the development of the strategy? The first thing to say is that Spain has a Strategy for Neurodegenerative Diseases of the National Health System in which dementia has a special consideration, and the Comprehensive (National) Plan of Alzheimer’s and other dementias 2019– 2023, approved in October 2019. The Plan has been made possible by the involvement of actors from all sectors linked to the approach of this socio-health issues, as well as the central government, through the involvement of the Institute of Migration and Social Services (IMSERSO).

Unfortunately, there is not a budget allocated yet. The political instability that the country has suffered in recent months has made it impossible to have general state budgets, under which the plan should be adequately funded. How will the government be monitoring the implementation of the strategy and measuring the impact it has for people? The State Dementia Group is expected to assume this role, as a continuation of its primary responsibility, which was the development of the Plan. It is assumed that once the budget is approved, the group adapts to the new functions. Will CEAFA work to ensure that people with dementia have their voices heard?

CEAFA has taken an active and responsiAll of them have formed the State Demen- ble role from the outset in the elaboration tia Group, which has developed the plan by of the Plan, making available the knowlputting the person (patient and caregiver) edge acquired during 30 years of history. in the care centre; the Plan has the highest In addition, the Panel of Experts of People political and social consensus. with Alzheimer’s has reviewed, valued and provided its first-hand vision, as representatives of the recipients of the Plan.

What do you see as being the most important factor in the success of the strategy? The Plan has been approved by the territorial and interterritorial councils, which means that it has the clear support of the autonomous communities, ultimately responsible for its implementation. It also has significant social support. However, it must have the necessary budgetary allocation.

“

CEAFA has taken an active and responsible role from the outset in the elaboration of the Plan, making available the knowledge acquired during 30 years of history. In addition, the Panel of Experts of People with Alzheimer’s has reviewed, valued and provided its first-hand vision, as representatives of the recipients of the Plan.”

Dementia in Europe 19

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European Alzheimer’s Alliance (EAA) members reiterate importance of dementia as a European policy priority Following the #DementiaPledge2019 campaign last year, Alzheimer Europe has been working with members to grow the European Alzheimer’s Alliance (EAA). In this article, we provide an overview of the current position of the EAA, as well as speaking to the Chairperson and Vice-Chairpersons for the group. the EAA is to ensure that dementia remains a key area of focus at a European level and to ensure that Members of the European Parliament (MEPs) remain informed about the work taking place in relation to dementia Following its successful #Demen- across the domains of health, research and tiaPledge2019 campaign in May 2019, social policy. Alzheimer Europe has been working closely with its national member organisations to The EAA currently has 94 Members from 26 develop the European Alzheimer’s Alliance Member States of the European Union. As (EAA). Established in 2007, the purpose of part of its engagement, Alzheimer Europe

contacted members of the group who have been active in raising dementia as a policy priority over the years or who had expressed particular interest during the campaign, inviting them to hold the position of Chairperson and Vice-Chairpersons for the group. The following MEPs are currently hold these positions: y Sirpa Pietikäinen, MEP (Finland), Chairperson y D e i rd re C l u n e , M E P ( I re l a n d ) , Vice-Chairperson y Christophe Hansen, MEP (Luxembourg), Vice-Chairperson y Marisa Matias, MEP (Por tugal), Vice-Chairperson y Hilde Vautmans, MEP (Belgium), Vice-Chairperson. In the following section, three of these members outline where they see dementia within the existing framework of the policy work of the EU, and how the EAA and Alzheimer Europe can ensure dementia is prioritised. They also make a specific commitment about how they will do this as parliamentarians.

Sirpa Pietikäinen, MEP (Finland), Chairperson Where do you see dementia fitting within the current agenda and work of the EU? Memory disabling diseases should be kept as a priority in EU’s health agenda in the future as well. Memory disabling diseases like Alzheimer’s should be taken strongly and seriously as a part of disabilities. Thus the disability rights the UN Convention on the Rights of Persons with Disabilities (CRPD) should be guaranteed for memory disabled people also; as well as user-driven design, the right to be heard, the right for self-determination and the right to access to services including digital services and devices, not forgetting inclusion in urban infrastructure and housing.

20 Dementia in Europe

What is your view on the opportuni- support by the Member States to common ties for Alzheimer Europe and the EAA European policy in the Council. to ensure that dementia is prioritised in the work of the EU? What is your personal commitment in this parliamentary term to help ensure Alzheimer Europe is the key spokesperson dementia is prioritised as a policy priority? for memory diseases and people having them, as well as the needs of formal and As the Chairperson of the European informal caregivers. It is the leading actor Alzheimer’s Alliance group in Parliato stimulate political debate in the Euro- ment I am committed to advocating for pean Parliament, European Commission a better understanding of memory disand Council, and guide and propose needed abling diseases and better commitment programmes, actions and projects. to resourcing the research and better services. I will keep on fighting for the The EAA brings together MEPs, memory-dis- constitutional and other human rights abled people, their carers and experts from of memory-disabled people. EU should different Member States in the Parliament. renew its commitment to improving the As well as advocating hopefully for strong research, care, and rights of memory disabling diseases.

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Christophe Hansen, MEP (Luxembourg), Vice-Chairperson Where you see dementia fitting within the existing work of the EU? Dementia is one of the few diseases where there is no cure or disease modifying treatment, but which has far-reaching consequences on health systems. The care for patients with dementia is not only time consuming and expensive, its diagnosis is also a nightmare for the families involved. Finding a cure requires investments in research that cannot be granted by a single company or country alone. EU funding programmes such as the Horizon programme for Research and Innovation are therefore key to allow for better cooperation and exchange between researchers, establishments of private-public partnerships and data sharing.

What is your view on the opportuni- What is your personal commitment in ties for Alzheimer Europe and the EAA this parliamentary term to help ensure to ensure that dementia is prioritised in dementia is prioritised as a policy priority? the work of the EU? As Vice-Chairperson of the European The work of Alzheimer Europe and the EEA Alzheimer’s Alliance I will continue to is vital in raising awareness on this dis- raise awareness among my colleagues ease among European stakeholders. In by supporting and organizing events in order to secure the necessary funding in the European Parliament. Campaigns and light of the discussions on the MFF, repre- other initiatives on social media are also sentatives from the EU Commission, the an important tool to secure support for Council and the European Parliament need the fight against dementia. I will also do to be convinced of the magnitude of the my utmost to ensure support for priordisease and the need to invest in research. itisation of dementia and Alzheimer in Considering the current budget strains due policy strategies and, most importantly, to the Brexit and the unforeseeable conse- to secure the necessary funding in the quences of the Corona pandemic, this will responsible budget committee for indinot be an easy task. On the other hand, the vidual research programmes as well as the current COVID-19 outbreak might become Horizon programme in general. an example of how concerted efforts and allocation of resources might lead to the development of a drug in historical speed.

Hilde Vautmans, MEP (Belgium), Vice-Chairperson Where you see dementia fitting within the existing work of the EU?

Due to huge investment costs and little return on investments, duplication of efforts, resources and funds should be avoided as much as possible and additional As the life expectations of the European incentives to stimulate dementia research population continues to increase, the num- should be considered. Furthermore, the EU ber of older people will rise and with that could support the Member States by raising comes a significant rise in the number of awareness about healthy lifestyles and their people affected by dementia. As there cur- impact on reducing risk factors for many rently is no cure for dementia, this will diseases, including dementia. undoubtedly put a lot of pressure on societies and healthcare systems. What is your view on the opportunities for Alzheimer Europe and the EAA Through its research and innovation frame- to ensure that dementia is prioritised in work programmes, the EU can add value the work of the EU? by supporting joint research into neurodegenerative diseases and data analysis Due to the COVID-19 pandemic, public or by coordinating brain research projects health issues will be high on the political between EU Member States, academia and agenda again. The corona pandemic will industry. But even globally, the EU should be a key driver for increased investments take the lead in fostering joint research into healthcare systems, an adjustment into the causes and possible treatments of work programmes and an update of of dementia, prevention or better care and the EU’s long-term budget for the period in exchanging best practices. 2021–2027.

This could be an opportunity to raise awareness about the challenge of dementia in the context of demographic change, about its huge (economic) burden on societies and hence about the urgent need for increased research efforts and breakthrough innovation. What is your personal commitment in this parliamentary term to help ensure dementia is prioritised as a policy priority? I have witnessed the impact that dementia has, not only on the life of people who suffer from the disease but also on their carers and families. I will contribute to the best of my abilities to ensure that the political attention to dementia is kept up with the scale of the challenge. More specifically, I want to raise more awareness about dementia as one of Europe’s biggest challenges in the context of demographic change and about the importance of patient-centred care and a dignified life for people with dementia. Dementia in Europe 21

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The Alzheimer Society of Ireland campaigns for change during Irish General Election During the General Election in February 2020, The Alzheimer Society of Ireland (ASI) campaigned on the theme “Deliver on Dementia – Time for Change”, asking candidates to commit to a pledge on dementia. Avril Easton, Advocacy Manager, shares the ASI’s approach to the campaign and speaks to Senator Fiona O’Loughlin about her plans in relation to dementia.

We also issued 27 press releases incorporating national and local figures about dementia in their area and also the details of candidates in every constituency who had signed our pledge. These press releases were sent to every press and media outlet in the country. In total, over 5,000 e-mails were sent to candidates and thanks to the engagement of our grassroots network over 190 candidates pledged their support and 92 of those were elected. This is close to 60% of the new TD (Teachtaí Dála) in the Dáil (the directly elected chamber of the Irish Parliament) that have pledged to Deliver on Dementia. In addition, dementia was specifically highlighted in six of the seven political party Manifestos.

However, Ireland and the world have changed dramatically since the election that took place in early February. In the election, the the crisis in dementia care among the elec- Irish electorate did not vote for a majority tion candidates. party; indeed, the emergence of Sinn Fein as a leading party with a key electoral vote was As part of our campaign we also asked people both surprising and unexpected. to share their personal stories of caring for Earlier this year in February, the Republic of a loved one with dementia to connect with By the time of the onset of COVID-19 in IreIreland held a General Election where the the public and show that people are living land, a Government had still not been formed. country voted to elect their next Government. in crisis. One of these stories featured two The existing Government had to take on a The Alzheimer Society of Ireland election sisters, Louise and Rachel who care for both caretaker role to direct the country through campaign “Deliver on Dementia – Time to End their parents with dementia. “We don’t have the early days of the pandemic. COVID-19 has the Crisis” aimed to ensure that dementia time to get sick in our families as our parents, shifted the focus and has meant that the pace is included in the new Programme for Gov- Tom and Carmel, need us to look after them has had to quicken on Government formation ernment so people with dementia and their and be on call 24/7. We are their voice, their with pressure mounting on parties to come families can get the support that they need. protection and their care”. together in the national interest. The campaign focused on asking over 500 election candidates to pledge to Deliver on Dementia in the next Programme for Government to ensure three key things:

1. The National Dementia Strategy is fully implemented 2. Home care for everybody 3. Dementia is in the Chronic Disease Management Programme

Through social media, we highlighted five real life case studies to demonstrate the challenges of caring and living with dementia and the urgent need for Government action. The video soundbites were used on Facebook, Twitter and our website to encourage members of the general public to contact their candidates to call for action on dementia.

We used our extensive grassroots network to distribute 3,000 voter prompt cards to staff, clients, families, volunteers and advocates across the organisation. Voters were asked to use these prompt cards for when they meet a candidate to help outline the challenges and struggles they face. The campaign aimed to get as many people as possible to highlight Voter prompt card

22 Dementia in Europe

Fine Gael and Fianna Fáil have been working on a joint policy document, with the two parties having 72 seats combined – eight short of a majority. At the time of writing, Taoiseach (Prime Minister) Leo Varadkar has said that the two traditional parties need a ‘third party’ as well as Independents to form a stable Government, explicitly mentioning Labour,

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the Social Democrats and the Green Party as potential partners. While none of the potential third parties are greatly enthused by the idea of going into Government with Fine Gael and Fianna Fáil, the increasing pressure of the COVID-19 crisis and the current legislative deadlock will probably have an effect on their outlook. COVID-19 has been a perfect storm for people with dementia. With the closure of our day centres, social clubs, Alzheimer cafés and faceto-face carer training, the people we support have been hit very hard. They have nowhere to go each day to keep them active and stimulated. This means that thousands of people with dementia and their carers cannot access crucial services at this time. Everyone’s lives have been turned upside down during this health crisis – but people with dementia are particularly vulnerable here.

An example of the carers stories shared as part of the election campaign

Throughout all this disruption, the advocacy work of the ASI continues. We have been lobbying all politicians and key party negotiators about the importance of dementia being included in the Programme for

Government. This has never more been important, as people with dementia are severely impacted by COVID-19: now is the time that we must address the crisis in dementia care.

Senator Fiona O’Loughlin sets out her plans for dementia to the Administrative panel for the 36th Seanad. In the previous Dáil, I was a member of the All Party Oireachtas Group on Dementia which aims to build understanding and galvanise support for long-term planning and resources for people with dementia. My interest in the area stems from my involvement with the day care centre in In early April 2020, Fiona O’Loughlin my hometown of Rathangan and with (Fianna Fáil) was elected to the Adminis- the Moore Abbey Alzheimer Day Care in trative Panel of Seanad Éireann (the upper Monasterevin, part of my South Kildare chamber of the Irish Parliament). constituency. Here, I witnessed families and neighbours struggle to keep these services Here Senator O’Loughlin outlines her open and funded, and the tireless work of vision and interest in dementia and carers looking after loved ones with demenwhat she hopes to achieve in her time tia. With 55,000 people living with dementia as a Senator: in Ireland, I want to do my part to get better funding and supports for people affected. Aside from my work in the Education and Disability sector, I have been a public rep- I was also inspired by those that I met who resentative since 1994, serving as a County spoke about their own personal experiCouncillor, Mayor, TD for Kildare South and ences with dementia – either as a person now Senator. I was delighted to be nomi- diagnosed with the condition or as a family nated by The Alzheimer Society of Ireland carer. I was moved by our own local ‘forget

me not’ choir in Kildare, and by the ‘butterfly’ approach to living in a residential setting in St Josephs, Shankill. In my time in the Seanad, I want to give a voice to people with dementia and work to implement the National Dementia Strategy. I will highlight the fact that dementia is a global public health priority. We must prioritise dementia care support in communities and within the home. My goals are: y An increase in the number of Dementia Advisers y Better provision of Home Care packages and community support y Increased funding and support for Dementia Day Care Centres y Better use of assistive technology y Work with Carers Organisations to support family members y Push for earlier diagnosis, better GP training and Health Service Executive awareness programmes.

Dementia in Europe 23

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Continence care matters for people living with dementia In this article, Alzheimer Europe reflects on some of the key issues around continence care for people with dementia and identifies some of the ongoing efforts to improve the quality of their care and treatment. Dianne Gove, Director for Projects, then provides some reflections on the work of Alzheimer Europe on this topic in recent years.

technology product that monitors the voiding pattern and the volume of urine lost, providing the base for developing a person-centred toileting and containment care plan. Another approach which utilises digital health technology is a change indicator, which can inform an informal carer or professional that the pad is saturated and need to be changed.

Digital health technologies, in combination with other incontinence products, can help ensure the good quality care for persons with dementia which meets their needs. This way good outcomes can be achieved for the person with incontinence and for informal carers, Incontinence is a widespread condition suggesting suitable management or pre- whilst ensuring effective use of available budgaffecting some 50 million people across the ventative measures. Health and social care ets provided by health care payers. If a care EU, with more than 15 million informal car- professionals must also take into considera- pathway with the support of digital health ers taking care of some of these people living tion the needs and wishes of informal carers technologies are to be implemented as part with the condition. A significant number of who often play a vital role in ensuring good of care for people with dementia, a significant people living with dementia in the EU are continence care for people with dementia liv- shift both in policy and practise is required. likely to experience issues with incontinence ing at home. Due to the progressive nature of at some stage, with no total cure currently dementia, regular re-assessment is essential Towards the implementation of good available, despite medical and pharmaceu- to ensure the suitability and effectiveness of practice tical research into this area. the measures put in place. In the policy context, Alzheimer Europe joined Approach to continence care As part of this process, people with dementia a roundtable event in 2019, facilitated by (and where appropriate their informal car- Essity Hygiene and Health AB, along with AGE Despite the scale of the number of people ers) must be involved in all aspects of their Platform Europe, Eurocarers and the European affected by the condition, it is an area which assessment and the delivery of continence Institute for Womenâ&#x20AC;&#x2122;s Health. The group idenis often not discussed or adequately consid- care. Where proxy decision-making powers tified key issues affecting the populations ered in the context of dementia. There are are in place, procedures should be followed in they represent, the required solutions and four key aspects which must be considered line with policy and legislation in that coun- the policy and decision makers who were best in relation to addressing incontinence: try to involve the proxy. placed to affect change.

y y y y

Prevention Detection Assessment of incontinence Management of continence problems with toileting and containment

Continence care must always be in accordance with the needs of people with dementia and carers. It is essential that the primary consideration in any approach must be to do what is best for the person with dementia, taking into account their individuality, their wishes and the promotion of their individual autonomy, wellbeing and independence. This requires awareness, training and education of informal caregivers and professionals so they may appropriately assess the toileting and containment needs of the person with dementia, as well as identifying and 24â&#x20AC;&#x192; Dementia in Europe

Looking to the future of toileting and con- This discussion culminated in a call for action, tainment care calling on decision makers at local, regional, national and EU levels to take action to put in Research and development processes in this place the necessary person-centred care profield have advanced, aiming at improving the visions that can help manage incontinence, care pathway for toileting and containment to support the best possible quality of life care, especially for people who require care and make the best possible use of existing services, with the ambition to keep people budgets and care resources. self-managing for as long as possible. The optimisation of the care pathway is helped Recommendations within the call to action by the use of technology enabling a good were broad in nature, including: assessment and an improved delivery of person-centred care. y Urging health authorities to promote the World Health Organization (WHO) New technologies have the potential to assist Integrated care for older people (ICOPE) people with advanced dementia who expeframework. rience difficulties in expressing their need y Demanding that health care payers to go to the toilet or have their pad change ensure that out-of-pocket expenses for managed. One such example of a recently individuals are minimised and ensure developed assessment tool is a digital health that individuals and informal carers have

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choice and control over the selection of containment products and overall care with respect to toileting needs. y Encouraging education bodies to ensure that the training of health care

professionals responsible for assess- The Call to Action can be accessed at: ment and delivery of care are sufficiently www.bit.ly/ContinenceCallToAction skilled and knowledgeable about prevention and daily management strategies for incontinence.

Dianne Gove, Director for Projects, explores the importance of good continence care and highlights Alzheimer Europe’s work in this area Just over five years ago, Alzheimer Europe set out to explore the issue of continence care for people with dementia living at home. At the time, little work had been done on continence care for this group of people. Recommendations and guidelines for the continence care of other groups (such as older people, people with cognitive impairments or frail older people) in other settings (e.g. hospital or residential care settings) cannot simply be applied to people with dementia living at home. Together with a team of clinical and academic experts in continence care, policy making, general practice and dementia, including a person with dementia, and with the support of Essity (formerly SCA Hygiene Products AB), we developed guidelines on continence care for people with dementia living at home. The report and recommendations emphasised the need to promote independence, as far as possible, and to avoid assumptions about dementia, the abilities of people with dementia and their wishes. Continence care must always be based on an individual assessment. Incontinence should not be seen as an inevitable aspect of dementia. It should always be investigated and a diagnosis of dementia should not, on its own, rule out any specific approach. The experts recognised the importance of appropriate and affordable, good quality

“

continence products, but also that these must not be the only solution offered to people with dementia. Rather appropriate continence products may be one part of a comprehensive continence care plan. This includes looking at how the environment Continence Care Report contributes towards incontinence, at techniques to help prevent actual incontinence, and at treatment and even surgery. compare the efficacy of different types of continence products. Following on from this work, Alzheimer Europe has contributed towards the Good continence care is key to respecting development of key performance indica- the human rights and dignity of those tors (KPIs) to measure outcomes for the affected by continence problems but incondaily management of toileting and continence remains a stigma in many parts of tainment within a range of care settings. Europe. Alzheimer Europe is keen to proIt is hoped that these KPIs will contrib- mote open discussion about this topic and ute towards improving the quality of encourages health and social care profescontinence care for people with demen- sionals, as well as policy makers, to take a tia. Another, important area of work has proactive approach to addressing this senbeen the development of policy recom- sitive topic so as to provide appropriate mendations, as mentioned above, and and timely support for people with demenAlzheimer Europe is currently a mem- tia and carers. ber of an advisory board for a study to

Good continence care is key to respecting the human rights and dignity of those affected by continence problems but incontinence remains a stigma in many parts of Europe.”

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Dementia Friends – keeping up the good work There are 25 Alzheimer’s associations throughout Europe which have implemented Dementia Friends programmes in their countries. We spoke to some of them about how successful this global movement has been, since its inception in the United Kingdom in 2013, and about how they continue to engage people after they become Dementia Friends.

Dementia Friends England and Wales

Global Dementia Friends Network – the beginning and end of an era

Until spring 2020, Alzheimer’s Society coordinated the Global Dementia Friends Network (GDFN), supporting other countries to develop Alzheimer’s Society Dementia Friends programme their own Dementia Friends programmes by providing capacity-building support and Launched in England and Wales in 2013, the are encouraged to be ambassadors for the fostering a global network. Under the GDFN, Dementia Friends programme of the Alzheim- programme in England and Wales. national Alzheimer’s associations and other er’s Society is the UK’s biggest ever initiative organisations in over 67 countries and terto change people’s perceptions of demen- The success of the Dementia Friends pro- ritories worked together to share, support tia. Dementia Friends are those who have gramme is measured via a theory of change and collaborate for a truly global dementia watched our video or attended a session brought together with the Dementia friendly movement. The GDFN created over 19 delivered by a Dementia Champion, at which Friendly Communities initiative. Dementia million Dementia Friends worldwide. they learn more about dementia and the awareness, empathy and understanding of ways in which they can help. There are over the rights of people affected by dementia as Alzheimer’s Society International work is 3.7 million people taking action as Dementia programme outcomes are further evaluated mostly funded by the UK Department of Friends across England and Wales. by in-depth interviews. Health and Social Care. This funding was withdrawn in early 2020 and no additional Dementia Friends receive a welcome email Dementia Friends are also surveyed on a reg- source of funding was secured. This has led with a reminder of their learning and ular basis. It has been identified that 86% of to the decision to permanently disband the actions, as well as a monthly newsletter Dementia Friends in England and Wales have international team and the GDFN. with opportunities to get involved and the an improved understanding of dementia and latest programme announcements. On social 84% feel the programme is inspiring com- The GDFN was a project part of the Implemenmedia, Dementia Friends can also engage munities to take action. Personal stories of tation Plan for the Prime Minister’s Challenge with each other, discuss key messages, ‘like’ impact also demonstrate the success of the on Dementia 2020, where Alzheimer’s Sociphotos and stories. Dementia Friends have programme and are celebrated at the annual ety committed to, “turning Dementia Friends also been involved in campaigns where they Dementia Friendly Awards. into a global movement including sharing its

United Kingdom – paving the way

Some important points to note: 1. The national programme and all associated activities (Demen- 3. Programmes using their own brand and materials should not tia Friendly Communities, Programme Partnerships, etc.) in be affected by changes to the network. the UK will continue. 4. If a new country (via its Alzheimer’s association) wants to 2. All existing programmes with a license (a signed agreement) launch a Dementia Friends programme, they should contact for the use of Alzheimer’s Society Dementia Friends logo and Alzheimer’s Society Head of Policy, Gavin Terry, Gavin.Terry@ Alzheimer’s Society Dementia Friends materials will continue alzheimers.org.uk to enter into an agreement to use the brand to be able to use them as part of their national Dementia and materials. This is to avoid misuse of the brand. Friends programme in accordance to the current agreement.

26 Dementia in Europe

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multi-sector partnerships combined with dementia awareness training and raising the profile of dementia as a European and global health priority. Every programme is unique and tailored to its cultural context. More and more Dementia Friends programmes are being adapted to reflect the cultural diversity of countries in Europe and the world.

Global Dementia Friends Network meeting

learning across the world and learning from others”. As this project comes to an end it cannot be transferred to another partner in its current shape and purpose. Alzheimer’s Society is working with Alzheimer’s Disease International (ADI), to help manage the communication around the cessation of the programme and to provide advice for the network in terms of how it can stay connected.

Sharing learning and good practice was key to the success of the GDFN and according to a survey by Alzheimer’s Society, 83% of countries reported feeling part of a global dementia friendly movement and that they have benefitted from the experience of other countries. The legacy of the Global Dementia Friends Network continues via the programmes in Europe and the rest of the world. Alzheimer’s Society is proud to have contributed to the success of this global movement.

In Europe, 25 Alzheimer’s associations, part of the former GDFN, continue paving the way to help realise the rights of people affected by dementia in Europe. Success stories include using Dementia Friends as a hook to influence key decision makers; creating a dementia friendly generation via Demen- For more information visit: www.dementiatia Friends; launching successful awareness friends.org.uk campaigns with celebrity ambassadors;

Global Dementia Friends Network map, March 2020

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Denmark The numbers

The Danish Dementia Friends programme, “Demensven”, is highly inspired by the UK Alzheimer’s Society initiative, Dementia Friends. The Demensven programme was launched by Alzheimerforeningen, the Danish Alzheimer’s association, in May 2015, at a national conference for health professionals and researchers in dementia care. At the launch, 1,000 people signed up to become Dementia Friends. Almost 90,000 people are currently living with Dementia in our country and the initial goal was to reach 100,000 Dementia Friends. This was accomplished in May 2019. In Denmark, the focus of this programme is to acquire knowledge of dementia and to understand how to use that knowledge in order to support people with dementia in living a good life. You become a Dementia Friend by signing up on our website www.demensven.dk or by taking part in a local Dementia Friends information session arranged by one of our Dementia Friends Champions. We have also developed a digital platform for companies and organisations, so that their staff can become Dementia Friends. When a company has completed the online training, it will appear on a digital map of dementia friendly places. Currently, there are almost 600 dementia friendly places across Denmark.

We send out monthly Demensven newsletters which focus on knowledge of dementia and As of April 2020, we have more than 110,000 testimonials from other Dementia Friends. Dementia Friends. Every Dementia Friend We publish many such testimonials, for receives a purple Demensven heart-shaped example from someone who spotted a person badge, together with information about who seemed lost and confused and helped dementia and ideas on what actions to take. them find their way home; and another who Through partnerships, we have managed to assisted a person at the supermarket with attract a lot of attention to the Dementia getting the right groceries. We have created a Friends initiative. In particular, a partnership lot of video material and infographics, which with TV2 (a commercial TV station in Denmark), we use on social media to spread knowledge which allowed us to reach thousands of new and awareness. Dementia Friends during 2017 and 2018. In collaboration with TV2, we organised a week of special events focused on dementia. We produced short films of people with dementia, explaining why public knowledge of the disease is crucial, in order for them to be met by understanding and patience. The videos aired on social media and TV. Together with young children of people with dementia, they encouraged the public to become Dementia Friends. The result was that almost 25,000 people did so. The TV2 partnership helped raised awareness of the fact that it is not only older people who are diagnosed with dementia. It also helped to shine a light on some of the many challenges a family faces when a mother or father is diagnosed with dementia. Birgitte Vølund

Success and continued engagement We can see an increase in the general level of knowledge around dementia in Denmark. From 2016 to 2019, we conducted an annual YouGov population study, to establish people’s knowledge of dementia. Through these studies, we were able to ascertain that the proportion of people in Denmark with a high level of knowledge about dementia is two and a half times greater among those who are Dementia Friends, than those who are not.

“Dementia Friends is a great way for the Danish Alzheimer’s Association to raise awareness of the disease in Denmark. Getting to know more about dementia is the first step to become a dementia friendly society. We are very pleased with how people have supported the Dementia Friends initiative and after reaching the first 100,000, we have increased our goal to reach 500,000 Dementia Friends over the coming years”, said Birgitte Vølund, Chairperson, Alzheimerforeningen.

Netherlands

In the Netherlands, a country of 17 million citizens, the number of people living with dementia will double in the coming twenty 28 Dementia in Europe

years, to more than half a million. As more and more people with dementia live at home, they depend heavily on their family carers. Family carers can get overwhelmed, experience feelings of loneliness and generally even die at an earlier age. The number of informal carers will decline in the near future. This growing problem demands a more inclusive and dementia friendly society. To meet this

need, in 2016, Alzheimer Nederland started a dedicated five-year Dementia Friends campaign, “Samen dementievriendelijk”, in cooperation with the Dutch Ministry of Health, Welfare & Sport and PGGM, a pension administration organisation. The objective of Samen dementievriendelijk is to encourage Dutch society to become

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In addition, Samen dementievriendelijk offers an on-site two- hour training course to employees of companies. These customised trainings are given by 200 trained volunteers. The number of on-site trainings is growing rapidly and is a huge success with 1,788 courses having already taken place.

Samen dementievriendlijk

dementia friendly through year-round campaigns on national television, on social media and by using an extensive training programme. This approach is focused on a learning strategy; learning how to recognise the signs of dementia will help people to act in an appropriate and supportive manner. Generally, we have found that people are willing to help people with dementia, once they understand better how to provide that support. The numbers There are currently 280,000 people with dementia living in the Netherlands. Since the start of the programme Samen dementievriendelijk, nearly 343,000 people have registered as Dementia Friends, so there is at least one Dementia Friend for every person with dementia. The goal is for this number of Dementia Friends to grow even more. Sixty percent of our Dementia Friends followed a fifteen-minute online training in which they increased their knowledge about dementia and learned skills in dealing with someone with dementia. There are two general online training courses and twelve specific courses for employees of companies with a high frequency of customer contact. These online training courses were developed in close cooperation with the companies involved, with the possibility of then offering this training to their own employees. Today nearly 37,000 employees of these companies have followed this programme. Wishing to make a difference for people with dementia, more than 350 companies have joined the programme, with care organisations and supermarkets being the largest participants.

which we call upon everyone to help people with dementia, and their carers, in a safe way. Inspiring initiatives to offer help and dementia friendly tips in Corona-times are being promoted on a new platform, ”how to help”, and shared with Dementia Friends and the Dutch public, through social media. The attention this has received is enormous and the platSuccess and continued engagement form has already been visited by more than 33,000 people in the space of 2 weeks. At Easter To keep our Dementia Friends engaged time, Samen dementievriendelijk joined forces and motivated, more than 140,000 of with the successful Alzheimer Nederland camthem receive a monthly newsletter which paign #wevergetenjullieniet (“we won’t forget includes inspiring stories, information about you”), in which the Dutch public was asked to newly-developed trainings, and tips and cam- support their loved ones in times of isolation. paign activities. Between this newsletter and Thousands of people visited the platform and our Facebook campaigns (26,000 followers), lent their support by posting heart-warming the Samen dementievriendelijk campaign messages on social media, sending a postcard, continues to inspire our Dementia Friends cooking an extra meal, offering to do grocery to turn their knowledge into action. shopping and displaying our campaign poster, which was also included in all the national and Samen dementievriendelijk is certainly regional newspapers. a success in terms of numbers. On top of this, the programme regularly measures its impact. The campaign has reached 98% of the target population, and recognition among the general public has increased from 29% to 83%. Repetition is necessary to stimulate action, such as taking a training course. The amount of people that say they know what dementia is, has increased from 64% in 2016 to 82% in 2019. A recent study of Dementia Friends (N=500) shows Samen dementievriendlijk that 82% of all Dementia Friends feel more confident in interacting with someone with dementia after following the online training. The future This is an important result in the chosen Dutch learning strategy. The ultimate goal, of course, is to have impact among family carers and people with demenThe national survey, “Dementia Monitor of tia. All the above mentioned results show Alzheimer Nederland” (www.alzheimer-ned- that, although we still have a long way to erland.nl/dementiemonitor), which is go, we are making progress in the Netherconducted among 4,500 family carers, every lands. The COVID-19 crisis has really shown other year, has also shown us that relatives us the huge willingness of the Dutch people and family carers are now experiencing more to help others who become isolated, and to understanding and support within their social show real solidarity. Life after COVID-19 will environments(an increase from 70% to 78%). never be the same. The Samen dementievriendelijk programme plays an important role Campaigning during COVID-19 in keeping this sentiment alive and contributes to the more inclusive society that the The recent pandemic has clearly shown an enor- Netherlands aspires to. mous willingness to help other people in need. It was a good reason for Samen dementievrien- The Dutch Dementia Friends website can be delijk to change focus, from learning to doing; visited, here: www.samendementievrienmoving towards a more active programme in delijk.nl

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Finland

The Finnish Dementia Friends programme, “Muistikummit”, was launched by Muistiliitto, the Alzheimer Society of Finland, in September 2018. There was even a session of Muistikummit in the Finnish Parliament on World Alzheimer’s Day, 21 September 2018.

Muistikummit – Dementia Friends in Finland

The numbers encouraging feedback from the people who have taken part in sessions. The participants have told us, for example, how their attitudes have changed towards relatives with a memory illness, or how they now find it a lot easier to communicate and to be patient with friends who have dementia. We have also started to collect Success and continued engagement written feedback from participants and also from the people who participated in online The programme was an instant suc- sessions. We simply ask them whether cess in Finland, and we have had very the session has/or has not changed their Since the launch 13,253 people have become Dementia Friends. In 2019, we launched an internet version, which helped us to reach even more potential Dementia Friends. You can access the website, here: www.muistikummit.fi/verkkotuokio.

attitude towards people who have memory illnesses. About 82% says that it has made a positive impact on their attitudes. After each session, we collect participants’ email addresses and send them our Dementia Friends newsletter, four times per year. We give them information and encourage them to do dementia friendly deeds. For every newsletter, we also try to find a Dementia Friend to share their experiences and their dementia friendly actions.

Slovenia Spominčica – Alzheimer Slovenia joined the Dementia Champions. Our hope is that “Dementia Friends” movement in September our Dementia Friends will help to create a 2018. We officially launched our campaign at more dementia friendly Slovenia, by raising the 10th International Conference on Dementia – ASK 2018, which we organised together with the Faculty of Medicine, Ljubljana, and at which Iva Holmerova, Chairperson of Alzheimer Europe, and Paola Barbarino, CEO of Alzheimer’s Disease International (ADI), were honorary speakers.

awareness and reducing the stigma often still attached to dementia.

The numbers Since the launch, Dementia Friends in Slovenia has been very well accepted and the membership is constantly growing. In Slovenia, there are now more than 600 Dementia Friends and 100 of them are

30 Dementia in Europe

Igor Šoltes, MEP, joins Slovenia’s Dementia Friends programme

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Secretary of State for Health Uros Prikl is a Dementia Friend

for Human Rights Vlasta Nussdorfer, head of “pro bono” clinic Vida Drame Orožim, Minister for Social Affairs Ksenija Klampfer, Minister for Public Administration Rudi Alzheimer Cafes, Memory walk, stands at Medved, Minister for Internal Affairs Boštjan fairs and festivals. The programme is also Poklukar, President of the Slovenian Parliasupported by public officials becoming ment Dejan Židan, and Secretary of State for members and promoting Dementia Friends, Health Uroš Prikl. Slovenia’s police force also including: MEP Igor Šoltes, Ombudsman has a number of Dementia Friends.

Human Rights Ombudsman Vlasta Nussdorfer, clinic head Vida Drame Orožim and minister Ksenija Klampfer sign up

Engaging public figures in Slovenia To promote the programme, we use our webpage, social media, printed Spominčica magazine and all our public activities like

Italy continue the long path to becoming a more inclusive community. This careful planning has made it possible for us to now proudly count 4,415 Dementia Friends in 26 Dementia Friendly Communities, as at the end of 2019. This significant growth Federazione Alzheimer Italia officially joined is mainly thanks to the local effort of small the Dementia Friends network in Decem- towns in the northern hills, villages in the ber 2019. southern mountains and individual neighbourhoods in larger cities. Italy’s approach – starting with communities

Introducing the Dementia Friends initiative In early 2020, just before the disruption of the COVID-19 pandemic, the new Dementia Friends initiative was introduced and discussed at the Annual meeting of the DFCs. It was envisioned that the Dementia Friends programme would build upon what has already been achieved by each DFC and would add value in terms of assistance, training, support and awareness of

We had already started the Dementia Friendly Community (DFC) programme in 2016, which grew to create 26 DFCs scattered throughout Italy. This ground work is now being enhanced by the Dementia Friends programme so that each new Dementia Friend, having received extra training and knowledge, can use this knowledge within their own community. Only where the community path had already been laid down by the DFC programme, did we wish to also start the Dementia Friends programme, so that the training and concepts of this additional programme can be more effectively integrated into a neighbourhood that has already started and so can better DFC Arzignano

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DFC Abbiategrasso

dementia. Starting from their own city, town and neighbourhood, each Dementia Friend would be a spokesperson for positive behaviour and would encourage simple changes in behaviour such as, “be more patient”, “visit a person with dementia”. For all citizens, who live in those communities that are working to become dementia friendly, knowing that this attitude is shared by millions of people around the world is a driving force that itself creates even more help and support for the project. These are the everyday small actions

that count and that can make the difference in the life of a person with dementia: showing patience when you are at the checkout, telling friends and neighbours what you learned about dementia, making yourself available for a home delivery. Small actions that, in each course and seminar organised locally by the DFCs, are encouraged by the experience of professionals and family members so that the citizen can bring home practical knowledge to make himself available to the community. The future Our next steps will be to support the communities by creating even more opportunities for interaction, so that not only will the number of those who understand and support people with dementia grow more and more, but greater importance and value will also be given to inclusive initiatives, involving as many people as possible, which we hope should develop long-lasting friendships.

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32 Dementia in Europe

DFC Bari

DEMENTIA IN SOCIETY

Exercise and dementia – Petri Lampinen’s story

“

The most important piece of advice my neurologist gave to me was: ‘The best thing you can do in this situation is to Petri Lampinen, a member of the European Working Group start exercising actively.’”

of People with Dementia (EWGPWD), shares his thoughts on life since his diagnosis of Frontotemporal Dementia and on what exercise, a healthy diet and careful planning have done to help him. I was diagnosed with FTD (Frontotemporal Dementia) at Tampere University Hospital in 2015. Receiving the diagnosis was a great relief for me as well as my family and friends. It meant I was finally able to connect many of my symptoms and personality changes to an underlying issue. When I received the diagnosis, my neurologist gave me some instructions on how to slow down the progression of the disorder. People with FTD don’t usually receive any medication, since there really aren’t any drugs for this slightly rarer form of dementia. However, after some careful thought, I was prescribed a type of drug used for treating Alzheimer’s disease, in order to help boost my cognition. The most important piece of advice my neurologist gave to me was: “The best thing you can do in this situation is to start exercising actively.” I am happy I paid attention and marked the doctor’s words. I have been living by these instructions for a few years now, and it has worked out very well for me.

Rediscovering my youth

At the first meeting of this new programme, I set myself a goal to improve my ability organised by the Social Insurance Institution to function through new forms of exercise of Finland, Kela. That is when I really under- and occupational therapy. With some excelstood the importance of exercise. I started lent guidance from the staff, I was able to exercising a lot more after the training, going rediscover activities from my youth. When on long walks and cycling. I was young, I used to play table tennis and badminton quite often. The rehabilitation After a few months, I applied for another train- brought the sports back into my life. As I got ing programme from Kela. At that point, I was older, I had forgotten about them. given the wrong advice by a number of healthcare experts, who said that I could not apply On the last day of rehabilitation, I felt a bit for this ‘multidisciplinary medical (neurolog- sad that it was all coming to an end. I had ical) rehabilitation for the severely disabled’. come to realise how much I was getting out Luckily I was proactive and figured things of this programme. I also remember thinkout myself. I contacted Kela’s rehabilitation ing that the rehabilitation would only be services directly and was told that I could, in useful if I continued actively taking care of fact, apply for the training. I found a doctor myself. An active approach to rehabilitation who knew about these things and drew up a would allow me to reap the benefits at a rehabilitation plan for me. He understood how later stage and leave no room for second vital exercise was for my well-being, so I sent guessing about the possible advantages of the application to Kela and was fairly quickly exercise later on. The decision to take care of granted access to a 13-day rehabilitation pro- myself has been one of the best life choices gramme. Once again, my proactivity paid off! I have ever made!

“

FTD has made me impulsive, and exercise allows me to get rid of any excess energy I may have. It also improves my psychological well-being.” Understanding the importance of exercise

After the diagnosis, my wife and I were allowed to attend an adjustment training programme for people with memory-related diseases and their families, which was

Petri enjoys playing table tennis

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As I have got into better shape, my bike trips have got longer month by month. I started out by cycling 10 to 20 kilometres a day, but was soon doing 30 a day, and the trips still kept getting longer. Today, my typical daily stretch is 40 to 60 kilometres. I have even cycled more than 100 kilometres a couple of times, having only short drinking breaks along the way. I always remember to take enough to drink and some high-energy food with me when I go on my trips. Planning and support

Petri prefers his basic bicycle to the ‘fancier’ models

“

When I ride my bike, I use cycle paths and, in the countryside, paved roads. I enjoy my trips through the countryside and take great pleasure in observing the seasons changing. There is always so much to see along the way.” Exercise really pays off

I use a sports watch which allows me to monitor my heart rate so that it doesn’t get too high. I also know how to take breaks from exercising and the sports watch helps me judge how long I need to rest for, during and after training. In addition, my wife keeps an eye on me and my training and supports my efforts. She also comes to my rescue on occasion. This summer, my pedal came off in the middle of nowhere. I phoned her while she was cooking, and she was luckily able to set aside what she was doing to come and help me. Had I needed to push my bike, it would have been a very long walk home! I do my bike trips within the local taxi operating area. Fortunately, I have a taxi card, which was given to me by the disability services, so if I get into a tricky situation during one of my trips, I am always able to get home by calling a taxi.

My condition has some parallels with ALS (amyotrophic lateral sclerosis), which is why I I really started to get into exercising, and find it important to strengthen my muscles. I my daily routines became more varied. For- take particularly good care of my leg muscles, tunately, I am conscious of my symptoms. It because, as my neurologist advised me during I also avoid cycling in the city centre. That makes me realise which types of exercise are my diagnosis, towards the final stages of FTD would almost certainly mean a run-in with good for me and which are not. many people tend to experience symptoms a car, since I have some trouble with concenthat resemble those of Parkinson’s disease. tration and short-term memory. I easily forget FTD has made me impulsive, and exercise allows things that have just happened. For instance, me to get rid of any excess energy I may have. My love of cycling I might think that I have just looked left even It also improves my psychological well-being. if in fact I haven’t, then I take off straight into Nowadays, the most suitable form of exer- the path of an oncoming car. After both programmes I attended, my exercise for me, and the one that is closest to my cise routine consisted of walking, table tennis, heart, is cycling. The past summer, I managed When I ride my bike, I use cycle paths and, badminton and cycling. In the three years to cycle a little over 4,500 kilometres, but I in the countryside, paved roads. I enjoy my prior to this, I had also occasionally taken don’t cycle at all in the winter time. trips through the countryside and take great part in strength and balance training groups pleasure in observing the seasons changing. organised by the service unit for senior cit- After the neurological rehabilitation, I There is always so much to see along the way. izens in the city of Hämeenlinna. I received wanted to keep myself active in the winter, In the spring, I marvel at the budding of trees some guided training from their physiother- so I booked a badminton court at the local and hedges. In the summer, I like looking at apist, including physical ability testing. As school. This winter, I am going to try skiing flowers and, later, the autumn colours. As you well as the physical benefits, there was an again, after a long time away from the sport. can probably tell from my enthusiasm, I don’t added benefit which was the opportunity to I also bought myself an exercise bike some travel along with a frown on my face! socialise with the other participants. time ago. I am self-rehabilitating my life! 34 Dementia in Europe

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I feel safe while exercising, because I make sure I am prepared. As well as bringing a drink with me, I always take a small first-aid kit. In the future, I plan to bring along some tools, to allow my wife do her cooking in peace. I use Google Maps, which helps me with route planning and I can also use it to pinpoint where I am, if I need to. I have installed the 112 mobile application, which can be used for calling the emergency services and emergency geolocation. Planning is really important. Back to basics There is a lot of humour in exercise. I ride an old, three-speed bike, and a couple of times, I have taken a more advanced cyclist by surprise. They have been riding along on their expensive bike in their fancy cycling gear, getting far ahead of me on a straight stretch or while going downhill. Then, I have surprised them while cycling uphill, overtaking them like a formula one driver! Afterwards they catch up to me and start to wonder why I ride such a basic bike. I have told them that I have a memory-related disease and use a slightly simpler bike, so that I may be able to fix it myself, if needed. I wouldn’t know how to fix a multi-speed bike, as he disease has taken its toll on some of my skills. In my childhood and youth, I used to do competitive orienteering. The skills I acquired then are valuable to me as get older, I have noticed. Luckily for me, my condition doesn’t involve getting lost, as in Alzheimer’s disease. It gives me the freedom to exercise as I like. I always leave a note on the whiteboard at home, saying where I am going. In the future, I can also start using various mobile applications to let my family know where I am. Road safety So far, I have managed to avoid scratches and bumps, but I have had some encounters with wild animals. Last summer I almost hit an elk, a deer, a dog, some birds and even a grumpy cockerel, whose territory I must have invaded with my bike. My encounters with drivers have usually gone well, though. There’s one thing that puzzles both me and the drivers, though: rules for yielding at the intersection of a cycle path and a road. Neither of us seems to know who is supposed to give way. Even healthy people have trouble

Petri Lampinen (left) gave a presentation at the EWGPWD symposium during the 28th Alzheimer Europe Conference, with a translation by Chris Roberts (right)

with this situation, let alone a cyclist with a memory-related disease. As I have travelled around Europe doing work related to my illness, I have noticed special traffic signs for cyclists, that in similar places clearly show the obligation to give way. It would be great to see these signs in Finland as well.

Gratitude

At the moment, I would like to get a personal rehabilitation instructor. They could give me some exercise tips and keep track of my activity levels. Due to my impulsive behaviour, I might at some point put too big a strain on myself – especially if I become less aware of my symptoms as time goes on. It would be wonderful to come up with a dietary plan and a follow-up system, too.

Thank you to Alzheimer Europe and Muistiliitto – The Alzheimer Society of Finland, for giving me the opportunity to be a part of the European Working Group of People with Dementia (EWGPWD) and Finland’s “Memory Activists”, which gives me the space to share my experiences with others.

I have been living my life as a person with dementia (or: a ‘memory-related disease’ as we call it in Finland) and following the model outlined in the “FINGER” study (Finnish Geriatric Intervention Study to Prevent Cognitive Impairment and Disability) for a couple of Unexpected benefits years now. I have exercised a lot, acquired social contacts and taken part in various I have taken matters into my own hands activities that have come my way. I have when it comes to preparing my own exer- maintained a healthy diet and also rememcise-based rehabilitation routine. I feel like bered to rest when needed. I have made good decisions when it comes to maintaining my ability to function. How- During the past few years, I have taken ever, I have also received some negative, even immense pleasure in my life. Life has had mocking, feedback. Some people just can’t a lot to offer, and my condition has also seem to understand that frequent exercise brought me a lot of new friends. Together, allows me to take care of myself. we are able to change old preconceptions about what it is like to live with dementia. On top of all these benefits, active exer- Fortunately, we have been provided with cise, has also allowed me to sleep better channels through which we can make a difthan before. I have also changed my diet to ference in society. I have noticed that there a healthier one. There wasn’t too much to is genuine interest in what we have to say improve there, though, as I was already quite and that our opinions are being taken seria healthy eater. ously and appreciated.

Dementia in Europe 35

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Dementia in the arts: An interview with “Romy’s Salon” director Mischa Kamp

Tamara wanted the grandmother to still be working and to be in a sociable environment. A woman still in the middle of an active, vivid life. It was important to show in the film that the grandmother was losing her memory bit by bit. She was slowly losing her grip. The other good thing about a hairdressing salon is that Romy could easily come by after school and stay upstairs in her grandmother’s house. It is good when a film can show the main characters getting closer to each other and Alzheimer’s and this was the inspiration becoming more involved in each other’s lives behind the story. Although, of course, the in an easy, natural way. Part of Tamara’s inspicharacter in this film, Romy, is much younger. ration for the setting had come from her own neighbourhood memories, where a child used Even up to 10 years ago, there were no fam- to go to her grandmother’s after school, who ily films about this subject. It is so important ran a hairdressing salon. for young people today, to understand a little more, especially since this disease is becom- How were you able to make Stine (the ing more and more common. grandmother)’s character, played by Beppie Melissen, so believable? Did you and For me, the interest was not family related. screenwriter Tamara Bos research AlzheimRather, the way Tamara described the dynamic er’s dementia and how it can affect different relationship between Romy and her grand- people, to help achieve this result? mother, really got my attention. It was very original and therefore an interesting way to We read a lot about Alzheimer’s disease and talk about dementia. saw a lot of documentaries, which was very

Dutch film director Mischa Kamp spoke to Alzheimer Europe about her award-winning movie “Romy’s Salon”, which looks at the changing relationship between hair salon owner Stine and her granddaughter, Romy, as Stine’s dementia progresses. What made you decide to direct the movie “Romy’s Salon”? Is the subject-matter particularly close to your heart? The scriptwriter, Tamara Bos, told me about her idea for this film about 10 years ago. We had just finished shooting “Winky’s Horse”, a film about a Chinese girl who emigrates to the Netherlands and who hears about “Sinterklaas” (Santa Claus) for the first time. It was a big success in our country. Tamara’s idea was to tell the story of a young girl and her grandmother, who is coping with Alzheimer’s disease. When Tamara was 19 years old, her own grandmother had

Romy doing her grandmother’s hair

36 Dementia in Europe

The story takes place in a hair salon; a place everyone can relate to and where people often speak quite openly and honestly. Is that why this particular location was chosen for Tamara Bos’ story to unfold, or was there another reason?

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Romy, Stine and Romy’s mother Margot – three generations impacted by Alzheimer’s dementia

inspiring. While Tamara was writing, she already had the actress, Beppie Melissen, in her mind. At that point, Beppie was still a bit too young for the role. So, in that way, it was a not such a bad thing that financing the film took quite a while because Beppie got older and more believable in the role of a grandparent. Beppie Melissen is a very good actress and she plays a lot of comic roles. I think, as a director, if you can play comic roles successfully, you understand the importance of timing really well. This was one of Beppie’s first times playing a lead in a serious role. During the shooting of the film, we worked closely together to create each scene. We would shoot several ‘takes’, each with a different approach to how Stine’s role should be played; to which stage of confusion she was in at that moment in time – was she very confused or just a little? Beppie can improvise very easily, so her acting gave us a lot of input and it then came more naturally, straight from the heart. Romy, who helps her grandmother in the salon, takes on a lot of responsibility at the young age of 10. It is moving to watch her relationship with her grandmother develop, through supporting and trying

to understand her better, but she goes through a lot of pain and confusion along the way. Was part of your aim in making this movie to help children understand how dementia might affect a relative, and so to lessen the pain and confusion they might encounter? There is a difference in experiencing the film for adults and children. Adults know more about the disease and how it will develop as time goes on. Children live more ‘in the moment’.

to talk about such subjects with each other. A film can help in that way. Especially if you not only show the negative, but also some of the positive sides. The movie was very well received and has won a number of international film awards. Congratulations! Which are you most proud of and why?

We are very proud because we won many prizes. Some were voted on by kids only, some were voted for by adults only, some were the general public voting. So it is great In the case of Grandma Stine, she becomes to see that it is a film for a big and broad more open and less strict towards Romy. We audience – a family film for those 8 years of wanted to tell a story about a young girl, age and upwards. Besides that, it is nice to who was strong and independent. Romy see that people from all around the world had to be able to cope with some quite love the film. It has been a success at festidifficult issues but, in movies, you don’t vals in Europe, but also in China and other want to show a child suffering too much, Asian countries too. which is why we chose Romy as the character, because her strength and independence Despite the sometimes heart-breaking allowed her to cope. aspects of Alzheimer’s dementia that are portrayed in “Romy’s Salon”, there are also I also believe that we, as parents, should some positives that are shown: Romy is able not be too frightened of showing our chil- to find a lot of courage and strength within dren, films depicting real life issues like a herself; Stine, who has previously been family member struggling with the effects very strict and distant, is able to develop a of Alzheimer’s disease. Kids can handle far warmer relationship with her granddaughmore than people think and it is important ter; and Romy’s parents, who had become

Dementia in Europe 37

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quite absent in her life, become more involved and the whole family becomes closer again. What, for you, was the most important message in the movie? That is a very difficult question, to choose what is the most important message. Because that’s why I think the film is so interesting. All these aspects are so well intertwined in the lives of Romy and Stine. Of course, the fact that Stine has dementia is the focal point of the story, but so is their relationship, which is so meaningful for the story. The balance of these subjects make the film complete. It all starts with the script, and during the editing phase you work on that balance again. It is important to tell a sad story with some humour and to give people some hope and strength at the end. Especially for children, this is an important Granddaughter Romy helps out at Stine’s hair salon after school support for life. We wanted to tell a story, and of course we know that Alzheimer’s can be other. For children to understand that things new and positive, such as a closer relationa very awful and cruel disease, but some- change with an illness, but that this change is ship and special memories, is one of the most times it can also bring families closer to each not only a loss but can also bring something important messages.

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38 Dementia in Europe

FOCUS ON COVID-19

Alzheimer Europe responds to COVID-19 pandemic As a result of the COVID-19 pandemic, Alzheimer Europe has worked to ensure that the rights of people with dementia and carers are recognised in the policy responses and measures put in place to curb the virus. Here, we provide an overview of some of the actions we have coordinated and undertaken in the first half of 2020. Collated webpage of resources

Countries exchanged information and resources which had been produced and utilised in their respective countries, as well as providing a high-level overview of the context of the country and good practice examples for people with dementia or other vulnerable populations. This included the publication By including such a broad range of themes, of easy read information, the development Alzheimer Europe has aimed to ensure a com- of guidance to support people to use video prehensive collection of resources across a conferencing in care homes and the targetrange of disciplines. This section of the website ing of information to population groups who will continue to be updated on a regular basis. were deemed to be vulnerable.

In light of the spread of COVID-19 across European countries, various restrictions have been put in place ranging from the closure of important services such as day care or respite care to the prohibition of visits to nursing and Online meeting of Government Experts on old people’s homes. This situation and some Dementia of these restrictions also adversely affect people with dementia and their carers. On 24 March, following the suggestion of the Scottish Government, Alzheimer Europe To support carers and associations providing organised and hosted an online meeting of support and help for people with dementia in the European Group of Governmental Experts these difficult times, Alzheimer Europe created on Dementia to discuss how countries across a specific section within its website, collat- Europe were responding to the COVID-19 ing information and resources from a variety pandemic. of sources. A total of 20 people were present on the call, Sub-divided into 11 sections, the list of with representatives from Austria, Belgium resources that has been put together reflects – Flanders, Czech Republic, Estonia, France, the seriousness of the situation, as well as the breadth of information and resources which have been created in response to the pandemic. The important and invaluable work of national Alzheimer’s associations, governments, European and international organisations has been brought together under the following sections: y y y y y y y y y y y

Information for people living with dementia Advice for caregivers and families Information for minority ethnic groups COVID-19 and intellectual disabilities COVID-19 in numbers: epidemiology COVID-19 and Ethics Global resources European Union resources National resources General and scientific resources Mental health resources

Germany, Ireland, Netherlands, Poland, Sweden and the United Kingdom – Scotland, all participating in the online meeting. Additionally, observers from Alzheimer Europe, the European Commission (both DG RTD and DG SANTE), the Organisation for Economic Cooperation and Development (OECD) and the World Health Organization (WHO) were present.

In addition, the group discussed how to ensure that people with dementia and their carers living at home did not become isolated in places where lockdown measures were in place. Furthermore, they identified the crucial role for national Alzheimer’s associations in communicating and supporting people with dementia and their carers during the pandemic. Alzheimer Europe collected the links and resources exchanged in an online platform to allow members of the group to have a single reference point for resources and actions in each country. Members will be able to share

Alzheimer Europe home page

Dementia in Europe 39

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and upload resources on an ongoing basis on this platform. Online meeting of Alzheimer Europe’s national member organisations On 2 April, Alzheimer Europe hosted an online meeting of its national member organisations members to discuss their responses to the COVID-19 pandemic. The meeting, attended by 22 associations, allowed members to discuss how they were operating during the crisis, as well as sharing examples of how they were continuing to support people with dementia and their carers throughout the pandemic. During the meeting, Alzheimer Europe updated members on the work it had undertaken, including providing an overview of the meeting of the Governmental Experts, as well as the dedicated website section. During the discussions, it emerged that whilst national organisations were unable to deliver services such as daycare or in-person supports, many were continuing to provide support through the use of telephone helplines, video conferencing and publishing information and resources online. Additionally, examples of members using local networks to help with deliveries of food, medicines etc. to people confined to their homes, were also highlighted. A number of organisations also highlighted that they continued to engage with decision makers during the pandemic to ensure that the rights of people with dementia were upheld, particularly in relation to decisions on health and social care.

Additionally, members were asked to contribute to the development of a position paper that Alzheimer Europe was drafting in relation to the allocation of medical resources for intensive care during the pandemic. Alzheimer Europe position statements Following the online meetings with the Governmental Experts and national members, Alzheimer Europe has adopted two position statements in relation to COVID-19 and its potential impact on people with dementia.

On behalf of the EWGPWD and a person cocooned, taking part in the online meeting was a wonderful example of leadership, connection and sharing of much needed knowledge and good practice of how countries are supporting people with dementia. It was inspiring to hear the creativity in how countries are reaching out, especially to those who cannot use a computer or telephone and that live in remote areas.”

40 Dementia in Europe

To date, 48 organisations, both nationally and at a European level, have expressed their support for this position. Promoting the wellbeing of people with dementia and their carers

A second statement, adopted by Alzheimer Europe on 14 April, identified some of the key issues and challenges faced by people with The first statement was adopted by dementia, informal carers, and health and Alzheimer Europe on 3 April, calling for peo- social care professionals, in relation to the ple with dementia to be treated fairly and COVID-19 pandemic and dementia. equitably in the allocation of resources in intensive care. The statement was issued fol- The position statement outlines whilst havlowing reports from countries which were ing dementia is not believed to increase the significantly affected by COVID-19, suggest- risk of contracting COVID-19, people with ing that as a result of limited resources and dementia may find it more difficult to adopt intensive care beds, triage decisions would or comply with various protective measures be taken that would see older people and (e.g. hand washing, coughing, distancing, isopeople with chronic conditions (including lation and lockdown). It further notes that people with dementia) refused treatment, as a result of physical distancing, as well as care and support. the closure and cessation of many care and support services, people with dementia and Its statement, Alzheimer Europe emphasised their carers are at a heightened risk of isolaits commitment to a human rights-based tion and loneliness, as well as other poorer approach to dementia and its belief peo- mental health outcomes, including depresple with dementia can live meaningfully for sion or anxiety. many years with a high quality of life. As such, the statement reiterates that a diagnosis of The statement contains specific recommendementia on its own should therefore never dations targeted at three groups, including be a reason to refuse people access to treat- health and social care professionals, government, care and support. ments and national Alzheimer’s associations, about how they can ensure the wellbeing of people with dementia and their carers. Allocation of intensive care resources Intensive Care Unit

Helen Rochford-Brennan, Chairperson of the European Working Group of People with Dementia (EWGPWD)

“

Furthermore, Alzheimer Europe’s position sets out that governments and healthcare systems should take all necessary measures to ensure that the needed infrastructure (in addition to sufficient human resources) is in place to avoid the need for triage decisions.

FOCUS ON COVID-19

“We never close!” During the COVID-19 pandemic, Alzheimer Europe has been in awe of the response of its members. National Alzheimer’s associations across Europe have found new and creative ways to continue providing the best possible support to people with dementia and carers, during confinement. In this article, we highlight just some of this work, but we would like to congratulate and thank every single one of our members for their vital efforts and their resilience in such difficult times. “Mask and gloves”

Italy Italy has been badly affected by the coronavirus pandemic sweeping across the world. Everything literally just stopped on 23 February 2020. This was the date of the first governmental decree, that effectively closed all schools, recreational and work activities and asked Italians to remain confined at home. Ever since that fateful day, when people with dementia and their families saw their entire dementia support structure vanish, countless care workers, volunteers, local associations and Dementia Friendly Communities have worked tirelessly to rekindle an alternative support structure. Over time, new activities and initiatives have developed which have done a lot to continue the support of those most in need in our dementia community. After the initial chaos and confusion, Federazione Alzheimer Italia started to slowly restore some order by acting as a coordinator of the many local initiatives that were emerging. New ideas or actions were promptly updated on social media; help and support lines were restored; a handbook of practical advice dedicated to caregivers was shared on a national level with the media and with families, to help them better face the confinement period at home with their loved ones. Most local associations and Dementia Friendly Communities have activated new telephone contacts in order to continue to guarantee support for caregivers. Such support has gradually been implemented through video calls and online meetings. In

Verona, for example, videos of music therapists and occupational therapists have been published on Facebook, thus transforming a social platform into a service provider. New services have also evolved to meet new needs, such as home shopping for those who are confined. Cicala, a small village in southern Italy which is a member of the Italian Dementia Friendly network, produced and distributed 12 posters with clear and simple instructions, to improve awareness of the virus and to protect the elderly and vulnerable. In many cases, direct contact has been made with families living with dementia. Individual programmes of assistance have been created. Also encouraged are activities which lift up community spirit and involvement, such as a competition between wives in cutting the beards of their husbands, or perhaps creating new Easter greetings with different shapes made from typical sweets of the town. Thanks to the previous collaboration within the Dementia Friendly Community project, in another city in southern Italy, Bari, it was

“Funeral”

possible to activate a home delivery service for all the families in the neighborhood. The last concrete example from southern Italy is from Villaricca, on the outskirts of Naples, where a booklet called “Caterina’s advice” was launched. This booklet contained solid advice and good suggestions regarding the correct use of the PPE and how to reduce and manage stress related to confinement. Also interesting are the initiatives that have been created to connect people and their needs, while still respecting personal distance. Through internet social platforms, it has been possible to locate unused PPE (personal protective equipment) and to make such resources available instead for those who need it most. This is the possibly the answer to a new model of solidarity, typical of dementia-friendly communities, which will ensure the care of people within the community. Initiatives are also happening in northern Italy, for example in two of the most industrialised regions and also those regions most affected by COVID-19. The Dementia Friendly Community of Arzignano communicates through short videos sent to families who have a relative with dementia: a greeting from the mayor and the local priest, the physiotherapists who perform some exercises, volunteers and /or operators who sing popular songs. The response of these families was equally rich, immediate, spontaneous and surprising: greetings, photos, videos, songs, recited poems, streaming news of concerts. Numerous acknowledgements have been received in return, as even this distant mode Dementia in Europe 41

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of interaction makes those families feel that someone is thinking about them and trying to take care of them. Finally, from the province of Bergamo, in Lombardy, the region that alone accounts for two thirds of the deaths for COVID-19 in Italy, the “Alzheimer’s office” of the Dementia Friendly Community in Scanzorosciate has replaced personal consultations and home visits, with telephone calls. Stories and advice emerging out of these calls to the office, are shared on social media in a column entitled “Alzheimer’s in the time of COVID-19”. The media posts are enriched with the drawings of a caregiver, who had previously collaborated artistically with the Dementia Friendly Community during the last World Alzheimer Month.

with dementia receives the support they need and deserve. We all must learn from this pandemic, and we must also continue to strive to reach all those who rely on us. Luxembourg On 26 March, Association Luxembourg Alzheimer (ALA), posted a number of photographs on its Facebook account, showing members of staff at work during these difficult times, with the slogan “we are working, so you can stay at home”. Association Luxembourg Alzheimer continues to provide its vital services and also aims to raise awareness of the need for other people to stay home, to help protect vulnerable populations and care workers. On 7 April, Michèle Halsdorf, director of the ALA’s « Beim Goldknapp » care home, was interviewed by national television and radio station, RTL. Speaking about how best to support people living with dementia during the pandemic - particularly those who are no longer in the early stages of dementia – she said that this was “a real challenge”. She stressed the importance of supporting the person with dementia and of reassuring them, in terms they could understand, so as to ensure that they feel safe.

Artwork from the “Konschtatelier” art workshop in Luxembourg

carers of people with dementia, by publishing guidelines and information for carers around the topic of care at home, during confinement. They particularly emphasised the importance of planning and of daily routine and gave suggestions as to how to do this and what might be important to include in a daily schedule. ALA compiled these various guidelines, in both German and French, on its website www.alzheimer.lu. For any questions carers might still have, the ALA helpline is still available 24/7. The number is: 26 432 At the initiative of the German Alzheimer asso- 432 (national calls only). “New technology” ciation (Deutsche Alzheimer Gesellschaft), In conclusion, with so many examples of sol- several associations came together to support idarity to show, we can honestly say that the intricate network created over many years by local associations and the Dementia Friendly Community, has enabled neighborhoods and villages to survive this crisis and be able to rely on the help of volunteers and sensitive people, to activate a network of solidarity for those families who need it most. Those people with dementia and their families who have been reached by all these initiatives, clearly appreciate this support and look forward to new activities through new means of technological communication. Relationships previously built on trust and long experience can survive through the use of new technologies that facilitate smooth communication, which have been tried and tested in these strange times, and they have been a vital part of maintaining trust and routine, for many people with dementia. However, we must always keep in mind that not everyone Association Luxembourg Alzheimer employees hard at work during the pandemic 42 Dementia in Europe

FOCUS ON COVID-19

Finally, to bring a bit of colour and fun to its Facebook page during these sombre times, the ALA organised a virtual art exhibition, presenting works from its «Konschtatelier», an art workshop which uses art therapy methods. The artists themselves chose to focus the works around a quote from Swiss artist Paul Klee, who said “Art does not reproduce what is visible, it makes things visible”. France In response to the coronavirus pandemic, France Alzheimer created several resources aimed at supporting people with dementia, their families and caregivers. On 18 March 2020, France Alzheimer announced that its 99 “We are working, so you can stay at home” departmental associations would be setting up additional telephone helplines staffed by followed, offering reassurance and stabiltrained volunteers, aiming to provide support ity and reducing anxiety. The importance and information to those in need. of remaining physically and cognitively active is emphasised, and several suggesFrance Alzheimer has also published advice tions for physical and cognitive activities for carers and caregivers of people living with are provided, such as doing craft projects, lisdementia, highlighting ways in which they tening to music, doing stretching exercises can provide support in the home or in care and walking on the spot. France Alzheimer institutions. These include demonstrating also encourages people to use technology, good hand washing techniques, ensuring a devices and telephone conversations, where good supply of prescription medication, and possible, to remain connected with friends making sure that people with dementia can and family. keep in touch with their family and caregivers via phone calls, emails or letters. For more information, visit: www. francealzheimer.org/covid-19-conseilsTo support people with dementia who are pour-les-aidants-et-personnes-maladesisolated at home, France Alzheimer suggests dalzheimer-ou-dune-maladie-apparentee/ creating a structured routine that can be

Finland In Finland, the novel coronavirus outbreak started in March. People started working from home, care homes closed their doors to visitors and all individuals over 70 were asked to avoid contact with others. Local associations and “Muistiluotsi” expert and support centres of the Alzheimer Society of Finland cancelled all activities, events and peer support groups, for the time being. This meant a significant change for the people with memory-related diseases and their families. The Alzheimer Society of Finland wanted to know more and sent a survey to local associations asking about the situation. The survey showed that the situation is difficult in many ways: Since visits to care homes have not been allowed, people are missing their loved ones and are worried about them. People with memory-related diseases living at home and their families are having trouble as well. Carers do not get any free time because all activities for the people needing their support are cancelled, so they are getting tired. People with memory-related diseases living alone are cut off from the world and are lonely. There have, however, been some positive sides as well. As soon as all activities were cancelled, local professionals started thinking

France Alzheimer published COVID-19-related resources on its website

Dementia in Europe 43

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deterioration of one person with dementia to “falling off a cliff edge”.

Katariina Suomu

about new ways to reach their members. Peer support groups were organised virtually, using a variety of online platforms. These meetings were well-received. Some associations have been making videos and publishing them on YouTube, encouraging people to sing or to exercise. Others have been calling their members and asking how they are doing, as well as sending letters and work packages to help them remain active. The “Muistineuvo” memory advice phone support answers questions regarding memory-related diseases. Before the outbreak, the phone-line was open three days a week. The opening times have now been extended to five days a week, to ensure more coverage and support at this difficult time. “Despite all the challenges COVID-19 has brought to both people with memory-diseases and their carers and our organisation, I feel happy and proud, when I see the agility and innovativeness of our professionals. They really are doing their best to help our clients in these difficult times”, said Katariina Suomu, Executive Director of the Alzheimer Society of Finland .

suspended, people affected by dementia required alternative practical or emotional support, or both (e.g. advice on local supports, The research, published on 1 April and which dog walking and regular check-ins). Comincluded the views of 160 people with demen- munity Champions were also asked about tia, family carers, Dementia Advisers, and alternative sources of support that were Dementia: Understand Together Commu- already in place in their communities, with nity Champions, found that 73.3% of people respondents identifying volunteer networks with dementia felt they needed some sup- offering practical assistance and meals-onport during the crisis, with most requiring wheels services that are currently in action. both practical (e.g. shopping) and emotional supports (e.g. regular telephone check-ins). The ASI has continued to support people Of note, only 31.3% were comfortable using with dementia and their families, insofar as the internet. its Home Care, Dementia Advisers, Alzheimer National Helpline and Online Family Carer 77.6% of family carers reported needing Training all continued to operate. In addition, supports including practical supports (e.g. The ASI implemented new ways of providing shopping, information) and emotional supports remotely, such as regular telephone supports (e.g. peer support). Many cited calls and activity packages for people to use heightened anxiety and stress, with feelings in their own homes. of helplessness, worry for their loved ones with dementia, and concerns about the The full report can be found here: www. impact of social isolation. In particular, car- alzheimer.ie/wp-content/uploads/2020/04/ ers expressed that they were worried about FINAL-Research-survey-results-ongetting sick themselves and not being able need-1 st-April-2020.pdf to care for loved ones. In addition to this, a new resource on “At Home In addition, almost 95% of Dementia: Under- Activities” was published, aimed at people livstand Together Community Champions felt ing with dementia and their supporters, during that with local services such as daycare, the COVID-19 confinement period. Alzheimer Cafes and community activities This extensive resource, which contains many suggested activities together with clear and concise information and instructions, was the result of a collaboration between The Alzheimer Society of Ireland and Ireland’s Health Service Executive (HSE), as part of the “Understand Together” campaign.

Ireland Research carried out by The Alzheimer Society of Ireland (ASI) to identify the current challenges brought about by the COVID-19 health crisis, as experienced by people with dementia and family carers, found a rise in the cases of isolation, loneliness, boredom, anxiety and fear. The ASI’s Dementia Advisers reported an increase in responsive behaviour from people with dementia including confusion, paranoia, delusions, agitation, and other behavioural changes, with one Dementia Adviser comparing the

44 Dementia in Europe

You can read and download the resource, here (free): www.understandtogether.ie/ Training-resources/Helpful-Resources/Publications/At%20Home%20Activities.pdf Elsewhere in Europe

The ASI and HSE jointly published a resource on homebased activities

Alzheimer associations across Europe are working tirelessly, during this pandemic, to support people with dementia and carers, at the local and national levels. You can read a selection of articles about what they have been doing, here: www.alzheimer-europe. org/News/COVID-19-situation

FOCUS ON COVID-19

Living with dementia during the COVID-19 pandemic Chris Roberts was diagnosed with early onset mixed dementia (vascular and Alzheimer’s) in 2012, when he was in his early 50s. He is the Vice-Chairperson of the European Working Group of People with Dementia (EWGPWD) and his wife, Jayne Goodrick, is his supporter. They each give us their perspective on life since the COVID-19 pandemic began and on the impact it has had for them as individuals and on their family.

my own mental health for a few years already and have become used to not seeing most of my friends anymore; I don’t have a driving license, so no transport, car, van or motorcycle to get out and about; I don’t function very well in big groups or noisy places, so I usually keep away or sit to one side; and I haven’t been fully in touch with reality for some time, the ‘real world’ being just out of my reach as it were. So…living with dementia symptoms really does prepare you for these trying times - welcome to my world, everyone!

I do miss my family and close friends but thanks to technology we have kept in touch Chris Roberts comfortable in myself but yet also a bit con- quite regularly, even having family quiz cerned and slightly guilty that being isolated nights. We have had online meetings, using We had just picked up our, new-to-us, motor- did not actually seem to be having much of conference software, with the members and home on 4 March and went away for a couple a negative effect on me, despite having an friends in the EWGPWD and at Alzheimer of days to get to know it better. While we impact on most people. Europe. After all, work and projects concernwere away, we were watching the news about ing global awareness and research have to COVID-19, how it was spreading and the Once I realised that self-isolation hasn’t been carry on, as dementia will still be here when increase in numbers of those who had con- bothering me that much, I fell to wondering COVID-19 has gone! tracted it. We saw that a potential lock-down why…and here is what I came up with: was coming and decided to return home back Jayne Goodrick to Wales. I think I’m fairly practical and resilient anyway; I have not been a ‘people person’ since The COVID-19 confinement measures started Restaurants and bars were starting to be I’ve been living with dementia; I like my own for on 17 March, St Patrick’s Day. closed and public gatherings were also being company (and Jayne’s, luckily!); I have usulimited or stopped, to try and slow down the ally worked mostly on my own; I have never We had picked up our motorhome on 4 March, risk of spreading the virus. We discussed the needed or thought to ask for help from any- and brought it home, very excited to try out impact it might have on us. I have a lung one; I’ve always looked for solutions and not our new vehicle. What plans we had for the disease, emphysema, a form of chronic dwelt on the problems; since my diagnosis summer! The Lake District of Wales, Scotland, obstructive pulmonary disease (COPD), which of dementia, I have not been very socially plans to travel all over the UK. We have a very puts me in the ‘severe risk’ group and so we active, so I have been self-isolating to help busy schedule and so were struggling to find decided to start isolating ourselves a week before the official lock-down in the UK. Most, if not all, of our appointments were being cancelled, and rightly so, but our previously busy schedules doing advocacy work around dementia had suddenly become empty. I was worried about a lack of purpose and focus in my life, as I’m sure that being busy has helped slow down the progression of my dementia. It has progressed, but not as quickly as anticipated. I started making myself busy in the garden to try reduce my anxiety levels and worries, which were a bit overwhelming at first! I soon got into my new role as a gardener and realised I was actually enjoying doing very little in comparison to previously. I felt quite

Chris and Jayne

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time slots to travel such vast distances, whilst still honouring our commitments. Such ‘First World problems’! We were indirectly impacted early on, with various conferences and meetings all over the world being cancelled/postponed, meaning we suddenly had a very empty diary. We were due at a research meeting on 10 March, in London. Signs of infection were there, but no-one was unduly worried. However, we couldn’t get there as there was some problem in the train signalling office - a fire or alarm - and by the time we approached the last stop before London, the UK’s Coronavirus epicentre, all trains were halted into and out of Euston station. Looking back, I genuinely believe that it was ‘the gods’ looking after us, when we had to turn and go home. It took us 10 hours from leaving the house, to arriving back. After that, chaos reigned around us, with the full realisation of the seriousness of this pandemic.

The new campervan

The funeral of a friend who had young onset dementia was attended by family only, and also five of us wives who, when asked if we were family, chorused as one, “Yes!”

But…Chris’ anxiety ramped up to the next level. He had been busying himself in the With our new free time we jumped in the van garden, but now he went into overdrive. and headed off to self-isolate in the beauty Pruning bushes ended in them being cut to spots of North Wales, and met some friends the ground (I think it’s called coppicing), the in their motorhome at a reservoir in the drive was scraped of all weeds, then weed middle of nowhere. On 16 March, Boris John- killer applied, then cleared again after a few son, the UK Prime Minister, made a national days. I left him to it, because to be honest, the announcement that was very sobering, and it driveway needed it! But Chris would come in all became more real. We headed back home dripping in sweat, filthy with dust, scratched, the next day, St Patrick’s day, 17 March. bruised, and unsure of where or what was going on, in that moment. Due to Chris’ emphysema and therefore being classed as ‘high risk’, we went straight into He hadn’t had water or been to the toilet. He self-imposed isolation. Our adult daugh- only stopped when I called him in for suster lives with us, and so we all practiced tenance of some sort. His sleep patterns social distancing in the house. We have a became very disturbed again. large house, so luckily it wasn’t too difficult. Not long after this, the regular daily update I found out I am a pretty good cook! I even changed time from 5pm to 8.30. That was on baked custard tarts, which were delicious! Monday 23 March. It was obvious to us what this meant – an announcement that we were Our daughter Kate brings us fresh food as we going into lockdown. need it, bread, milk, veg. That’s all we generally need as I have always had a very well Within 15 minutes of the announcement, stocked store cupboard and freezer (thanks, our daughter left home. She is a key worker Mum!). looking after young children and she was not prepared to risk bringing the infection into And so, we settled into routine. It has been our house, and so moved out. That was a very described by some as Groundhog Day, but we surreal moment, and I insisted on hugging see it differently. We are living in the moment. her tight as I didn’t know when I would next be able to do so. Our son’s wedding on 13 Wake up. Coffee. Dress, or not. Eat. Potter in April had to be postponed until November. the garden/house. No commitments. 46 Dementia in Europe

No demands on our time. And it is true to say that we are enjoying that. We are very comfortable with it. And that has become our new routine, and routine is very dementia friendly. No demands on time. But Chris’ vocabulary has decreased. His fluency has lessened. He struggles now to speak a full sentence without stammering, struggling to say a word, that’s if he can find the right word, the one he wants. Because he is not using those conversing skills. When out at meetings, at conferences, at the ‘de-briefs’ afterwards, there are many different conversations, questions, opinions being asked of him. Of us all. And our brains have to work, the synapses have to fire, and when a blockage is met, re-route to find a new way to convey the response. Lots of stimulation and using of skills. And then by the time overload comes, he, we, can withdraw and recuperate ready for the next one. And that, for now, is on hold. We hope that we can get him back to where he was pre-lockdown, but we don’t know that he will. We do know that once a skill is lost to dementia, it doesn’t come back, but this is an artificial de-skilling, so we live in hope. Because hope is all that we have. And a lovely garden. The garden is once again looking great! *Side note: We found out our motorhome friends were infected, he very nearly being admitted to hospital, and we believe our daughter may have had a very mild case of COVID-19, but we remain very healthy.

Alzheimer Austria BELGIUM – BRUSSELS Ligue Nationale Alzheimer Liga BELGIUM – BRUSSELS Ligue Nationale Alzheimer Liga BOSNIA & HERZEGOVINA - SARAJEVO Udruženje AiR BOSNIA & HERZEGOVINA - SARAJEVO Udruženje AiR BULGARIA – SOFIA Alzheimer Bulgaria BULGARIA – SOFIA Alzheimer Bulgaria BULGARIA - VARNA Foundation Compassion Alzheimer BULGARIA - VARNA Foundation Compassion Alzheimer CROATIA – ZAGREB Alzheimer Croatia CROATIA – ZAGREB Alzheimer Croatia CYPRUS – LARNACA Pancyprian Alzheimer Association CYPRUS – LARNACA Pancyprian Alzheimer Association CZECH REPUBLIC – PRAGUE Czech Alzheimer’s Society CZECH REPUBLIC – PRAGUE Czech Alzheimer’s Society DENMARK – HELLERUP Alzheimerforeningen DENMARK – HELLERUP Alzheimerforeningen FINLAND – HELSINKI Muistiliitto FINLAND – HELSINKI Muistiliitto FRANCE – PARIS Association France Alzheimer FRANCE – PARIS Alzheimer Europe Members Association France Alzheimer GERMANY – BERLIN HUNGARY – BUDAPEST Deutsche Alzheimer Gesellschaft e.V. Alzheimer Social Cluster Association GERMANY – BERLIN Europe Members Deutsche Alzheimer Gesellschaft e.V. GREECE – THESSALONIKI HUNGARY Panhellenic Federation of Alzheimer’s ICELAND –Hungarian REYKJAVIK Alzheimer Society Alzheimer Europe Members GREECE – THESSALONIKI and Related Disorders Alzheimer Disease IcelandAlzheimer Europe Members Panhellenic Federation of Alzheimer’s GREECE – THESSALONIKI ICELANDand - REYKJAVIK Disease Related Disorders Panhellenic of Alzheimer’s HUNGARY –Federation BUDAPEST The Alzheimer’s Association of Iceland IRELAND –Disease DUBLIN Social Cluster Association and Related Disorders

Our members are helping people with dementia and their carers in 35 countries

Our members are helping people with dementia and their Our members are helping carers in 34 countries people with dementia and their Alzheimer Europe Members Our members are helping Our members are helping carers in 32 countries people with dementia and their their people with dementia and carers in in 32 32 countries countries carers

AUSTRIA – VIENNA Alzheimer Austria ALBANIA ALBANIA – TIRANA ALBANIA

BELGIUM – BRUSSELS Alzheimer AlzheimerAlbania Albania Alzheimer Albania Ligue Nationale Alzheimer Liga

AUSTRIA – VIENNA Alzheimer Austria

BOSNIA & HERZEGOVINA – SARAJEVO HUNGARY Hungarian Alzheimer Society Udruženje AiR BULGARIA – SOFIA Alzheimer Bulgaria CROATIA – ZAGREB Alzheimer Croatia

BELGIUM BRUSSELS AUSTRIA ––– VIENNA VIENNA AUSTRIA AUSTRIA –Austria VIENNA Ligue Nationale Alzheimer Liga Alzheimer Alzheimer Austria Alzheimer Austria BOSNIA - SARAJEVO BELGIUM&––HERZEGOVINA BRUSSELS BELGIUM BRUSSELS BELGIUM –AiR BRUSSELS Udruženje Ligue Nationale Nationale Alzheimer Liga Liga Ligue Alzheimer Ligue Nationale Alzheimer Liga BULGARIA – SOFIA BOSNIA & & HERZEGOVINA HERZEGOVINA SARAJEVO BOSNIA -- SARAJEVO BOSNIA & Bulgaria HERZEGOVINA - SARAJEVO Alzheimer Udruženje AiR Udruženje AiR Udruženje AiR

CYPRUS – NICOSIA BULGARIA VARNA SOFIA BULGARIA -––and SOFIA Cyprus Alzheimer’s Association BULGARIA –Compassion SOFIA Foundation Alzheimer Alzheimer Bulgaria Bulgaria Alzheimer Related Dementias, Forget-Me-Not Alzheimer Bulgaria CROATIA BULGARIA– --ZAGREB VARNA BULGARIA VARNA BULGARIA - Compassion VARNA Alzheimer FoundationCroatia Alzheimer CZECH REPUBLIC – PRAGUE Foundation Compassion Alzheimer Foundation Compassion Alzheimer

Czech Alzheimer’s Society

CYPRUS CROATIA–––LARNACA ZAGREB CROATIA ZAGREB CROATIA ZAGREB Association Pancyprian Alzheimer Alzheimer–Croatia Croatia Alzheimer DENMARK – COPENHAGEN Alzheimer Croatia

Alzheimerforeningen CZECH – PRAGUE CYPRUSREPUBLIC LARNACA CYPRUS –– LARNACA CYPRUS – LARNACA Czech Alzheimer’s Society Pancyprian Alzheimer Association Pancyprian Alzheimer Association Pancyprian Alzheimer Association

ESTONIA – TALLINN NGO Living with Dementia DENMARK – HELLERUP

DENMARK – HELLERUP CZECH REPUBLIC REPUBLIC PRAGUE CZECH –– PRAGUE CZECH REPUBLIC –Society PRAGUE Alzheimerforeningen Czech Alzheimer’s Alzheimer’s Czech Society Czech Alzheimer’s Society

FINLAND – HELSINKI FINLAND – ––HELSINKI DENMARK HELLERUP Alzheimer Society of Finland (Muistiliitto) DENMARK HELLERUP DENMARK – HELLERUP Muistiliitto Alzheimerforeningen Alzheimerforeningen Alzheimerforeningen

FRANCE – PARIS France Alzheimer

FRANCE FINLAND–––PARIS HELSINKI FINLAND HELSINKI FINLAND – HELSINKI Association France Alzheimer Muistiliitto Muistiliitto Muistiliitto

– BERLIN FRANCE –– PARIS PARIS GERMANY – BERLIN GERMANY FRANCE FRANCE – Alzheimer PARIS Deutsche Gesellschaft e.V. Association France Alzheimer Deutsche Alzheimer Gesellschaft e.V Alzheimer Association France Association France Alzheimer

GREECE – THESSALONIKI GERMANY BERLIN GERMANY –– BERLIN GERMANY –Federation BERLIN Gesellschaft GREECE – THESSALONIKI Panhellenic of Alzheimer’s Deutsche Alzheimer Alzheimer e.V. Deutsche Gesellschaft e.V. Alzheimer Disease and Related Gesellschaft Disorders e.V. Panhellenic FederationDeutsche of Alzheimer’s

Disease and Related Disorders

GREECE –– THESSALONIKI THESSALONIKI GREECE GREECE – THESSALONIKI Panhellenic Federation of of Alzheimer’s Alzheimer’s Panhellenic Federation Panhellenic Federation of Alzheimer’s Disease and Related Disorders Disorders Disease and Related Disease and Related Disorders

The Alzheimer Society of Ireland

The Alzheimer’s Association of Iceland IRELAND – DUBLIN The Alzheimer Society of Ireland IRELAND – DUBLIN The Alzheimer Society of Ireland ISRAEL – RAMAT GAN EMDA – The Alzheimer’s Association of ISRAEL – RAMAT GAN Israel EMDA – The Alzheimer’s Association of Israel ITALY – MILAN Federazione Alzheimer Italia ITALY – MILAN Federazione Alzheimer Italia ITALY – ROME Alzheimer Uniti Onlus ITALY – ROME Alzheimer Uniti Onlus JERSEY – ST HELIER Jersey Alzheimer’s Association JERSEY – ST HELIER Jersey Alzheimer’s Association LUXEMBOURG – LUXEMBOURG Association Luxembourg Alzheimer LUXEMBOURG – LUXEMBOURG Association Luxembourg Alzheimer MALTA – MSIDA Malta Dementia Society MALTA – MSIDA Malta Dementia Society MONACO – MONTE-CARLO AMPA - Association Monégasque pour MONACO – MONTE-CARLO la recherche sur la maladie d’Alzheimer AMPA - Association Monégasque pour la recherche sur la maladie d’Alzheimer NETHERLANDS – AMERSFOORT Alzheimer Nederland NETHERLANDS – AMERSFOORT Alzheimer Nederland NORWAY – OSLO Nasjonalforeningen Demensforbundet NORWAY – OSLO POLAND – WARSAW Nasjonalforeningen Demensforbundet Polskie Stowarzyszenie Pomocy Osobom POLAND – WARSAW z Chorobą Alzheimera Polish Alzheimer’s Association POLAND – WARSAW Polish Alzheimer’s Association PORTUGAL – LISBON PORTUGAL – LISBON Alzheimer Portugal Alzheimer Portugal ROMANIA ––BUCHAREST PORTUGAL LISBON SocietateaPortugal Alzheimer Alzheimer

ROMANIA – BUCHAREST

IRELAND DUBLIN ICELAND –-- REYKJAVIK REYKJAVIK ICELAND ICELAND --REYKJAVIK ICELAND REYKJAVIK The Alzheimer Society of Ireland Alzheimer’s Association of Iceland Iceland TheAlzheimer’s Alzheimer’s Association of The The Alzheimer’sAssociation Associationof ofIceland Iceland

SLOVAKIA BRATISLAVA Societatea Alzheimer Romania ROMANIA BUCHAREST ROMANIA –– BUCHAREST ROMANIA –Alzheimer BUCHAREST Slovak Alzheimer’s Society Societatea Societatea Alzheimer Societatea Alzheimer

TheAlzheimer Alzheimer Societyof of Ireland The The AlzheimerSociety Society ofIreland Ireland Israel

SLOVENIA SLOVAKIA ––– LJUBLJANA BRATISLAVA SLOVAKIA BRATISLAVA Slovenská Alzheimerova spoločnost SLOVAKIA –“Forget-me-not” BRATISLAVA Association Slovak Alzheimer’s Alzheimer’s Society Slovak Society Slovak Alzheimer’s Society

ISRAEL – PETAH TIKVA EMDA – The Alzheimer’s Association ISRAEL – RAMAT GAN IRELAND – DUBLIN DUBLIN IRELAND –––DUBLIN of Israel IRELAND IRELAND DUBLIN EMDA – The Alzheimer’s of The Alzheimer Society ofAssociation Ireland

SLOVAKIA – BRATISLAVA

ISRAEL –– RAMAT RAMAT GAN GAN ITALY – MILAN ISRAEL ISRAEL – RAMAT GAN ISRAEL RAMAT GAN Association of ITALY ––MILAN EMDA The Alzheimer’s EMDA The Alzheimer’s Associationof of Federazione Alzheimer Italia EMDA ––The Alzheimer’s Association

SPAIN – MADRID SLOVENIA LJUBLJANA SLOVENIA – LJUBLJANA SLOVENIA –– LJUBLJANA SLOVENIA –Alzheimer LJUBLJANA Fundación España Slovenija Association “Forget-me-not” Spominčica – Alzheimer Association “Forget-me-not” Association “Forget-me-not”

ITALY – ROME ITALY –– MILAN ROME MILAN ITALY ––Onlus MILAN Alzheimer ITALY Uniti ITALY MILAN Alzheimer Uniti Onlus Italia Federazione Alzheimer Italia Federazione Alzheimer

SPAIN –– MADRID PAMPLONA MADRID SPAIN SPAIN – Alzheimer MADRID España SPAIN – MADRID C.E.A.F.A. Fundación Fundación Alzheimer España Fundación Alzheimer España Fundación Alzheimer España

EMDA Association of Federazione Alzheimer Italia Israel – The Alzheimer’s Israel Israel Israel

Federazione FederazioneAlzheimer AlzheimerItalia Italia

JERSEY ST HELIER ITALY ––ROME ROME ITALY JERSEY – ST HELIER ITALY –––ROME ITALY ROME Jersey Alzheimer’s Association Alzheimer Uniti Onlus Onlus Alzheimer Uniti Jersey Alzheimer’s Association Alzheimer AlzheimerUniti UnitiOnlus Onlus LUXEMBOURG – LUXEMBOURG JERSEY –– ST ST HELIER HELIER JERSEY

JERSEY –LUXEMBOURG JERSEY –ST STHELIER HELIERAssociation LUXEMBOURG Association Luxembourg Alzheimer Jersey–Alzheimer’s Alzheimer’s Jersey Association Jersey Alzheimer’s Association Jersey Alzheimer’sAlzheimer Association Association Luxembourg MALTA – MSIDA–– LUXEMBOURG LUXEMBOURG LUXEMBOURG LUXEMBOURG LUXEMBOURG LUXEMBOURG––LUXEMBOURG LUXEMBOURG

Malta Dementia Society Alzheimer Association Luxembourg Alzheimer Association Luxembourg MALTA – MSIDA Association AssociationLuxembourg LuxembourgAlzheimer Alzheimer Malta Dementia Society MONACO – MONTE-CARLO MALTA –– MSIDA MSIDA MALTA MALTA ––MSIDA MALTA MSIDA Society AMPA -Dementia Association Monégasque pour Malta Dementia Malta Society Malta Dementia Society Malta Society MONTENEGRO –Dementia PODGORICA la recherche sur la maladie d’Alzheimer

NVO Futura

MONACO –– MONTE-CARLO MONTE-CARLO MONACO MONACO ––MONTE-CARLO MONACO MONTE-CARLO NETHERLANDS – AMERSFOORT AMPA -- Association Association Monégasque pour pour AMPA Monégasque AMPA --Association Monégasque pour AMPA Association Monégasque pour Alzheimer Nederland la recherche recherche sur la la maladie maladie d’Alzheimer la sur d’Alzheimer lala recherche sur NETHERLANDS – AMERSFOORT recherche surlalamaladie maladied’Alzheimer d’Alzheimer

Alzheimer Nederland

NORWAY – OSLO NETHERLANDS – AMERSFOORT AMERSFOORT NETHERLANDS NETHERLANDS –––AMERSFOORT NETHERLANDS AMERSFOORT Nasjonalforeningen Demensforbundet Alzheimer Nederland Nederland Alzheimer Alzheimer Nederland Alzheimer Nederland NORTH MACEDONIA – SKOPJE

Alzheimer Disease Association of POLAND NORWAY–––WARSAW OSLO NORWAY OSLO MacedoniaNORWAY NORWAY––OSLO OSLO

Polish Alzheimer’s Association Nasjonalforeningen Demensforbundet Nasjonalforeningen Demensforbundet Nasjonalforeningen NasjonalforeningenDemensforbundet Demensforbundet

PORTUGAL – LISBON POLAND WARSAW NORWAY –POLAND OSLO –– WARSAW POLAND – Portugal WARSAW Alzheimer Polish Alzheimer’s Alzheimer’s Association Polish Association Nasjonalforeningen for folkehelsen Polish Alzheimer’s Association PORTUGAL –– LISBON LISBON PORTUGAL PORTUGAL – LISBON Alzheimer Portugal Portugal Alzheimer Alzheimer Portugal

SWEDEN – LUND SPAIN –– PAMPLONA PAMPLONA SPAIN SPAIN – PAMPLONA i Sverige Alzheimerföreningen C.E.A.F.A. SPAIN – PAMPLONA C.E.A.F.A. C.E.A.F.A.

Confederación Española de Alzheimer (CEAFA)

SWEDEN –– LUND STOCKHOLM LUND SWEDEN SWEDEN – LUND Demensförbundet Alzheimerföreningen Sverige Alzheimerföreningen ii Sverige Alzheimerföreningen i Sverige

SWEDEN – LUND SWITZERLAND – YVERDON-LES-BAINS SWEDEN STOCKHOLM Alzheimer Sverige SWEDEN –– STOCKHOLM SWEDEN – STOCKHOLM Association Alzheimer Suisse Demensförbundet Demensförbundet Demensförbundet

SWEDEN – STOCKHOLM

TURKEY – ISTANBUL SWITZERLAND YVERDON-LES-BAINS SWITZERLAND –– YVERDON-LES-BAINS Demensförbundet SWITZERLAND – YVERDON-LES-BAINS Alzheimer Vakfı Association Alzheimer Suisse Association Alzheimer Suisse Association Alzheimer Suisse UNITED KINGDOM TURKEY ISTANBUL SWITZERLAND –– EDINBURGH BERN TURKEY –– ISTANBUL TURKEY – ISTANBUL Alzheimer Scotland VakfıAlzheimer Suisse Alzheimer Vakfı Association Alzheimer Vakfı UNITED EDINBURGH UNITED KINGDOM KINGDOM –– LONDON EDINBURGH TURKEY –Society ISTANBUL UNITED KINGDOM – EDINBURGH Alzheimer’s Alzheimer Scotland Alzheimer Scotland Alzheimer Türkiye Scotland Alzheimer Derneği UNITED KINGDOM KINGDOM –– LONDON LONDON UNITED UNITED KINGDOM Alzheimer’s Society – LONDON Alzheimer’s Society UNITED KINGDOM – EDINBURGH Alzheimer’s Society

Alzheimer Scotland

UNITED KINGDOM – LONDON Alzheimer’s Society

Soc SLO Slo SLO Slo SLO Ass SLO Ass SPA Fun SPA Fun SPA C.E SPA C.E SW Alz SW Alz SW De SW De SW Ass SW Ass TU Alz TU Alz UN Alz UN Alz UN Alz UN Alz

30th Alzheimer Europe Conference Dementia in a changing world Virtual Conference 20–22 October 2020 www.alzheimer-europe.org/conferences

#30AEC

The 30th AE Conference receives funding under an operating grant from the European Union’s Health Programme (2014–2020)

Dementia in Europe magazine issue 33, summer 2020

Articles inside

Living with dementia during the COVID-19 pandemic

“We never close!”

Exercise and dementia – Petri Lampinen’s story

Patient and Public Involvement in research

Dementia in the arts: An interview with “Romy’s Salon” director Mischa Kamp

Dementia Friends – keeping up the good work

EURO-FINGERS: Europe at the forefront of Alzheimer’s dementia prevention

ADAIR: Examining the link between air pollution and dementia