Hugo De Jonge Dutch Minister of Health, Welfare and Sport Talks About a More Dementia- Friendly Netherlands

Issue 31 October 2019

Hugo de Jonge Dutch Minister of Health, Welfare and Sport talks about a more dementia- friendly Netherlands

Gerjoke Wilmink Debbie Abrahams MP Ellý Katrín Guðmundsdóttir Alzheimer Nederland Executive Director discusses findings of UK inquiry into how people Chairperson of Iceland’s new dementia working reflects on the organisation’s 35 years with dementia are treated, compared with others group talks about what the group means to her supporting people with dementia with disabilities TABLE OF CONTENTS

Contents

3 Welcome Contact by Iva Holmerová, Chairperson of Alzheimer Europe Alzheimer Europe 14, rue Dicks L-1417 Luxembourg Alzheimer Europe +352 29 79 70 +352 29 79 72 4 Engaging with members of the European Alzheimer’s Alliance www.alzheimer-europe.org 5 Our involvement in two new projects: AD Detect and Prevent, and VirtualBrainCloud [email protected] 9 Making dementia services and support culturally appropriate @AlzheimerEurope alzheimer.europe

Policy Watch

13 Who’s who in the EU?

19 Governmental Expert Group on Dementia discusses national policy developments

22 Data-sharing in dementia research Board 25 Slovenian Prime Minister addresses neurological diseases conference Chairperson: Iva Holmerová (Czech Republic) Vice-Chairperson: Charles Scerri (Malta) Dementia in Society Honorary Secretary: Jim Pearson (UK – Scotland) Honorary Treasurer: Maria do Rosário Zincke 27 Examining the real impact of dementia policy campaigns dos Reis (Portugal) 30 UK inquiry looks at societal barriers for people with dementia Members Helen Rochford-Brennan, Chairperson of 32 Iceland forms a working group of people with dementia the European Working Group of People with Dementia (Ireland) 35 Exploring gene therapy for Alzheimer’s disease Stefanie Becker (Switzerland) Marco Blom (Netherlands) Spotlight on the Netherlands Sabine Jansen (Germany) Pat McLoughlin (Ireland) Sirpa Pietikäinen (Finland) 37 Alzheimer Nederland celebrates 35 years helping people with dementia Jesús Rodrigo (Spain) 41 “Dementia Event” organised for and by people with dementia Karin Westerlund (Sweden)

43 Dutch Health Minister discusses a more dementia-friendly Netherlands Staff Jean Georges, Executive Director 45 Refl ecting on the Deltaplan Dementie Christophe Bintener, Project Offi cer Cindy Birck, Project Offi cer Kate Boor Ellis, Communications Offi cer Angela Bradshaw, Project Offi cer Ana Diaz, Project Offi cer Dianne Gove, Director for Projects Gwladys Guillory, Event and Conference Coordinator Owen Miller, Policy Offi cer Aideen O’Brien, Administrative Assistant Stefanie Peulen, Finance Offi cer Grazia Tomasini, Administrative Assistant

Photo credits Morgunblaðið (Iceland) Tadej Bernik (Slovenia) Council of Europe European Commission European Parliament Innovative Medicines Initiative Ministry of Health, Welfare and Sport (Netherlands)

2 Dementia in Europe Layout: The Publishing Bureau WELCOME

Welcome

the European Parliament elections in May We then turn our attention to Iceland, where 2019 and the appointment of key Commis- a new working group of people with demen- sioners for the next fi ve years. It also includes tia was formed at the start of the year. I an update on the Governmental Expert Group would like to congratulate our colleagues on Dementia, which met for the second time at Alzheimer Iceland for convening this in June 2019. The meeting was attended by group and thank them for paying tribute to representatives from 20 European coun- Alzheimer Europe’s European Working Group tries, as well as work package leads from of People with Dementia (EWGPWD), which the 2nd European Joint Action on Dementia they say was the inspiration for the Icelandic and representatives from the World Health group. You can read about the group’s aims Organization (WHO). Conversations focused and progress made so far. Last but not least, on timely diagnosis and post-diagnostic sup- two of my Alzheimer Europe colleagues, pro- Iva Holmerová, Chairperson of Alzheimer Europe port, care coordination, residential care and ject offi cers Angela Bradshaw and Cindy Birck, dementia-friendly communities. It is truly have put together a discussion piece on gene I am pleased to welcome you to the 31st edi- heartening to see the willingness of so many therapy for Alzheimer’s disease (AD). Readers tion of Dementia in Europe – the Alzheimer countries to use this important platform to can fi nd out more about what gene therapy Europe magazine. exchange knowledge and expertise. is, and whether or not it might be useful in the future treatment of AD. The fi rst section of our magazine highlights We then take a look at the ins-and-outs of some of our efforts to ensure dementia data-sharing in clinical research projects. Our fi nal section shines a spotlight on the remains a European priority. It begins with an The work we are doing in this area, which Netherlands and on Alzheimer Nederland, update on progress in reconvening the new will be published at the end of 2019, is made examining the excellent work taking place in European Alzheimer’s Alliance, the non-ex- possible thanks to a grant from Gates Ven- the country. Alzheimer Nederland is co-host- clusive, multinational and cross-party group tures. Our policy section concludes with a ing our 29th Alzheimer Europe Conference that brings together Members of the Euro- piece about the policy outcomes of a recent “Making valuable connections” (#29AEC) in pean Parliament (MEPs) to support Alzheimer Spominčica (Alzheimer Slovenia) conference, The Hague. As well as looking at the his- Europe and its members to make dementia “In the Rhythm of the Human Brain”, held in tory and work of our co-hosts, this section a policy priority in Europe. This section also Ljubljana earlier this year under the honor- includes an interview with people living highlights some of the work to engage with ary patronage of Prime Minister Marjan Šarec, with dementia, who share their refl ections MEPs as the new parliamentary term com- who was a keynote speaker. following the “Dementia Event ” – a national mences and the political agenda for the next gathering for and by people with dementia. fi ve years is shaped. Our third section, Dementia in Society, Finally, we are delighted to have an interview begins with a piece about policy cam- with the Dutch Health Minister, as well as an We are pleased to present two new EU-funded paigning at local and national levels. Two of update on the country’s national dementia projects in which we are actively involved, Alzheimer Europe’s national members asso- strategy – the Deltaplan Dementie. Alzheimer’s Disease Detect and Prevent and ciations, The Alzheimer Society of Ireland VirtualBrainCloud. This fi rst section concludes and Muistiliitto – Alzheimer Society of Fin- If you are reading this magazine at our con- with an in-depth look at our ethics report on land, highlight the impact such campaigns ference, I warmly welcome you to The Hague. making services and support for people with can have in terms of concrete outcomes. dementia appropriate for people from all eth- Next, Debbie Abrahams MP, Co-chair of the Happy reading! nic communities. The work for this report was UK Government’s All Party Parliamentary carried out by an expert working group set Group (APPG) on Dementia, reveals some of up by Alzheimer Europe last year. the key fi ndings of the group’s report, “Hid- den no more: Dementia and disability”. The The Policy Watch section presents a “who’s report highlights the fact that people with who” of some of the key leaders and deci- dementia are treated diff erently to those sion-makers in the European Union following with other health conditions or disabilities.

Dementia in Europe 3 ALZHEIMER EUROPE

yy Employment and Social Affairs commit- Engaging with European tee (EMPL) – Eight EAA members sit on this committee yy Environment, Public Health and Food Alzheimer’s Alliance Safety committee (ENVI) – Eight EAA members sit on this committee members to make dementia yy Industry, Research and Energy committee (ITRE) – Ten EAA members sit on this a European Priority committee yy Internal Market and Consumer Protection With the European Parliament now sitting for the new committee (IMCO) – Seven EAA members term (2019–2024), Alzheimer Europe has been working to sit on this committee. re-establish the European Alzheimer’s Alliance. Having these connections will allow Alzheimer Europe to better engage with decision-makers within the parliament, par- their countries. These letters highlighted the ticularly when seeking to influence legislation importance of treating dementia as an area at the committee stages. of priority, including within the Horizon 2020/ Europe research programmes, the European Pil- EAA Chair and Vice Chairs lar of Social Rights and the Health Programme. Following the European elections in May 2019, The letters also contained four specific asks: As we announced in Dementia in Europe 30 Alzheimer Europe has been working with its (June 2019), Sirpa Pietikäinen MEP (Finland) members to ensure that dementia remains a yy Raise a question during hearings of can- has agreed to become the chair of the EAA priority at a European level. This work builds didates for the Council of Commissioners, in the year ahead. To ensure that we have a on the foundations laid during the #Demen- asking how they will ensure dementia is balance of representation across the political tiaPledge2019 campaign, in which we asked prioritised within their remit. spectrum, Alzheimer Europe has also written candidates to commit to joining the Euro- yy Ensure that dementia is considered dur- to EAA pledgees from the EPP, S&D, Reform pean Alzheimer’s Alliance (EAA) and working ing the course of the work of the European Europe, the EFA/Greens and GUE/NGL invit- with us if elected. Parliament committees on which they sit. ing them to become Vice Chairs of the group. yy Engage with their country’s national Once confirmed, Alzheimer Europe will post As a result of this campaign, the EAA now has Alzheimer’s/dementia organisation to find the details of the full make-up of the group 91 members and we are working to ensure out what is happening in their country, on its website. they understand the importance of dementia including how to take part in dementia-in- across a range of policy areas, as well as what clusive initiatives. Next steps for the European Alzheimer’s they can do as parliamentarians to ensure it yy Attend Alzheimer Europe’s lunch debate Alliance remains a priority. on 10 December 2019 in the European Par- liament in Brussels, which will examine Over the coming months, the European Com- Letters sent to all Members of the European the benchmarking of national demen- mission will set out its legislative agenda and Parliament tia policies. the policy priorities, which will be pursued over the course of the next five years. Once Following the commencement of the new EAA members on key committees of the details have been announced, Alzheimer parliamentary term at the beginning of June European Parliament Europe will identify the implications for 2019, Alzheimer Europe divided MEPs into dementia policy, working with members of three categories: Alzheimer Europe has been monitoring the the EAA to ensure that these policies reflect developments within the European Parlia- the priorities of people with dementia, their yy MEPs who had signed the ment to identify decision makers who are families and carers. #DementiaPledge2019 well placed to ensure that dementia remains yy MEPs who were previously members of a policy priority at a European level. In the policy section on pages 13–18, we the EAA but did not sign provide a “who’s who” guide to the new yy MEPs who were neither members, nor One aspect of this work has been to identify Commission and Parliament, outlining some signed the pledge. EAA members who sit on relevant committees of the key decision-makers and politicians of the European Parliament. Here, we have pro- who will play an influential role in shaping We then wrote to the first two categories vided an indication of the committees most European policy and legislation, and who can of MEPs and provided template letters for relevant to dementia policy areas and the num- ensure that dementia remains a priority. our members to write to all of the MEPs in ber EAA members who sit on each committee:

4 Dementia in Europe ALZHEIMER EUROPE

Alzheimer Europe involved in two new projects – Alzheimer’s Disease Detect and Prevent and VirtualBrainCloud Alzheimer Europe spoke to the project leads for each of these two Horizon 2020-sponsored initiatives – Kim Baden Kristensen for Alzheimer’s Disease Detect and Prevent and Petra Ritter for VirtualBrainCloud – to discuss concrete objectives, as well as their own hopes and expectations.

Kim Baden-Kristensen speaking at the IMI Stakeholder Forum, Brussels, 12 June 2019 Alzheimer’s Disease Detect consultation with its European Working and Prevent Group of People with Dementia. includes presenting the ADDP project at key events and the launch of a project website. What are the key achievements of the project so far? Alzheimer Europe and the University of Not- tingham have conducted Patient and Public Kim Baden-Kristensen: The project has been Involvement (PPI) workshops and we are progressing fast since kick-off in late 2018. beginning to gain more insight into the Together with researchers at the University perspectives of people with dementia and of Oxford, the team at Brain+ has been devel- their carers with regard to the digital tool. The Alzheimer’s Disease Detect and Pre- oping and testing various prototypes of the This work has yielded some great insights vent project (ADDP) arrives on the scene at proposed AD detection tool in order to gain into how people think about Alzheimer’s an exciting time for brain health research. insight into the type of format that provides dementia, and the idea of taking preventa- In keeping with recent changes in the con- the best user experience, whilst remaining tive measures. ceptualisation of and terminology related to robust for detecting subtle cognitive changes Alzheimer’s disease (AD), ADDP is pursuing in Alzheimer’s disease. A fully gamifi ed and What are your expectations from, and the ambitious aim of developing a digital user-tested AD detection prototype will soon hopes for the project? tool to improve the detection of AD prior to be ready. the possible onset of AD dementia and com- KBK: I believe that early detection is one of bining this with programmes for reducing The next step is to conduct three scientifi c the keys to tackling Alzheimer’s dementia. lifestyle risk factors related to developing studies, which will validate the new technol- There is currently no cure and the impact of AD dementia (see Table 1, overleaf, for fur- ogies. Two of these studies will be designed Alzheimer’s dementia (fi nancially, emotion- ther information on new/current defi nitions to validate the AD detection tool (led by the ally and in terms of quality of life, among related to AD). University of Oxford and Aarhus University) other things), on those who develop it, their and the third one, to validate the AD risk families and on society as a whole, is huge. The project offi cially started on 1 November reduction programmes (led by the University 2018 and is a 2–year project. It has a budget of of Nottingham). We have worked to harmo- A body of scientifi c evidence is emerging, EUR 3.5 million, distributed across 6 partners, nise and align these studies, so that they indicating that brain health can be signifi - with Danish digital therapeutics company provide mutually-supporting data and val- cantly improved through the use of eff ective Brain+ leading the consortium. idation. So far, the research team at Aarhus lifestyle interventions, and our project aims to University has successfully recruited partici- signifi cantly help this process, by means of a Alzheimer Europe is a partner in this project pants for the validation study and the study scientifi cally-validated, easily-accessible and and is contributing towards the communica- will start soon. user-friendly digital tool for use by the public tion and the patient involvement activities. and medical professional alike. Our aim and The latter, is being accomplished by means Working closely with the European Brain Coun- hope is that the digital platform we are devel- of a Patient and Public Involvement (PPI) cil and Alzheimer Europe, we have produced oping will, fi rst, accurately identify individuals approach. AE has already organised a and implemented a dissemination plan. This with Alzheimer’s disease, prior to the onset

Dementia in Europe 5 ALZHEIMER EUROPE

of dementia, at an earlier stage than stand- How will this project benefi t people with for example changes in diet, increasing phys- ard neuropsychological assessments currently dementia and people with neurodegener- ical exercise or improving sleep hygiene. allow. The platform will then recommend and ative diseases in general? provide personalised cognitive, behavioural My personal belief is that many of the things and lifestyle interventions that can help to KBK: The project primarily aims to detect that reduce the risk of developing dementia, reduce the risk of disease progression. Alzheimer’s disease at the preclinical or pro- will also have a positive impact on health for dromal stage, so we can intervene as early people who have already received a diagnosis We hope that by making this tool publicly as possible. The hope is that people who of dementia. This, however, remains to be seen available, it will also help raise awareness of are identifi ed by the technology as being and requires much more work and research. the importance of brain health and, motivate in one of these two stages of Alzheimer’s people to take positive action to reduce their disease, or being at higher risk of progress- Regardless of the situation of any one person, own personal risk of developing dementia. ing from Alzheimer’s disease to Alzheimer’s I believe and hope that our project and the dementia, will immediately be able to take digital platform that we are developing will How the AD detection and risk reduction plat- positive action to improve their brain health. be able to provide long-term health benefi ts, form will be made available to the public in the This action could be anything from seeking by helping people reduce lifestyle risk factors most effi cient manner is something we are immediate medical advice, to engaging in the and lead healthier lives. working on. The AD detection test could poten- risk-reduction programmes currently under tially serve as a pre-screening/warning tool development in this project. Ultimately, we Project partners that aids clinicians, as well as supporting the are seeking to fi nd an eff ective means to halt healthcare system in its early detection eff orts. or at least delay Alzheimer’s disease progres- Brain+, University of Oxford, Aarhus Univer- In addition, we hope to encourage individuals sion, by guiding people to make potentially sity, University of Nottingham, Alzheimer to take up eff ective intervention programmes large and impactful changes to their lifestyles, Europe, European Brain Council. earlier in life, and thus reduce their risk.

Alzheimer’s Disease Detect and Prevent Acknowledgement

[email protected] This project is funded by the European Union’s Horizon 2020 research and inno- www.addp.eu/ vation programme – Fast Track to Innovation (FTI), grant agreement 820636. @addp_eu

Table 1: New defi nitions of A D taken from Alzheimer Europe’s 2016 “Discussion paper on ethical issues linked to the changing defi nitions/use of terms related to Alzheimer’s disease”

Preclinical state The long asymptomatic stage between the earliest changes underlying AD pathology and the fi rst cognitive symptoms. This has two sub-groups:

i. The asymptomatic at risk group which includes people with pathological/abnormal changes in their brains, specifi c to AD but without clinical symptoms of AD ii. The pre-symptomatic group which includes people who carry a dominant genetic variant of AD but do not yet have clinical symptoms of AD. This genetic variant is rare and does eventually lead to AD dementia, but accounts for less than 1.5% of AD dementia cases

Prodromal AD (IWG) or Mild Cognitive Impairment (MCI) due to AD (NIA-AA) The early symptomatic, pre-dementia phase of AD. During this phase, clinical symptoms are present but not severe enough to aff ect activities of daily life and are associated with specifi c biomarker changes.

AD dementia The stage of the disease in which cognitive symptoms are severe enough to aff ect not only memory but also daily life activities.

6 Dementia in Europe ALZHEIMER EUROPE

Prevention of Alzheimer’s Dementia (EPAD) VirtualBrainCloud initiative.

VirtualBrainCloud will develop and validate a decision support system that provides access to high quality multi-disciplinary data to clinicians. The result will be a cloud- The annual worldwide cost of Alzheimer’s based brain simulation platform to support dementia was EUR 777.81 billion in 2015. This personalised diagnostics and treatments in number will rise to EUR 7.4 trillion in 2050. neurodegenerative disease. The EU PRACE Early diagnosis would save up to USD 7.9 tril- (Partnership for Advanced Computing in lion in medical and care costs by 2050 in the Europe) initiative will provide the required US alone. However, the emergent pathology computing infrastructure. The VirtualBrain- is highly variable across people, necessitating Cloud will develop robust solutions for legal individualised diagnostics and interven- and ethical matters by interacting with EU tions. The VirtualBrainCloud addresses this projects such as European Open Science by bridging the gap between computational Cloud, ‘cloud4health’, patient organisations neuroscience and subcellular systems biol- and ELIXIR, an organisation that manages ogy, integrating both research streams into a and safeguards EU research data. unifying computational model that supports Petra Ritter personalised diagnostics and treatments in Our soft ware developers have already pro- neurodegenerative disease. duced highly successful brain simulation and complex diseases. However, we still don’t clinical decision support tools. The resulting fully understand how interactions between The VirtualBrainCloud not only integrates soft ware will be a cloud-based computational genes, proteins and metabolites in the brain existing soft ware tools, it also merges the modelling system that is tailored to the indi- can lead to the development of these condi- eff orts of two big EU initiatives, namely “The vidual, and bridges multiple scales to identify tions. Another problem is that people in the Virtual Brain” (the brain simulation platform key mechanisms that predict neurodegen- early stages of neurodegenerative disease can of the Human Brain Project) and the European erative disease progression and serves as have varying and subtle symptoms, making Precision Decision Support System. it hard for clinicians to accurately diagnose VirtualBrainCloud will and treat patients. What is the background to the VirtualBrain- develop and validate a Cloud project? In developing the VirtualBrainCloud project, decision support system that we wanted to capture some of these indi- provides access to high quality Petra Ritter: More and more people are being vidual diff erences using a computational diagnosed with neurodegenerative diseases brain modelling approach. The main goal of “multi-disciplinary data to such as Alzheimer’s disease (AD). We now this project is to create a cloud-based com- clinicians.” know that there is no single cause for these putational platform for biomedical research

VirtualBrainCloud project General Assembly meeting, Barcelona, 6 September 2019

Dementia in Europe 7 ALZHEIMER EUROPE

In developing the high-performance computer clusters. We will neurodegenerative disease, using the Virtu- also work with data protection specialists alBrainCloud computational platform and VirtualBrainCloud project, and Alzheimer Europe on the legal and ethi- statistical modeling soft ware. The Virtual- we wanted to capture some cal aspects of the project. BrainCloud integrates existing soft ware tools of these individual diff erences and platforms to provide access to high qual- What are the objectives and actions that ity clinical multi-disciplinary data to integrate “using a computational brain will be undertaken by the project? them and make them useful in clinical prac- modelling approach.” tice. By simulating the brain in this way, we PR: In the fi rst stage of the project, we will use hope to better predict how individual neuro- and clinical decision-making, allowing us to multi-disciplinary data from large cohorts of degenerative disease patients might progress, dynamically map gene, protein and metab- participants with dementia and other neu- allowing clinicians to prescribe more rational olite changes to specifi c neurodegenerative rodegenerative diseases, including imaging, and targeted therapies. disease diagnoses. VirtualBrainCloud is a fi rst EEG, biomarker, genomic and proteomic data. step to reach our vision of future healthcare Based on these large datasets, we will develop Project partners where regular, minimally-invasive health pro- disease progression models, particularly fi ling allows early diagnosis and personalised, focusing on the preclinical stages of disease. Charite Universitatsmedizin Berlin, Universite patient-specifi c treatment. d’Aix Marseille, Fraunhofer SCAI, University In the second stage of the project, we want to of Oxford, Forschungszentrum Julich GMBH, Who are the partners involved in the Virtu- model the interacting molecular and cellular Institut du Cerveau et de la Moelle Epiniere alBrainCloud project? events that occur during the development of (ICM), Institut National de Recherche en Infor- neurodegenerative diseases and relate these matique et Automatique (INRIA), Fundacio PR: The VirtualBrainCloud project brings to large-scale changes in the brain. To achieve Institut de Bioenginyeria de Catalunya, Hel- together clinicians, bioinformaticians, biol- this, we are going to use advanced text min- singin Ylopistio, Universita Degli Studi di ogists and computer scientists from existing ing approaches to extract information from Genova, Universidad Complutense de Madrid, programmes such as the Human Brain Pro- the literature, then combine this with molec- Codebox Computer-dienste GMBH, Codemart ject, EPAD and AETIONOMY, two Innovative ular information from biomedical databases. SRL, Eodyne Systems SL, Universitat Wien, Medicines Initiative-funded projects. The EU TP21 GMBH, Alzheimer Europe. PRACE (Partnership for Advanced Comput- Our ultimate goal is to enable the cre- ing in Europe) initiative will help build the ation of personalised brain network cloud computing infrastructure using their simulations for people in the early stages of

Virtual Brain Cloud

Acknowledgement www.cordis.europa.eu/project/ rcn/219020/factsheet/en This project has received funding from the European Union’s Horizon 2020 @TVB_cloud research and innovation programme under grant agreement No 826421.

8 Dementia in Europe ALZHEIMER EUROPE

compliance of people with dementia from Making services and support minority ethnic groups with the diagnostic process; diffi culties distinguishing depres- sion from early dementia; and the lack of for people with dementia culturally appropriate assessment and diagnostic tools. As people from minority ethnic appropriate for people from groups oft en do not get a timely, accurate and full diagnosis, their chances of access- all ethnic communities ing appropriate treatment, support and care are greatly reduced. In 2018, Alzheimer Europe set up an expert working group to write a comprehensive report aimed at improving the Although biomarkers are increasingly playing a role in the diagnostic workup of demen- situation of people with dementia and carers from minority tia, dementia is still very much a clinical ethnic backgrounds. In this article, T. Rune Nielsen, Sahdia diagnosis which relies on verbal interaction, observation of behaviour and cognitive Parveen, Carolien Smits and Dianne Gove highlight some of assessments. The lack of access to profes- the key messages from the report and describe the future sional interpreters and culturally sensitive screening and diagnostic tools is a major goals of the expert working group. challenge facing general practitioners (GPs) and specialists across Europe.

People from minority ethnic groups have a requires cultural awareness, cultural sensi- Using relatives as interpreters may be a right to receive good quality and appropri- tivity, cultural competence, willingness and practical and readily available solution in ate dementia care and support, starting with motivation, as well as support from policy everyday clinical practice but interpretation timely and accurate diagnosis. This does not makers and funders. is a complex skill which requires specialised always happen. Alzheimer Europe set up an training. Assessment and diagnosis may expert working group to write a comprehen- The need for culturally appropriate diag- be improved in some cases if good quality sive report aimed at improving the situation nostic tools interpretation is provided. Most assessment of people with dementia, their carers or sup- and diagnostic tools for dementia, which are porters and professional carers from minority There is evidence that people from minor- used for people from minority ethnic groups, ethnic backgrounds, through the identifi ca- ity ethnic groups do not receive the same have not been validated for those groups. tion and promotion of intercultural care and standard of diagnostic evaluations for Although some tools have been translated support. Intercultural care and support, in dementia and may be more likely to be into a range of languages used by minor- the context of this project, is about looking misdiagnosed. Several factors seem to ity ethnic groups, this alone does not make at ways to respect and respond to the cul- contribute to this, including linguistic and them culturally appropriate. tural diversity of people with dementia, their cultural factors aff ecting evaluations; the relatives and friends and of those caring for way that interpretation is provided, with a Language is not the only factor aff ecting the or supporting people with dementia. This heavy reliance on assistance from relatives; appropriate use of assessment and diagnostic

Members of the expert working group: Jean Georges (LU)* Daphna Golan-Shemesh (ISR) Dianne Gove, Chair (LU) Michal Herz (ISR) Siiri Jaakson (FIN) Ripaljeet Kaur (UK) Debi Lahav (ISR)* T. Rune Nielsen (DK) Sahdia Parveen (UK) Charlotta Plejert (SWE) Mohammed Akhlak Rauf (UK) Carolien Smits (NL) *Not pictured

1st Meeting of Expert Working Group, Bradford, 18 May 2018

Dementia in Europe 9 ALZHEIMER EUROPE

In addition to individual and community barriers, minority ethnic communities experience a number of health care related barriers. There have been several reports to suggest that communities perceive services and health care professionals to lack “cultural sensitivity and knowledge, leading families to mistrust health care professionals and drop out of services.”

tools. Other issues, such as cultural and edu- beliefs that one should care for one’s own cational bias, need to be considered as well. family members, and fi nally; health system level barriers such as mistrust of health care Despite the huge increase in the number of professionals caused by cultural insensitivity, people from minority ethnic groups likely and lack of appropriate services. to develop dementia in the next few decades, little research has been dedicated to There has been considerable focus on the the development of culturally sensitive (or understanding of dementia in minority eth- culturally fair) tools. This is fortunately start- nic communities. There is substantial evidence ing to change, with several assessment and to suggest that there is a poor understanding diagnostic tools having been developed and of what dementia is amongst minority eth- validated across several minority ethnic groups nic communities. The problem is oft en made in Europe during the last fi ve years. Examples worse by the fact that there is no actual word include the Rowland Universal Dementia for “dementia” in many languages spoken by Assessment Scale, the Cross-Cultural Demen- minority ethnic communities. The words used tia Screening Tool, the European Cross-Cultural to translate or describe dementia are oft en Neuropsychological Test Battery and the Mul- derogatory or inaccurate, leading to further ticultural Cognitive Examination. confusion. The causes of dementia are also less well known amongst minority ethnic commu- None of these tools include any culture-spe- nities and many are unaware of the risk factors cific information and can be used across associated with dementia. Research suggests several languages and with people with lim- that individuals from minority ethnic back- ited or no education and/or literacy. The results grounds believe symptoms of dementia to be obtained from such tools should never be con- a normal part of ageing. Other misconceptions sidered as a stand-alone measure of cognitive include dementia being a punishment from function or be used to determine whether a God and dementia being a mental disorder person has dementia but should be combined and thus shameful. with a complete diagnostic evaluation conducted by a qualifi ed health care professional. People from all ethnic The introduction and implementation of these new tools is an important step forward to ena- groups should have access ble equal access to accurate diagnosis and to care and support which appropriate treatment, support and care for corresponds to their cultural people from minority ethnic groups. “beliefs, traditions and ways of Barriers to help-seeking and service uptake life.” Produced and copyright: M A Rauf / Meri Yaadain CiC. There is considerable evidence to suggest As well as a lack of understanding of demen- M A Rauf, a member of the expert working group, that minority ethnic communities do not tia, signifi cant barriers exist at the community kindly agreed to let us use this graphic to help illus- seek support from services until they reach level for families. There is considerable stigma trate some of the issues discussed. It is not the property a “point of crisis”. There are a number of attached to dementia due to the conceptu- of Alzheimer Europe, nor was it produced as part of the group’s work. barriers that prevent minority ethnic com- alisations of the condition discussed above. munities from seeking help. These include: Furthermore, many minority ethnic commu- barriers at the personal level, such as a lack nities subscribe to the cultural value of “fi lial services as community members may per- of understanding about dementia and a lack obligation”, which means that family mem- ceive that, by doing so, they are not fulfi lling of awareness of available services; barriers bers consider it their duty to provide care for their duties. There is a growing evidence base at the community level such as stigma and relatives. This prevents many from accessing to suggest that fi lial obligation can have a

10 Dementia in Europe ALZHEIMER EUROPE

negative impact on wellbeing in family car- possible, work with local community groups. turban). These issues are diffi cult to nego- ers, and on quality of life for the person living Education and training should be made avail- tiate and debate has not resulted in a clear with dementia. able to support health care professionals to consensus. Furthermore, professionals need provide culturally sensitive care. By removing to balance ethical considerations with prac- In addition to individual and community barri- barriers at these three levels, timely access tical, fi nancial and procedural constraints ers, minority ethnic communities experience a to support for minority ethnic communities (e.g. interpreters are oft en not available on number of health care related barriers. Several can be improved. a 24–hour basis). reports suggest that there is oft en a perception in the community that health care profession- Improving support to and from profes- The acquisition of cultural and ethical als lack cultural sensitivity and knowledge, sional carers competence represents a challenge for pro- which in turn leads to a mistrust in health care fessionals from the majority ethnic group. professionals and a dropping out of services. Most of the care offered to people with However, whilst professional carers from dementia from minority ethnic groups is minority ethnic groups oft en have the advan- By delivering culturally appropriate and tar- provided by spouses, partners and relatives. tage of having knowledge of the language geted dementia awareness initiatives within Health and social care professionals can help and the cultural perspective of the person the community, dementia awareness can be improve the quality of life of both the person with dementia and the informal carer (e.g. improved and stigma reduced. This approach with dementia and the informal carer, but in the case of cultural and ethnic matching), has been successfully utilised in Bradford they need to be motivated and skilled in order they may also face challenges. They may, for (United Kingdom), for example. By working to provide care that is truly appreciated. Pro- example, experience tensions between high in partnership with minority ethnic com- fessional caregivers may put a lot of energy expectations from their cultural peers with munities, existing services can be culturally into providing person-centred and intercul- regard to the care they provide, and their own adapted to meet the needs of more diverse tural care to all their clients, but research ethical and practical considerations. Care groups. To remove language-related barriers, has shown that many health and social care needs to be taken to ensure they are not services should provide translated materials, professionals in Europe have a limited under- made responsible for all clients from minor- off er access to bilingual workers and, where standing of dementia and may know little of ity ethnic groups, given that individuals and services for people with dementia, especially groups may diff er widely. specifi c services for people with dementia By working in partnership from minority ethnic groups. In recent years, the number of migrant carers with minority ethnic and live-in carers has increased in several Euro- Professionals oft en feel frustrated because pean countries. These carers may be seen as communities, existing services of communication problems related to solutions to national care staff shortages, but can be culturally adapted to language diffi culties and to diff erent per- their arrival evokes debate. Some migrant car- meet the needs of more diverse spectives on dementia and care. They require ers may have had to leave their own dependent “ cultural competence: a combination of cul- relatives to earn a living far away from home. groups.” tural awareness; awareness of their own Their perceptions of dementia and dementia prejudices and tendency to stereotype; the care sometimes diff er to those of the people ability to transfer information that can be for whom they are caring and this may have understood; knowledge about when to seek external help; and the ability to adapt to new situations in a fl exible and creative manner. Training of staff will not The latter is key to handling ethical dilemmas. suffi ce to provide person- In the case of minority ethnic groups, such centred and intercultural care. The development of dilemmas and the ways to address them may, intercultural care in part, be infl uenced by confl icting cultural Further policy measures need to and support for values and perspectives, as well as commu- “be taken both by the authorities people with dementia nication problems. and by care organisations, to from minority ethnic groups A person may, for example, refuse intimate facilitate a high standard of care.” personal care from a health care professional of the opposite sex, or a relative may an impact on the care they provide, but also insist on care that seems to be in contradic- on their own self-esteem. A live-in carer lives tion with the interests of the person with in the home of the person receiving care. They dementia. Another example concerns behav- are potentially vulnerable to exploitation and

The report entitled “The development of intercultural care and support for people with dementia from minority ethnic groups” received funding under an operating grant from the European iour that appears to be out of character (e.g. abuse, particularly those who are expected to Union’s Health Programme (2014–2020) and from the Robert Bosch Stiftung a Hindu lady asking to be served beef for provide care more or less round the clock and dinner, a Sikh man not wanting to wear his who have no stable residency rights. Ethics report 2018

Dementia in Europe 11 ALZHEIMER EUROPE

Professional training and intercollegiate If policy makers and high-level health and social care learning/group supervision may facilitate cultural competence and thus improve qual- professionals are not convinced of the value and urgent ity of care. Involvement of informal carers in need for intercultural care and support, and do not have a clear the design and implementation of training understanding of how to provide it, large sections of our society programmes may improve their eff ectiveness. Evidence-based training programmes need “will continue to receive inappropriate and inadequate dementia to be developed. Implementation is a major care and support.” future challenge. However, training of staff will not suffi ce to provide person-centred French and German) and current repository Alzheimer Europe would like to thank these and intercultural care. Further policy meas- of initiatives will contribute towards achiev- two groups for their past and ongoing con- ures need to be taken both by the authorities ing this goal. However, if policy makers and tribution to this work. The database will and by care organisations, to facilitate a high high-level health and social care profession- be further elaborated throughout 2019 standard of care, and support the fi nancial als are not convinced of the value and urgent and 2020. We would therefore be pleased and legal rights of professional and informal need for intercultural care and support, and to hear from you about other initiatives carers, and people with dementia. do not have a clear understanding of how to and relevant materials in Europe. Please provide it, large sections of our society will send any information or feedback to: continue to receive inappropriate and inade- [email protected] As people from minority quate dementia care and support. These key ethnic groups often do players do not always have the time or motivation to read through lengthy reports. not get a timely, accurate and full diagnosis, their chances For this reason, and thanks to continued The report (in English, French and German) of accessing appropriate funding from the Robert Bosch Stiftung, can be downloaded freely at: “ Alzheimer Europe will be developing con- www.alzheimer-europe.org/Publications/ treatment, support and care are cise summaries targeted at policy makers Alzheimer-Europe-Reports greatly reduced.” and at high-level health and social care pro- The current repository of intercultural fessionals. Alzheimer Europe will also be care initiatives can be found at: www. What next? further developing its searchable web data- alzheimer-europe.org/Ethics/Database- of-initiatives-for-intercultural-care-and- base of good initiatives of intercultural care support People from all ethnic groups should have and support. The work will be carried out by access to care and support which corre- the expert working group, whose members Further details of the experts in the working group can be found at: www. sponds to their cultural beliefs, traditions are listed above along with valuable input alzheimer-europe.org/Ethics/Ethical- and ways of life. We hope that the compre- from the European Working Group of People issues-in-practice hensive report (which is available in English, with Dementia.

Acknowledgements

The report received funding under an operating grant from the European Union’s Health Programme (2014–2020) and from the Robert Bosch Stift ung

12 Dementia in Europe POLICY WATCH

For prospective Commissioners, it is impor- Who’s who in the EU? tant to note that these are subject to change; candidates may be withdrawn and are subject to a confirmatory vote (as part of the College Following the European Parliament election in May 2019, of Commissioners as a whole) by the Euro- the European Union has been underway with the process of pean Parliament. deciding who the key leaders and decision-makers for the next Whilst the Council of the European Union, in term will be. In this article, Alzheimer Europe takes a look at its various configurations, is also central to some of the key people. the decision-making process for policy and legislative matters at a European level, its members are determined by the composition In this article, Alzheimer Europe provides an which have the greatest relevance for demen- of governments at a national level, therefore overview of some of the key actors within tia policy. The rationale and the importance are not included in this article. both within the European Parliament and of each position in relation to dementia has the European Commission, who will ulti- been included in the profiles below. The article is divided into two sections. The first mately shape the policy and legislative examines the key Commissioners-designate agenda over the next five years. Their actions, At the time of writing, the following members (as they were at the time of writing) grouped choices and decisions across a range of pol- were either in post (in the case of the Presi- together by their seniority i.e. President, Exec- icy areas will invariably impact upon the dent-elect of the Commission and the Chair utive Vice-Presidents, Vice-Presidents and field of dementia. of the European Parliament committees) or Commissioners, whilst the second examines were announced as candidates from their the key committee Chairs. Alzheimer Europe has focused on specific respective countries and had been selected policy remits within the Parliament and the by Ms von der Leyen for the specific Commis- Commission, only including those purviews sioner/Vice-President post.

Key Commissioners-designate

Ursula von der Leyen Relevance: As the head of the European Commission and the chair of the College of Position: President-elect of the European Commissioners, the role of the President of Commission the Commission is one of the most publicly Country: Germany visible and is also one of the most powerful. European Party: European People’s Party Ultimately, the President controls the policy agenda of the Commission during their Background: Ms von der Leyen is a physi- term, overseeing the policy and legislative cian by background and served within the initiatives which it proposes. Her first pub- German Federal Government in a number lication “A Union that strives for more: My of capacities since 2005. Her roles during agenda for Europe” serves as the political this time have included Minister of Family guidelines for the future next Commission Affairs, Senior Citizens, Women and Youth, and contains six headlines: Minister of Labour and Social Affairs, and, most recently, Minister of Defence. yy A European Green Deal yy An economy that works for people Following the nomination of Ms von der yy A Europe fit for the digital age Leyen by the European Council, the Euro- yy Protecting our European way of life pean Parliament voted to approve her yy A stronger Europe in the world nomination as the next President of the yy A new push for European democracy. European Commission on 16 July 2019.

Dementia in Europe 13 POLICY WATCH

Margrethe Vestager Position: Executive Vice-President – Europe Fit for Digital Age Country: Denmark European Party: Renew Europe

Background: Ms Vestager was first elected Relevance: The Europe Fit for a Digital Age to the Danish Folketing in 2001, serving in portfolio will have particular relevance for a number of Ministerial positions. She has work related to how big data can be used served as Minister for Economic Affairs and to develop new technologies and business the Interior, Minister for Education and models, as well as human and ethical impli- Minister for Ecclesiastical Affairs. Since 2014, cations for artificial intelligence; the latter she has served as European Commissioner to be actioned within the first 100 days of for Competition, a role she will retain in her the new Commission. The portfolio also new position. identifies the need to maximise investment in research and innovation in achieving the policy objectives.

Valdis Dombrovskis Position: Executive Vice-President – An Economy that Works for People Country: Latvia European Party: European People’s Party

Background: Mr Dombrovskis was has Relevance: The Economy that Works for served as Minister of Finance, as well as All portfolio will have responsibility for the Prime Minister of Latvia, in addition to European Social Rights, with the Vice-Pres- having served a term as a Member of the ident tasked with coordinating the action European Parliament. He is currently the plan to implement the Pillar. Additionally, European Commission’s Vice-President for the role will have a significant focus on the the Euro and Social Dialogue (with respon- EU’s relationship with social partners and sibility for Financial Stability, Financial will look to strengthen the role of social Services and Capital Markets Union). dialogue. As part of the remit, Sustainable Development Goals will be worked into the European Semester process.

Vĕra Jourová Position: Vice-President for Values and Transparency Country: Czech Republic European Party: Renew Europe

Background: Ms Jourová has served as a Relevance: The Values and Transparency member of the Czech Chamber of Deputies, remit has a specific focus on the rule of law as well as Minister for Regional Develop- and right, with a specific focus on the EU’s ment. Her current role within the European accession to the European Convention on Commission is as the Commissioner for Human Rights, as well as the monitoring Justice, Consumers and Gender Equality. of compliance with the Charter of Fun- damental Rights. There is also a focus on improving European Citizens’ Initiatives and improving transparency of the legislative process.

14 Dementia in Europe POLICY WATCH

Dubravka Šuica Position: Vice-President for Democracy and Demography Country: Croatia European Party: European People’s Party

Background: Ms Šuica has previously including care and pensions, and whether served as Mayor of Dubrovnik, as a the social protection systems can deal with member of the Croatian Parliament and the changing demographics. currently, she is a Member of the European Parliament. The role also is due to produce a report on the impact of demographic change within Relevance: The Democracy and Demogra- the first six months of the Commission – phy portfolio has been specifically tasked there will also be a mapping exercise to with the presentation of a Green Paper identify countries most in need of reforms on ageing looking at long term impacts, and investment.

Helena Dalli Position: Commissioner for Equality Country: Malta European Party: Party of European Socialists

Background: Ms Dalli served as a member the introduction of new anti-discrimina- of the Maltese Parliament, having held the tion legislation. The Commissioner will lead positions of Minister for Social Dialogue, on the EU’s implementation of the United Consumer Affairs and Civil Liberties and Nations Convention on the Rights of Per- Minister for European Affairs and Equality. sons with Disability (UNCRPD) to which the European Union and all its Member States Relevance: The Equality portfolio will are party. The Commissioner will also have have a focus on combatting all forms of responsibility for ensuring the implemen- discrimination and will be responsible for tation of the Work–Life Balance Directive.

Mariya Gabriel Position: Commissioner for Innovation and Youth Country: Bulgaria European Party: European People’s Party

Background: Ms Gabriel’s background is as States, civil society and other EU insti- a teaching and research assistant. She has tutions. There is also a focus on working served as an MEP since 2009. Since 2017, Ms with Member States towards a European Gabriel has served as the European Com- Research Area, as well as ensuring that missioner for Digital Economy and Society. ensuring that research, policy and economic priorities go hand in hand. The Relevance: This Innovation and Youth Commissioner is also expected to maxim- portfolio will have responsibility for the ise the potential of exchange programmes oversight of the Horizon Europe research to foster international cooperation in edu- programme, coordinating with Member cation, research and innovation.

Dementia in Europe 15 POLICY WATCH

Sylvie Goulard Position: Commissioner for the Internal Market Country: France European Party: Renew Europe

Background: Ms Goulard previously served such as high-performance computing, as an MEP until 2017, before briefly being data-sharing and data-usage tools. As part appointed as Minister of the Armed Ser- of this, the Commissioner will lead work vices. She currently serves as a Deputy on the approach to artificial intelligence Governor of the Bank of France. and on a new Digital Services Act. There will also be a focus on day-to-day func- Relevance: The Internal Market portfolio tioning of the single market, specifically, will include a focus on the digital transi- on the implementation and enforcement tion, ensuring that values are respected as of rules at the European, national, regional new technologies develop, whilst ensur- and local levels. ing investment in frontier of technologies,

Johannes Hahn Position: Commissioner for Budget and Administration Country: Austria European Party: European People’s Party

Background: Mr Hahn previously served Relevance: A key focus of this portfolio as Minister for Science and research in will be concluding the negotiations on the the Austrian Federal Government, before 2021–2027 Multiannual Financial Framework moving to the European Commission (MFF), ensuring it is streamlined, simpler to to undertake the role of Commissioner understand and more flexible. The Com- for Regional Policy. He is currently the missioner is also expected to work with European Commissioner for European other Commissioners to ensure coherence Neighbourhood Policy and Enlargement between individual sectoral programmes Negotiations. in the MFF.

Stella Kyriakides Position: Commissioner for Health Country: Cyprus European Party: European People’s Party

Background: Ms Kyriakides worked in the has the supply of affordable medicines to Ministry of Health between 1976 and 2006, meet its needs, as well as focusing on the before being elected to the Cypriot House of implementation of the new regulatory representatives, where she is an incumbent framework on medical devices. There is member. She has also served as President of also a focus on utilising e-health to pro- the Parliamentary Assembly of the Council vide high-quality healthcare and reduce of Europe between 2017 and 2018. inequalities. A key project will be the creation of a “European Health Data Space” to Relevance: The Health portfolio sets the promote health-data exchange and support direction of future health policy within research on new preventive strategies, as the EU. Specifically, the Commissioner well as on treatments, medicines, medical has been tasked with ensuring that Europe devices and outcomes.

16 Dementia in Europe POLICY WATCH

Key European Committee Chairs

Pascal Canfin MEP Position: Chair of the Environment, Public Health and Food Safety committee (ENVI) Country: France European Party: Renew Europe

Background: Mr Canfin previously served the public health aspect of its work cov- as an MEP, before taking up a role in the ers all health matters in which the EU is French Government as Minister for Devel- involved. This committee will have a key opment. Most recently, Mr Canfin was head role in overseeing proposals related to the of the WWF in France before being elected future work of Health Programme (or asso- to the European Parliament in May 2019. ciated work as part of the ESF+ programme), as well as in advocating for a better funding Relevance: The ENVI committee has a broad settlement for health as part of the Mul- scope of policies within its remit. However, ti-annual Financial Framework (MFF).

Adina-Ioana Vălean MEP Position: Chair of the Industry, Research and Energy committee (ITRE) Country: Romania European Party: European People’s Party

Background: Ms Vălean previously served Commission, Council and Parliament have in Romania’s Chamber of Deputies before already reach a partial agreement over the being elected to the European Parliament future of the research programme, details in 2007, following the country’s accession around the financing are yet to be agreed. into the European Union. The committee will therefore have a key role in ensuring that dementia research, as well Relevance: The ITRE committee will be as health research more broadly, are priori- important in the finalisation of the Hori- tised within the Horizon Europe budget. zon Europe programme. Although the

Lucia Ďuriš Nicholsonová MEP Position: Chair of the Employment and Social Affairs committee (EMPL) Country: Slovakia European Party: European Conservatives and Reformists

Background: Ms Ďuriš Nicholsonová is a Relevance: The EMPL committee will be journalist by background, as well as having central to all matters related to social pol- served in the Slovakian Chamber of Deputies icy at a European level, including those since 2010, including as State Secretary at the related to the European Pillar of Social Ministry of Labor, Social Affairs and Family. Rights, discrimination and employment. She was elected to the European Parliament The committee will also have a key role in May 2019. in relation to the ESF and future ESF+ programme, including examining the level of funding allocated through the MFF.

Dementia in Europe 17 POLICY WATCH

Petra de Sutter MEP Position: Chair of the Internal Market and Consumer Protection committee (IMCO) Country: Belgium European Party: Greens/EFA

Background: Ms de Sutter is a physician Relevance: Many issues pertaining to by background, as well as having served dementia research are intertwined with in the Belgian Senate from 2014, prior to matters related to the single market and her election to the European Parliament in the rules which govern it. Issues such as 2019. Ms de Sutter is also a member of the cross-border collaboration, data-sharing European Alzheimer’s Alliance. (including GDPR) and system interoperabil- ity, will feature in the work of IMCO. Similar issues also exist for policy matters such as the ability to use and transfer e-health records across the EU.

Alzheimer Europe’s next steps

The European Parliament has to give its con- will question and scrutinise the candidates prioritising dementia within their portfolio. sent to the entire College of Commissioners, will take place at the end of September and In addition, Alzheimer Europe will invite to including the High Representative of the beginning of October. the Commissioners and committee Chairs Union for Foreign Affairs and Security Policy/ to be interviewed for Dementia in Europe to Vice-President of the European Commission. Once confirmed in their positions, Alzheimer share how they will ensure that dementia is Hearings by the European Parliament Com- Europe will write to each Commissioner represented with their specific remit. mittees, in which the European Parliament asking them to commit their support for Our mission is clear. We are pioneers in neuroscience.

We’re proud to partner with Alzheimer Europe

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18 Dementia in Europe POLICY WATCH

work-stream, updated the group on its Governmental Expert Group on development of work to provide clear, evidence-based recommendations on how to effect change and improve care coordination Dementia meets to discuss policy and crisis response services for people with dementia. The key findings of the project developments across Europe had so far been the need to tailor support to needs of the individual, develop dementia Following a successful inaugural meeting of the Governmental care pathways, ensure support for carers in Expert Group on Dementia in December 2018, Alzheimer order to reduce carers stress and the need for ongoing monitoring of the support pro- Europe was delighted to work with colleagues in the Dutch, vided to make sure it is appropriate. Italian and Scottish Governments to bring the group together During the course of the open discussion, for the second time. there was debate around the best approach to care coordination, with specific focus on the level of specialism required for ser- The European Group of Governmental In this section, we provide an overview of vice delivery. There was an evident divide Experts on Dementia held its second meet- some of the discussions and themes which between countries which use case manage- ing on 17 and 18 June 2019 in Amsterdam, emerged throughout the course of the discus- ment specialism by default for all persons Netherlands, with 20 European countries sions on the day. We have also included two with dementia, compared to those countries represented. In addition, representatives examples, from the Czech Republic and Swe- which only use specialists for more complex from the 2nd European Joint Action on den, of work which was discussed on the day. cases. Additionally, the use of data in health Dementia: Act on Dementia, the World systems was seen as a key area of focus for Health Organization (WHO) and Alzheimer Timely diagnosis and post-diagnostic the future of the group, learning from coun- Europe were also present. support tries which had adopted this approach.

The group met for the first time in Decem- Work package lead Pierre Kolak-Salmon pre- Residential care ber 2018 as a response to the decision of the sented on diagnosis and post-diagnostic European Commission to disband its con- support, noting that the conceptual view Oyvind Kirkevold, work package lead for resi- dition-specific expert groups in favour of a of dementia is beginning to shift, requiring dential care, presented on the progress of his broader health prevention of non-communi- a change in approach to the diagnosis and the Joint Action (in particular around training cable diseases group. The health ministries treatment of dementia. The work package for staff in relation to behavioural and psy- of Italy, The Netherlands and Scotland (UK), covered a number of areas including piloting chological symptoms of dementia) explaining along with Alzheimer Europe, agreed that new training programmes for GPs around their that the process of pulling together the con- such a platform was vital for the exchange of understanding of dementia, attempting to clusions was underway. Drawing out the knowledge and expertise between countries. establish a graduated approach to diagnosis (as overarching themes from the work, it was well as improving GPs knowledge of different noted that teaching, training and reflection During the course of the meeting, the four diagnosis strategies), as well as reviewing the for staff improved quality and care, however, work packages of the 2nd Joint Action on diagnostic value of existing diagnostic tools. required dedicated effort and resources. Fur- Dementia were discussed, focusing dis- thermore, the need for training programmes cussions on diagnosis and post-diagnostic In the open discussion, countries shared their to be flexible and adaptable to different con- support; crisis and care coordination; residen- specific challenges with an emerging consen- texts was identified as crucial to their success. tial care; and, dementia friendly communities. sus that no “one size fits all” existed which addressed all issues. Behaviour change in pro- During the open discussion there was broad For each topic, work package leaders pre- fessionals was agreed as a matter which was agreement about the importance of imple- sented to members of the group, updating as important as clinical knowledge. The posi- mentation, with many countries noting that them on the latest progress and findings from tion of GPs within healthcare systems, their guidelines and policies were in place but their project area, with representatives from role in the diagnostic process and the effec- that the challenge lay in implementation countries then sharing related work and good tive use of their finite time, were also explored. and oversight. The importance of upskill- practice which was taking place within their ing staff was seen as important, however, countries. Following this, members used the Crisis and care coordination the challenges of behaviour change within open forum discussions to engage in discus- a care environment, especially among more sions and questions about challenges and Jacqueline Hoogendam, work package experienced members of staff, was noted as successes on specific issues. lead for the crisis and care coordination a challenge.

Dementia in Europe 19 POLICY WATCH

Dementia friendly communities noting the wider policy context of the Future meetings of the group document, including the Sustainable Devel- The open discussion between members focused opment Goals (SDGs) and the Mental Health The group agreed to continue with a format on matters relating to how to demonstrate Action Plan. of two meetings per year, taking place in the benefit of dementia friendly communi- central locations in Europe. It was further ties and the difference these made to people’s The WHO has developed tools and resources agreed that Alzheimer Europe would con- day-to-day lives. The group noted the differ- to support countries in implementing the tinue to provide a secretariat role for the ent approaches taken between countries, with seven action areas of the plan: increasing organisation of the group. some adopting a standards-based approach, prioritisation and awareness of dementia; whilst others linked the initiatives into service reducing the risk of dementia; diagnosis, The group proposed a number of areas which delivery. Additionally, members acknowledged treatment and care; support for dementia the group hoped to address in future meet- that there is a need within this area of work to carers; strengthening information systems ings including: balance the rights of the individual and ensure for dementia; and research and innovation. they are included within their communities, yy Palliative care/end of life care. without an excessive focus being placed on the Focus was given the progress in establishing yy Data/metrics/measurement, understand- individual’s diagnosis of dementia. of a Global Dementia Observatory, a data ing change, benefit value and improvement. and knowledge exchange platform which yy A final session to conclude and reflect on Another topic of discussion was around how will offer access to key dementia data from the second Joint Action on Dementia. best to align dementia inclusive initiatives, Member States. Additionally, the presenta- yy Registry and data collection – how this including dementia friendly communities and tion highlighted the recent publication works and how it is set up. Could be part of dementia friends, with other work-streams of the iSupport resource for carers, which metrics, surveillance, brain health registries. which may have similar objectives and target aimed to provide both an online and physi- demographics, e.g. age-friendly communities. cal resource for informal caregivers of people The group will meet, for a third time, in with dementia. Additionally, it was high- December 2019 in Brussels, Belgium. These WHO Global Action Plan on Dementia lighted to the group that WHO’s had recently meetings will coincide with the Alzheimer’s published guidelines on risk reduction and Association Academy, Company Round Table Stéfanie Freel, of the WHO introduced the cognitive decline and dementia. and Lunch Debate meetings which will take Global Action Plan on Dementia (2017-2025), place on 10 and 11 December 2019.

Governmental expert group meeting, Amsterdam, Netherlands

20 Dementia in Europe POLICY WATCH

Hana Marie Broulíková, Coordinator, National Action Plan for Alzheimer’s and related diseases, Ministry of Health talks about the development of the Czech National Action Plan for Alzheimer’s Disease and Related Illnesses 2020–2030

Aft er encountering serious issues in imple- During the whole revision process, inten- implementation of specifi c activities and mentation of its previous version, the Czech sive effort is being made to enhance dissemination of the Plan to the target Republic is currently revising the National stakeholder engagement as low buy-in groups will likely be easier. Action Plan for Alzheimer’s Disease and hindered success of the 2016–2019 Plan. Related Illnesses (Plan). Unlike in the case The Plan will consist of three parts: an intro- of its predecessor, the works on the Plan This has been achieved by appointing duction describing our vision and guiding follow guidelines, recommendations and a dementia coordinator responsible for principles, a situation analysis, and a pro- tools recently issued by the World Health the Plan development and by establish- posal of recommendations. This last part Organization (WHO). The process proceeds ing a broad stakeholder platform that will contain specifi c activities to be imple- step by step as recommended by Towards regularly meets to discuss the progress mented in order to achieve the goals of the a Dementia Plan: A WHO Guide and by the with respect to formulating vision, goals, Plan. Remarkably, the Plan will exploit syn- Global Dementia Observatory initiative. In objectives and activities of the Plan. Two ergies with the ongoing reform of mental line with the recommendations, the Czech of the platform meetings were organized health care represented by the National Republic goes through the following stages as workshops attended by an interna- Action Plan for Mental Health until 2030. to achieve a feasible Plan: situation anal- tional expert from WHO Dr Anne Margriet An example of such synergy is the provi- ysis, setting priorities, creating strategic Pot, who brought her experience and sion of community services, which are a framework, assessing resource needs, and fresh perspective to the process of devel- priority for both strategy documents. The obtaining political and stakeholder approval. opment. Importantly, supervisors from Plan was introduced to the wider public on The situation analysis was undertaken by key Czech organizations led narrowly the occasion of the World Alzheimer’s Day collecting Global Dementia Observatory focused working groups in their areas on September 21, 2019. indicators, which enables systemic iden- of expertise. Consequently, stakeholders tifi cation of existing gaps as well as an are expected to have strong incentives to international comparison. apply for funding that will be allocated to

Frida Nobel, Medical Offi cer, National Board of Health and Welfare, outlines Sweden’s new model for standardised health and social care pathway for persons with dementia

In Sweden, current costs for society are standardised health and social care path- y How can the identified required approximated to be EUR 6 billion per year, way, including support and follow up. One interventions be performed – with whereof the municipalities cover approx- aim of the model is to standardise care collaborating teams both on steering imately 85 %. Sweden has had national pathways for a person with dementia levels and on specialist professional guidelines on dementia care since 2010, throughout the progression of the dis- levels, for example ”dementia teams” with the recommendations based on a ease from diagnosis until the end of life. including nurses, occupational thera- review of current knowledge in medical Another aim is to include successful exam- pists, social care coordinators and when science and health economics. ples how to cooperate between diff erent needed for example physicians, dentists, caregivers, for example between regions physiotherapists etc. In May 2018, Sweden decided on, for the and municipalities, between several levels y Which “tools” to make individual care fi rst time, a national strategy for demen- of care and between diff erent categories of plans can be used – existing forms to tia. This strategy includes areas like health and social care professionals. simplify planning when a person needs cooperation between caregivers, build- care from both the healthcare and the ing of new knowledge, follow up of care The model is based on person-centered social care. outcomes, improvement for family car- care for persons with dementia, however, egivers, development of digital tools, and the interventions in the care pathway may A key aims of this model is to create a foun- how the society in general can become diff er for individuals since the individual dation for further development, both at the more dementia-friendly. The fi rst step in needs are diff erent. local (municipal) and regional level. Addi- the dementia strategy was to develop a tionally, the models aims to support the model for standardised health and social In brief, the model describes the following: knowledge development at national level care pathway for people with dementia. to make access to care more equal across y What should be off ered - a standardized the country. In June 2019, the National Board of Health health and social care pathway, includ- and Welfare published a model for a ing support, follow up, treatment, etc. POLICY WATCH

From single participants Why share data? As illustrated above, modern-day clinical studies have multiple endpoints, generat- to Big Data: data sharing ing vast quantities of complex data. However this comes at a correspondingly high cost: a in dementia research recent study estimated that a single drug efficacy trial costs an average of USD 19 million, Angela Bradshaw, Project Officer at Alzheimer although this figure increases substantially Europe, takes a look at the benefits of and for longer or larger trials involving participants with complex diseases. Recognising barriers to sharing data from clinical research the scale of investment in clinical trials, the studies. last two decades have seen increasing calls for these valuable data sets to be shared.

The benefits of sharing clinical study data are clear: research can be validated, the returns We could enable faster progress on all fronts of the Alzheimer’s on investment are increased and, importantly, fight by facilitating more data-sharing.” new hypotheses can be generated by linking datasets from different trials, accelerating Bill Gates scientific innovation. Moreover, data sharing today can lead to better treatments for the “In his landmark 1906 lecture, Alois Alzheimer for AD by analysing genetic data from 314,278 patients of tomorrow. For example, second- described the case of a 51-year-old woman individuals in the UK Biobank cohort. ary analyses of trial data have highlighted severely affected by the symptoms of a con- the inefficacy of drugs like Tamiflu, while dition we now know as Alzheimer’s disease However, size isn’t everything: when it comes post-hoc analyses have shown the benefit (AD). Alois Alzheimer’s first study on AD had to clinical studies, the type of data you collect of adding donepezil to memantine therapy a single participant: Auguste Deter. Nowadays, is just as important as the number of partici- for AD patients. Crucially, data sharing hon- clinical studies commonly include hundreds pants. A 2018 report by the Tufts Centre for the ours the generosity of trial participants, who and sometimes thousands of participants, Study of Drug Development showed an 86% contribute their time and undergo risky pro- depending on study phase and design. For increase in the average number of clinical end- cedures for the sake of medical progress. example, the recent Phase II trial of BAN2401, points in trials registered between 2001–2005 an anti-amyloid immunotherapy, enrolled 856 and 2011–2015. This means that a single trial Most participants didn’t participants with mild cognitive impairment. participant may undergo MRI scans, cogni- Cohort studies can be larger still: the European tive assessments and biomarker tests; they see data sharing as a Prevention of Alzheimer’s Dementia (EPAD) may have their DNA sequenced, their blood reason NOT to participate in a longitudinal cohort study has already enrolled pressure measured or their physical activ- study, with some saying that it over 1,800 participants, aiming to characterise ity mapped. By linking the data from these the earliest stages of AD. Both are dwarfed by tests, clinical researchers aim to obtain better “would actually encourage them genome-wide association studies (GWAS): a insights into the cause, development and pre- to sign up.” recent GWAS study identified new risk factors vention of multi-factorial diseases such as AD.

22 Dementia in Europe POLICY WATCH

Encouragingly, at the time public interest. Importantly, researchers are and dementia cohort identified scientific obliged to return their findings to UK Biobank advancement, research efficacy and health of writing, 61.5% of due once their research is complete, so other sci- improvements as important outcomes from trials had reported results to entists can benefit. For example, Regeneron data sharing: one participant stated “…I think the EU clinical trials database and GlaxoSmithKline recently completed there does have to be an open exchange of exome sequencing of 50,000 UK Biobank information in order for some of these really “within the [legally required] participants: this data has now been incor- significant things to happen for peoples’ ben- 1-year timeframe, up from 50% porated back into the UK Biobank for use by efit”. Importantly, most participants didn’t in 2018.” the global health research community. 1,463 see data sharing as a reason NOT to partic- applications for data access have been sub- ipate in a study, with some saying that it mitted since 2012: of these, 71 relate directly would actually encourage them to sign up. Data sharing in practice: the UK Biobank to AD. To date, 802 papers using UK Biobank data have been published in peer-reviewed Next steps The last decade has seen the creation of journals, identifying new genetic risk factors several platforms for clinical data sharing. for disease and paving the way for improved, Researchers, trial participants, clinicians and The Global Alzheimer’s Association Interac- targeted therapies. policy-makers broadly agree that responsi- tive Network platform (GAAIN) houses data ble data sharing can accelerate scientific descriptors (or “metadata”) from almost In support of data sharing: the participant progress, leading to medical improvements 500,000 participants in clinical dementia perspective that directly benefit patients. Despite this studies, provided by 51 GAAIN data partners. consensus view, sharing individual partic- This “closed” model of data sharing means Given the well-publicised benefits, many clin- ipant data from clinical studies is far from that the data partners control access to the ical study participants are understandably common practice. In a 2017 Springer Nature raw data, whilst enabling researchers to keen for their data to be shared. At a 2017 survey, 39% of the 2,683 respondents working explore metadata and create new cohorts data sharing summit organised by the New in the medical sciences did not share data via across multiple data sources. England Journal of Medicine, trial participants repositories or other data sharing platforms. re-iterated their belief in sharing data and So, what can be done to encourage data shar- Conversely, the UK Biobank platform exem- experiences in order to help themselves and ing from clinical studies? plifies an open model of data sharing. fellow patients, encouraging researchers to Established in 2006 by Sir Rory Collins, UK look beyond concerns around loss of data The first step is to understand what data is Biobank collects and anonymises longitu- authorship and patient confidentiality. High- being shared, and what isn’t. Alarmingly, a dinal health data and biological samples lighting the importance of considering the 2018 study revealed that only 50% of clini- from 500,000 participants aged between patient voice in debates around data shar- cal trials registered in the EU had reported 40–69 years. The electronic health records of ing, Sharon Terry (a patient advocate) stated results summaries in the EU clinical trials participants are directly linked to the UK Bio- “Trial participants are not patients in the tra- database (EUCTR) within a year of comple- bank database, providing a record of disease ditional sense of the word. It really should be tion, as required by law. In response, several events, drug prescriptions and deaths. This looked at as a partnership.” EU and US groups have set up Trials Track- database also contains the DNA sequencing ers to independently monitor compliance data from all 500,000 participants, facilitat- A follow-up survey confirmed the willingness with clinical trials reporting rules. To assess ing large-scale genetic studies. Of particular of many trial participants to share data: fewer data sharing from Industry-sponsored drug relevance to AD, UK Biobank collects imaging than 8% of the 771 respondents felt that the trials, researchers in the US have recently data and is aiming to obtain brain MRI scans potential negative consequences of data developed a scorecard to measure clinical from 100,000 participants by 2020. sharing outweighed the benefits. The desire trial data sharing policies and practices in to help others was a dominant theme, with pharmaceutical companies. Encouragingly, From the outset, UK Biobank has made all its several respondents urging greater coopera- at the time of writing 61.5% of due trials had anonymised data openly available to bona tion and less competition among researchers. reported results to the EUCTR within the 1– fide researchers, subject to verification that An earlier focus group study of participants year timeframe, up from 50% in 2018. It is the research is health-related and in the in the ACT (Adult Changes in Thought) ageing hoped that the good pharma scorecard will show a similar upward trend when it comes Medical progress thrives when the evidence base is complete to data sharing. and openly accessible, allowing researchers to build on, The next step is to understand why data challenge and refine the findings of their peers. As our technical isn’t being shared. Frequently-cited reasons include participant confidentiality issues and data processing capabilities increase, so will the rewards for the technical difficulties of sharing data, as “responsibly sharing that data, paving the way for new diagnostics, well as the high financial cost of data shar- treatments and care.” ing: when studies end, so do the associated

Dementia in Europe 23 POLICY WATCH

funding streams, which means that data Frequently-cited reasons why data isn’t being shared include sharing can be financially unsustainable in the long term. Worryingly, many clinical tri- participant confidentiality issues and the technical difficulties allists feel that academic systems do not of sharing data, as well as the high financial cost of sharing data” adequately incentivise data sharing. A huge amount of effort is required to set up and run ensuring clinical triallists act as data stew- EMIF project, which worked to collate and har- clinical trials: triallists therefore expect that “ards and are fully credited when their data monise data from AD cohort studies. they will be able to publish several papers are re-used. When it comes to patient pri- using these valuable datasets, building their vacy issues, Artificial Intelligence may provide Medical progress thrives when the evidence academic careers and reputations. novel solutions: computer scientists from base is complete and openly accessible, the AETIONOMY project are aiming to cre- allowing researchers to build on, challenge Using this knowledge, we need to develop ate a virtual dementia cohort that could and refine the findings of their peers. As improved environments, methods and simulate real patients. Finally, a number of our technical data processing capabilities policies for data sharing. To overcome motiva- EU-funded initiatives to support data sharing increase, so will the rewards for responsibly tional barriers, methods to better incentivise from a technical perspective are well under- sharing that data, paving the way for new data sharing have been proposed, such as way: Alzheimer Europe was a partner on the diagnostics, treatments and care.

Acknowledgement

Thanks to support from Gates Ventures, Alzheimer Europe is currently conducting a project on data sharing in dementia research. 201 9

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o a future where c

s d e e s t o c i p r p u e p d e e disease is a v g i t a a m r i t s e u h l l i T thing of the past.

We are Janssen, The Pharmaceutical Companies of Johnson & Johnson. Bold thinkers. Big dreamers. Fearless advocates on behalf of patients. So that one day, the world’s most daunting diseases will be found only in the pages of history books.

EM-14946

24 Dementia in Europe POLICY WATCH

Spominčica hosts neurological diseases conference in Slovenia On 25 May 2019, Spominčica held a conference entitled “In the rhythm of the human brain” in Ljubljana. It is the first time that five different neurological diseases were presented and discussed together: dementia, Parkinson’s disease, multiple sclerosis, Huntington’s disease and spinal muscle atrophy.

We are here today not only living with the conditions, family members, experts and policy makers. Guests at the con- to remember, but to talk ference included Mr Aleš Šaberder, Minister throughout the day and to share of Health, Dr Tomaž Pilberšek, Secretary of our experiences and also to see State for Health, Mrs Breda Božnik, Secretary how to deal with this problem of State for Ministry of Labour, Family and Prime Minister Marjan Šarec addresses attendees “ Social Affairs and Dr Aiga Rurane, represent- further. The law on long-term ative of World Health Organization (WHO) burden, especially for relatives”. He shared a care has a lot to be resolved.” in Slovenia. personal story with the conference, explaining that his wife’s grandmother, who was Prime Minister Marjan Šarec Prime Minister address to the conference affected by dementia later in life, had recently passed away. He told the conference that she The conference, sponsored by ROCHE, was Mr Šarec told the conference: “When look- had taken care of the farm all her life and held under the honourable patronage of Mr ing deeper, we see that not everyone can that she was extremely bright and energetic. Marjan Šarec, the Slovenian Prime Minis- enjoy the beauty of the day. A certain per- In the end, she didn’t know anyone or know ter, who also addressed the 300 attendees centage of our population is affected by one where she was, which greatly pained those who took part in the conference, compris- or another disease. And the diseases we are who knew her. ing members of the general public, people addressing today are on the rise, a huge The Prime Minister also told attendees: “We are here today not only to remember this, but to talk about it throughout the day and to share our experiences and also to see how to deal with this problem further. The law on long-term care has a lot to be resolved”. He also highlighted that Mr Šabeder had made clear that the Long-term Care Act, which had been awaited for almost 15 years, should be developed. The Prime Minister thanked the organisers for the invitation to be honorary patron of the event, noting that “honour will shift to action, especially in the field of diseases and diseases that are on the rise today.”

Dementia focused session

Sessions opened with a medical expert presenting the disease, followed by a panel discussion with patients, caregivers, experts The dementia panel discussion (from left to right): Maja Južnič Sotlar, moderator; Janja Romih, Ministry of Labour, Family and policy makers. At the end of the sessions, and Social Affairs; Mihela Španja, wife of the first Slovenian EWGPD member Bojan Španja; Dr Milica Gregorič Kramberger, the audience were invited to pose questions University Medical Center Ljubljana; Štefanija L. Zlobec, Spominčica; Prof Peter Pregelj, University Psychiatric Clinic Lju- bljana; Tomaž Gržinič, Member of EWGPWD.

Dementia in Europe 25 POLICY WATCH

concerning diagnosis, treatment and living community based services and additional services, as well as stressing the importance with the disease. Tomaž Gržinič, member of institutional care facilities for persons with of aff ordable and dementia-friendly facilities the European Working Group of People with dementia. It was noted that the Ministry was and services that promote social inclusion, Dementia (EWGPWD) and Mihela Španja, wife aware of the problems and was preparing dignity and quality of life of each individual. of the fi rst Slovenian EWGPWD member Bojan an action plan for the next fi nancial review. It is the desire of all involved to repeat the Španja, participated in the dementia panel Experts and representative of the Ministry conference next year. together with Dr Milica Gregorič Kramberger thanked Spominčica for the important work (leader of Models of Patient Engagement for in the community and also for moving forward Alzheimer’s Disease – MOPEAD project in dementia in the political agenda in Slovenia. Slovenia), Prof. Peter Pregelj, University Psy- chiatric Clinic Ljubljana, Štefanija Zlobec, Conclusions President of Spominčica and Janja Romih, representative of the Ministry of Labour, Family A key achievement of the conference was the and Social Aff airs. engagement of patients and their caregivers who co-created and participated in the They concluded that the burden on fam- panel discussions, helping to identify the ily carers should be reduced with adequate current gaps in social care and healthcare Spominčica - Alzheimer Slovenija +386 1 256 51 11 Honour will shift to action, especially in the fi eld of diseases [email protected] www.spomincica.si and diseases that are on the rise today.” @spomincicaSi @spomincica.zdruzenje “ Prime Minister Marjan Šarec

Attendees included (from left to right): Štefanija L. Zlobec, President of Spominčica; Marjan Šarec, Prime Minister; David Krivec, Secretary General of Spominčica; Aleš Šabeder, Minis- ter of Health; Breda Božnik, State Secretary of Ministry of Labour, Family and Social Aff airs; Dr Aiga Rurane, representative of WHO in Slovenia; Dr. Tomaž Pilberšek, Secretary of State, Ministry of Health.

26 Dementia in Europe DEMENTIA IN SOCIETY

Given the local nature of Policy campaigns – do they work? the elections, we knew that What impact does policy campaigning really have at national securing local media coverage level? Alzheimer Europe spoke to two of its national member was going to be essential to the associations about recent policy campaigns each had run, “success of the campaign.” asking what the outcomes were and what real impact they to our services, branches, directors, mem- had been able to achieve. bers of the Irish Dementia Working Group (IDWG) and Dementia Carers Campaign Net- work (DCCN), as well as other volunteers. We Promoting Dementia-In- Advocacy Manager Avril Easton, consulted also contacted our 10,000 e-Campaigners and with key policy makers in devising the local informed them about the local and European clusive Communities at election campaign. They identified specific campaigns and how they could get involved. the heart of The Alzheimer deliverable actions for councillors to take: Given the local nature of the elections, we Society of Ireland’s Local 1. Sign up and become a Dementia: Under- knew that securing local media coverage was Election Campaign 2019 stand Together Community Champion going to be essential to the success of the (“Dementia: Understand Together” is a campaign. We issued 27 unique press releases public support, awareness and informa- (1 national and 26 county-specific ones) and tion campaign in Ireland); identified local spokespeople that could liaise 2. Engage with local dementia service-pro- with local media. Overall, there were 13 print viders to identify facilities where articles, 2 featured online and there were a In May 2019, The Alzheimer Society of Ire- dementia- inclusive initiatives could number of local radio interviews. land (ASI) called on all candidates in the be held and link with other Community local elections to promote dementia-in- Champions to offer these; clusive communities if they were elected. 3. Encourage public-facing staff (e.g. in We have heard from This support from local representatives in libraries), to participate in demen- politicians and communities around Ireland is extremely tia-awareness training; constituents that the issue of important to help the 55,000 people living 4. Finally, The ASI called on local councillors with dementia. to lobby their own parliamentary party to dementia is being raised on make dementia a priority. “doorsteps more than ever.” With dementia being a growing issue and the majority of those with dementia living in the Grassroots network community, it was identified that there is a Vice-Chair of the IDWG, Kathy Ryan, who need for a “whole community response” to Another pivotal part of the campaign was helped to promote the local election cam- dementia. Local councillors, who are working mobilising the grassroots network of The ASI. paign on behalf of The ASI, believes that every day in their own communities, are wit- We did this by designing and producing 3,000 making communities more dementia-aware nessing the issues families are facing. voter prompt cards which were distributed is so important, especially in rural Ireland

The ASI campaign team, led by our Head of Advocacy & Public Affairs Tina Leonard and

Following our campaign, Dublin City Council, the largest administrative council in Ireland, decided to take a “leadership role on dementia issues. They worked with us to include dementia-specific tips in their ‘Age Friendly Communication’ booklet.” Tina Leonard and Avril Easton

Dementia in Europe 27 DEMENTIA IN SOCIETY

where those with dementia can oft en experi- Dublin City Council also committed to making its staff ence social isolation and loneliness. The local election campaign was particularly poignant members dementia aware. We co-ordinate awareness sessions for Ms Ryan, as the last time the local elec- as part of the “Dementia: Understand Together” campaign. As this tions were held was in 2014, the same year was a key ask in our campaign, it is great to see it begin to have a she received her dementia diagnosis. “meaningful impact on people’s lives.” Dementia-aware administrative council in Ireland, decided people’s lives. The fi rst awareness session “The vast majority of people diagnosed with to take a leadership role on dementia issues. took place on 11 July 2019, with more to fol- dementia want to live in their own home They worked with The ASI to re-write their low. As the largest council in the country, it and stay active in their own community. In “Age Friendly Communication” booklet is expected that other councils around the order for this to happen we need our com- to include dementia-specifi c tips. It was country will follow Dublin City Council’s lead- munities to become more dementia aware,” launched at a celebratory event at the start ership on dementia and The ASI will promote Ms Ryan said. “When a community is demen- of July, at which The ASI CEO and Alzheimer and facilitate this. tia aware, it makes the diff erence between Europe Board member Pat McLoughlin us living as well as possible or staying at spoke of the importance of integrating Although, it is oft en diffi cult to measure the home behind closed doors, which has a dementia knowledge into guidelines on overall success of campaigns such as these, hugely negative impact on our health and communicating. anecdotally we have heard from both pol- wellbeing. This is why these local elections iticians and constituents that the issue of are so very important. Newly-elected coun- Dublin City Council also committed to mak- dementia is being raised on doorsteps more cillors can ensure that local communities ing its approximately 5,000 staff members than ever. We look forward to working closely make dementia a priority.” dementia-aware by asking them to attend a with many more local councils and councillors dementia awareness session. The ASI co-or- over the next fi ve years, to ensure that demen- Campaign outcomes dinates dementia awareness sessions for tia is given priority in local communities. staff as part of the “Dementia: Understand An example of one outcome from the local Together” campaign. As this was a key ask For more information on The Alzheimer Soci- election campaign was that elected coun- in the local election campaign, it is great to ety of Ireland’s local election campaign, go cillors in Dublin City Council, the largest see it begin to have a meaningful impact on to: www.alzheimer.ie

The Alzheimer Society of Ireland

+353-1-207 3800 [email protected] www.alzheimer.ie @alzheimersocirl @TheAlzheimerSocietyofIreland

Kathy Ryan and Kevin Quai d, members of the Irish Dementia Working Group

When a community is dementia aware, it makes the diff erence between us living as well as possible or staying at home behind closed doors, which has a hugely negative impact on our health and wellbeing. This is why these local elections are so very important. Newly-elected councillors “can ensure that local communities make dementia a priority.” Kathy Ryan

28 Dementia in Europe DEMENTIA IN SOCIETY

Campaigning for a new memory programme and for better care in Finland

In the spring of 2019, the Alzheimer Society of Finland (Muistiliitto) campaigned on several important issues. The current national Muistiliitto election campaign buttons Memory Programme is ending in 2020 and a new programme is needed. self-determination and equal practices, to live The work in Finland in a memory-friendly Finland and to get care continues. The working In Finland, 2019 started with revelations of and support in the right place, at the right time. group continues to try to instate neglect, inadequate care and insuffi cient staffi ng at care homes around the country. New government programme – positives the list of 25 commitments These issues were discussed in the media and and negatives “made on improving care.” memory-related diseases were the focus of many articles. Aft er the elections, the new government was Social Services Krista Kiuru chairs the group formed. The government programme was and our Executive Director, Katariina Suomu, In February, the Minister of Family Aff airs released in July 2019, including a promise to takes part in the meetings. and Social Services, Annika Saarikko invited rebuild the public’s trust in quality, timeliness care providers, third sector organisations, and availability of services for older people. We also need to make sure that if there is no municipalities and trade unions to discuss We were happy to see that preventive meas- national memory programme, the planned the situation together. We participated in this ures against memory-related diseases will be programme on ageing takes people with working group and told other participants brought into step with prevention of other memory-related diseases into account. It also about our workbook for professionals, “The needs to include the special features of pre- Criteria for Good Care and Life”. It is aimed vention and care of memory-related diseases. at people working in homecare services and The new government nursing homes, to help develop and evaluate has promised to rebuild their work with people diagnosed with memory-related diseases and their carers. the public’s trust in quality, timeliness and availability of Commitments made to improve care “services for older people.” The working group committed to a list of 25 measures to improve care, both in private- chronic diseases. ly-owned facilities and in public care facilities. Unfortunately, a new national memory pro- Good care was also part of our national parlia- gramme is not on the government’s agenda. mentary elections campaign. These elections Instead, the government wants to prepare a were held in April. We wanted to make candi- horizontal programme on ageing, in collab- dates aware of memory-related issues and to oration with ministries, municipalities, third Krista Kiuru inspire them to work as “memory defenders”. sector organisations and other actors. Local associations were encouraged to reach out to the candidates using Twitter. The work in Finland continues. The working group continues to try to instate the list of Alzheimer Society of Finland The goal was to make sure that a person with 25 commitments made on improving care. (Muistiliitto) a memory-related disease has the right to Finland’s new Minister of Family Aff airs and +358-9-622 62 00 [email protected] We were happy to see that preventive measures against www.muistiliitto.fi /en/home @Muisiliitto memory-related diseases will be brought into step with @muisiliitto prevention of other chronic diseases.” “ Dementia in Europe 29 DEMENTIA IN SOCIETY

UK inquiry looks at societal barriers preventing people with dementia from enjoying their full rights In June 2019, the UK government’s All Party Parliamentary Group (APPG) on Dementia published a report, “Hidden no Debbie Abrahams MP more: dementia and disability”. The report found existing loss of identity. One person with young-on- legal safeguards in the UK are failing people with dementia, set dementia told us – “I applied for so many jobs and I just got rejections. I used to lec- who aren’t able to assert their rights to be treated fairly and ture at a university and now I can’t get a job equally. Alzheimer’s Society caught up with Debbie Abrahams collecting trolleys. Any job is worthwhile. Not MP, Co-chair of the APPG on Dementia, to tell us more. having a job destroys self-esteem.” This inquiry found that there needs to be more awareness of the employment rights What were the key findings and recommen- to the ‘hidden’ nature of dementia, and the of people with dementia and more support to dations of the “Hidden no more: dementia stigma surrounding the condition. implement them. Government has a hugely and disability” report? important role to play, through both guid- A central finding of this report is that the public, ance and support for employers. Dementia is a disability, according to the employers, organisations, governments and Equality Act 2010 and the United Nation’s public bodies need to be more aware of, and Social protection Convention on the Rights of Persons with recognise, the rights of people with dementia. Disabilities. However, the APPG’s year-long Action needs to be taken across a number of The next area we looked into is social protec- inquiry, which culminated in this report, key areas to ensure that people with demen- tion, or welfare benefits as it is also known. found that society is lagging behind in this tia receive the protections and safeguards that The cost of living with a disability can be dev- understanding and failing to uphold the legislation and convention provide. astating. Being able to access extra financial rights of people with dementia. support can provide a lifeline for people with Employment dementia and can help people to continue Shockingly, 98% of the 2,500+ inquiry respond- getting out and doing the things they enjoy. ents thought that people living with dementia The first area we explored was employment are treated differently to people with other for people living with dementia. Employment One of the key challenges for people affected health conditions or disabilities, despite their can give people a sense of purpose, as well as by dementia is knowing what financial sup- rights. The respondents believe that this is due income, and without this, people can feel a port they are legally entitled to. Too often, people affected by dementia are left with no formal support after a diagnosis. One family member told the APPG that they felt “people with dementia are effectively ignored by the disability benefits system.”

To address this, the report recommends that there needs to be more support to help people find out what financial help they are entitled to, as well as how to make a successful claim. Local authorities will be key to achieving this change. People with dementia deserve to be assessed by professionals who understand the condition, without having to undergo unnecessary reviews or reassessments.

30 Dementia in Europe DEMENTIA IN SOCIETY

Social care

A further key issue was social care. The focus of the report is on the barriers faced by people with dementia with regard to fully participating and feeling included in the community and society. However, there was a lot of feedback about inadequate or inaccessible social care for people aff ected by dementia living in England. The report therefore calls on the government to urgently produce a long-term plan for addressing the social care crisis.

Transport

Another area we explored was transport. Good quality public transport can have a of dementia. We also believe that people event, some of whom shared their stories and huge impact on the lives of people aff ected need to be supported through the develop- insights into why this report is so important. by dementia. Yet, we heard many stories of ment of inclusive communities, where no We also consulted with the 3 Nations Demen- how poor or inaccessible transport is prevent- one is excluded nor has to face dementia tia Working Group (www.3ndementiawg.org), ing people with dementia from participating alone. run by people living with dementia in Eng- in society. This is despite rights to accessible land, Wales and Northern Ireland, throughout transport being enshrined in the UK’s Equal- How were people aff ected by dementia the report-writing process, and have the ity Act 2010. involved in this report? group’s full support for taking these recommendations forward. The report stresses the importance of any As part of this inquiry, the APPG launched changes to bus and community trans- a call for evidence, from anyone with What are the next steps? port services being mindful of reasonable an interest in dementia – personally or adjustments to ensure the services are still professionally. Over the coming months, the All Party Parlia- accessible. There must also be an increase in mentary Group on Dementia will be working societal awareness of the condition to reduce We received an unprecedented amount of closely with Alzheimer’s Society to turn this the stigma and discrimination that people feedback via an online survey, focus groups, report’s recommendations into reality. We with dementia face and feel while using pub- written evidence and an oral evidence session. have several meetings planned with senior lic transport. The amount of feedback received was one government offi cials, as well as cross-party of the largest responses to any APPG inquiry, commitments to debates, and to bring for- Housing and I think this really highlights the impor- ward pieces of legislation. I hope that this tance of this issue. work will make a lasting diff erence to the lives Housing was also extensively mentioned in of people living with dementia and their car- our report. We found that people with demen- How was the report received? ers and supporters. tia are frequently being denied their right to live independently in their own homes, where The report has been very well-received, both they are able to make their own choices. It locally and nationally. We have had lots of is important that people with dementia are interest from parliamentarians and local gov- supported as much as possible to stay living ernment offi cials who are keen to pursue the in their own homes or are supported to access report’s recommendations. I hosted a West- suitable housing. minster Hall debate in July 2019, where the report was welcomed by a cross-party group People living with dementia must have access of MPs. It also received national and local to adaptable housing, trained home-care staff , media coverage. We hope that this helped and specialised supported housing schemes. to raise wider awareness of dementia as a disability, and subsequently the rights of those Alzheimer’s Society UK Community life living with dementia. [email protected] www.alzheimers.org.uk The fi nal area we looked at was community Crucially, it was also well-received by peo- @alzheimerssoc life. The report found that communities must ple aff ected by dementia. There were many @alzheimerssocietyuk increase their awareness and understanding people aff ected by dementia at our launch

Dementia in Europe 31 DEMENTIA IN SOCIETY

Iceland forms a working group The group wants to be the voice of dementia of people with dementia in the community, and to cooperate with other groups and Sigurbjörg Hannesdóttir, project and training manager “associations, at an international at Alzheimer Iceland, and her predecessor Sirrý Sif level.” Sigurlaugardóttir, a gerontological social worker, tell us about three individuals with dementia and four the first ever working group of people with dementia to be family members. The main goal of the formed in Iceland. meeting was to introduce the members of the group to one another, and to allow them to express their ideas and/or expectations for future meetings. Alzheimer Iceland was Prior to forming the working group of people of members asking for a platform for people pleased with the new initiative and was will- with dementia, the possibility of having such with dementia. The voice of those with young ing to help the group in any way it could. The a group in Iceland had been raised a num- onset dementia was particularly loud. focus of the group was on issues regarding ber of times in recent years, within Alzheimer employment, such as employers’ reactions, Iceland. The main inspiration for these dis- and participation in the labour market; family cussions and, ultimately, for the creation of This is a group for people impact; and parents with dementia bringing the group itself, was the European Working with dementia and it must up children/adolescents. Group of People with Dementia (EWGPWD). There was, however, a barrier to getting peo- be tailored to their needs.” Special attention was paid to human rights ple involved. The discussion around dementia issues and to promoting better awareness was still quite negative at that time (around “The first meeting of the group was in Jan- of the various types of dementia. The group 2010). Thankfully, much has changed since uary 2019. It was held in the premises of wants to be the voice of dementia in the com- then and, in 2017, there was a growing number Alzheimer Iceland. Seven people attended, munity, and to cooperate with other groups

Pioneers, Reykjavík marathon, 22 August 2019

32 Dementia in Europe DEMENTIA IN SOCIETY

and associations, at an international level. now a division under the Icelandic associa- panel where they were able to tell their sto- The working group also wanted to be a part tion with Ellý Katrín Guðmundsdóttir as its ries, together with their family members. of Alzheimer Iceland and to be able to have Chair and Jónas Jónasson as its Vice-Chair. The conference was open to everyone and is access to the facilities at the association. Two individuals from the group are sponsored well-known in Iceland. In 2019, 300 people With the permission of Alzheimer Europe, the by Alzheimer Iceland to attend the Alzheimer attended the conference. guidelines for participating in the EWGPWD Europe Conference each year. were translated and adapted for Iceland, and The future are being used by the new group. The Road Ahead The Pioneers are discussing the criteria for The working group has found a name, they participation in the group. There are more The group wants to be call themselves “Frumkvöðlar” (Pioneers). The and more people with young onset dementia the voice of dementia Pioneers participated in the Reykjavík mara- contacting Alzheimer Iceland to ask for infor- thon, which is held every year in Iceland. mation, and the group wants it to be open in the community, and to for everybody diagnosed before the age of 65, cooperate with other groups and World Alzheimer’s Day, 21 September 2019 which is defi ned as early diagnosis. If partici- “associations, at an international pation increases, there are many possibilities Alzheimer Iceland hosted a conference in to accommodate this, for example the group level.” Reykjavík on World Alzheimer’s Day, 21 Sep- could be split by age or interest. No person tember 2019. The theme of the conference with dementia in the group is required to be At its fi rst meeting, the group decided to meet was “I am still me”, focusing on the human accompanied by a spouse or other supporter/ at least 6 times per year, taking December rights of people with dementia. The Pioneers carer. This is a group for people with dementia and the summer months off . The group is took part in the conference and there was a and it must be tailored to their needs.

Profi le Sigurbjörg Hannesdóttir is a project and training manager at Alzheimer Iceland The main inspiration for She is an occupational therapist and studied in Esbjerg, Denmark. these discussions and, She has a broad experience working with older ultimately, for the creation people in nursing homes. of the group itself, was the Sigurbjörg Hannesdóttir is also the president European Working Group of of The Icelandic Gerontolocial Society – “ Öldrunarfræðafélag Íslands (ÖLD), a position People with Dementia.” she has held since 2014.

Profi le Sirrý Sif Sigurlaugardóttir is a gerontological social worker in the municipality of Skagafj örður, Iceland. Previously she worked as a project and training manager at Alzheimer Iceland.

She has a masters degree in social work, from Alzheimer Iceland the University of Iceland. Her dissertation focused on evidence-based practice [email protected] in gerontological social work. Sirrý Sif www.alzheimer.is Sigurlaugardóttir is a Board member of the Icelandic Gerontological Society. @AlzIceland @alzheimersamtokin

Dementia in Europe 33 DEMENTIA IN SOCIETY

Excerpt from an interview published in a popular Icelandic newspaper, the “Morgunblaðið”, on 22 August 2019

“I am not the same as I used to be“

“It is diffi cult to put a timeline on the changes that have occurred in me over the last two years. I’m not the same as I was, but part of me still exists. Aft er I told everybody that I have Alzheimer’s disease, I experienced a feeling of freedom, and the shame that I experienced from having the disease disappeared”, says Ellý Katrín Guðmundsdóttir, who was diagnosed with Alzheimer’s disease four years ago, then 51 years old. Magnús Karl Magnússon and Ellý Katrín Guðmundsdóttir, Morgunblaðið, 22 August 2019 Aft er I told everybody that I have Alzheimer’s special department of Alzheimer Iceland, and thanked her for telling her story at the which goes by the name “Pioneers”. The Icelandic Genetics Research Conference. disease, I experienced a group includes twelve people, six individ- feeling of freedom, and the uals diagnosed with Alzheimer’s and their Magnús says many things have changed shame that I experienced spouses. since Ellý’s diagnosis. He has stepped aside “ in various managerial positions, focusing from having the disease “Eight people were in the group initially and instead on the work and hobbies that he disappeared.” the group will expand further. Today, the fi nds the most interesting. Pioneers are individuals between 50 and 66 Ellý Katrín Guðmundsdóttir years of age. The group meets monthly, and outside meetings, they also get together Many people have Ellý spoke publicly about her illness at the for fun”, says Magnús Karl Magnússon, stopped [Ellý] in the Icelandic Genetics Research Conference Ellý’s husband, who stresses the impor- street, especially the older two years ago, and now plans to partici- tance of interacting with people in a similar pate in the Reykjavik Marathon with the position; people who are still active in life. generation, and thanked her “Don’t Forget the Joy” running team, to Ellý Katrín adds that she is the only one “for telling her story.” raise money Alzheimer Iceland. The run- in the Alzheimer’s group who is still in ning group is running the marathon for employment. the third time, and was founded by Stefán Elly and Magnús live a healthy life and Hrafnkelsson aft er he was diagnosed with Ellý Katrín says she is glad to have stepped focus on a so-called “mind diet” – a diet Alzheimer’s disease when he was 58 years forward and spoken up about Alzheimer’s that fi ts well with the nutritional goals of old. Now fi ve more people who have been disease. She “comes to the door as she is the Medical Director of Health – eating diagnosed with Alzheimer’s and their fam- dressed” (an Icelandic saying), it is in her raw healthy oils, less red meat and more ilies are joining the running group. “Don’t nature. It was good to “come out of the fruits and vegetables. “Like blueberries”, Forget the Joy” refers to the importance of closet”, she says. Ellý chips in, adding that the diet includes not forgetting that joy is still possible, even one glass of red wine a day. “Every night though the memory is aff ected. Magnús adds that, although the process of we have our glass of red wine, talk about diagnosis was underway and the “hiding” the day and listen to good music”, say Ellý Before Ellý was diagnosed, she worked as was over, the positivity and joie de vivre that and Magnús, who work closely together a secretary for the city council, reportedly had always characterised Ellý were dimin- on their goals “and focus on enjoying the receiving a lot of support from them. She ished. Magnús felt similarly to his wife, and moment and the one that gives life value.” still works part-time, at 60%, in the depart- says it changes a lot, now that everything ment of environment and planning. Ellý is “out in the open” with friends, family, The “Don’t Forget the Joy” running group declares herself to be passionate about and the wider community. The answer to a raised IKR 1,817,850 (EUR 13,105.71) for environmental issues, and she studied simple question like “what’s new?” is diff er- Alzheimer Iceland and have helped increase environmental law in the USA in 1994. In ent when something is actually wrong. Ellý public awareness of dementia in Iceland. addition to this work, Ellý and Magnús says that many people have stopped her in participate in a group, working within a the street, especially the older generation,

34 Dementia in Europe DEMENTIA IN SOCIETY

trial was underpowered to detect efficacy. Gene therapy for Alzheimer’s Moreover, they suggested that targeting cholinergic neuron loss may not be suffi- cient to halt cognitive decline in participants disease: hope or hype? with established AD.

Angela Bradshaw and Cindy Birck of Alzheimer Europe explore So, back to the drawing board. Researchers and explain recent developments in the gene therapy field. identified a new gene target; this time, one that is directly linked to the most prevalent genetic risk factor for AD, ApoE. We each Advanced therapies that use genes as med- aims to treat, which is caused by a single dys- possess two copies of the ApoE gene, which icine have long been touted as the next big functional gene. The choice of which gene to comes in three flavours (or variants): ApoE2, thing in the treatment of inherited diseases. use as therapy for AD is therefore a source of ApoE3 and ApoE4. In 1993, a landmark study This promise is now bearing fruit: in Novem- contention that has yet to be fully resolved. showed that individuals with two copies of ber last year, the European Medicines Agency the ApoE4 variant were at much higher risk (EMA) approved Luxturna, the first gene ther- Gene replacement therapy: NGF and APOE2 of developing AD at a younger age than peers apy for an inherited retinal disease. Luxturna, without ApoE4. However, the ApoE2 variant appropriately named after the Latin word for Against this challenging backdrop, devel- appeared to be neuroprotective: individuals light, delivers a working copy of a gene that opment of the first AD gene therapies were with ApoE2 were at much lower risk of devel- is dysfunctional in people with a rare inher- based on the observation that cholinergic oping AD, even if they had one ApoE4 copy. ited form of blindness. In Phase III clinical neurons are lost from the basal forebrain trials, a single injection of Luxturna in each during AD development. Researchers aimed Starting in September 2019, a Phase I clinical eye resulted in a gain of functional vision in to accurately hit the same biological target trial will test a new gene therapy designed to 93% of the trial participants. as drugs such as donepezil and rivastigmine, harness the protective power of ApoE2. In this by protecting and regenerating choliner- trial, which is co-funded by the Alzheimer’s The key to Luxturna’s efficacy is the vector it gic neurons. Named CERE-110, the first AD Drug Discovery Foundation, participants with uses to deliver its DNA payload. Similar to a gene therapy consisted of a virus that deliv- two copies of ApoE4 will receive increasing majority of gene therapies, Luxturna harnesses ered the nerve growth factor gene directly doses of a viral vector encoding ApoE2. This the inherent propensity of viruses to enter cells to the brains of participants, via an injec- vector, called AAV10, was chosen based on quickly and stealthily. In addition, viruses tion into the forebrain area. Although the its improved affinity for neurons compared have evolved over millenia to preferentially approach was deemed safe and tolerable to AAV2, the vector used in the CERE-110 tri- infect different organs in the body – providing after Phase I trials completed in 2010, trials als. Another key improvement is the delivery researchers with a veritable arsenal of vectors of CERE-110 did not progress beyond Phase approach. Instead of focusing on a small area to choose from. By carefully selecting a virus II, as no improvement in clinical outcomes of the brain as the CERE-110 trials did, the that naturally infects the eye, the developers was observed. Proponents argued that the ApoE2 gene therapy will be delivered to the of Luxturna achieved the medical holy trinity: a treatment that effectively delivers the right gene, to the right tissue, at the right time.

Gene therapies are also being developed for acquired diseases such as cancer, heart failure and non-familial forms of Alzheimer’s disease (AD). However, AD therapeutics are faced with a physical obstacle in the form of the blood- brain barrier, which acts as the brain’s first line of defence against blood-borne patho- gens. The multifactorial nature of AD throws another spanner in the gene therapy works. For example, we now know that inflammation, vascular dysfunction and genetics all play a role in the development of AD. Risk factors for AD include diabetes, hypertension, cardiovascular disease and female gender, among others. AD therefore has a plethora of cellular, biochemical, structural and genetic causes – unlike the inherited blindness that Luxturna

Dementia in Europe 35 DEMENTIA IN SOCIETY

subarachnoid cisterns. These structures are The next question was how to get these therapy trials are still in Phase I/II, a long way fi lled with cerebrospinal fl uid, which bathes molecular tools to the right tissue, at the from the clinic. Nevertheless, technological the entire brain and will hopefully ensure a right time. In response, scientists went back advances in gene therapy have opened up widespread distribution of the ApoE2 ther- to their viral gene therapy arsenal. Using viral new therapeutic frontiers, providing treat- apy. Results are due to be published in 2022. vectors that targeted the brain, researchers ment options for diseases previously thought showed they could use CRISPR/Cas9 to dis- to be incurable. With 6 gene therapy products From gene replacement to gene silencing rupt the mutant amyloid precursor protein approved since 2016, and 232 gene therapy and beyond gene in animal models of familial AD. The clinical trials initiated in 2018 alone, the time results from these and other similar preclin- is now ripe to assess whether people with AD The CERE-110 and ApoE2 trials are based on the ical studies are encouraging: good reductions could benefi t from these advances. principle of gene replacement. However, this in amyloid deposition and no detectable is not the only game in town when it comes off -target eff ects – so far. to gene therapy. In August 2018, the EMA approved Onpattro, a gene silencing therapy However, there are potentially far-reach- for hereditary transthyretin-mediated amy- ing consequences when using CRISPR/Cas9 Profi le loidosis (hATTR). Rather than increasing the in humans, as genome editing using this quantity of a therapeutic “good” gene, Onpat- technique is irreversible. In November last tro is designed to silence the expression of a year, the scientifi c and medical communi- pathological “bad” gene – in this case tran- ties reacted in uproar when Dr He Jiankui sthyretin, which promotes the formation of announced that he had performed genome amyloid clusters in people with hATTR. editing in human embryos, resulting in the live birth of twin girls. Dr He reported that Onpattro is classed as a small interfering rib- he had successfully ‘enhanced’ these babies, onucleic acid (siRNA), a class of drugs that inactivating their CCR5 genes and thereby function by targeting specifi c gene prod- protecting them from being infected with Dr Angela Bradshaw is a project offi cer at ucts for molecular destruction. The beauty HIV. In response, the European Societies of Alzheimer Europe, collaborating on the of siRNAs is their adaptability: they can be Gene and Cell Therapy released a consensus VirtualBrainCloud and Neuronet projects. designed to specifi cally match – and destroy statement condemning germline genome She is also an honorary Lecturer at the University of Glasgow, where she formerly – any gene product within the cell. Antisense editing as irresponsible, risky and ethically led translational research projects on oligonucleotides (ASOs) work on a similar unjustifi able. gene therapy for vascular disease. She premise, and the fi rst Phase I/II ASO trial for holds a PhD in vascular biology from the AD is currently ongoing. Developed by the To address these legitimate ethical concerns, University of Cambridge. biotechnology company Ionis Pharmaceuti- researchers are now developing reversible cals in collaboration with an academic team RNA editing approaches. In an article pub- in St. Louis, BIIB080 is an ASO against Tau lished in the Science journal this July, the that is administered to research participants Zhang lab described a new RNA editing with mild AD. Researchers hope that BIIB080 approach they call ‘RESCUE’. RESCUE uses Profi le will reduce Tau levels in the brains of these a Cas9-related protein, Cas13, to specifi cally participants, slowing down AD progression; edit RNA instead of DNA. By focusing on RNA, results are due in 2020. the intermediary between DNA and protein, RESCUE can intercept and correct fl awed In their quest for better therapeutic messages from our genes – without caus- approaches, researchers are now looking ing irreversible genetic changes. This brings beyond viral gene therapy and gene silenc- us back to ApoE: the good ApoE2 variant and ing technologies, towards genome editing. its bad sibling, ApoE4. ApoE2 and ApoE4 are Genome editing is based on a straightforward genetically identical apart from two small concept: using molecular tools to mod- “spelling mistakes” in the ApoE4 sequence ify, delete or rearrange the DNA of a living that have huge consequences in terms of AD Dr Cindy Birck is a project offi cer at organism. In 2012, Emmanuelle Charpentier risk. Remarkably, Zhang was able to use RES- Alzheimer Europe. She holds a PhD in and Jennifer Doudna showed how the bacte- CUE to repair these spelling mistakes in cells, Systems and Molecular Biomedicine with special interest in neurobiology. She is rial CRISPR/Cas9 system could be used as a transforming pathological ApoE4 into bene- currently collaborating in diff erent research “cut and paste” tool in mammalian cells. Ele- fi cial ApoE2. projects supported by Alzheimer Europe gant yet simple, this system uses short RNA including EPAD, AMYPAD and PRODEMOS. sequences to “guide” molecular Cas9 scissors As the newest kid on the block, RESCUE thera- She is also leading the Alzheimer Europe to edit specifi c regions of the genome, helped pies will not be hitting the pharmacy shelves database on clinical trials in Europe. by the host DNA repair machinery. anytime soon – and the siRNA and viral gene

36 Dementia in Europe SPOTLIGHT ON THE NETHERLANDS

As a health fund, we Alzheimer Nederland celebrates spend more money on 35th anniversary – scientific research every year. Last year, this came in at over “We have already accomplished “EUR 5 million. This makes us the largest private funder of research a great deal together” into dementia.” Alzheimer Nederland, co-host of #29AEC, is a patient organisation as well as a health fund. In its 35 years of demented people, but about people with dementia. You have been diagnosed with a existence, the organisation has been of great help to people disease, but your disease doesn’t define who with dementia, as well as to their loved ones. Executive you are. That’s a big difference.” Director Gerjoke Wilmink reflects on the occasion. Employees and volunteers

“Alzheimer Nederland is a patient organi- “In January 1984, a Dutch television show By the end of December 1984, the Alzheimer sation as well as a health fund. About 100 (‘Koos Postema in gesprek’) raised the topic Foundation – renamed Alzheimer Nederland people work at our head office in Amersfoort, of dementia for the very first time. Until then, in 2000 – had become a reality. The founda- and more than 4,500 volunteers are commit- dementia was mostly just considered a symp- tion’s objectives were: to break the taboo on ted to our cause throughout the country. They tom of old age. In the studio, a psychiatric dementia, to provide information and advice, do a phenomenal job, and some of them have geriatrician, neurologist, brain researcher and to encourage contact with others and to pro- been with us for 35 years. We greatly appreci- general practitioner talked about Alzheim- mote scientific research. We still do this today, ate their knowledge and skills. From the very er’s disease. The response was overwhelming: in a great many ways. beginning, volunteers have been involved after the broadcast, the telephone hotline of with the Alzheimer Hotline, which can be Stichting Korrelatie – an organisation that The branches all focus on reached daily. Many caregivers call with ques- provides anonymous, professional, psycho- tions about their loved ones with dementia, logical and psychosocial assistance – received the same themes, but also or to have someone to tell their story to. 20,000 calls from viewers. Suddenly, the prob- address local issues.” lems people were experiencing with their Our Alzheimer Cafe, a Dutch invention, are father, mother or partner had been given a Over the years, Alzheimer Nederland has played also run by volunteers. The cafes provide name. The need for information was enor- “a major role in the recognition of dementia as monthly meet-up places for caregivers, social mous. The idea to set up a foundation along a brain disease. What’s more, dementia is a workers and people with dementia. They are the lines of the Canadian model was born condition that not only affects the elderly, but accessible, educational and sociable events. soon after, during a congress on dementia. also young people. We no longer talk about Visitors can listen to lectures and talk to others who are dealing with the same or a similar situation. There are now 246 of these cafes scattered throughout the country, which means there is always one nearby.

Through these well-attended Alzheimer Cafes our organisation is close to people every- where. The volunteers are our eyes and ears. They know what’s going on in their respective areas and they represent, on a local level, the interests of people with dementia and their loved ones. This is extremely important, because the policy of social support is organised locally in the Netherlands, and may vary from one municipality to another. We also have a strong lobby in The Hague for advocacy at a national level. We have already accomplished a great deal together.” Alzheimer Nederland staff team

Dementia in Europe 37 SPOTLIGHT ON THE NETHERLANDS

University. There are now five such research centres, linked to a memory clinic. Besides Maastricht there are Alzheimer Centres in Amsterdam, Nijmegen, Rotterdam and Gro- ningen. In addition to fundamental research into the effects and cure of dementia, we also support applied research into prevention, diagnostics and patient support.

Our broad research agenda also stood at the basis of the national Dementia Delta Plan, which was launched in 2013. More than 70 expert organisations work together on Alzheimer Nederland wants people to be able to recognise dementia and know how they can help research, care improvement and a dementia-friendly society. Government funding for Alzheimer Nederland branches has already been consulted over 1 million times this plan occurs primarily through ZonMw. a year. We intend to expand this platform with This funding organisation for health research “Our organisational structure works well. a separate section for people living with the and development invested EUR 60 million Alzheimer Nederland has 48 branches, each early stages of dementia next year.” in dementia research. In addition Alzheimer with their own board. I appoint the chair- Nederland invested another EUR 12 mil- persons myself, and stay in close contact Largest private funder of research lion, often in cooperation with ZonMw. The with all of them. Together, we form a univo- Dementia Delta Plan ends in 2020, so we are cal club. Five regional coordinators maintain “As a health fund, we spend more money on now working on a follow-up plan comprising contact with the branches and I attend the scientific research every year. Last year, this a new research agenda.” regional meetings every year. This keeps me came in at over EUR 5 million. This makes informed about what is going on throughout us the largest private funder of research Scientific breakthrough the country. The branches all focus on the into dementia. In order to raise funds, we same themes, but also address local issues. If organise a yearly door-to-door collection “A very important breakthrough that we there are a lot of young people with demen- and a television show. We are the initiators owe to scientific research is the capacity to tia in an area, more attention is paid to them. behind the research agenda used at the diagnose dementia much earlier and with We respond to local needs: there are regions national level, which we draw up in consul- more certainty. Different forms of demen- that prefer the name Alzheimer Meeting Point tation with our members. As it turns out, not tia have different symptoms and causes, instead of Alzheimer Cafe. In areas with a high just doctors and scientists, but also people and we are now able to better distinguish migrant population, we organise Alzheimer with dementia themselves and their car- between them. This is mutually beneficial Tearooms with Turkish or Moroccan/Arabic as egivers prioritise a cure for dementia. Even for researchers who can build on this knowl- the language of choice. We wholeheartedly though the latter group will no longer ben- edge and patients who benefit from more support such regional adaptations.” efit from it, they too desire a solution for carefree years of life. The sooner someone future generations. knows that he or she has dementia, the bet- Dementie.nl ter he or she can adjust to it. For example, In 2000, we were involved in the opening by adopting lifestyle patterns that are use- “In addition to the Alzheimer Cafes and of the first Alzheimer Centre at Maastricht ful later on in the disease process. Alzheimer Hotline, Alzheimer Nederland also provides a great deal of online information. In addition to the website www.alzheimer-nederland.nl, we also operate the successful www. dementie.nl platform for everyone who is dealing with dementia. The need for information and online assistance is huge. Even though the website was launched only three years ago, it

We want as many people as possible to be able to recognise dementia and know what they can do to help.” “ Gerjoke Wilmink (right) is a guest on a radio programme, together with Silvy Ramsche (left) who has dementia 38 Dementia in Europe SPOTLIGHT ON THE NETHERLANDS

Scientifi c research in the fi eld of prevention has We are jointly responsible Residential facilities also enabled us to take signifi cant steps for- for our fellow human beings ward. We now know the main risk factors that “Another challenge for the future is the devel- contribute to the development of dementia: with dementia. Everyone in our opment of proper housing facilities. We diabetes, cardiovascular problems, smoking country will have to deal with the expect the number of people with dementia and physical and social inactivity. The thought disease in one way or another.” in the Netherlands to double between 2010 that lifestyle is a factor would have been sum- “ and 2040, from 280,000 to more than half a marily dismissed 35 years ago. But through the million. Two thirds of people with dementia years this notion has gained traction, fostered remain included. This is something that we are live at home, a fi gure that might increase to more interest and has since also been scien- all responsible for as a community. three quarters in the future. In itself, it is a tifi cally proven. A healthy lifestyle really can good development that people spend fewer delay the development of dementia. One in fi ve Dutch people will develop demen- years in institutional care. We do, however, tia, which makes the chances of meeting need a solution for the interim phase. The A cure for dementia will require much more someone who has the disease quite high. And current transition from one’s own home to a money for fundamental research. I am, how- while it is true that we now know much more traditional nursing home is oft en extremely ever, convinced that it is possible. Just look about dementia than we did 35 years ago, we jarring. Small-scale housing is therefore high at other formerly incurable diseases. Curing sure are not there yet. With our current cam- on our wish list, and we are hard at work those was also preceded by a great deal of paign ‘Seeing is 1, doing is 2’ we are working lobbying to realise this. Housing facilities research. Alzheimer Nederland is strongly – in conjunction with the Ministry of Health, that allow people with dementia to remain committed to this. The expectation for the Welfare and Sport and pension administra- active while also having access to medical medium term is that we can prevent cer- tor PGGM – on a dementia-friendly society. care benefi ts both them and their caregivers. tain forms of dementia if addressed at an early stage. These include hereditary variants We want as many people as possible to be able of Alzheimer’s disease and the preliminary to recognise dementia and know what they We were involved in phase of frontotemporal dementia.” can do to help. We recommend approaching the opening of the first people with dementia in a ‘GOED’ way, which Alzheimer Centre at Maastricht Dementia-friendly society stands for: ‘Geruststellen’ (reassure), ‘Oog- contact maken’ (making eye contact), ‘Even University. There are now fi ve “There has been a process of empowerment meedenken’ (empathise) and ‘Dank je wel zeg- “such research centres, linked to of people with dementia over the years. They gen’ (saying thank you). There are now more a memory clinic.” appear in the media and, starting last year, than a quarter of a million dementia friends. they have their own Dementia Event. Rules and We also provide practical training to staff in We are jointly responsible for our fellow regulations are also being adapted; in 1984 you professions that oft en deal with people with human beings with dementia. Everyone in were no longer allowed to drive aft er the diag- dementia. From train conductors to bank our country will have to deal with the dis- nosis of dementia. This changed in 2010: you employees and from hairdressers to supermar- ease in one way or another: as a patient, as are now allowed to still drive a car aft er passing ket employees, they all benefi t from learning a caregiver or as part of someone’s circle a driving test. Alzheimer Nederland wants peo- how to detect dementia in their customers of family and friends. Dementia concerns ple with dementia to participate longer and to and knowing how to respond appropriately.” us all.”

Milestones of Alzheimer Nederland over the years

* 1984: Establishment * 2000: Establishment of 1st Alzheimer Centre in * 1985: Lectures Maastricht * 1987: Start Alzheimer Hotline * 2002: First nation-wide door-to-door collection * 1991: International Conference (ADI) in Amster- * 2002: Alzheimer Europe Conference in Maastricht dam RAI * 2005: National Dementia Plan * 1993: First information campaign ‘Wij steunen * 2006: 100th Alzheimer Cafe bij dementie’ (we provide support with dementia) * 2011: Opening 4th Alzheimer Centre (Rotterdam) * 1995: Coff ee campaign on World Alzheimer’s Day, * 2013: Start of Dementia Delta Plan Alzheimer Nederland raising 80,000 guilders * 2016: Start of Samen dementievriendelijk (demen- +31 33 303 2502 * 1997: First Alzheimer Cafe in Leiden tia friendly together) [email protected] * 1999: Taboo-breaking TV series ‘Leven met * 2018: First Dementia Event for and by people www.alzheimer-nederland.nl/ dementie’ (living with dementia) attracts 300,000 with dementia @alzheimernl viewers per episode @AlzheimerNederland

Dementia in Europe 39 SPOTLIGHT ON THE NETHERLANDS

Personal commitment My mother’s dementia was a ten-year process. I noticed my mother leaving reminder Gerjoke Wilmink has been Executive notes all over the house. I only found out Director of Alzheimer Nederland since why she did that later. This was when we September 2018. Before that, she worked were on a family holiday in the south of as director at Nibud, the National Insti- France. We called my uncle Theo, who lived tute for Budget Information, for 18 years. in South Africa, from our holiday home. He Gerjoke has experienced the impact of was ill and we stayed in regular contact. dementia up close: “My mother lived The next day my mother said: “Don’t for- with dementia. She passed away three get, we still have to call Theo.” When we years ago. My father took charge of pro- answered that we had already done so the viding and organising her care. [And we day before, I saw my mother become very also had a good case manager.] At the sad. She realised at that moment that she time, my father obtained a lot of informa- didn’t remember, and that we were all wit- out because I – as she put it – interfered too tion from Alzheimer Nederland. He also ness to it. It was a painful and sad moment much with her life. I now realise that there visited Alzheimer Cafes. My mother deci- for all of us. was nothing she could do. We supported my sively refused to come along. She denied father as best we could by regularly reliev- her illness for a long time. Looking back on her period of illness, I now ing him as caregiver. Having time for oneself feel I could have made more of an eff ort is very important for caregivers. They oft en Around the same time, one of my neigh- reading up on it. If I had known more about miss out on this because they immediately bours was also living with dementia. the symptoms of dementia, I might have feel guilty when they ‘abandon’ their loved Because he didn’t have any close relatives, been able to be more sympathetic to my one for a little while. However, experience the neighbourhood banded together to mother. I remember being angry with her and research inform us that caregivers are take care of him. I remember him bringing on occasion, for example when she would able to keep on caring for longer, and can me fl owers twice on my birthday. The way repeatedly accuse me of getting rid of her ultimately do more for their loved ones, if his memory failed him made a big impres- shoes or scarves. Or when, aft er a long jour- they have regular moments to take care of sion on me. ney through a blizzard, she would throw me themselves as well.”

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“Dementia Event” shows the need for contact and ongoing participation The very first Dementia Event was organised on 5 September 2018, a national gathering for and by people with dementia, in the town of Radio Kootwijk. Two of the organisers, Silvy Ramsche and Christa Reinhoudt, look back on a meaningful and successful day.

Christa Reinhoudt at the Dementia Event

“An important wish of many people with I don’t look like someone this former broadcasting station has been dementia is to get the chance to do what refurbished by volunteers with dementia. they can still do. Helping organise an event with dementia, but really, can be one such thing. So when Silvy Ram- who does?” Both ladies felt right at home with all those sche (65) and Christa Reinhoudt (49), both other people with dementia at the Dementia diagnosed with Alzheimer’s disease, were Christa Reinhoudt Event. The room was packed, over two hundred approached by Alzheimer Nederland to join “ people showed up. It made Christa feel good. “I the Dementia Event programme commit- thought: so these are all people with dementia. tee, they were immediately up for it. They Silvy: “I also thought my days were numbered. I am not the only one. I really liked that com- were more than happy to give their input I cried for six months after being diagnosed munity aspect. Just like at a pop concert. All on what this unique day, organised for peo- with Alzheimer’s. I was completely out of these different people with one binding factor: ple with dementia by people with dementia, it, overwhelmed with sadness. But at some dementia. Everyone was very involved.” should look like. Christa: “What resonated point the tears dried up. And I went on with with me was the opportunity to meet people my life. I told everyone around me that I have Silvy was chairman of the day, together with with dementia, without there being people dementia. In my neighbourhood there are a journalist Frénk van der Linden. A brave step without dementia present.” Silvy: “Yes. Peers lot of elderly people. I am definitely not alone for Silvy: “I have always been very shy. I was banding together.” Christa: “There were peo- in having dementia.” always too afraid to speak in front of an audi- ple from all parts of the country, of all ages, ence, or even colleagues for that matter. But men, women. A very diverse group, both dur- Christa: “In my surroundings, hardly anyone I really wanted to do this, because it was so ing the preparations as well as during the knew. And when I did tell people, they didn’t important to me.” Christa: “You did really well event itself.” believe me because I am still so young. This and got everything across very clearly.” Silvy is no longer the case though, I am now very jokes: “Let’s hope it stays that way. But seri- The ten members of the committee met open about having dementia.” ously, I loved it. It was a revelation for me. I eight times. The professional support at was out there on stage holding a microphone the meetings included representatives of The Dementia Event in front of more than two hundred people. Alzheimer Nederland. And I wasn’t even nervous; I was determined. The goal of the Dementia Event was clear I just thought: ‘I’m doing this.’ Frénk helped Living with dementia in advance: bringing people with dementia me get started a little, but it was smooth sail- together to talk. The committee put together ing from there.” Christa was diagnosed with Alzheimer’s two a varied programme. Speakers with demen- years ago. “For a brief moment I felt relief”, tia shared personal stories, brain researcher she says, “because it explained why I was professor Erik Scherder emphasised the increasingly making mistakes in my work as importance of exercise and singer Willeke I really enjoy meeting so a coordinator. I wasn’t crazy; there was some- Alberti regaled the audience with her most many others people who thing wrong in my brain. Then it dawned on beautiful songs. After a joint lunch, visitors me that I had Alzheimer’s. A terrible disease. were given the opportunity to continue their are going through the same I feared I had only five years left. What was I discussions in small groups. The location for thing.” going to do? I was only 47 years old, and my the event was the historic building of Radio children were still living at home.” Kootwijk. An appropriate place, as the site of “ Silvy Ramsche

Dementia in Europe 41 SPOTLIGHT ON THE NETHERLANDS

Christa helped out in getting the discussions the disease mean to them as parents? That’s going at the various tables. “When you have what I wanted to talk about. I met a woman all these people living with the same condition with young children. It was nice talking to her in one room, you don’t want them just mak- about raising kids. As a mother with demen- ing small talk.” The committee had thought of tia, you lose a certain authority. If you can’t discussion topics beforehand. Such as: Is there remember it all, then what’s the use? We both something specific that helps you deal with recognised that feeling. Our conversation was the impact of the disease in your daily life? very valuable to me.” What tips do you have for others to overcome practical bottlenecks? And what do you do to There was a separate programme for the keep in touch with people in your immediate caregivers who had accompanied the partic- vicinity, such as family and friends? Ideas and ipants. Silvy, laughing: “That wasn’t easy for frustrations were written on pieces of paper some of them.” Christa agrees: “They would Silvy Ramsche holds the microphone for an attendee and stuck to a wall. come over and look in on us anyway, out of curiosity, or concern. The organisation kindly annoys the people who are in line behind me. referred them back to the other room and Also, I don’t always remember how the PIN I was out there on stage kept them informed there on everything that device works. When I ask a cashier what to was going on with us.” do, they laugh at me nine times out of ten. holding a microphone in They think I am kidding. At first this made me front of more than two hundred A manifesto for dementia angry. But nowadays I ignore it, I am just not in people. And I wasn’t even the mood for complicated discussions. I don’t nervous; I was determined.” The programme committee had also drawn look like someone with dementia, but really, “ up a manifesto to which visitors could react. who does? It is good that employees are being The manifesto includes ten requests from trained to recognise the symptoms. That will Silvy Ramsche people with dementia to the people around allow them to better assist us.” them in society. ‘Support us where necessary, Christa: “I walked around and would join dif- so that we can participate as long as possible Silvy has handed the manifesto over to the ferent tables to ask questions. Personally I felt in daily life’, is one of them. ‘Talk to us, not National Ombudsman, Reinier van Zutphen, the need to talk to people of my own age, so about us’, is also an important point. And: ‘We after a live radio broadcast (Spraakmakers, I sought them out. From my former profes- struggle with our self-confidence. Please don’t Radio1). He included it in his report ‘Borg sion as a pastoral worker I already knew many behave in such a way as to make us even more de Zorg’ (Safeguarding Healthcare) with rec- stories of the elderly, but I was very curious insecure.’ Christa recognises this: “When I go ommendations to the Minister. The first about the experiences of younger people with grocery shopping on my own, I often get con- Dementia Event has therefore also sent out dementia. People who, like me, have a fam- fused at the register. Suddenly I am unsure an important signal to politicians. ily with children living at home. What does whether I’m in the right lane, which really This year, the second edition of the Demen- tia Event will take place on 23 October in the World Forum in The Hague. The programme includes a lecture on what is still possible with dementia, as well as music, dance, art and workshops. Christa has no need for it any- more: “I now go to day treatment for young people with dementia. There I have plenty of contact with people with dementia my age.” Silvy, on the other hand, is happy to be back. “I really enjoy meeting so many others people who are going through the same thing.”

What resonated with me was the opportunity to meet people with dementia, without there being people “without dementia present.” Attendees listen to a speaker during the Dementia Event Christa Reinhoudt

42 Dementia in Europe SPOTLIGHT ON THE NETHERLANDS

Health Minister discusses the Netherlands’ journey towards becoming dementia-friendly The Dutch Minister of Health, Welfare and Sport, Hugo de Jonge, spoke with Alzheimer Nederland about the progress towards creating a more dementia-friendly Netherlands, bringing together a broad coalition of stakeholders to play their part.

In the Netherlands, good care is an impor- research into dementia, better care for peo- tant matter for everyone. Virtually all research ple with dementia and making our society into what people consider important that has friendlier to people with dementia. Plans have been conducted in recent years places good been made and implemented, results have care at the top of the wish list. The Dutch sys- been achieved and are currently being eval- Hugo de Jonge tem for health insurance, which all 17 million uated: what has worked and what will the people use, is driven by solidarity. Young pays course look like in the coming years? work, in their own job or as a volunteer. There for old. Rich for the poor. Healthy for the sick. are projects in which people with dementia We take care of each other. Making society more friendly to people with participate in forest maintenance or work dementia - how do you do that? In the first at a farmers’ market. An older man reads to place in a practical way. The Dutch Railways toddlers and now feels part of the commu- More research is needed (NS), large supermarket chains, municipal- nity again. Not only in the playgroup, but in to find a medicine or ities, banks and all kind of services have the entire neighbourhood. When the chil- treatment that makes the embraced the assignment. There are now dren see him on the street they shout: “Hi dementia-friendly cash registers, entrance grandpa! When will you come and read to disease manageable and to gates at railway stations and counters in a us again?” Such seemingly small things are “prevent dementia. That is why variety of services. Last month, a nation- very important. we are going to double the wide campaign was launched to help public transport staff and travellers to become more The Deltaplan Dementie helps people to research budget.” dementia-friendly. Such adjustments make maintain control over their lives and their the world accessible to people who can no self-esteem. This approach made us think. However, availability of good care is not a longer keep up with the complexity. Can’t we better facilitate the possibilities matter of course. The demand for care is of people with dementia? What if we can increasing, certainly because we are get- Remaining active within communities find meaningful activities for every person ting older. Care for people with dementia is with dementia? What if we can help people a major point of attention in this regard. One But for people living with dementia, main- affected by dementia at a young age to con- in five people in the Netherlands develops taining control over one’s own life is not tinue to perform their paid job? What if we dementia, everyone is confronted with it in enough. Just like any other person, they adapt the environment to make it easier for their immediate environment. Dementia is want to be of value. For their family, friends, people with dementia to stay mobile and well on its way to becoming the number one neighbours, and for society. And it is just as independent? You could make clear direc- public disease. important for them as for everyone else to tion indicators to help find your way to the be active and meaningful. In the first stages supermarket, the mall, the park or the library. Practical steps of the disease, people can often continue to You could create enough places to sit and

A few years ago, the business community, No one can ignore dementia and the devastating impact it science, government, patient organisations has. That is why we need the help of companies, institutions, and healthcare providers started a Deltaplan Dementie (the Dutch dementia strategy) chain stores, carriers, neighbours, friends, relatives and loved ones together. The plan has three pillars: more “to face this enormous challenge. We need society.” Dementia in Europe 43 SPOTLIGHT ON THE NETHERLANDS

rest for a while. You could ensure that peo- Just like any other person, [people with dementia] want to be ple in the neighbourhood know what to do if someone needs help. of value. For their family, friends, neighbours, and for society. And it is just as important for them as for everyone else to be active All these ideas are part of the policy course and meaningful.” of the ministry for the future. The starting point is that we want to help people with “ dementia to continue to participate in soci- costs. We focus our efforts on that, because budget. The Netherlands is a small country, ety, by taking advantage of their options every person with dementia deserves the our contribution is certainly not the largest and, where necessary, adapting their envi- best possible quality of life. in absolute numbers. But if we all take such a ronment. In addition, we must focus on the step, starting in Europe, and focus our mutual care and support for people with dementia Funding for future research attention on dementia research that does and those around them. We want to main- justice to the impact that the disease has tain the quality of care by introducing more Dementia comes in many forms. It is a more and more in our societies, then I am proven care concepts, paying more attention huge problem that the coming decades will convinced that we can have a big impact. to care from social networks and by better only get bigger. To cope with that problem anticipating the growing number of people we must find a solution, a treatment that But we need more than money. No one can with dementia. Great research has already works, an answer to the questions that are ignore dementia and the devastating impact been done into new care concepts. We now still there. That answer is not yet available. it has. That is why we need the help of com- know ways to improve the quality of life of More research is needed to find a medicine or panies, institutions, chain stores, carriers, people with dementia, whereby the work- treatment that makes the disease manage- neighbours, friends, relatives and loved ones load for employees and informal caregivers able and research to prevent dementia. That to face this enormous challenge. We need soci- decreases, as well as reducing healthcare is why we are going to double the research ety. Only together we can make a difference.

We remain committed to transforming Alzheimer’s disease and to preserving what makes people who they are

Date of preparation: September 2019 NP/AZD/1908/0016

44 Dementia in Europe SPOTLIGHT ON THE NETHERLANDS

Deltaplan Dementie underpinned by policy pillars of research, care and awareness raising As the Deltaplan Dementie moves towards its final stages, Philip Scheltens, Director of the Alzheimer Centrum Amsterdam, and Marco Blom, Deputy Director – Research and National Services, Alzheimer Nederland, reflect on the priority areas and work of the strategy since its launch in 2012. Philip Scheltens

The Deltaplan Dementie is the second On our way out, we were accompanied by the director of national dementia strategy launched by the Dutch Ministry of Health, Welfare and Sports. ZonMw (The Netherlands Organisation for Health Research It is an eight-year programme which will last and Development). He congratulated us not only on the result but until 2020 and was developed to address also - much to our surprise - on the pace of the process.” and manage the growing problem of dementia in the Netherlands. However, it was not “ Philip Scheltens the first national program on dementia.

As early as in 2005, a four-year programme Centrum Amsterdam was the initiator of the research into prevention and finding a cure called Landelijk Dementie Programma (LDP) plan and took the initiative for building a for dementia, through to research with a was launched to improve care for people network of public and private stakeholders. focus on treatment, support and quality of with dementia and their caregivers, with Right from the start, he invited Alzheimer life. The budget provided by the ministry for a strong focus on their expressed needs Nederland to join the initiative. Memorabel, the research programme of the and problems. It came with a budget of Deltaplan Dementie, totalled EUR 60 mil- EUR 2.8 million and led to many improve- It took almost two years to get the plan lion. In the history of dementia research in ments in local and regional care. However, started. Philip Scheltens: “I still remem- the Netherlands this was unheard of. The it was discontinued following a policy ber the day when Marco Blom and I left a dementia research community were given shift to the broader concept of frail elderly. dementia conference and went to the sec- a great opportunity to give the best of their Philip Scheltens, director of the Alzheimer retary of state Martin van Rijn to hear the ideas and effort to address relevant topics. final decision of the ministry on the budget Together with the strategic research agenda for the Deltaplan Dementie: EUR 32 million of the Joint Programme Neurodegenera- for the first four years. On our way out, we tive Diseases (JPND), the national research were accompanied by the director of ZonMw agenda developed by Alzheimer Nederland (The Netherlands Organisation for Health underpins Memorabel. Research and Development). He congratulated us not only on the result but also In addition to the budget provided by the - much to our surprise - on the pace of the government, there is also budget delivered process.” by private partners, including businesses and health insurers. Alzheimer Nederland is Dementia research as a priority by far the biggest private funder within the Deltaplan Dementie. Marco Blom, Deputy The Deltaplan Dementie is, by compar- Director – Research and National Services: ison to many other national strategies, “When the Deltaplan Dementie comes to rather unique in its heavy focus on scien- an end in 2020, we will have spent around tific research. The research varies from basic EUR 15 million on dementia research. The Marco Blom

Dementia in Europe 45 SPOTLIGHT ON THE NETHERLANDS

combination of public and private fund- million to conduct the fi ve-year programme. of people with dementia. To my opinion, every ing enables dementia researchers to play The third pillar of the Deltaplan Dementie national strategy (also the next strategy in an active role in fi nding solutions for peo- focuses on improving dementia care. A EUR the Netherlands) should have a clear focus ple with dementia, today and in the future. 15 million programme, ‘Dementiezorg voor on scientifi c research.” The contribution of the Netherlands in the Elkaar’, is led by fi ve national institutes in JPND programme is a good example of this.” which several projects are run (e.g. setting up a new dementia care standard and the Other policy priorities development of a registry to measure the The combination of public quality of care on a regional level). and private funding Aft er securing the budget for the research enables dementia researchers program, it took a while before other parts Combining the pillars of scientifi c research, of the Deltaplan commenced. It was only in improving care and a dementia friendly soci- to play an active role in fi nding 2016 that the program ‘Samen dementiev- ety is very useful within a national strategy. “solutions for people with riendelijk’, aimed at making the Netherlands Philip Scheltens: “We need to keep an eye on dementia, today and in the more dementia-friendly, began. However, it both the patients of today as well as future was positive that the Deltaplan Dementie was generations. Prevention and cure are the future.” open to this new idea and adopted it, with ultimate goal. It is the most powerful way the ministry allocating a budget of EUR 10 of fi nding a solution to the growing number Marco Blom

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46 15757 Dementia Dementia in press Europe ad 180x130.indd 1 11/01/2019 15:03 Our members are helping peopleOur members with dementia are helping and their peoplecarers in with 32 countries dementia and their carers in 32 countries

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AssociationMONACONETHERLANDSAMPA - Association – Monégasque MONTE-CARLO – AMERSFOORT Monégasque pour pour Alzheimer Vakfı AMPAAMPArecherche - - Association Association AMPAsurAMPA la - - maladieAssociation Association Monégasque Monégasque d’Alzheimer Monégasque Monégasque pour pour pour pour laAlzheimer recherche AMPANederlandAlzheimerla surrecherche -la Association maladie Nederland sur la maladie d’AlzheimerMonégasque d’Alzheimer pour FINLANDFRANCE – PHELSINKIARIS lala recherche recherchelala sur recherche surrecherche la la maladie maladie sur sur la la maladie maladied’Alzheimer d’Alzheimer d’Alzheimer d’Alzheimer FINLANDFRANCE – – PARIS HELSINKIFRANCFINLANDFRANCEE – – PPARIS HELSINKIARIS la recherche sur la maladie d’Alzheimer UNITEDUUNITEDUNITEEDD KINGDOMKING KINGDOMKINGDODMO –M EDINBURGHLONDONED –INB EDINBURGHLONDONEDUINBRGHU RGH AlzheimerFINLAND Society– HELSINKI of FinlandFINLAND (Muistiliitto) – HELSINKI UNITEDUNITEDTURKEY KINGDOM KINGDOM – ISTANBUL – EDINBURGH – EDINBURGH AssociationMuistiliitto France AlzheimerAssociationMuistiliitto France Alzheimer AlzheimerAlzheimer’sAlzheimerAlzheimer’s Scotland ScotlandSociety Society Muistiliitto Alzheimer Scotland Muistiliitto NORWAYMONTENEGRONETHERLANDS –NETHERLANDSNORWAY OSLO –– PODGORICA AMERSFOORT – OSLO – AMERSFOORT AlzheimerTürkiye Alzheimer Scotland Derneği NETHERLANDSNNETHERLANDSETHE –RLAN AMERSFOORTDS – – A AMERSFOORTMERSFOORT NNETHERLANDSNVOETH EFuturaRLANAlzheimerNasjonalforeningenDS – – A AMERSFOORTM NederlandERSFOOR Demensforbundet T GERMANY – BERLIN AlzheimerNasjonalforeningen AlzheimerAlzheimerNederland Nederland Nederland Demensforbundet FRANCEGERMAN – YPARIS – BE RLIN FRANCEGERMANY – PARIS – BERLIN AlzheimerAlzheimer Nederland Nederland UNITEDUNITED KINGDOMKINGDOM – LONDONLONDON FRANCEGERMANY – PARIS – BERLIN FRANCEDeutsche – AlzheimerPARIS Gesellschaft e.V. UNITEDUUNITEDNITED KINGDOM KINGDOMKINGDO –M LONDON – LONDONLONDON FranceFRANCE Alzheimer – PARIS Association France Alzheimer UNITEDAlzheimer’sUNITED KINGDOM KINGDOM Society – –LONDON EDINBURGH DeutscheAssociation Alzheimer France Alzheimer GesellschaftAssociation France e.V. Alzheimer POLANDNORWAY – – WARSAW OSLO Alzheimer’sAlzheimer’s Society Society NETHERLANDSNORWANORWAY – YAMERSFOORT – – OSL OSLOO Alzheimer Scotland Association France Alzheimer POLANDNORWAY – – NORWAYPolishNasjonalforeningenWARSAW OSLO Alzheimer’s – OSLO Association Demensforbundet Alzheimer’s Society NORWAAlzheimerNORWAYY – –Nasjonalforeningen NederlandNasjonalforeningenOSL OSLOO Demensforbundet Demensforbundet GERMANYGREECE – THESSALONIKI – BERLIN NORWAYPolishNasjonalforeningen Alzheimer’s –Nasjonalforeningen OSLO Association Demensforbundet Demensforbundet GERMANY – BERLIN GERMANY – BERLIN Nasjonalforeningen Demensforbundet GREECE – THESSALONIKIDeutschePanhellenic Alzheimer Federation Gesellschaft of Alzheimer’s e.V. NasjonalforeningenNasjonalforeningen Demensforbundet Demensforbundet GERMANY – BERLIN Deutsche Alzheimer Gesellschaft e.V. DeutscheGERMANY Alzheimer – BERLIN GesellschaftDisease and Related e.V Disorders POLANDPORTUGAL – WARSAW – LISBON UNITED KINGDOM – LONDON DeutschePanhellenic Alzheimer Federation Gesellschaft of Alzheimer’s e.V. POLAND – WARSAW NORTH MACEDONIAPolishAlzheimer Alzheimer’s Portugal – SKOPJE Association Alzheimer’s Society DeutscheDisease and Alzheimer Related GesellschaftDisorders e.V. PORTUGAL – LISBON GREECE – THESSALONIKI AlzheimerPOLAND – DiseasePolishWARSAW Alzheimer’s Association Association of GREECE – THESSALONIKI POLAND – WARSAW Panhellenic Federation of Alzheimer’s PolishAlzheimer Alzheimer’s Portugal Association Panhellenic Federation of Alzheimer’s Macedonia GREECE – THESSALONIKIDisease and Related Disorders Polish Alzheimer’sPORTUGAL Association – LISBON GREECE – THESSALONIKIDisease and Related Disorders PORTUGALAlzheimer Portugal – LISBON Panhellenic Federation of Alzheimer’s Alzheimer Portugal Panhellenic Federation of Alzheimer’s Alzheimer Portugal Disease and Related Disorders PORTUGAL – LISBON Disease and Related Disorders PORTUGAL – LISBON Alzheimer Portugal Alzheimer Portugal 30th Alzheimer Europe Conference Building bridges Bucharest, Romania 20–22 October 2020 www.alzheimer-europe.org/conferences #30AEC