Bent Høie Minister for Health and Care Services introduces Norway's new Dementia Plan 2025 - Alzheimer Europe
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Issue 35
February 2021
Bent Høie
Minister for Health
and Care Services
introduces Norway’s new
Dementia Plan 2025
Chris Roberts Olivier Véran Kim Coppes
is the new Chairperson of the European Minister for Solidarity and Health outlines Master of Ceremonies, moderates Alzheimer
Working Group of People with Dementia the future of dementia policy in France Europe’s first ever virtual conference
TABLE OF CONTENTS
Contents Contact
Alzheimer Europe
3 Welcome by Iva Holmerová, Chairperson of Alzheimer Europe 14, rue Dicks
L-1417 Luxembourg
Alzheimer Europe +352 29 79 70
+352 29 79 72
4 Alzheimer Europe hosts workshop focusing on maintaining dementia as a policy https://www.alzheimer-europe.org
priority during the COVID-19 pandemic info@alzheimer-europe.org
6 Alzheimer Europe publishes suite of reports on dementia policy and ethics @AlzheimerEurope
9 European Working Group of People with Dementia begins fifth term of office alzheimer.europe
12 EPAD: Global efforts and cooperation to advance research in Alzheimer’s disease and alzheimereurope
prevent dementia
Alzheimer Europe
15 PARADIGM: Making patient engagement in the development of medicines a reality
19 Neuronet programme launches Knowledge Base
20 SPAN+: Empowerment among people living with dementia
Policy Watch
22 Minister for Health and Care Services introduces the new Norwegian Dementia Plan 2025
25 Minister for Solidarity and Health outlines the future of dementia policy in France Board
28 The Alzheimer Society of Ireland reflects on campaign to secure dementia funding in Chairperson: Iva Holmerová (Czech
government budget Republic)
30 Future direction of EU policy emerges as series of agreements reached at the end of 2020 Vice-Chairperson: Charles Scerri (Malta)
32 European Group of Governmental Experts on Dementia meets online to update on Honorary Secretary: Jim Pearson (UK –
latest dementia policy developments Scotland)
Honorary Treasurer: Marco Blom
(Netherlands)
Dementia in Society Members
Chris Roberts, Chairperson of the European
33 Living with dementia during COVID-19 Working Group of People with Dementia
37 The impact of COVID-19 on human rights (UK – England and Wales)
40 Trust and transparency: patient and participant perspectives on data sharing Stefanie Becker (Switzerland)
René Friederici (Luxembourg)
42 What attracts Early Stage Researchers to the dementia field? Sabine Jansen (Germany)
48 Behind the headlines: Does Souvenaid improve cognitive performance in early Pat McLoughlin (Ireland)
Alzheimer’s disease? Sirpa Pietikäinen (Finland)
50 Dementia in the arts: Telling the stories of dementia through photography Karin Westerlund (Sweden)
Maria do Rosário Zincke dos Reis (Portugal)
Spotlight on 30AEC
Staff
Jean Georges, Executive Director
53 Alzheimer Europe hosts its first ever virtual conference
Christophe Bintener, Project
60 Six special symposia held during #30AEC Communications Officer
62 Showcasing European research initiatives at #30AEC Cindy Birck, Project Officer
64 #30AEC – A highly interactive conference Kate Boor Ellis, Communications Officer
66 Facts and figures Angela Bradshaw, Project Officer
Ana Diaz, Project Officer
Dianne Gove, Director for Projects
Gwladys Guillory, Event and Conference
Coordinator
Owen Miller, Policy Officer
Stefanie Peulen, Finance Officer
Grazia Tomasini, Administrative Assistant
Photo credits
Clinical Trials on Alzheimer’s Disease
conference (CTAD)
Saarland University
European Parliament
European Parliament Research Service
Jalal Shamsazaran (via the Bob and Diane
Fund)
Layout: The Publishing Bureau
2 Dementia in Europe
WELCOME
Welcome
from Charlotte van Corven about the SPAN+ the perspectives of research participants
project, which focuses on empowering peo- and patients, on data sharing, highlighting
ple with dementia. some of their key concerns. Following this,
Alzheimer Europe spoke to six early stage
In the Policy Watch section, we are delighted researchers (ESRs) working on two EU-funded
to have an interview with the Norwegian research projects, to gain a better under-
Minister for Health and Care Services, Bent standing of what drew them to the field of
Høie, who introduces the country’s new dementia research and to ask how COVID
dementia strategy, whilst Secretary Gen- is affecting their work. We then go “Behind
eral for the Norwegian Health Association the Headlines”, with Alzheimer Europe Proj-
(Nasjonalforeningen for folkehelsen), Mina ect Officer Cindy Birck and Tobias Hartmann
Gerhardsen, shares her reflections on this of the European LipiDiDiet project, to exam-
Iva Holmerová, Chairperson
important development. We are then pleased ine the effect of a multinutrient intervention
to present an interview with French Minis- (Souvenaid) on cognitive and functional
It is a great pleasure to introduce the 35th edi- ter for Solidarity and Health, Olivier Véran, decline in early Alzheimer’s disease.
tion of our Dementia in Europe magazine. who outlines the future of dementia policy
As ever, we have endeavoured to fill it with in France, with President of France Alzheimer, The last article in this section is our “Demen-
interesting and useful updates on policy Joël Jaouen, providing his organisation’s per- tia in the Arts” feature in which we speak to
developments in the dementia field, cam- spective. Staying at the national level, Avril Gina Martin, Founder and Executive Direc-
paigns and projects, among others. Easton from The Alzheimer Society of Ireland tor of the Bob and Diane Fund, who shares
discusses the organisation’s campaign in the her motivation for creating this annual pho-
The first section of the magazine looks at lead-up to the Irish budget and shares their tography award for visual storytelling about
some of the key work our organisation has success in securing additional funding for Alzheimer’s and dementia. She also discusses
been involved in, over the past few months. dementia services. the winning project for 2020.
The opening article recaps the European Par-
liament Workshop held online in December. At a European level, Alzheimer Europe pres- To round off this edition of the magazine, we
We then move on to an overview of the suite ents some of the latest developments in EU take a look back at the 30th Alzheimer Europe
of policy and ethics publications that Alz- policy, examining the future budget of the EU Conference (30AEC), which was held virtually
heimer Europe launched in the latter part of and the implications for health and research for the very first time, in October 2020. The
2020. In the following article, we introduce policies. In addition, we summarise the latest event was co-moderated by Kim Coppes from
the new European Working Group of People meeting of the European Group of Govern- Live Online Events and Jean Georges, Execu-
with Dementia (EWGPWD) and meet its mem- mental Experts on Dementia, which met tive Director of Alzheimer Europe. Despite the
bers – we look forward to working with them online in December 2020, to discuss recent unusual circumstances, the conference was a
during their term! dementia policy developments across Europe. great success, with almost 800 participants,
from 42 countries, as well as 260 speakers
Turning to research projects in which Alzhei- The Dementia in Society section opens with and 100 poster presentations. In this section,
mer Europe has been involved, the co-leads a focus on COVID-19, with members of the we revisit some of the key presentations, and
of the European Prevention of Alzheimer’s EWGPWD writing about how the measures to special sessions. We also summarise the sym-
Dementia (EPAD) project, Craig Ritchie control the spread of the virus have affected posia held during the event, including those
and Serge Van der Geyten, reflect on the them. This is followed by an article in which organised by the EWGPWD, and the Neuronet
achievements of the project as it reaches our member associations outline how the and VirtualBrainCloud projects.
its conclusion. We then hear from the leads human rights of people with dementia and
of the recently-finished Patients Active in their carers have been affected during the As we head into 2021, I wish you good health
Research and Dialogues for an Improved pandemic, in their respective countries. and a prosperous and safe new year! Happy
Generation of Medicines (PARADIGM) pro- reading!
ject, Nicola Bedlington and Magda Chlebus. A As part of our work supported by Gates
brief update on the progress of the Neuronet Ventures, Alzheimer Europe Project Offi-
Knowledge Base follows and finally, we hear cer Angela Bradshaw shares insights into
Dementia in Europe 3
ALZHEIMER EUROPE
Alzheimer Europe hosts workshop
focusing on maintaining dementia
as a policy priority during the
COVID-19 pandemic
Alzheimer Europe organised a European Parliament Workshop,
hosted by Sirpa Pietikäinen, MEP, to discuss how people
with dementia had been affected by the pandemic and the
importance of maintaining dementia as a policy and research
priority.
Sirpa Pietikäinen, MEP hosted the online workshop
Alzheimer Europe held an online European symptoms, as a result of some of the meas- dementia, providing online services and
Parliament Workshop on 9 December 2020, ures introduced (e.g. shielding, lockdown helplines as well as accessible resources
examining dementia in the context of the measures etc.). In addition, the negative and guidance, often quickly innovating to
ongoing COVID-19 pandemic. Hosted by impact of losing daily routines and contact find new ways to support individuals, par-
Sirpa Pietikäinen, MEP (Finland), Chairper- with family and friends, was highlighted as ticularly where in-person supports were not
son of the European Alzheimer’s Alliance placing people with dementia at greater risk possible. Furthermore, the negative effects
(EAA), the workshop included presentations for self-neglect and risk, especially where on dementia research were outlined, includ-
from Alzheimer Europe staff and European health and social care interventions had been ing the closure of research laboratories and
Commission representatives, as well as con- curtailed as a result of the pandemic. the cessation or delay of numerous clinical
tributions from EAA Vice-Chairperson Deirdre studies, as well as some early-career research-
Clune (EPP, Ireland) and EAA member Marc Healthcare systems’ response to the ers considering leaving dementia research,
Angel (S&D, Luxembourg). pandemic with concerns that this dementia research
will be deprioritised in favour of infectious
The event was also attended by EU policymak- Angela Bradshaw, Project Officer, Alzheimer diseases research.
ers, representatives from national Alzheimer’s Europe, provided an overview of how health
associations and national health ministries, and social care systems have been stretched Alzheimer Europe launches a new policy
pharmaceutical companies and members of during the pandemic. Examples were pro- report
the European Working Group of People with vided of the extraordinary measures which
Dementia (EWGPWD). countries across the EU have taken in the Owen Miller, Policy Officer, Alzheimer Europe,
extenuating circumstances created by the introduced the Alzheimer Europe policy report,
The impact of COVID-19 on people living pandemic, including the cancellation of sup- “Dementia as a European Priority – a Policy
with dementia ports and services, the use of retired clinical Overview”, which sets out the position of
staff to support increase system capacity, as dementia as a policy priority, primarily at the
Dianne Gove, Director for Projects, Alzheimer well as the adaptation of standard wards into European level. The report outlines some of
Europe, presented information on how the COVID-19 intensive care units. the key developments and initiatives in recent
COVID-19 pandemic has negatively affected years, including actions taken by the Euro-
people with dementia and their commu- It was explained that such approaches have pean Commission, the Council and Parliament
nities, explaining that this population had required additional investments from central (including the Joint Actions on Dementia, dedi-
been some of the most severely affected. governments, which has been examined by cated funding for dementia research etc).
She highlighted the fact that some in some the “Health at a Glance: Europe 2020” report
EU countries, between 20–30% of COVID-19 published by the Organisation for Economic It was explained to attendees that in addi-
deaths have been in people with dementia. Co-operation and Development (OECD) and tion to the recap of previous measures, the
the European Commission. report outlined key recommendations both
It was further explained to attendees that for national and EU level policy and decision
some people with dementia have experi- In addition, many national Alzheimer’s makers, which would form the basis of Alzhei-
enced an increase in feelings of loneliness Associations made considerable efforts mer Europe’s public affairs work in the near
and confusion, as well as a deterioration in to continue their support of people with future, centred around health, social, research
4 Dementia in Europe
ALZHEIMER EUROPE
and human rights policies. These had been 2020. In particular, he highlighted the work
developed in response to the current context undertaken through the Innovative Medi-
at the EU but also as a response to engage- cines Initiative (IMI) partnerships and the
ment with its members at a national level, as Joint Partnership on Neurodegenerative Dis-
well as other stakeholders. eases Research (JPND) for the work funded
to develop new diagnostics, tools and treat-
Key recommendations include the need for ments for dementia.
dementia research to be prioritised in EU
research programmes such as Horizon Europe, A high-level overview of the future Horizon
the need for dementia to be included within Europe research programme was provided,
key EU programmes such as the EU4Health with specific attention drawn to the increased
programmes and the forthcoming green funding for the future which had been made
paper on ageing, as well as the importance available for the programme, as well as
of countries signing and ratifying interna- some of the future opportunities within it Deirdre Clune, MEP spoke of the need to prioritise demen-
tional treaties on rights, such as the United for dementia research. These included the tia at an EU level
Nations Convention on the Rights of Persons dedicated health cluster of pillar 2 of the
with Disabilities (UNCRPD). programme (Global Challenges and European through the current Health Programme,
Industrial Competitiveness), as well as the including the Joint Actions on Dementia, as
The future of dementia policy and research proposed successor to the IMI partnerships well as direct support for the work of Alz-
at an EU level (the European Partnership for Innovative heimer Europe through the Operating Grant.
Health), the details of which have yet to be
Isidro Laso Ballesteros, Cabinet Expert for finalised. It was explained to the attendees that the
Mariya Gabriel (EU Commissioner for Innova- proposed EU4Health programme and the
tion, Research, Culture, Education and Youth) The last speaker, Stefan Schreck, Adviser to substantial increase in the budgetary allo-
spoke about dementia as a priority of the cur- the European Commission Health & Food cation within the Multiannual Financial
rent and future research programmes of the Safety Directorate General, recapped some Framework (MFF) will provide opportunities
EU, highlighting the breadth of dementia of key areas of work that the EU had sup- to strengthen health systems and promote
research that has been funded by Horizon ported in relation to dementia in recent years best practice, providing a route for demen-
tia to be addressed as a priority for the EU.
Additionally, it was highlighted that the pri-
orities of the new programme would reflect
the issues and priorities outlined by Mem-
ber States.
Drawing the workshop to a close, Sirpa Pie-
tikäinen, MEP (Finland) moderated a question
and answer session, during which partici-
pants asked speakers for further details,
particularly in the relation to the future
EU4Health and emphasising that the 95
members of the EAA will continue advocat-
ing for people with dementia and their carers
at EU level.
The next online European Parliament Work-
shop is expected to take place on 23 February
2021, focused on the use of data in dementia
research across Europe.
Marc Angel, MEP welcomed attendees and spoke of the need for cooperation on dementia policy
Dementia in Europe 5
ALZHEIMER EUROPE
Alzheimer Europe publishes
suite of reports on dementia
policy and ethics
Alzheimer Europe has published four reports, examining
issues of dementia policy, practice and ethics, at a national
and European level.
Despite the COVID-19 pandemic, Alzheimer Europe continued working throughout 2020 to generate knowledge and evidence to inform policy
and decision-makers, identifying the key areas which must be addressed to improve the lives of people living with dementia. In 2020 Alzhei-
mer Europe launched four reports examining dementia policy, practice and ethical issues at a national and European level.
Intercultural dementia care for health and social care providers: a guide
Following on from its 2018 report on “The care services by people from minority ethnic
development of intercultural care and support communities remains low.
for people with dementia from minority eth-
nic groups”, Alzheimer Europe has responded Within the new guide, a number of recom-
to this challenge by developing, with a group mendations are made, including encouraging Intercultural
of experts, a guide to support health and
social care workers to provide intercultural
health and social care workers: dementia care
A guide to raise awareness amongst
dementia care and a policy briefing contain- y To provide people from different ethnic health and social care workers
ing guidelines for policy makers. communities with culturally appropri-
ate and understandable information
The key principle underpinning this work is about dementia and existing services
that every person with dementia should be and support
aware of, and have access to, culturally appro- y To make sure that people understand that
priate dementia care. It is reiterated within dementia is a medical condition and that
the guide that health and social care work- health and social care systems in Europe
ers must recognise that every person with offer support and care to people with
dementia is unique; although people with dementia and their families
dementia may share some characteristics y To explore the kind of support or services
with other people from a particular ethnic that would be helpful, adapt existing
group, it is essential to recognise the indi- supports if necessary and develop new
viduality of every person. innovative approaches that reflect the
needs and wishes of people from differ-
The number of people with dementia from ent ethnic communities The full report can be accessed at: https://bit.
minority ethnic groups is increasing, partially y To develop cultural awareness, sensitivity ly/AEInterculturalCareGuideOnline
as a result of migrant populations in Europe and competence through an ongoing pro-
ageing and some ethnic groups being a cess of learning and exchange between
higher risk of developing dementia. Although and amongst health and social care
many symptoms of dementia can be man- workers and people from minority eth-
aged with good care, the uptake of dementia nic group.
6 Dementia in Europe
ALZHEIMER EUROPE
Dementia as a European Priority – A policy overview
In December, Alzheimer Europe launched people living with dementia continue to
its report “Dementia as a European Prior- face a number of challenges. These chal-
ity – A policy overview” which takes stock of
dementia policy at an EU level and sets out
lenges, which concern wider society too,
include the increase in the number of people
Dementia as
recommendations for future priorities across living with dementia (estimated to double a European
Europe. by 2050) and the societal and economic cost
of dementia.
Priority
As the European Union moves towards A policy overview
implementation of the EU4Health and Hori- As a result, the report sets out a number 2020
zon Europe programmes, Alzheimer Europe of recommendations for the EU, outlining
reflects on the place of dementia as a polit- specific areas in which dementia should
ical priority in Europe in recent years. This be prioritised across international, health,
includes the different ways in which demen- research and social policy, including:
tia policy and research have been supported
by the three institutions of the EU, as well as y Prioritising dementia research in EU
some of the high-profile coordination and Research Programmes (including Hori-
research projects which have been made pos- zon Europe), providing a fair allocation
sible as a result of EU funding. of resources and funding for existing
programmes and better coordination
In the report, Alzheimer Europe also highlights between programmes
some of its key activities in campaigning for y Prioritising dementia within policies relat-
change, as well as the work it has coordinated ing to chronic diseases, mental health and
and participated in, along with its national ageing, both at an EU and national level
member associations, to raise the profile of the y Supporting Member States to work The full report can be accessed at: https://bit.
condition and build an evidence base to make towards the implementation of the World ly/DementiaEUPolicyOverview2020-online
the case for the prioritisation of dementia. Health Organization’s Global Action Plan
on Dementia 2017–2025
Despite the progress made and the knowl- y Recognising dementia as a disability and
edge generated, the report highlights that including dementia in disability policies.
Ethics report on legal capacity
In its most recent ethics report, Alzheimer their personal relationships with other people
Europe1 explores some of the ethical issues and their standing in the community. Legal
linked to legal capacity and decision making. capacity is therefore a legal concept but it is
Legislation and guidelines contribute towards not just a legal matter. Legal capacity and
but do not guarantee ethical behaviour. They decision-making capacity are interrelated and
do not protect everyone’s rights or ensure have social and ethical implications.
that everyone has the same opportunities. Legal capacity and
Any loss of the right to make decisions can This is why it is important to reflect on eth- decision making:
The ethical implications
have a considerable impact on people’s lives ical issues directly or indirectly linked to
of lack of legal capacity
and wellbeing. the concept of legal capacity. This includes on the lives of people
respect for human rights, which means rec- with dementia
Being formally and publicly declared as hav- ognising and protecting the dignity of all
ing no or limited legal capacity may have a human beings, and ensuring that everyone
devastating psychological, emotional and is entitled to active, free and meaningful par-
practical impact. For some people, it is expe- ticipation in, contribution to, and enjoyment
rienced as an affront to their dignity, affecting of civil, political, economic, social and cultural
The report entitled “Legal capacity and decision making: The ethical implications of lack of legal capacity
1 Authors: Dianne Gove, Carmel Geoghegan, Jean Georges, Alistair Neimeijer, Jim Pearson, Catherine Quinn, on the lives of people with dementia” received funding under an operating grant from the European
Union’s Health Programme (2014–2020).
Sebastian Ritzi, Helen Rochford-Brennan, Matthé Scholten and Maria do Rosário Zincke dos Reis.
Dementia in Europe 7
ALZHEIMER EUROPE
development. The report contains a detailed y Voting, marriage and civil partnerships, this report will be successful in raising aware-
discussion and recommendations for each of and making a will. ness about the many issues related to legal
the following topics: capacity and decision making in the context
Members of society need to work together to of dementia and thereby contribute towards
y Guardianship remove obstacles, whether they be legal or improving the lives and wellbeing of people
y Treatment, care and support based on mentalities, traditions or taken-for- with dementia.
y Communication of the diagnosis granted, limiting assumptions. This is a task
y Advanced care planning and advance for everyone not just for lawmakers, policy The full report will be available in March 2021,
directives makers, health and social care professionals on the Alzheimer Europe website: https://
y Participation in research and notaries. Not everyone has the power to www.alzheimer-europe.org/Publications/
y Coercive measures bring about change directly, but everyone has Alzheimer-Europe-Reports
y Restrictions of freedom and the use of the power to raise issues and challenge prac-
restraint during the COVID-19 pandemic tices, procedures and attitudes. We hope that
Dementia Monitor 2020
In 2017, Alzheimer Europe published its first current situation, but also to understand how
Dementia Monitor report, providing a bench- the situation has evolved over recent years.
mark and indicators for the current state of
dementia policy across the EU and countries For the majority of services (that we enquired
in which we have member associations, in about), there has been an increase in the European Dementia Monitor 2020
relation to the following areas: number of countries reporting that they are Comparing and benchmarking
sufficiently available, however, a majority of national dementia
strategies and policies
y Care aspects countries continues to report that most ser-
— Availability of care services vices are insufficiently available or absent.
— Affordability of care services In relation to the funding of services, the
y Medical and research aspects majority of services continue to be funded
— Treatment-reimbursement of AD (at least in part) in the majority of coun-
medicines tries, with the majority of services showed
— Availability of clinical trials an increase in the number of countries pro-
— Involvement of country in European viding some level of funding.
dementia research initiatives
y Policy issues In relation to policy, 27 countries have a
— Recognition of dementia as a priority national dementia strategy (with Flanders hav-
— Dementia friendly communities/ ing its own strategy, and separate strategies for
inclusiveness England and Scotland in the United Kingdom),
y Human rights and legal aspects compared with 21 countries in 2017, however,
— Recognition of legal rights fewer than 50% of countries reported that
— Ratification of International and Euro- funding had been put in place to implement
pean human rights treaties the strategies or had a dedicated lead person 2019, almost 50% countries were unable to
— Carer and employment support. within the government to lead the response. take part in a clinical trial related to dementia.
Alzheimer Europe repeated the exercise across An increasing number of countries are taking The full report will be available in March 2021,
2019 and 2020, gathering information with part in European coordinated programmes on the Alzheimer Europe website: https://
the support of our members, allowing not – on 2019 there were 29 countries involved www.alzheimer-europe.org/Publications/
only for the creation of a snapshot of the in the funding call, however, at the close of Alzheimer-Europe-Reports
8 Dementia in Europe
ALZHEIMER EUROPE
European Working Group of People Alzheimer Europe duly reflect the priorities
and views of people with dementia. They
with Dementia begins fifth term also consult on EU-funded research pro-
jects. The group operates independently
of office and members elect their own Chairperson
and Vice-Chairpersons. The Chairperson is
also an ex-officio member on the Board of
The European Working Group of People with Dementia began Alzheimer Europe, with full voting rights.
its fifth two-year term of office at an online meeting on 23 During the group’s first four terms of office
October 2020 and welcomed four new members. (2012–2014, 2014–2016, 2016–2018, 2018–2020),
members have actively participated in Alz-
heimer Europe’s annual conferences and
Members: Idalina Aguiar, Portugal; Stefan contributed to research conducted by external
Eriksson, Sweden; Tomaž Gržinič, Slove- organisations on topics such as: meaningful
nia; Nigel Hullah, UK – England, Wales and outcome measures; social health; people with
Northern Ireland (new); Petri Lampinen, Fin- dementia as peer-researchers, palliative care
land; Margaret McCallion UK – Scotland and data sharing as research participants and
(new); Danny McDonald, UK – Scotland in the context of Public Involvement; helped
(new); Erla Jόnsdόttir, Iceland (new); Angela develop recommendations on dementia-
The European Working Group of People with Pototschnigg, Austria; Helen Rochford-Bren- inclusive initiatives and contributed towards
Dementia (EWGPWD) for 2020–2022 is com- nan, Ireland; Geert Van Laer, Belgium. Alzheimer Europe’s work on various ethical
posed of the following 14 members: issues. They have also attended a number
The group was launched by Alzheimer Europe of international dementia-related events,
Chairperson: Chris Roberts (UK – England, and its member associations in 2012 and is including at the European Parliament, as rep-
Wales and Northern Ireland) composed entirely of people with dementia resentatives of the group.
who are nominated by their national Alz-
Vice-Chairpersons: Bernd Heise (Germany), heimer associations. They work to ensure For more information about the group, visit:
Kevin Quaid (Ireland, new) that the activities, projects and meetings of https://www.bit.ly/EWGPWD
The members
Idalina Aguiar A bit about me: I am from a small island Bernd Heise (Vice-Chairperson)
Country: Portugal called Kalvsund, just outside Gothenburg. I Country: Germany
Diagnosis (type and year): Alz- spent many years working on power plants Diagnosis (type and year): Alz-
heimer’s dementia, 2012 around the world, mostly in the US, Sweden heimer’s dementia, 2016
Joined the group: 2016 and Africa. I have always been active in sports Joined the group: 2018
A bit about me: I was born in 1940, in Madeira. and I still like to go to the gym. Since being A bit about me: I am married and live in
My work gave me the opportunity to travel, diagnosed, I have also started doing garden- Munich with my wife. For 34 years, I worked
which I enjoy. I also like to sing, dance, play ing and enjoying more time outdoors. as a development engineer of semiconduc-
cards, do crosswords, read and garden. My tor devices in the telecommunications
daughter (and carer) Nélida and I believe that Tomaž Gržinič industry, until my diagnosis. I am also a
a balance between drugs and complemen- Country: Slovenia member of the Advisory Board of People Liv-
tary therapies is ideal in dementia, so I do a Diagnosis (type and year): Alz- ing with Dementia, founded by the German
variety of different therapies. We also work heimer’s dementia, 2016 Alzheimer association (Deutsche Alzheimer
to combat stigma, and fight for the rights of Joined the group: 2017 Gesellschaft). My favourite hobbies are gar-
informal carers in Portugal. A bit about me: I was born in Ljubljana in 1952 dening and computer technology.
and spent most of my career at a well-known
Stefan Eriksson Slovenian graphic design company. I am very Nigel Hullah
Country: Sweden active, with a special interest in sailing, and Country: United Kingdom
Diagnosis (type and year): Alz- in the summer, I go on sailing holidays with a (Wales)
heimer’s dementia, 2017 close group of friends. Support from my clos- Diagnosis (type and year):
Joined the group: 2018 est family and friends plays a major role in my Early-onset dementia, 2012
everyday life. Joined the group: 2020 (new member)
Dementia in Europe 9
ALZHEIMER EUROPE
A bit about me: I have a lot of experience and, as a family, we enjoy taking part in quiz Kevin Quaid (Vice-Chairperson)
of working with groups at a regional and nights. Country: Ireland
national level. I have gained exposure to the Diagnosis (type and year):
development of services and helping with Erla Jόnsdόttir Lewy body dementia, 2017
innovation of strategies. I have supported Country: Iceland Joined the group: 2020 (new member)
the rights of all disabled people (including Diagnosis (type): Alzheimer’s A bit about me: I am a Limerick native, but
those with a dementia diagnosis) for equita- dementia, 2020 now live in Cork with my wife, Helena. I have
ble services, the fulfilment of statutory and Joined the group: 2020 (new member) three children, three stepchildren and five
civil rights and the promotion of their pref- A bit about me: I am from Reykjavík, Iceland grandchildren. As well as a family man I am
erences and a right to be heard. but currently live in Garðabær. My husband an adventurer and love to travel. I am also an
Emil and I have two daughters and four avid GAA (Gaelic football) fan. Community
Petri Lampinen grandchildren. After my diagnosis at the age is important to me and I started a Memory
Country: Finland of 63, I immediately joined the Alzheimer Café in Kanturk, where I live, to support oth-
Diagnosis (type and year): Society of Iceland and began participating ers like me, in my area. I have written a book
Frontotemporal dementia, 2015 in the active work of the Icelandic dementia called “Lewy Body Dementia Survival and Me”
Joined the group: 2017 working group, called “Frumkvöðlar” (Pio- and am one of the first people in the world to
A bit about me: I refuse to let the difficulties neers), a group of active individuals whose write a book about Lewy body dementia (LBD)
associated with my dementia defeat me, and purpose is to share knowledge and under- from the patient’s point of view. I am currently
in spite of them, I continue to live an active standing of Alzheimer’s disease, both among working on my second book on how to live a
life, working in my garden, cycling and play- group members and to the general public. productive life after a diagnosis. I also write for
ing ping-pong and badminton. Being open a local newspaper and I never knew that I had a
about my condition and remaining as calm I have a BA in Economics from the Univer- love for writing until I was diagnosed with LBD!
as possible in any situation helps me navi- sity of Iceland and an MSc in International
gate life with dementia, with the support of Marketing and Development Studies, from Chris Roberts (Chairperson)
others when needed. Copenhagen Business School. My work expe- Country: United Kingdom
rience is broad in the private and public sector (Wales)
Margaret McCallion and I served as a member of the town council Diagnosis (type and year):
Country: United Kingdom in Garðabær for 12 years. For two years I was a Mixed dementia (Alzheimer’s
(Scotland) board member of UNIFEM (the United Nations and vascular), 2012
Diagnosis (type and year): Development Fund for Women). Joined the group: 2016
Young-onset frontotemporal dementia, 2016 A bit about me: I spend most of my time
Joined the group: 2020 (new member) Angela Pototschnigg raising awareness of dementia, to dispel the
A bit about me: I live in Glasgow and am a Country: Austria associated stigma. To promote the develop-
member of the Scottish Dementia Working Diagnosis (type): Alzheimer’s ment and continuation of better services and
Group (SDWG) as well as the EWGPWD. My dementia, 2020 support, I campaign to uphold the rights of all
diagnosis was a shock and my consultant Joined the group: 2018 affected by dementia. When I speak at events
suggested I go to a new resource centre. I A bit about me: I have been living with cog- either in Wales, the UK, or Europe, I am usu-
had reservations about it, but was pleasantly nitive impairments for 6 years. The path to ally accompanied by my wife, Jayne Goodrick.
surprised at the warm welcome I received a valid diagnosis took a long time: At first,
and the support. I am thankful I keep good burnout was wrongly diagnosed. Helen Rochford-Brennan
health and have great support from my fam- Country: Ireland
ily, friends, religion and Alzheimer Scotland! I am an ambassador for inclusion and the Diagnosis (type and year): Alz-
rights of people with dementia. I hold peer- heimer’s dementia, 2012
Danny McDonald talks twice a month, organised and supported Joined the group: 2014
Country: United Kingdom by Alzheimer Austria, aiming to reach others A bit about me: I was Vice-
(Scotland) who are worried about their memory or have Chairperson of the EWGPWD for two years
Diagnosis (type and year): Vas- received a diagnosis of dementia and want to (2014–2016) and Chairperson for four (2016–
cular dementia, 2016 talk. I also represent people with dementia on 2020), stepping down in October 2020, but
Joined the group: 2020 (new member) committees working on the Austrian Demen- am delighted to stay on in the group. I use
A bit about me: I live in Clydebank, just out- tia Strategy and the upcoming care reform; my time with the working group to raise
side Glasgow, Scotland. I am married with give talks to carers, in dementia-friendly com- awareness of dementia and raise the profile
two grown up children. Since my diagnosis, munities, ; and I engage in various projects of human rights for people with dementia.
my family and I have learned that it is possi- that focus on participation of and informa- Previously, I spent many years working in
ble to live well with dementia. I am involved tion about people living with dementia. These the tourism and disability sectors and was
in many activities from day centre to choir activities help to give my life meaning. involved in community activism.
10 Dementia in EuropeALZHEIMER EUROPE
Geert Van Laer Joined the group: 2018 telecom software engineer, spending a long
Country: Belgium A bit about me: I was born in a small vil- time in Norway, Germany, Israel and China
Diagnosis (type and year): lage called Merksplas in Belgium. My father for my job. I worked with people from all
Mixed dementia (Alzheimer’s was a dairy farmer but I chose to study digi- over the world.
and Frontotemporal dementia), 2017 tal technology and worked for 30 years as a
Why is the group important?
Chris Roberts, Chairperson scale of people who actually have LBD is soBefore I joined the EWGPWD, I learned a
I joined the Working underestimated and I want to change that. lot about dementia at the Alzheimer’s
Group back in 2016, association in Munich and I later became
after first hearing My priorities are quite simple: I want the a member of the advisory group of the
about its formation at a rights of people listened to and under- Deutsche Alzheimer Gesellschaft (German
dementia conference in stood, and to make sure nothing happens Alzheimer’s association). There, I was asked
Scotland. I thought it or no decision is made about us unless whether I would like to support the EWG-
was a great platform and group to bring our we are included in both the question and PWD, which I gladly accepted.
countries together, for collaboration and to the answer. More needs to be done to find
give an international voice to those affected a cure for dementia, and more needs to I see my task in the EWGPWD as giving
by dementia. I joined as Vice-Chairperson for be done to ensure that people who have people with dementia a voice, and ensur-
two terms and now as Chairperson. dementia are given a proper diagnosis. The ing that various areas of help and support
stigma needs to be, once and for all, com- are developed. There is an urgent need to
My priorities are: to give a voice to others pletely taken out of the equation when educate people about the problems and
who aren’t heard; to help support other talking about dementia. concerns of people with dementia.
countries to develop their own groups; to
assist with vital research; and to promote Working groups are of vital importance I hope to be able to pass on my knowledge
rights and better services for all, while I can.
in each and every country and it is of and experience regarding Alzheimer’s, in
I really enjoy working with and assisting even more importance that we have our the group and beyond. I also see a specific
researchers, on all the various projects they European working group, to look at how task for myself: to push technical supports
are working on, for us. It’s nice to be part ofdifferent countries deal with dementia for people with dementia, because of my
something that is actually making changes, and the different advancements that each professional background and my great
and being like a family in the group. country makes. These can then be shared. interest in this topic. My goal is that these
One glaring example is how some coun- technical supports will enable people with
How can any country or organisation really tries can offer DaTscan and other countries dementia to live independently, for longer.
produce what people affected by demen- don’t’. This is a brain scan which can iden- The University of Munich and the Munich
tia need, without speaking to and hearing tify whether a person has LBD or not. Alzheimer’s association have started a pro-
from those with the lived experience, the ject to create technical systems for people
very people who are experts by their own Bernd Heise, Vice-Chairperson with dementia, based on an assistive voice
experience? This is why working groups are There are many reasons computer.
important. These collaborations will then for my commitment to
support, promote and produce better ser- people with demen- As a person who has always been in con-
vices, research, and care. They will also help tia: I first encountered tact with other people and has stood up
us and our families to live better lives. dementia about 20 for others, I am convinced that exchanging
years ago, in the com- ideas with one another and thinking out-
Kevin Quaid, Vice-Chairperson pany where I worked. side our borders is very, very important in
I joined the EWGPWD I met an employee who had significant order to develop new ideas. I see a chance
because it gives me memory problems. He had to leave the to do just that, in the EWGPWD. We have
a chance to represent company within a few weeks. Before that the opportunity to bring together national
my country on a Euro- experience, I didn’t even know that demen- strategies for people with dementia, to lis-
pean stage and to give tia could affect younger people also. Now, ten to and learn from each other. In the
a voice to people with I have dementia myself in the early stages EWGPWD, I see the chance to actively do
dementia, but especially to give people with and would like to stand up for people who something for people across Europe who
LBD a voice, because I still think that the are in a similar situation to me. have dementia.
Dementia in Europe 11ALZHEIMER EUROPE
EPAD: Global efforts and Alzheimer’s disease process over time, iden-
tifying important biomarkers which can be
cooperation to advance research used to inform management of patients and
new targets for drug development and help
in Alzheimer’s disease and prevent improve recruitment/selection into clinical
trials for Alzheimer’s disease in Europe and
dementia
worldwide.
EPAD has also created a platform trial struc-
ture that allows multiple arms to enter a
As the European Prevention of Alzheimer’s Dementia (EPAD) single trial platform located in the EU to allow
project draws to a close, Alzheimer Europe looks back at the more efficient development. Although the
innovative project and speaks to its co-leads, Craig Ritchie and Proof of Concept (PoC) platform was set-up
and a process for initiating each appendix
Serge Van der Geyten, about their reflections on the project. was developed, the PoC trial was not initi-
ated. This platform will remain accessible. The
EPAD work and the input of each EPAD work
There is now compelling evidence that Alzhei- Europe. EPAD was funded by the Innovative package throughout the project has resulted
mer’s disease takes hold in the brain decades Medicines Initiative (IMI) in conjunction in significant outcomes and contributions to
before dementia symptoms appear, provid- with 39 partner organisations for a period the scientific community.
ing a window of opportunity for preventative of 5.5 years, until 30 October 2020, aiming
intervention. As a result, today’s research to improve the understanding of the early The EPAD Longitudinal Cohort Study
increasingly focuses on this pre-symptomatic stages of Alzheimer’s disease and deliver new
phase, with the aim of delaying or prevent- preventative treatments. EPAD has created the first single, pan-European
ing dementia. register of over half a million people across the
While one objective was to undertake a risk spectrum for dementia. From this regis-
An innovative project multi-arm Phase II adaptive clinical trial for ter, research participants were invited to join
the secondary prevention of Alzheimer’s an EPAD cohort of at-risk subjects: the EPAD
The European Prevention of Alzheimer’s dementia, many other values and assets Longitudinal Cohort Study (LCS).
Dementia (EPAD) consortium is an inter- arose during the course of the project. The
disciplinary research programme spanning disease modelling work performed by the A key achievement of the EPAD project
public and private sector organisations across team will improve the understanding of the was the establishment of the LCS that has
EPAD consortium, general assembly meeting, Geneva, May 2019
12 Dementia in EuropeALZHEIMER EUROPE
screened over 2,000 participants across 30 been released and the last one includes all The way forward
European study centres and collected a wide complete data up to the date the study was
range of cognitive, clinical, neuroimaging and closed. Moreover, a very large BioBank is The Alzheimer’s Disease Data Initiative (ADDI)
biomarker data to help further our under- available for sample access. The EPAD Biore- aims to move Alzheimer’s disease innovation
standing of the early stages of Alzheimer’s source consists of over 100,000 samples further and faster by connecting researchers
disease. Screening into the LCS was stopped consisting of blood, CSF, saliva and urine with the data they need to generate insights
on 29 February 2020 and a total of 2,096 par- that were collected annually from research to inform development of new, better treat-
ticipants had been screened. Although the participants throughout their participation ments and diagnostic tools for Alzheimer’s
LCS is no longer following up participants, in the LCS. disease and related dementias. ADDI has
it provides an ongoing legacy through open recently launched its Alzheimer’s disease
access to data and a vast range of possibili- The current EPAD database, provided by Ari- Workbench, a cloud-based platform for scien-
ties for sample access. dhia, is open-access, ensuring the use of the tists to accelerate discoveries and innovations
data to the Alzheimer’s disease research com- for Alzheimer’s disease and related demen-
Open-access data sets munity worldwide. Data access is free to all tias. ADDI is supporting the EPAD project
researchers. Further details on the available and EPAD datasets will be findable via its
The EPAD LCS Research Access Process (ERAP) data and samples for researchers and the pro- workbench to provide even greater value to
was set up and designed to give academic cess for accessing them can be found on the the global neuroscience research commu-
researchers, institutions and companies EPAD website. The EPAD consortium is pleased nity. Bringing the EPAD data and the EPAD
from all over the world a simple and quick that even with the LCS finished, it continues researcher community together through ADDI
way to access the data collected during the to be an important resource which generates will ensure the longevity and the value of the
LCS. Four versions of the LCS database have new data for research. EPAD project.
A few words from the project leaders
Alzheimer Europe, a partner in the EPAD to maintain this dataset and make sure that
project, asked representatives of the two we could continue to allow free access to it.
organisations co-leading the project, Craig
Ritchie (University of Edinburgh) and Serge Secondly, EPAD planned to study new drugs in
Van der Geyten (Janssen Pharmaceutica NV) a well-designed Phase II proof of concept trial.
to share their thoughts regarding various The EPAD platform was developed to speed
aspects of the project. They worked together up the development of effective, safe medi-
to send joint answers to our questions. cines which slow or prevent the development
of Alzheimer’s dementia. It is a pity we never
EPAD aimed to improve the understanding had a drug to be able to start the EPAD proof
of the early stages of Alzheimer’s disease of concept study. However, pharmaceutical
and streamline the testing and develop- companies have learned a lot from stepping
ment of preventative treatments. How well into this collaboration. We still think that a
do you think these key aims were met? platform trial such as the one we tried to set
up is the future if we want to accelerate drug
EPAD aimed first to recruit and deeply pheno- development.
type potential clinical trial participants across
Europe. This was clearly achieved by the estab- Can you share some of the insights that may Craig Ritchie
lishment of the Longitudinal Cohort Study have emerged during the project?
and by collecting what is an incredible data-
set, open access and publicly available to the One thing that really characterises EPAD is platform trials and we may be asked to come
research community. This dataset is going to be the incredibly large consortium that was well back in and share our experience, so that the
continually enriched with genomic, proteomic funded with lots of partners and members field will still benefit massively. Although, we
and imaging data among others. There is an within each of those partnerships contrib- never got a drug across the line, the knowl-
incredible excitement about what is going to uting and believing in what we were doing. edge and learnings we gained about what to
come out of the high quality and large dataset do and what not to do are incredibly impor-
that we developed through the EPAD Longitu- Another insight that we regained is still ongo- tant to inform the next steps and there will
dinal Cohort Study. EPAD secured some funds ing. Some projects globally are still looking at be a next stage.
Dementia in Europe 13ALZHEIMER EUROPE
What were the main obstacles encountered How do you think the outcomes of the EPAD
in this global work? project can contribute to the future of Alz-
heimer’s disease research?
EPAD was an interdisciplinary research
initiative combining expertise from 39 Euro- The most obvious one is the incredibly rich
pean organisations. Although EPAD was an data source compiling both data and sam-
EU funded research project, Alzheimer’s ples that have been collected annually from
research is a global endeavour that needs research participants throughout their partici-
to be globally addressed, not just at a Euro- pation in the Longitudinal Cohort Study. EPAD
pean level. The field, in terms of new drugs has made this database open access and that
available for patients, hasn’t moved much is going to serve the scientific community for
further since we started the project several years to come. We set up the benchmark for
years ago. The main lesson there and going how we allow data to be accessed in the future,
forward is that the EPAD proof of concept that will be of huge value going forward.
study was maybe a bit too ambitious in the
beginning. However, we are confident that a We already saw explicit references to the
platform like this will be set up again in the EPAD project on how we did our work and
not too distant future and we believe that how to make use of the data generated. The Serge Van der Geyten
pharmaceutical companies will support it. EPAD set up has been and is being used as a
One crucial factor for the success of such a template by other projects looking at estab- with Alzheimer’s disease and has devoted
future platform will be the availability of reg- lishing a trial platform framework, which is much of their lives to finding a treatment
ulatory accepted intermediate phenotypes, quite amazing. We started the project with for this terrible disease. Moreover, it was a
as having to rely solely on a cognitive end- a relatively small group of enthusiasts and great experience to interact, collaborate and
point for trial success leads to too long and ended up with over 400 people working on spend time with our research participants.
too costly clinical trials. the project including senior academics, sen- In EPAD, research participants were at the
ior company executives as well as a very heart of the project. We were committed to
Some obstacles weren’t necessarily scien- wide range of early career researchers. With involving them as much as possible in the
tific or operational, they were more to do the collaboration of a very diverse group of development of the project, empowering eve-
with working within a particular framework. experts, we built something strong and we ryone to play an active role in our progress.
With all the energy and the ideas we had, imagine that all contributors enjoyed the way
we were disappointed when the legal struc- we worked together as much as we did. We
tures and governance around us were not want to work like that in the future with this
as flexible and as innovative as we were. It incredibly open collaboration.
is something, however, which began mov-
ing forward but timelines eventually worked Finally, could you share one or two personal
against us. If people are going to embark highlights from the past years?
on projects of this scale, they need to make
sure that all stakeholders are fully on board The main highlight was having the incredible http://www.ep-ad.org
and are willing to make adaptations to their privilege of being part of such a wonderful @IMI_EPAD
way of working. community that really cares about people
Acknowledgement
The EPAD project has received support from the Innovative Medicines Initiative Joint Undertaking under grant agreement n° 115736, resources
of which are composed of financial contribution from the European Union’s Seventh Framework Programme (FP7/2007–2013) and EFPIA com-
panies’ in kind contribution.
14 Dementia in EuropeALZHEIMER EUROPE
PARADIGM: Making patient involvement took part in the project: European
Patients’ Forum, European AIDS Treatment
engagement in the development Group, Rare Diseases Europe, Sant Joan de Déu
Research Foundation and Alzheimer Europe.
of medicines a reality Sant Joan de Déu Research Foundation and
Alzheimer Europe brought to the project the
perspective of young patients and of people
Patients ought to be more involved in the process of developing living with dementia, respectively. This helped
to raise awareness of the value of involving
medicines. Putting this seemingly simple principle into people with dementia and young patients in
practice, however, is far from easy. The goal of the IMI-funded patient engagement activities and helped to
ensure that their specific needs are taken into
PARADIGM project (2018–2020) was to develop a framework account, as well as the support that should be
which could enable effective, meaningful and sustainable in place to enable their involvement.
patient engagement. Within the whole process of developing med-
icines, the project particularly focused on
three points of this process:
PARADIGM – Patients Active in Research and With this in mind, PARADIGM aimed to
Dialogues for an Improved Generation of develop a framework which could enable y research and priority setting
Medicines – a European project funded by the effective, meaningful and sustainable patient y design of clinical trials
Innovative Medicines Initiative (IMI), kicked engagement (PE) in the development of y early dialogues with regulators and HTA
off in March 2018 and came to a close at the medicines and demonstrate the “return on bodies.
end of November 2020. Alzheimer Europe was engagement” for all stakeholders.
a partner, involved in all work packages of Main outcomes of the project
this project. The project received funding from the IMI and
was co-led by the European Patients’ Forum The project was designed sequentially, with
About PARADIGM (EPF) and the European Federation of Pharma- each step informing and guiding the next
ceutical Industries and Associations (EFPIA). It one. The main activities and outcomes of
There is growing recognition that patients involved 34 partners representing the different the project included:
can and should be more involved in the pro- stakeholders typically involved in medicines
cess of developing medicines. However, many development (e.g. patient organisations, Online survey
stakeholders still have questions on how to pharmaceutical companies, academia, HTA
put this principle into practice – who should bodies and regulators, etc.). Five patient organ- The survey aimed to identify the needs and
be involved, how, and when? isations with different experiences in patient expectations, of the different stakeholders, for
European Working Group of People with Dementia at PARADIGM project consultation
Dementia in Europe 15You can also read
