SPECIAL REPORT | 2 - 8 November 2016

IS EUROPE
READY FOR WHO: “The impact of dementia on caregivers, family and societies can be physical,

ALZHEIMER’S?
psychological, social and economic.” [Neil Moralee / Flickr]

(ADI), the total estimated cost of

Rising dementia dementia in 2015 was €750 billion and
projections forecast that it could reach
Contents numbers in EU €1.83 trillion by 2018.

Rising dementia numbers in EU causes alarm... 1

causes alarm Dementia in the EU
Alzheimer Europe chief:
Holistic approach needed to tackle dementia... 3 The European Union is stepping up In 2015, the number of people
efforts to combat dementia, but is with dementia was approximately 10.5
Denmark aims to become
being urged to do more, as 18.7 million in Europe. The projections are
‘dementia-friendly nation’ by 2025...................... 5
million EU citizens are expected to alarming, as the number of affected
Study: Dementia healthcare suffer from the illness by 2050. people is predicted to increase to 13.4
services need to be redesigned........................... 6 million by 2030 and to 18.7 million by
The World Health Organisation 2050.
People with dementia:
(WHO) says dementia develops slowly According to the European
‘We can still contribute to this society’................ 8
and is caused by a variety of diseases Commission, the most common
and injuries that affect the brain, such causes of dementia in the EU is
as Alzheimer’s disease, and strokes. Alzheimer’s disease (about 50-70%
Alzheimer’s is a type of dementia of cases) and the successive strokes
that causes problems with memory, which lead to multi-infarct dementia
thinking and behaviour. Symptoms (about 30%). Other causes are Pick’s
usually develop slowly and get worse disease, Binswanger’s diseases, Lewy-
over time, becoming severe enough to Body dementia, and others.
hamper individuals from performing Member states are responsible for
everyday activities. However, the organisation and delivery of health
consciousness is not affected. services, including care for dementia.
Practically, patients with dementia In December 2015, the EU Council of
have an increased level of dependency. Ministers adopted a policy framework
“The impact of dementia on to help people living with dementia by
caregivers, family and societies can improving care policies and practices.
be physical, psychological, social and Several member states have
economic,” the WHO notes. already adopted a national strategy to
Policymakers emphasise there address the situation.
is often a lack of awareness and In an interview with EurActiv.com,
With the support of understanding of dementia, resulting the Director of Alzheimer Europe, Jean
in stigmatisation and barriers to Georges, stressed that the number
diagnosis and care. They are calling of countries with such plans in place
for global action. has continued to grow. There are
Another aspect of dementia is its now dementia or neurodegenerative
http://www.euractiv.com/section/health- high cost. According to a 2015 report
consumers/special_report/is-europe-ready- by Alzheimer’s Disease International Continued on Page 2
for-alzheimers/
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Continued from Page 1

under the EU research programs. solutions could be effective.
disease strategies in place in Austria, “The Commission further supports I-Support is an e-programme that
Belgium, Cyprus, Czech Republic, the European Innovation Partnership the WHO is currently developing with
Denmark, Greece, Ireland, Italy, on Active and Healthy Ageing, which the goal of supporting family members
Luxembourg, Malta, the Netherlands, is facilitating the exchange of good and friends taking care of people living
Norway, Slovenia, Spain, Switzerland practices in prevention of frailty, with dementia.
and the UK (with separate strategies for integration of care and age-friendly Available via personal computers,
England, Northern Ireland and Scotland). environments, areas which highlight tablets and smartphones, iSupport
However, there is still much to do the importance of early diagnosis and offers a training program through
to fully implement plans, and in many screening for physical and cognitive which caregivers learn about the basics
countries, to put a plan in place, analysts decline, coordination of health and of dementia, how to take on their role,
explain. social care and support to patients and how to cope with the emotional stress
carers,” Brivio said. associated with caregiving, and the
EU Commission action plan importance of self-care.
Nurses: Commission is out of Special attention is also paid to
European Commission spokesman touch challenging behaviours associated
Enrico Brivio told EurActiv.com that in with dementia, such as aggression,
recent years dementia has become a Contacted by EurActiv, the European depression, and wandering.
priority for more and more member Federation of Nurses Associations (ENF)
states. said the Commission’s planned joint
There is a huge investment in action with member states on dementia
research on dementia and other excluded stakeholders like the ENF.
neurodegenerative diseases under the “They miss out 3 million nurses,”
EU research programs, he said. said Paul De Raeve, the EFN’s general
“The interest of the topic for secretary. “Iit is high time the European
member states is also manifested during Commission respects frontline actors,
the Presidency of the Council of the dealing every day with dementia.”
European Union,” the official stressed, According to De Raeve, EU
adding that the Commission works politicians write policies but they have
closely with the member states through never seen or taken care of a dementia
the Group of Governmental experts on patient in real life. This is visible in EU
Dementias. Council recommendations, which he
“The support for the implementation said includes empty sentences and
of the Council conclusions will be contains no concrete actions to take
discussed in cooperation with the account of the experience of frontline
member states,” he stated. people working and caring for dementia
The executive also supports work patients.
to address dementia by supporting “Look at Horizon2020. Millions are
member states via the EU Health spent on dementia, nothing changes in
Programme. daily practice. What about implementing
Following the completion of the first the research findings?” he asked.
Joint Action on Dementia (ALCOVE Joint
Action), a second Joint Action on dementia iSupport
under the EU-Health Programme was
launched in March 2016. The initiative The WHO also focuses on the impact
focuses on post-diagnostic support, of caregiving, such as the deterioration
crisis and care coordination, and the of the caretaker’s physical and mental
quality of residential care and dementia- health and lost productivity when carers
friendly communities. are forced to abstain from work.
Brivio said there was huge In 2010, informal care costs stood
investment in research on dementia at roughly at €230 billion, according to
and other neurodegenerative diseases the WHO, which claims that “e-health”
EurActiv | IS EUROPE READY FOR ALZHEIMER’S? | SPECIAL REPORT | 2 - 8 November 2016 3

INTERVIEW

Alzheimer
Europe chief:
Holistic approach
needed to tackle
dementia
Alzheimer’s disease and other forms
of dementia remain underdiagnosed
in most European countries, Jean Alzheimer’s disease and other forms of dementia remain underdiagnosed in most European countries.
[Jean Georges]
Georges told EurActiv.

Jean Georges is the Executive Director countries will pose serious challenges to Programme on Neurodegenerative
of Alzheimer Europe, a non-profit the sustainability of current health and Diseases Research (JPND) and the
organisation aiming at improving care care systems. adoption by the European Commission
and treatment of patients with Alzheimer’s For that reason, Alzheimer Europe of its European Alzheimer’s Initiative.
disease. and its national member organisations Since then, the EU Presidencies of
have been actively campaigning to have Italy (2014), Luxembourg (2015) and
Georges spoke with EurActiv’s Sarantis dementia recognised as a public health the Netherlands (2016) have continued
Michalopoulos. priority at EU and national level. the focus on dementia and the current
Slovak EU Presidency will organise a
According to the 2016 Alzheimer’s Do you see political appetite among conference on 29 November entitled
Disease International report, dementia EU politicians to address this situation? “Alzheimer’s disease – epidemic of the
affects 47 million people worldwide and Do you believe that EU politicians realise third millennium – Are we ready to face
this number will treble by 2050. What the seriousness of Alzheimer’s disease and it?”
are the reasons for that? Do you believe other dementias?
that the current care system for dementia What kind of initiatives do you think
should be redesigned? We are encouraged by the growing should be taken at EU level in order to put
number of EU politicians who have this chronic disease under control?
Age is the primary risk factor supported our campaign over the past
for Alzheimer’s disease and for that years. In 2007, a small group of MEPs We have been campaigning since
reason the numbers of people affected helped us in setting up the European 2006 to have dementia recognised as
is increasing as our populations are Alzheimer’s Alliance which has since a European priority. In our Paris (2006)
ageing. Alzheimer Europe estimates grown to 127 MEPs from 27 EU countries. and Glasgow (2014) Declarations, we
that 8.7 million people are living with Thanks to their support, awareness called for the development of national
Alzheimer’s disease or another type of of dementia has increased, the need dementia strategies in all European
dementia in the European Union alone. for greater European collaboration has countries as well as the development of
In 2008, a group of researchers been recognised and we have seen a European action plan.
estimated the cost per person with a number of EU Presidencies making Such a European action plan or
dementia in the European Union to be further progress. strategy should be comprised of two key
€22,000 per year, with great variations One of the first EU presidencies to elements:
across the EU since the societal costs do so was the French Presidency of the 1. O
 n the one hand, the European
were estimated to be eight times more in European Union in 2008 which organised Union should develop a
Northern Europe than in Eastern Europe. the first Presidency Conference comprehensive and holistic
However, it is the growing numbers of dedicated to Alzheimer’s disease and
people with dementia in all European which led to the creation of the Joint Continued on Page 4
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Continued from Page 3

dementia or neurodegenerative disease projects focus on developing new
research agenda, which strategies in place in Austria, Belgium, diagnostic methods or in comparing
encompasses and supports Cyprus, Czech Republic, Denmark, diagnostic strategies. Alzheimer Europe
all types of research (basic, Greece, Ireland, Italy, Luxembourg, is delighted to be a partner in a new
clinical, psychosocial, care, Malta, the Netherlands, Norway, IMI-funded project entitled “MOPEAD
epidemiological, health systems Slovenia, Spain, Switzerland and the UK – Models for Patient engagement in
and health economics). Funding (with separate strategies for England, Alzheimer’s disease” which will compare
for dementia research should be Northern Ireland and Scotland). different approaches to identify which
increased substantially and better There are of course huge variations strategies lead to earlier identification
coordinated at EU level. between countries as to the contents, and diagnosis.
2. O
 n the other hand, the European funding and monitoring of these We fully support the campaign
Union should promote the strategies. Also, some countries without for a timely diagnosis of Alzheimer’s
collaboration between health and strategies have very comprehensive disease and dementia, but we stress
social ministries and encourage guidelines or research programmes that timely diagnosis should always be
them to learn from one another in place without these having been accompanied by the adequate post-
by exchanging information on formalised into a strategic framework. diagnostic support (information on the
innovative initiatives and existing local or national Alzheimer’s association,
good practices. What do you believe should be done access to treatment and psychosocial
I would also like to see the in order to improve diagnosis of dementia? interventions, peer support, advance
appointment of a dementia coordinator Are you satisfied with the research care planning and advance directives,
at European Commission level and the initiatives taken at EU level? possibility to participate in research and
further development of the European clinical trials).
group of government experts on Alzheimer’s disease and other forms
dementia. of dementia remain underdiagnosed in
most European countries. Our national
The EU Council of Ministers has urged associations have estimated that
member states to set up national strategies between half and two-thirds of people
to address the situation as well as boost with dementia do not have a formal
their multilateral collaboration. What is diagnosis. Also, research has shown that
the current state-of-play? Which countries people are diagnosed in the later stages
have made the most progress and which of the disease and that timely diagnosis
ones are still lagging behind? remains the exception, rather than the
rule.
We welcomed the efforts of However, those countries which have
the Luxembourg Presidency of the adopted national dementia strategies
European Union which resulted in the all have identified timely diagnosis as a
adoption by health ministers of very key priority area. Awareness campaigns
ambitious Presidency conclusions on therefore need to target the general
Supporting people living with dementia, population to identify the first symptoms
which called for greater European and general practitioners to ensure they
collaboration and the development of either diagnose or refer to specialists.
national dementia strategies. It was In addition, timely diagnosis was
great to see that Health Ministers thus the focus of ALCOVE, the first Joint
gave a ringing endorsement to our own Action on Dementia which resulted
campaign. in recommendations which should
When we issued our call to have be taken up by health ministries. The
countries develop national dementia new Joint Action on Dementia (2016-
strategies in 2006, France was the only 2018) coordinated by the Scottish
EU country which had a very modest Government is looking to build on these
Alzheimer’s plan. The number of recommendations to further promote
countries with such plans in place has models for timely diagnosis.
continued to grow and we now have Similarly, a number of EU-funded
EurActiv | IS EUROPE READY FOR ALZHEIMER’S? | SPECIAL REPORT | 2 - 8 November 2016 5

Denmark aims
to become
‘dementia-friendly
nation’ by 2025
Denmark has put forward a national
plan aimed at making the country
dementia-friendly by 2025, Minister
of Health Sophie Loehde told
EurActiv.com in Copenhagen.
Sophie Loehde [Venstre/Flickr]
Dementia has become a political
priority for Denmark, where an estimated
35,000 persons live with this disease and early intervention and is based on country’s national plan was collectively
today. the newest knowledge and research,” designed with the participation of
“In reality, the number is much she explained. relevant stakeholders, including persons
higher since many live with the disease The third objective is to support affected by dementia.
without having been diagnosed and in the friends and relatives of dementia The minister visited 35 municipalities
the years to come many more people will sufferers, which she said should take in Denmark as well as in the Netherlands,
be affected,” Loehde said. center stage in the Danish strategy. the UK, Norway, and Sweden.
“Dementia is a terrible disease that “Focusing on relatives is important A key political objective is to make all
turns the lives of those affected upside when it comes to dementia since they 98 municipalities in Denmark “dementia-
down,” the liberal politician stressed, face a very special challenge. Not only do friendly” by making it “easier and safer for
adding that considering the critical they have to handle that a person close people with dementia and their relatives
situation, the government decided to to them is severely ill, at the same time to live with this disease”.
forge a new national action plan on they also have to deal with their own grief “Together [with stakeholders] we
dementia for 2025. of losing touch with a beloved person,” placed dementia on the top of the
she said. political agenda, as it should be,” the
Three objectives Under the Danish national plan, minister pointed out.
80% of dementia sufferers will have a She also cited an example of a
Denmark’s plan was recently specific diagnosis by 2025, Loehde said. relative of a person with dementia who
launched and inspired by best practices Meanwhile, caregivers, nursing homes said: “Sometimes, when we meet people
across Europe. It received funding worth and hospitals will receive better training we know, they cross the street in order
over €60 million. and skills development. to avoid us. We feel sorry for them. We
The strategy focuses on three overall Reducing the amount of drugs know they do it because they don’t know
objectives. administered to dementia sufferers is what to do or what to say.”
“Firstly, Denmark must become a also an important part of the plan. “I want to fight this stigmatisation,”
dementia-friendly nation where people “The antipsychotic medication Loehde said.
with dementia can live a safe and among people with dementia should
dignified life,” Loehde said. be reduced by 50% toward 2025. It’s Inspired by the UK
The second goal focuses on tailor- not easy but I know that we can do it,”
made care giving and prevention for Loehde said. Denmark’s national plan on
dementia sufferers. dementia was largely inspired by the
“The treatment and care of people Fighting stigmatisation United Kingdom, where more than 1.5
with dementia must be based on the million dementia “friends” are currently
needs and values of the individual person, Speaking at the 26th Alzheimer registered.
and treatment must be provided in a Europe Conference in Copenhagen,
coherent way that focuses on prevention Sophie Loehde pointed out that her Continued on Page 6
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Continued from Page 5

separate line for persons like her. implementation phase.
Britain has made efforts to set This, Loehde said, is “a little example “Our goal is to provide a better quality
political targets, which are systematically indicating how much a small change can of care in everyday life,” she emphasised.
followed up by data on how every region make a huge difference for people”. Vølund pointed out that when
in the country performs, Loehde said. sufferers are diagnosed with dementia,
“I’m impressed by the efforts of the The role of local communities “they are more or less left alone” as
UK to deal with people with dementia municipalities actually tell them “call us if
and their families. In Manchester, I was Birgitte Vølund, the chairwoman you need any help”.
particularly impressed by the way civil of the Danish Alzheimer Association, “People are so confused when they
society is involved.” told EurActiv that municipalities should receive a diagnosis. We need to take
The minister mentioned the example be fully engaged in creating dementia- action to help these people from the very
of a young British woman suffering friendly local communities. beginning,” Vølund said, adding that the
from dementia who found herself “Municipalities should form local administration should adopt more
challenged while shopping in a local specific policies and set clear goals. The proactive strategies focused on visits and
supermarket. She was stressed out by municipalities carry 80% of the economic advice.
“busy people” who lost their patience burden so it’s them that should change,” “The other thing is to have much
while queuing in line with her to pay, and Vølund stressed, adding that people more volunteering activity centers in
she then contacted the director of the with dementia should also be heard Denmark which deal with social, cultural
supermarket, who decided to make a in this process, especially during the and physical activities,” she said.

Study: Dementia
healthcare
services need to
be redesigned
People with dementia remain under-
diagnosed and lack comprehensive
and continuing healthcare, a report
has found, urging policymakers Families have a significant role to play in helping persons with dementia. [The home of Fixers/Flickr]
to focus on primary care services.
EurActiv.com reports from
Copenhagen. people living with dementia, rings the costs arising from hospitalisation.
alarm about the rapid rise in dementia Gilles Pargneaux, a French Socialist
A new report from Alzheimer’s cases worldwide, which are projected MEP, recently told EurActiv that dementia
Disease International, authored by to triple by 2050. A particular aspect of costs Europe €123 billion per year, in
researchers at King’s College London and concern is the low levels of dementia terms of medical expenditures and social
the London School of Economics and diagnosis that prevent dementia patients care.
Political Science (LSE), found that the vast from having access to care and treatment. According to the report, a radical
majority of persons with dementia have The researchers noted that around change in the way healthcare is delivered
yet to receive a diagnosis and calls for a half of persons with dementia (40-50%) to individuals living with dementia should
global transformation in healthcare. in high-income countries, and one in ten be made, focusing more on non-specialist
It also claims that strategies need to or less (5-10%) in low and middle-income primary care.
be developed that will focus on prevention countries have received a diagnosis. “Greater involvement of non-
and risk assessment, while rebalancing In high-income countries, the costs of specialist primary care staff can unlock
non-specialist primary care. healthcare are higher for those suffering capacity to meet increasing demand for
Diagnosis and cost from dementia than age-matched
The report, Improving healthcare for controls, with a substantial proportion of Continued on Page 7
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Continued from Page 6

prevention. manage the needs of family members
dementia care, and could make the cost “There are still a lot of people in the who may have developed their own
of care per person up to 40% cheaper,” world who have not been diagnosed physical and mental health needs in their
the report reads. with dementia who are living with this caring role,” he remarked.
Primary care staff are non-specialist condition; I think there is a particular role
doctors and nurses based in the for primary care to play in making this Raising awareness in the EU
community who are typically the first point diagnosis,” he said.
of contact with the healthcare system. “For instance, we need to see who The latest survey regarding the state
does best during the whole evolution of dementia care in the EU showed that
Primary care of the disease. Early disease possibly half the carers spent at least 10 hours a
requires more specialist assessment in day looking after their loved one and only
Martin Prince, the lead author of making a diagnosis but later in the disease 17% of them consider that the level of care
the report at King’s College London, told primary care certainly will have a very for the elderly in their country is good.
EurActiv that current specialist models prominent if not leading role,” he noted. They also noted that the information
of dementia care (where geriatricians, Regarding prevention, he emphasised they received at diagnosis was
neurologists, and psychiatrists are that although efforts have rightly focused “inadequate”, and called for more
providing dementia care) were unlikely on developing new drugs, there are information on drug treatments.
to be able to scale up to care for the probably a lot of things to do in risk Four out of five said they wanted more
growing number of individuals affected by mitigation, like the promotion of a better information on help and support services
dementia – especially in low and middle- diet, exercise, and healthier lifestyle. and just two out of five were informed
income countries. “Clearly, there is a role for the general about the existence of an Alzheimer’s
“There is evidence that when primary practitioners in this as there is in other association.
care doctors take responsibility for chronic conditions like diabetes or heart “Perhaps of greatest concern is
dementia care they can achieve similar disease. So the general practitioners not that more than half have no access to
outcomes to specialists. Nurses can be only have a role in making diagnoses services such as home care, day care or
case managers, and perform diagnostic but also a very critical role in terms of residential/nursing home care, and when
assessments and reviews,” he said. prevention and maintenance of brain these services are available, many carers
Prince explained that training was health.” have to pay themselves,” the report reads.
crucial if primary care doctors are to take Another report, Mapping dementia-
on an increased role in treating dementia What can the family do? friendly communities across Europe,
patients. This, he said, can be achieved commissioned by the European
by defining a ‘pathway’ for dementia care For Ritchie, families and close Foundations’ Initiative on Dementia
with clearly defined roles for primary care relatives have a critical role to play. Living (EFID) and carried out in 2014-2015 by
doctors, specialists and others to work with someone affected by dementia has the Mental Health Foundation (a UK non-
collaboratively. a major impact on the wellbeing of family governmental organisation), specified the
“Specialists will need to take on a members who may need to sacrifice their need for dementia-friendly communities
prominent role in training and supervising professional lives to care for the patient, across Europe.
non-specialists in more general tasks,” on top of the challenges of seeing a loved The report aimed at providing
Prince said. “In low-resource countries, one’s illness progress. practical information to support good
a greater commitment is needed to The family could also help identify the practice around sustainable, inclusive
strengthen primary healthcare. These are early symptoms, Ritchie said. “So family and supportive environments for persons
elements that should be contained in a members have to be encouraged and living with dementia and their carers.
National Plan on Dementia, with allocated given the opportunity to seek assistance Among the findings, researchers
funding, in every country,” he added, if they are worried about a loved one’s suggested that dementia sufferers
emphasising that more effort is needed to memory,” he pointed out, saying the should be actively included and involved
integrate dementia in primary healthcare. first point of contact is often the general in the communities they live in. Raising
Professor Craig Ritchie, who is the practitioner. awareness about dementia was also
director of the University of Edinburgh Family members should also be highlighted by the researchers, who
Centre for Dementia Prevention, told involved in the therapy process, which warned that “unclear information can be
EurActiv that primary or non-specialist helps optimise treatment, Ritchie said. But misleading and inadvertently risk adding
care has two main roles: one linked families cannot bear the entire burden, he to stigma”.
to diagnosis and another related to warned. “Good care must also reflect and
8 2 - 8 November 2016 | SPECIAL REPORT | IS EUROPE READY FOR ALZHEIMER’S? | EurActiv

INTERVIEW

People with
dementia:
‘We can still
contribute to
this society’
Europe needs a strategy to tackle “When I was diagnosed it was just a shock, a disaster to me because I was not prepared.”
[Sarantis Michalopoulos]
dementia, two people with dementia
told EurActiv.com, stressing that
they have a role to play in research because I knew something was wrong. Hilary: For me, it was the same.
and society in general. It’s not the diagnosis you want to hear, There was no support. I was on my own
but in a way, I found it as a relief to when I got the diagnosis. I hadn’t told my
Helen Rochford-Brennan is Chair of understand. I had something that told husband about my worries. So, when I
the Irish Dementia Working Group and a me what my problems were. Although went and told him it came to him as a
member of the European Working Group I am still working now, it has a huge real shock. In fact, the way I told him was
of People with Dementia. Hilary Doxford impact on your life. really bad, because I had not thought
is a volunteer for the Alzheimer’s Society Helen: Giving up everything is about it. I had not prepared him for it.
in England and also a member of the the hardest thing to do. You wake up When I got the diagnosis, I was offered
European Working Group of People with in a morning, and you have nothing a follow-up appointment to bring my
Dementia. but isolation. You have no job, you husband with me. After that, I was
have to step down as I did from all told to come back in a year, or (if I was
They spoke with EurActiv’s Sarantis the organisations I was involved in. I worried) book an appointment when
Michalopoulos at the 26 th
Alzheimer was fully employed. These are difficult you feel like it.
Europe Conference in Copenhagen. things. How do you tell your family? My This is not support. A year is too long.
husband often says he wants to have This disease can progress really quickly
Can you tell me about your personal some of the Helen that was and not the for some people. In fact, at the point of
experience of being diagnosed with Helen that is. When you are diagnosed, diagnosis, I was told I had 18 months
dementia? you are very alone and isolated. to 2 years before I would need a lot of
supporting care. And there is a medical
Helen: When I was diagnosed it was Can you tell me about the kind of post- professional telling me to come back in a
just a shock, a disaster to me because diagnostic support offered to you and how years’ time? This is half way through the
I was not prepared. I was still working, it could be improved? What should the time period he is telling me I’m going to
I was planning my retirement, I was main priorities be? be incapable. He got that wrong cause it
enjoying my life and I was very involved is 4 years now and I am okay still. But I
in my community and on the boards Helen: First of all, there is no cure, no had no support whatsoever.
of many organisations. I was deeply medicine. I was under age 65 and there Helen: My consultant used to say
shocked. And I suppose for me, the most wasn’t any post-diagnosis support for to my husband, “Please try not to make
difficult thing was to let go all of that. me. There is nothing, absolutely nothing. Helen feel depressed”, and he was
Hilary: It took me 6-7 years to get a So I went home, I had no one to turn to. saying, “How am I supposed to do it?”
diagnosis. I knew something was wrong The general practitioner was supportive, Then one day my consultant suggested
with my brain seven years before I the pharmacists understood my illness, to me to visit the Alzheimer’s Society. He
got the diagnosis. I went back to my but other than that I had nobody and it thought it could help me, so I went there
general practitioner several times in took me a long time to finally accept. I and it was true. There was light.
that intervening period and when I got was fully aware of the stigma around the
the diagnosis it was not a surprise to me illness. Continued on Page 9
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Continued from Page 8

What more can be done at European want to contribute as much as I can.
A nurse told me considering my and national and level to improve the lives Hilary: We need to build working
background you should focus on of people with dementia? groups of people with dementia and
research because research is really the European one is great. We are just
important today around dementia. Helen: First of all, every country setting one up in England now, but
A friend of mine was listening to the should have a national dementia every country needs one. We need
radio, a professor asking for people to strategy. But not just have it, they must to develop networks of people with
be involved in research and she gave me implement it. We also should have a dementia, which will be good for us, for
his name. My son insisted I had to write European Strategy for dementia. It’s professionals. People with dementia
a letter, but I didn’t know what to say. the fastest illness globally. There is no need to have access to a group where
It was eleven o’clock on Saturday night cure. We need to be looking at how, they will be granted the assistance they
and we were writing a letter. The next even though there is so much research need.
morning at 09:00, Professor Robinson happening and I am optimistic that
came back to me. That was the first step something is going to happen.
after a long time that got me out of my But we definitely need a European
house, that there might still be a life for strategy. In every aspect of research,
me. people with dementia should be
involved, because we have the
Can you tell us about how you became experience and knowledge.
involved with the European Working Group Hilary: I totally agree. Now the
of People with Dementia (EWGPWD)? World Health Organisation starts setting
Are you also involved in national level a framework that hopefully national
advocacy? societies and governments will then start
to do something. It’s great that it’s on
Helen: I became a member of the the agenda on this level. The real work
research working group in Ireland, which is done on the ground. The people who
has existed for 4 years now. From there, I deal with that every day need to have
was nominated to become chairwoman, resources and strategies that will make
very soon after I joined, I think. their job easier and more effective.
Maybe because you deserved it.
Helen: Maybe! I immediately created How can policymakers, clinicians, and
structures in the group and after that, I scientists, engage more with people with
was nominated to become a member of dementia in research and policy?
the European Working Group of People
with Dementia (EWGPWD). All these Helen: One of the main difficulties
things were wonderful and enlightening we people with dementia face is that
experiences and gave hope that I can
live again and make a contribution to
most of us lose our careers, our jobs.
So, a kind of a pension or disability
For information
society.
Hilary: I was similar. My first question
allowance would be in order. When
there is a requirement we would like,
on EurActiv
after I got diagnosed was “How long have
I got?” My second question was “What
in particular for pharma for large
conferences, to consider some kind of
Special Reports...
research can I get involved in?” And the honorarium.
Contact us
neurologist said, “I don’t know.” I went Because you are traveling a long
to the website of the English Alzheimer’s distance and you want to buy a bottle of Davide Patteri
[email protected]
Society and saw that they had an English water and you might forget it. I will forget
tel. +32(0)2 788 36 74
network of volunteers and I joined that. it. I will forget that I will need something.
Now I am Ambassador for the Society Expenses must be paid. Most of the time Other relevant contacts:
and I joined the EWGPWD, like Helen. I travel alone. We want to be appreciated
Sarantis Michalopoulos
Happiness and hope were brought back and respected as people who can make [email protected]
to my life. We see now what is going on. a contribution. I am still the same Helen tel. +32(0)2 226 58 28
Things are gradually changing. like the one before I got my diagnosis. I