Issue 11 June 2012 Dementia in Europe The Alzheimer Europe Magazine

Laying the foundations for the European Working Group for People with Dementia

Commissioner John Dalli talks about how the EU continues to address Alzheimer’s disease.

Françoise Grossetête, MEP (France) discusses the new public health programme, “Health for Growth”.

Debating dementia in the European Parliament Alzheimer Europe dedicates its 12th lunch debate to the PharmaCog project. Members of the european parliament unite for the dementia cause

Antonescu Ashworth Audy Aylward Badia i Cutchet Becker Blinkeviciute Brepoels Busoi Elena Oana Richard Jean-Pierre Liam Maria Heinz Vilija Frieda Cristian Silviu (Romania, EPP) (United Kingdom, ECR) (France, EPP) (Ireland, ALDE) (Spain, S&D) (Austria, EPP) (Lithuania, S&D) (Belgium, Greens-EFA) (Romania, ALDE)

Cabrnoch Carvalho Childers Chountis Christensen Coelho Crowley De Lange De Veyrac Milan Maria da Graça Nessa Nikolaos Ole Carlos Brian Esther Christine (Czech Republic, ECR) (Portugal, EPP) (Ireland, S&D) (Greece, GUE-NGL) (Denmark, S&D) (Portugal, EPP) (Ireland, ALDE) (Netherlands, EPP) (France, EPP)

Engel Griesbeck Grossetête Hall Jaakonsaari Jäätteenmäki Juvin Kohlícˇek Jaromír Koppa Frank Nathalie Françoise Fiona Liisa Anneli Philippe (Czech Republic, Maria Eleni (Luxembourg, EPP) (France, ALDE) (France, EPP) (United Kingdom, ALDE) (Finland, S&D) (Finland, ALDE) (France, EPP) GUE/NGL) (Greece, S&D)

Kratsa- Łukacijewska Lulling Matias Mauro McAvan McGuinness Mikolášik Mitchell Tsagaropoulou Elz˙bieta Astrid Marisa Mario Linda Mairead Miroslav Gay Rodi (Greece, EPP) (Poland, EPP) (Luxembourg, EPP) (Portugal, GUE-NGL) (Italy, EPP) (United Kingdom, S&D) (Ireland, EPP) (Slovakia, EPP) (Ireland, EPP)

Moraes Morin-Chartier Niebler Panzeri Pargneaux Parvanova Peterle Pietikäinen Ries Claude Elisabeth Angelika Pier Antonio Gilles Antonyia Alojz Sirpa Frédérique (United Kingdom, S&D) (France, EPP) (Germany, EPP) (Italy, S&D) (France, S&D) (Bulgaria, ALDE) (Slovenia, EPP) (Finland, EPP) (Belgium, ALDE)

Rohde Roithová Roth-Behrendt Sarbu Schaldemose Simpson Staes Tarabella Taylor Jens Zuzana Dagmar Daciana Octavia Christel Brian Bart Marc Keith (Denmark, ALDE) (Czech Republic, EPP) (Germany, S&D) (Romania, S&D) (Denmark, S&D) (United Kingdom, S&D) (Belgium, Greens-EFA) (Belgium, S&D) (UK, Greens-EFA)

Toia Triantaphyllides Ulmer Van Nistelrooij Vaughan Watson Weisgerber Werthmann Willmott Patrizia Kyriacos Thomas Lambert Derek Graham Anja Angelika Glenis (Italy, S&D) (Cyprus, GUE/NGL) (Germany, EPP) (Netherlands, EPP) (United Kingdom, S&D) (United Kingdom, ALDE) (Germany, EPP) (Austria, NI) (United Kingdom, S&D)

You can make a difference. Join the European Alzheimer’s Alliance today by contacting Alzheimer Europe at 145, rte de Thionville • L 2611 Luxembourg • Tel.: +352 29 79 20 • Fax: +352 29 79 72 Wortmann-Kool Yannakoudakis Záborská Corien Marina Anna [email protected] • www.alzheimer-europe.org (Netherlands, EPP) (UK, ECR) (Slovakia, EPP) Parliament © European Dementia Issue 11 in Europe June 2012 Table of contents The Alzheimer Europe Magazine

04 Welcome 35 The view from Romania By Heike von Lützau-Hohlbein, Oana Antonescu, MEP (Romania) discusses the Chairperson of Alzheimer Europe. challenges faced by people with dementia and their carers in Romania. Prioritising Dementia 37 Focus on dementia strategies: Northern Ireland 06 Giving a voice to people with Alzheimer Europe speaks with the Minister dementia of Health, Edwin Poots and Elizabeth Byrne Jean Georges, Executive Director, Alzheimer McCullough, Alzheimer’s Society, about the Europe, highlights the key issues from the recently launched regional dementia strategy ground-breaking meeting which took place in Northern Ireland. Carol Hegarty, carer, and in Glasgow, Scotland, in order to lay down the Theresa Clarke, who lives with dementia, foundations for the European Working Group highlight what they expect the strategy to for People with Dementia. deliver. 14 NILVAD: A European project to 41 Dementia and austerity measures test the efficacy of a new drug for Maria do Rosário Zincke Dos Reis, Chairperson Alzheimer’s disease of Alzheimer Portugal and Board Member of Alzheimer Europe, talks about the impact Alex Teligadas, Communications Officer, Alzheimer Europe Board Alzheimer Europe, presents the main elements austerity measures are having in Portugal. Heike von Lützau-Hohlbein (Germany), and aims of this new project. 42 One year’s post-diagnostic support Chairperson Iva Holmerová (Czech Republic), 17 guaranteed for people with dementia Debating dementia in the European Vice-Chairperson Parliament in Scotland Maria do Rosário Zincke dos Reis (Portugal), Alzheimer Europe reports on its 12th lunch Henry Simmons, Chief Executive of Alzheimer Honorary Treasurer debate in the European Parliament which Scotland, explains how the organisation Sigurd Sparr (Norway), was dedicated to the European project, campaigned to ensure that people in Scotland Honorary Secretary who receive a diagnosis of dementia are Sabine Henry (Belgium) PharmaCog. Liane Kadusch-Roth (Luxembourg) offered one year of post-diagnostic support. Patrick Maugard (France) Policy Watch Maurice O’Connell (Ireland) Dementia in the News Sirpa Pietikäinen (Finland) Alicja Sadowska (Poland) 22 Dementia and Alzheimer’s disease: Charles Scerri (Malta) Europe takes stock and moves 46 Spotlight on Romania Henry Simmons (UK/Scotland) forward The Romanian Alzheimer Society has carried out its work for 20 years. In this article John Dalli, Commissioner for Health and Contact Alzheimer Europe at: Consumer Policy, discusses the various Caˇtaˇlina Tudose, President of the Society, reflects on its work and future challenges. Alzheimer Europe activities being carried out in the fight against 145, route de Thionville Alzheimer’s disease. 47 Members’ news L-2611 Luxembourg A brief look at some of the work carried out Tel.: +352 29 79 70 24 The place of dementia in the new by national Alzheimer associations around Fax: +352 29 79 72 EU public health programme www.alzheimer-europe.org Europe. A look at Health for Growth, the new EU Public [email protected] Health Programme. Contributors include MEPs 48 The Scottish Dementia Working Group celebrates ten years of Françoise Grossetête (France), Glenis Willmott Jean Georges, Executive Director (UK), Milan Cabrnoch (Czech Republic), achievement Annette Dumas, EU Public Affairs Officer Maria Badia i Cutchet (Spain) and Angelika Highlights of the work carried out by the Julie Fraser, Editor Werthmann (Austria). Scottish Dementia Working Group are Dianne Gove, Information Officer discussed by Jan Killeen, Alzheimer Scotland. Gwladys Guillory, 31 Dementia: A public health priority Event and Conference Coordinator 50 An overview of the World Health Organisation/ Living with dementia in Portugal Alex Teligadas, Communications Officer Alzheimer’s Disease International report, Maria do Rosário Zincke Dos Reis, Chairperson Grazia Tomasini, Administrative Assistant “Dementia: a public health priority” is given of Alzheimer Portugal and Board Member by Yutaro Setoya and Tarun Dua of the World of Alzheimer Europe, shares her experience of caring for her mother, Teresa, who passed Photo credits Health Organisation. European Parliament, European Commission, 34 The British Prime Minister’s away with Alzheimer’s disease in February this Alzheimer Europe, Heike von Lützau-Hohlbein Dementia Challenge year. by Heinz Schwarz. Andrew Chidgey, Alzheimer’s Society, Layout considers the commitment given by British binsfeld corporate Prime Minister, David Cameron, to tackle dementia. Print Imprimerie Centrale, Luxembourg © European Parliament © European welcome

Welcome

Of all the developments in the field of dementia In the UK, the launch of “The Prime Minister’s over the last few months, I am particularly happy Challenge on Dementia” marks David Cameron’s to bring to you information about the very first personal commitment to provide world class care European Working Group for People with and research. Edwin Poots, Minister for Health, Dementia (EWGPD). This was a significant meet­ Northern Ireland, discusses the Northern Ireland ing. The coverage by Jean Georges, Executive dementia strategy with Alzheimer Europe. I am Director of Alzheimer Europe, is uplifting and very encouraged by Scotland’s action to ensure full of hope. I am grateful to all participants with that people who receive a diagnosis of dementia dementia for their enormous contribution, ensur­ are to be offered one year of post-diagnostic ing the meeting was a great success. support. Henry Simmons, Alzheimer Scotland’s Chief Executive, offers a frank insight into how We report on Alzheimer Europe’s 12th lunch de­ this should be achieved. Heike von Lützau-Hohlbein Chairperson, Alzheimer Europe bate in the European Parliament. Dedicated to the European project, PharmaCog, this meeting Oana Antonescu, MEP (Romania) discusses the showed how Europe wants to speed up drug changes needed for people with dementia and discovery for Alzheimer’s disease and was Câtâlina Tudose, President of the Romanian strongly supported by members of the European Alzheimer Society, laments the fact that dementia Alzheimer’s Alliance. is still not a political priority in Romania. Alzheimer Portugal talks about its concerns John Dalli, EU Commissioner for Health and regarding the impact austerity measures may Consumer Policy, illustrates how the EU con­ have on plans to prioritise dementia. tinues in its fight to address Alzheimer’s disease. An in-depth look at how the new Public Health Finally, I invite you to read the very personal Programme “Health for Growth” can help people account of Maria do Rosario Zincke dos Reis, with dementia and their carers is provided by who cared for her mother until she passed away Franςoise Grossetête, MEP (France), Rapporteur in February after living with dementia for many for the Environment, Public Health and Food years. This account will strike a chord with any­ Safety Committee in the European Parliament, one who has cared for a loved one and help people together with the Shadow Rapporteurs, Milan to understand a little more about how this disease Cabrnoch, MEP (Czech Republic) and Glenis impacts not only those who have the disease, but Willmott, MEP (UK) and Rapporteurs for Opin­ also their carers. ion, Maria Badia i Cutchet, MEP (Spain), and Angelika Werthmann, MEP (Austria).

The continued need to raise awareness and im­ mediate action is highlighted by the World Health Organisation/Alzheimer Disease International Heike von Lützau-Hohlbein, report “Dementia: A Health Priority”. Yutario Chairperson, Alzheimer Europe Setoya and Tarun Dua, World Health Organisa­ tion, present the key findings.

4 Dementia Issue 11 in Europe June 2012 Prioritising dementia The Alzheimer Europe Magazine

Prioritising dementia Jean Georges reports on the meeting dedicated to the European Working Group for People with Dementia.

Marina Yannakoudakis, MEP (UK), Alexandra Auffret (PharmaCog), Heike von Lützau-Hohlbein (German Alzheimer Association), Jill Richardson (PharmaCog) and Elisabetta Vaudano (IMI) discuss the PharmaCog project during Alzheimer Europe’s lunch debate in the European Parliament.

Alex Teligadas presents the European project, “NILVAD”.

06 Giving a voice to people with 17 Debating dementia in the European dementia Parliament Jean Georges, Executive Director, Alzheimer Alzheimer Europe reports on its 12th lunch Europe, highlights the key issues from the debate in the European Parliament which ground-breaking meeting which took place was dedicated to the European project, in Glasgow, Scotland, in order to lay down the PharmaCog. foundations for the European Working Group for People with Dementia.

14 NILVAD: A European project to test the efficacy of a new drug for Alzheimer’s disease Alex Teligadas, Communications Officer, Alzheimer Europe, presents the main elements and aims of this new project. Prioritising dementia

Giving a voice to people with dementia

Jean Georges reports on the exciting meeting Alzheimer Europe organised in Glasgow that brought together people with dementia and delegates from national Alzheimer associations to discuss plans for a “European Working Group for People with Dementia”.

The meeting took place from 15 to 17 April and as a national priority and the development of the Jean Georges, Executive Director, Alzheimer Europe was organised together with the Scottish Dementia Scottish Dementia Strategy – would have been Working Group and Alzheimer Scotland. It was impossible without the active contribution of aimed at exchanging best practices between coun­ people with dementia through the Scottish tries on how best to involve people with dementia Dementia Working Group. and providing guidance to Alzheimer Europe for the setting up of its European Working Group for In my own introduction, I highlighted that the People with Dementia. involvement of people with dementia was not a new “The SDWG has priority for Alzheimer Europe (AE). In fact, AE can developed a The inspirational meeting was attended by nine look back on exactly ten years of activity in this people with dementia from the Czech Republic, field: during our 2002 Conference in Maastricht, reputation for being England, Germany, Ireland, the Netherlands and Peter Ashley (a person with Lewy Body Dementia) enthusiastic and Scotland who shared both their personal experi­ made an impassioned call for the need of Alzhei­ fearless ences of being diagnosed with Alzheimer’s mer associations to give a voice to people with campaigners.” disease or another form of dementia, as well as their dementia. Since then, AE has provided a platform involvement in the work of national Alzheimer to people with dementia at successive conferences. Agnes Houston associations. In addition, 20 representatives from They have been involved and consulted in working Austria, Bulgaria, Norway, Slovenia and Spain groups for projects and in policy work, on such participated in the meeting to learn from the important issues as advance directives, assistive organisations that already involve people with technologies and the ethics of dementia research. dementia. AE now seeks to improve this involvement policy by setting up a European Working Group for Setting the scene People with Dementia. This will be a permanent group that will advise the organisation and will Henry Simmons, Chief nominate a representative to sit on the AE Board. Executive of Alzheimer Scotland, was proud to wel­ The example of the Scottish Dementia come the participants to his Working Group home city. He stressed that the significant achievements Although the idea of having a working group for of the organisation – securing people with dementia on a European level is new, Henry Simmons the government’s rec­ national local groups for people with dementia (Scotland) ognition of dementia exist in a number of European countries. A partic­

6 Dementia Issue 11 in Europe June 2012 Prioritising dementia The Alzheimer Europe Magazine

ularly successful example wanted to listen), the fact that there is now a is the Scottish Dementia Scottish government and last, but in no ways least, Working Group (SDWG) the funding and support provided by Alzheimer which was invited to talk Scotland. The speakers agreed that the group could about its work and its best be described as focused, disciplined, profes­ activities over the past ten sional, respectful of others and delivering what it Scottish Dementia Working years. In line with the team promises. Group spirit of the group, the presentation was shared between the Chair Agnes Successful initiatives on a national level Houston, the Vice-Chair David Batchelor, the group’s co-founder James McKillop and a new Participants heard of other groups for people with committee member Archie Latta. dementia in Europe, each having slightly different ways of working. Rob Groot Zwaaftink and Mieke The group is run for and by people with demen­ and Victor Meijers described the group in the tia. Amongst the group’s important achievements, Netherlands known as the “Kerngroep Dementia” the speakers highlighted the group’s involvement which was set up two years with the Dementia Strategy, the drafting of a Bill of ago and has seven members. Helga Rohra Rights and the Government’s “Skills and Knowl­ After permission by the emphasised edge framework”. It has also made a DVD and has participants, the group’s recently published a popular joke book for Comic discussions are posted on the importance Relief. According to Agnes, the members of the the website so that others of portraying a SDWG have developed a reputation for being en­ may read them. They have balanced picture thusiastic and fearless campaigners and have even found this to be extremely Meike and Victor Meijers of dementia. been involved in less traditional activities such as with Rob Groot Zwaaftink popular, having around training occupational therapists and university (Netherlands) 3,400 hits each month. students. Membership of the group has increased from a few active members to over one hundred. A similar small group exists in the Czech Rep­ Whilst this growth is positive, James highlighted ublic and Nina Balačkova highlighted how the that one of the key challenges for the group was contacts with other people with dementia had how to cope with this larger membership without given her greater self confidence in speaking out in losing intimacy and informality. He stressed the public and in raising awareness. importance of people with dementia maintaining ownership of the group so that it can act indepen­ Helga Rohra and Helga dently. Schneider-Schelte spoke of peer support groups David underlined that the key to success was to in Germany. On a local keep objectives clear, simple and measurable. By level, some people with acting on feedback, the group was able to respond Helga Rohra, and dementia are involved and identify priorities as they arose. However, the Helga Schneider-Schelte, in the Boards of the members also stressed other factors such as good (Germany) regional member org­- fortune, good timing (as policy makers now a­n­i­sations of the German Alzheimer Association.

7 Prioritising dementia

Learning from mistakes These presentations showed that involving peo­ ple with dementia is not without its difficulties. Rob Samuelsen spoke of the reference group of For that reason, participants of the meeting people with dementia which has been set up in stressed the need to monitor and assess involve­ Norway and which the Norwegian association ment policies and to learn from past mistakes. consults on a regular basis. Whilst this proved successful, the involvement of a person with de­ Learning from each other mentia on the national Board was not satisfactory as the expected contributions from the person in The meeting was also a question were not clearly defined at the outset. great opportunity for mem­ ber organisations interested Daphne Wallace explained in setting up working groups that the UK group had lost for people with dementia or momentum when one of the in improving their involve­ key instigators left. In addi­ ment strategies to learn from “It is essential for tion, the group had faced Luis Garcia Sanchez the existing initiatives. Luis people to feel valued financial difficulties. She (Spain) Garcia Sanchez from the and listened to was therefore delighted that Spanish Alzheimer Founda­ before they are the Alzheimer’s Society had tion had expressly come to Glasgow to present the Daphne Wallace (England) recently appointed Gaynor plans of his organisation and to get advice and prepared to talk Smith as User Involvement guidance from the partici­ openly.” Manager. Gaynor explained that she is currently pants. According to Štefanija Eleanor Edmond focused on developing a consistent involvement Lukič Zlobec (Slovenia), the policy and guidelines for staff, as well as ensuring meeting was a true eye that volunteers are confident working with people opener as it made her aware with dementia. that setting up a group for people with dementia should

Eleanor Edmond from the Alzheimer Society of Štefania Lukiˇc Zlobec be one of the key priorities Ireland explained how difficult it had been to find (Slovenia) for her organisation. people with dementia who are willing to be open about it, due to the stigma attached to the disease. Barriers to involvement The Society found that it was essential for people to feel valued and listened to before they were pre­ It was evident during the meeting that there are pared to talk openly. Eleanor was therefore barriers which need addressing to facilitate delighted that Dermod people with dementia being able to join a group. Slevin was prepared to do so Perhaps most obviously, people with dementia as a person with dementia need to know that such a group exists. In Scotland, from Ireland. Dermod un­ this issue is addressed by Alzheimer Scotland’s derlined how he had found Dementia Advisers: part of their job description is that being part of a group to offer information about the SWDG. had given him the confi­ dence to speak out. Antonia Croy, Alzheimer Austria, highlighted Dermod Slevin (Ireland) that sometimes over-protectiveness by carers

8 Dementia Issue 11 in Europe June 2012 Prioritising dementia The Alzheimer Europe Magazine

could become a barrier and that it was necessary • the production of guidelines on how to to help carers to understand the advantages of influence government at local and national specific groups for people with dementia. level • information written for, and by, people with Getting our message to policy makers dementia • guidance on speaking out in the media Access to politicians by people with dementia • guidance on good practice involving people varied considerably. Agnes reflected that ten years with dementia ago it was rare for people with dementia to speak • gathering “soft” information (individual, ad out, whereas nowadays the SDWG is routinely hoc accounts from people with dementia on heard at the highest policy level. Irina Vasileva a range of issues) to help inform government Ilieva and Vasilka and others Krumova Dimitrova • networking. spoke of the round table discussions in Bul­ Helga Rohra emphasised the importance of por­ garia between policy traying a balanced picture of dementia, rather makers, Alzheimer as­ than focusing solely on the end stage, saying “The enthusiasm Irina Vasileva and Vasilka sociations, people with “after all, we all die”. Krumova Dimitrova (Bulgaria) dementia and carers. of all participants, Whilst eight events in All participants agreed on the importance of their willingness to eight locations had been carried out, it was diffi­ early diagnosis and the absolute right of people share their own cult to maintain discussions as there had been with dementia to be told their diagnosis as pre­ four changes of ministers in just one year. requisites for involving people with dementia. experiences and the In addition, post diagnostic support, including openness to learn In the Netherlands, the Kerngroep Dementia access to peer support, were identified as priori­ from one another was still very small and the Dutch delegates felt ties for all countries. were truly inspiring.” that they had not yet reached the point where they could confidently approach the government. Mixing business and pleasure Jean Georges

James McKillop was impressed by the number The highly productive meeting took place in a of local support groups for people with dementia relaxed and friendly atmosphere. This was helped in Germany – but also wondered whether the lack by the arrival of participants on Sunday, as they of a central spokesperson was an issue when try­ were treated to a traditional “High Tea” followed ing to communicate with the government. In by a small welcome reception and a joint dinner. Scotland, he said, it helped to be able to speak This informal get-together made sure that people with a collective voice. felt well acquainted by the official start of the meeting on Monday morning. Anyone seeing the Involving people with dementia participants in action would have thought it was a reunion of old friends. The meeting served as a forum on what is needed to involve people with dementia and to help them On Monday evening, we had the great honour of achieve their goals. It identified the following areas being invited by the Mayor of Glasgow to a civic in which people with dementia should be involved: reception in the prestigious and sumptuous

9 PrioritisingPrioritising dementiadementia

Working group participants, Glasgow, April 2012

Glasgow City Hall where we in which we involve people with dementia. Our were joined by other mem­ goal of developing a European Working Group of bers of the Scottish Demen­ People with Dementia was welcomed and sup­ tia Working Group, as well ported by everyone at the meeting. as key representatives of the City of Glasgow and Alzhei­ I am confident that this first meeting with nine “The seeds we mer Scotland. The guided people with dementia will only be the first of many planted in Glasgow tour of the City Hall which and that we will be able to build on this success. Baillie Iris Gibson will hopefully result rounded off the evening was The seeds we planted in Glasgow will hopefully another great experience for result in new successful initiatives on a national in new successful all participants. The welcome provided by level and a dynamic and productive collaboration initiatives on a Glasgow City was clear testimony for the recogni­ of people with dementia on a European level. The national level and a tion of dementia as a priority on a local level. next meeting is already planned, at our Annual dynamic and produc- Conference in Vienna later this year. Looking back on two days tive collaboration of My thanks go to Jan Killeen, Policy Consultant people with demen- Over the two days, there may have been tears of Alzheimer Scotland who expertly moderated tia on a European when participants shared particularly difficult the two day meeting and ensured that all partici­ level.” moments, but my main memory of the meeting pants had sufficient time and were able to actively will be of the many laughs that we shared. The contribute to the discussions. Above all, Alzhei­ Jean Georges enthusiasm of all participants, their willingness mer Europe is indebted to the people with to share their own experiences and the openness dementia who freely shared their experiences and to learn from one another were truly inspiring. It provided us with invaluable advice and guidance seems clear to me that Alzheimer Europe was on how to continue our work. right in deciding to continue to improve the way

10 A snapshot of the first-ever European Working Group Prioritising dementia for People with Dementia

Agnes Houston , Douglas T. Boyd OBE and Gaynor Smith (UK) and Daphne Wallace Henry Simmons (all Scotland) (UK)

Daphne Wallace (UK), Eleanor Edmonds (Ireland) and Dermod Slevin (Ireland)

Dianne Gove (Alzheimer Europe) and Jan Killeen James McKillop (Scotland) and Rob Groot (Alzheimer Scotland) Zwaaftink (Netherlands)

Helga Rohra (Germany) and Nina Balackova (Czech Republic)

John Laurie, Edward McLaughlin, Martin Sewell and Douglas T. Boyd OBE

Jan Killeen and Agnes Houston (Scotland) (all Scotland)

Rob Groot Zwaaftink (Netherlands) and Luis Garcia Sanchez (Spain)

Štefanija Lukič Zlobec (Slovenia) Jenny Douglas, Josie O’sullivan, Ruby and Irina Vasileva Ilieva (Bulgaria) Turner and Archie Latta (all Scotland) 11 Prioritising dementia

Participants with dementia reflect on the first-ever meeting for the EWGPD

Nina Balackova (Czech Republic) David Batchelor (Scotland)

It was very useful for me and I hope I am not sure when it happened but I sud­ that even for the Czech Alzheimer Soci­ denly realized we were seeing the birth of ety too. I was a tired, but happy there! It something big, like opening a window was interesting to hear about other countries, how it through which you could see a tremendous prospect. works in their Alzheimer society and how people with dementia live there. We were surprised to visit the Scottish Parliament. We had a wonderful afternoon there. For me, personally, it was useful as I have been a little sad since February. I see that Mr Alzheimer starts to a little win over me. But, I was very happy in Glas­ gow and with my carer and friend together we had a lot of fun. And I saw many people with dementia how hard-working they are. I admire them! I have new James McKillop (Scotland) energy to fight with my health. What I hadn’t anticipated was how quickly people would gel together, and an onlooker would have imagined we were all old friends. The meetings were conducted at a pace to suit all, and everyone had a chance to contribute Agnes Houston (Scotland) in their own way. Some countries, new to the game, did not think they had achieved much, but in fact, they had I found it inspiring to meet others who done what others took years to do. So I imagine people actively campaign just like we do in the took heart from being on the right track. Did I enjoy it? SDWG. It’s nice to be not alone and to Yes! It is nice to know you are not alone in the dementia know our brother and sister in Europe are world and you can always learn from listening to others. the same as us. Dementia does not respect boundaries People were just so nice and helpful. I like to think all the or country differences. I felt at home and others delegates made a difference in some way and inspired confirmed the reasons why we need to continue and others. As I sat there and looked around, I felt over­ join together to share our knowledge and the old adage whelmed. There was a sense of history in the making. “Knowledge is power” and “that there is strength in Years ago we would never have met. Now we meet as citi­ numbers”. In saying all of this, it was done with laugh­ zens, who are working to improve the lot of people with ter and joy. I felt energised and encouraged and enabled dementia and their carers throughout every hamlet in that I too could continue to live with a diagnosis of Europe. I could tell from the charged atmosphere, that Dementia. I felt it was like a think tank of Dementia – a people were motivated to go back to their respective meeting of minds with the purpose of helping others to countries and try even harder. Some who shared similar attain to be all they can be. cultures and languages, seemed to want to keep in touch.

12 Dementia Issue 11 in Europe June 2012 Prioritising dementia The Alzheimer Europe Magazine

Helga Rohra (Germany) Dermod Slevin (Ireland)

A really historic moment - for the first Before Glasgow, I had never spoken time there was a meeting of a European with anybody else who openly had a working group for people with demen­ diagnosis of dementia. I’ve always found tia. A real highlight in my life, as a dementia activist for this surprising given that so many people are supposed the last few years in Germany I was keen on exchang­ to have it! I felt at home as soon as I arrived in Glasgow, ing ideas with my friends in Europe. I learned a lot how right from the welcome in the hotel lobby and the big we could get involved in programs. A good example to hugs from Jan and Agnes. It was hard to figure out who be followed is the Scottish Dementia Working group – had dementia and who didn’t! There was a lot to take in politicians there understand the dementia as being a over the few days but the atmosphere was so warm and phenomenon more than a problem. I wish we could welcoming. I never felt ill at ease. A huge amount of speak up in the same way in Germany. I wish we had the work clearly went into organising the summit and same chance like in the Netherlands, to have a “carer/ making it so welcoming. I’d really like to thank every­ assistant” for a lifetime, the moment we get diagnosed. one involved. I feel that there is huge benefit to be had I wish we get many enthusiastic young people to work from meeting people in similar situations. It has been a in Alzheimer associations, to promote our cause – like kick in the backside (in a nice way!) to stay active and in Spain. But I am also grateful that my country gives be positive. As was mentioned several times in Glas­ us so many opportunities to foster our still existing gow, a diagnosis of dementia can lead to depression and abilities – compared to the Czech Republic or Slovenia. withdrawal. Lack of good information or support at Those days together gave us affected by dementia a diagnosis is a big problem. I used to be involved in strong feeling of solidarity. Europe – dementia can community organisation, I used to love travelling. overcome boundaries. I am grateful to AE for this Since my diagnosis I hadn’t travelled or been an activist unique opportunity, and many should follow – you all in any way. Now I feel my confidence coming back. living you new life with dementia believe in your abili­ World domination beckons! ties and join us in our working group.

Daphne Wallace (UK)

I did enjoy the meeting very much. It was so interesting to hear about the situation in other EU countries. Some of them are so far behind us with no money to really make much noise! I was disappointed that there were some countries unrepresented where I have friends. I hope that the Working Group continues to meet and goes from strength to strength. I would love to attend the next meeting if that is possible. We are in a situ­ ation of review about how we keep contact with people around the Country who have dementia and are able to participate in increasing understanding of the role of those with an early diagnosis to speak out and campaign and also to educate.

13 Prioritising dementia

NILVAD: a European project to test the efficacy of a new drug for Alzheimer’s disease

Alex Teligadas, Communications Officer, Alzheimer Europe, presents the recently launched NILVAD project. Supported with EUR six million within the European Commission’s Seventh Framework Programme, this project will conduct trials of the drug “nilvadipine” for the treat- ment of Alzheimer’s disease.

Nilvadipine has been in use for many years to Europe and help speed up developments to ad­ treat hypertension. In 2007, researchers at Archer vance care for people with Alzheimer’s disease.” Pharmaceuticals found that the drug also blocks Alex Teligadas, Communications production of the amyloid protein that is believed NILVAD began on 1 January 2012 and is coordi­ Officer, Alzheimer Europe to be central to the Alzheimer’s disease process. nated by Trinity College Dublin. The Phase 3 trial Nilvadipine reduced the development of amyloid will perform a double-blind, placebo controlled plaques in the brain, cleared amyloid from the study to test the efficacy and safety of nilvadipine brain and increased blood flow to the brain. These in 500 subjects with mild to moderate Alzheimer’s results came from laboratory tests on mouse disease over a treatment period of 18 months. models and convinced scientists that a human Men and women aged between 50 and 90 in nine trial would be worthwhile. This Phase 2 trial took European countries will be included in the study. place successfully in 2010 and led directly to the If the trial is successful, nilvadipine will be mar­ current NILVAD project. keted for the treatment of Alzheimer’s disease in Europe. Dr. Brian Lawlor, Project Coordinator, explains “People with Alzheimer’s disease and their carers The consortium consists of 17 partners based in will benefit greatly if this trial is successful as it ten EU member states and in the United States. would represent a significant advance in the area The Project Coordinator is Dr. Brian Lawlor, of Alzheimer’s disease treatments. NILVAD will Professor of Old Age Psychiatry at Trinity College also strengthen Alzheimer research networks in Dublin. He will oversee the activities of more

NILVAD project partners

France centre Hospitalier Régional Trinity College Dublin et Universitaire de Lille University College Cork Germany GABO:mi University College Dublin Universität Ulm Italy mario Negri Institute Greece Aristotelio Panepistimio Luxembourg Alzheimer Europe Thessalonikis Netherlands stichting Katholieke Universiteit Hungary szegedi Tudományegyetem Sweden göteborgs Universitet Ireland molecular Medicine Ireland UK King’s College London Newsweaver USA Archer Pharmaceuticals St. James’s Hospital

14 Dementia Issue 11 in Europe June 2012 Prioritising dementia The Alzheimer Europe Magazine

“People with First meeting of the NILVAD project team, February 2012, Dublin Alzheimer’s disease and their carers will than 40 team members working on the eight work also develop the statistical analysis plan, perform benefit greatly if this packages (WP) that make up the project. the final data analysis and produce the statistical section of the clinical study report. trial is successful as Three of these packages are directly involved in re­ it would represent a cruiting people for the trials, conducting the trials, The other work packages provide essential sup­ significant advance collecting the results and analysing the final data: port such as project management, setting up the in the area of study framework, training and scientific direc­ WP4, directed by Prof William Molloy, will tion. Alzheimer Europe is a partner in WP7, Alzheimer’s disease review the ethical and legal issues regarding which will manage the dissemination and com­ treatments.” recruitment of cognitively impaired adults. Prof munication of information relating to the project. Dr. Brian Lawlor Molloy’s team will ensure that these issues are In addition, Maurice O’Connell, Board Member properly addressed in the project and will also of Alzheimer Europe, sits on the NILVAD Scien­ establish an Ethics Advisory Board for the dura­ tific Board. tion of the study. As of June 2012, the project framework, training WP5, led by Dr. Lawlor, is the platform that will programme and legal/ethical review are all in conduct the clinical trials. This team will obtain development. Authorisation requests to the ethical and regulatory approvals and will oversee national authorities and ethics committees have the test sites. They will also examine any modify­ been submitted. These authorisations are needed ing effects of potential interventions such as frail­ for each country that will host a test site and must ty, nutritional status and social connection on be approved before recruitment begins in Oc­ treatment outcome. tober. A project website (www.nilvad.eu) and a secure intranet have been launched while the first WP6, headed by Prof Leslie Daly, will validate project newsletter is planned for June. the trial design and procedures. The group will

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Sanofi has core strengths in the field of healthcare with seven growth platforms: diabetes solutions, human vaccines, innovative drugs, rare diseases, consumer healthcare, emerging markets and animal health. Dementia Issue 11 in Europe June 2012 Prioritising dementia The Alzheimer Europe Magazine

Debating dementia in the European Parliament

On 28 February 2012, Alzheimer Europe organised its 12th lunch debate in the European Parliament. The debate focused on how to speed up drug discovery for Alzheimer’s disease within the framework of the Innovative Medicines Initiative and the PharmaCog project.

Elisabeth Morin- 2050 this is expected to rise to 115.4 million; (2) the Chartier, MEP (France) societal cost of Alzheimer’s disease in the world is opened the debate calculated to currently be EUR 72 billion, but by on behalf of host, 2040 it will be EUR 144 billion; (3) there is no cure Françoise Grossetête, for dementia. Despite vast amounts of work being MEP (France), by ex­ carried out to develop new treatments, the reality “We need to realise plaining that in Europe is that the last drug approval was nearly a decade the aim of finding there are some 7.3 mil­ ago (memantine, 2003). Of the drugs which have the “right drug, for lion people who live been developed it is found that they work only in the right patient, at with dementia of which some of the people with the conditions and (4) around 75% have there is need for greater collaboration and funding the right time and Elisabeth Morin-Chartier, MEP Alzheimer’s disease. in dementia research. Dr. Vaudano illustrated the with the right dose.” (France) Ms Morin-Chartier stark contrast between research for dementia and Elisabetta Vaudano highlighted the re­ other areas of research such as nuclear fusion for search programme and innovation partnerships as example. At the moment, spending and coordina­ ways in which Europe can aim to improve the qual­ tion for research on dementia is low and fragment­ ity of life. Emphasising the need for Europe to face ed, whereas research into nuclear fusion enjoys challenges together, Ms Morin-Chartier spoke of strong funding and collaboration and the research the Horizon 2020 programme (which has been effort is not fragmented. assigned EUR 80 billion) and the need for world leaders to be driving the research agenda. To overcome such barriers, Dr. Vaudano said that there is a real need for innovation, with new Dr. Elisabetta research models which involve all stakeholders. Vaudano, Principal The idea behind the IMI was to do exactly this by Scientific Manager, having the public sector (represented by the Euro­ Innovative Medicines pean Commission and a budget of EUR 1 billion) Initiative (IMI), Euro­ and the private sector (represented by the pharma­ pean Commission, ceutical industry and matching a budget of EUR presented the current 1 billion) work together in a non-competitive envi­ challenges: (1) There ronment in order to develop a new way forward. are some 35.6 million Dr. Vaudano said that we need to realise the aim of people with dementia finding the “right drug, for the right patient, at the Elisabetta Vaudano, IMI in the world and by right time and with the right dose”.

17 Prioritising dementia

Currently, IMI is financing 30 projects of which harmonisation of protocols and data, a failure to the “Prediction of cognitive properties of new drug identify relevant and accepted endpoints and a candidates for neurodegenerative diseases in early lack of clarity on how biomarkers translate into clinical development” (PharmaCog) project is one. clinical benefit. In addition drugs had been tar­ Alzheimer’s disease is still high in the agenda for geted at a late stage in the disease, leading to poor future IMI initiatives and there will be the launch results. It is now thought that amyloid lowering in 2013 of a new project (EMIF-AD) part of the agents should be given much earlier. The cost of EMIF (European Medical Information Frame­ trials may also hinder progress of drug develop­ work). At this stage, said Dr. Vaudano, the oppor­ ment. Long trials are required for dementia drugs tunity to use the information received has not yet (two years or more) and the cost for this is around been fully realised as each country records data EUR 20 million. differently and has varying standards. However, an opportunity for future research could arise once Dr. Auffret presented how the PharmaCog pro­ the harmonisation process of data has taken place. ject works in practice. Launched in 2010, this five- year project has five objectives: The PharmaCog project was presented by Dr. Jill Richardson, GSK •  to develop and validate pre-clinical and clini­ R&D China, EFPIA cal models with greater predictive capacity to coordinator together increase the effectiveness of the drug discov­ with Dr. Alexandra ery process in Alzheimer’s disease “Long trials are Auffret, PharmaCog • develop and validate translatable pharmaco­ required for Academic Coordina­ dynamics markers to support dose selection dementia drugs (two tor, Marseilles Uni­ •   identify and validate markers of disease pro­ years or more) and versity, France. gression and patient stratification Dr. Richardson said •  gain industry and regulatory acceptance of Jill Richardson, PharmaCog the cost for this is that the main issue, models and markers around EUR 20 despite years of •  develop a pan European network of experts in million.” research, is that we technologies fully translatable from animal to Jill Richardson still do not really human, experts in translational medicine, understand how neu­ drug discovery and mathematical modelling. rodegenerative dis­ eases manifest them­ To carry out these objectives, there are 32 part­ selves and we don’t ners across Europe providing expertise: academic know which are the institutions (advice on science and technology), best targets to pursue. EFPIA companies (Alzheimer’s disease drug dis­ Therefore, there is an covery, archived data, pharmacology expertise, Alexandra Auffret, PharmaCog urgent need for good harmonisation and statistics), SMEs (innovative tools which provide biomarkers and clinical trial authorisation proce­ objective measures to enable diagnosis of patient dures), the European Medicines Agency (advice populations, classification of disease severity, pre­ and information on clinical trials) and Alzheimer diction of treatment outcome and drug response. Europe (communication of results and work on ethical issues). Dr. Auffret said that whilst the Dr. Richardson explained that PharmaCog aims project is indeed a massive challenge, it is also an to take a very broad approach to drug develop­ opportunity to share a vast amount of expertise ment and, in so doing, addresses some of the rea­ and avoid duplication. Innovation, translation sons why late stage trials for Alzheimer’s disease and harmonisation are, said Dr. Auffret, key had not been successful. These included an over- words of this project. focusing on the lowering of amyloid, a lack of

18 Dementia Issue 11 in Europe June 2012 Prioritising dementia The Alzheimer Europe Magazine

Teams collaborate on the ten work packages and had highlighted the importance and need for research is ongoing covering topics such as induced increased funding for research and greater cognitive deficit, intensity of cognitive deficit, predic­ research collaboration in the 2006 Paris Declara­ tion and dose effect, touchscreen technology and tion. She said that she was delighted to see a identification of best markers. All studies are concrete example of how Europe had responded designed to improve the ability to identify successful to this call by supporting this coordinated new medicines and to stop the development of those research effort and she hoped it would result in medicines destined to fail as early as possible. the development of new treatments slowing down the progression of Alzheimer’s disease. Ms Brepoels, MEP (Belgium) asked what we could Ms Lützau-Hohlbein thanked the speakers and learn from the investment levels on dementia said that on a personal note that she had appreci­ research in the US. Ms Vaudano explained that ated finding out what is happening in the area of whilst investment in the US appeared higher, the research as both her mother and her mother- scope of work is often wider in Europe. She said that in-law had lived with dementia. in some areas the US was actually learning from how Europe works and had been surprised that in Europe Ms Morin-Chartier thanked her colleagues who people from different disciplines can work together help to put dementia on the European agenda and in a collaborative way. stressed the importance of policy makers making sure they were engaged to try and understand the Elisabeth Morin-Chartier mentioned the role of disease and to help carers. Support at all levels technology in Alzheimer’s disease treatment and was evident at the debate by the attendance of “All studies are referred to the European discussions on the use of nearly 50 people including MEPs [Heinz Becker designed to improve MRI and the exemption of MRI from the limit (Austria), Frieda Brepoels (Belgium), Sean Kelly the ability to identify values of the revised Directive on Electromagnetic (Ireland), Astrid Lulling (Luxembourg) and successful new Fields. She insisted that it was our responsibility to Marina Yannakoudakis (UK)], MEPs’ assistants, strive towards a European legislation that will allow national policy makers and representatives from medicines and stop MRI to be performed in the same way across all the European Commission, Alzheimer associa­ the development of Members States to avoid inequalities and ensure peo­ tions and pharmaceutical companies. those medicines ple with dementia can be diagnosed properly. destined to fail as Dr. Auffret added that in France there is a lack of fed­ Closing the debate, Ms Morin-Chartier said that eral facilities for research and that access to MRI is a the need to develop partnerships between early as possible.” challenge. researchers in all countries was clear and she Alexandra Auffret thanked the researchers for the work they carry Heike von Lützau-Hohlbein, Chairperson of out. Alzheimer Europe, reflected that Alzheimer Europe

The PharmaCog consortium consists of the following partners coming from 10 different EU Members States:

1. Alzheimer Europe (Luxembourg), 16. Janssen Pharmaceutica (Belgium), 2. AstraZeneca (United Kingdom), 17. Merck (Germany), 3. Boehringer Ingelheim (Germany), 18. Novartis Pharma (Switzerland), 4. Centre National de la Recherche Scientifique (France), 19. Ordine Ospedaliero di San Giovanni di Dio Fatebenefratelli (Italy), 5. Eli Lilly and Company (United Kingdom), 20. Qualissima (France), 6. Exonhit Therapeutics (France), 21. SAS Alzprotect (France), 7. F. Hoffman-La Roche (Switzerland), 22. UCB Pharma (Belgium), 8. GlaxoSmithKline (United Kingdom), 23. Universidad de Murcia (Spain), 9. H. Lundbeck (Denmark), 24. Università degli Studi di Foggia (Italy), 10. Innovative Concepts in Drug Development (France), 25. Università degli Studi di Verona (Italy), 11. Innovative Health Diagnostics (France), 26. Universität Leipzig (Germany), 12. Institut d’Investigacions Miomèdiques August Pi i Sunyer (Spain), 27. Universitätsklinikum Essen (Germany), 13. Institut de Recherche Servier (France), 28. Université de la Méditerranée, Aix-Marseille II (France), 14. Institut National de la Santé et de la Recherche Médicale (France), 29. Université de Lille 2 (France). 15. Istituto di Ricerche Farmacologiche “Mario Negri” (Italy),

19 Prioritising dementia

A snapshot of Alzheimer Europe’s lunch debate in the European Parliament

Jim Pearson (Alzheimer Scotland) and Štefanija Lukič Zlobec (Slovenian Alzheimer Society)

Nenad Bogdanovic (Pfizer) and Anne Arndal (Danish Alzheimer Association) Sean Kelly, MEP (Ireland) and Caroline Collins (Alzheimer Society Ireland)

Marie Lefrançois (Assistant to Françoise Grossetête), Heinz Becker, MEP (Austria) and Patrick Maugard (France Alzheimer and Antoni Gelonch Antonia Croy (Alzheimer Austria) Astrid Lulling, MEP (Luxembourg), (Sanofi) Elisabeth Morin-Chartier, MEP (France)

Dawn Brooker (ALCOVE) and Jean Georges

(Alzheimer Europe)

Maria do Rosario Zincke dos Reis (Alzheimer Portugal) and Andrea Petrucci (FederazioneElisabetta Vaudano (IMI), Marina Yannakoudakis, MEP (UK) and Heike von Lützau-Hohlbein (Alzheimer Alzheimer Italia) Europe)

20 Dementia Issue 11 in Europe June 2012 Policy watch The Alzheimer Europe Magazine

Policy Watch Oana Antonescu MEP (Romania) discusses the situation for people with dementia and their carers in Romania.

Minister Edwin Poots, Minister for Health, talks about the new dementia strategy in Northern Ireland.

Commissioner John Dalli highlights current and future European activities to address Alzheimer’s disease.

21 Dementia and Alzheimer’s Organisation/Alzheimer’s Disease 41 Dementia and austerity disease: Europe takes stock International report, “Dementia: a measures and moves forward public health priority” is given by Maria do Rosário Zincke Dos Reis, John Dalli, Commissioner for Health Yutaro Setoya and Tarun Dua of the Chairperson of Alzheimer Portugal and Consumer Policy, discusses the World Health Organisation. and Board Member of Alzheimer various activities being carried out in 34 The British Prime Minister’s Europe, talks about the impact the fight against Alzheimer’s disease. Dementia Challenge austerity measures are having in 24 The place of dementia in Andrew Chidgey, Alzheimer’s Society, Portugal. the new EU public health considers the commitment given 42 O ne year’s post-diagnostic programme by British Prime Minister, David support A look at Health for Growth, the Cameron, to tackle dementia. Henry Simmons, Chief Executive of new EU Public Health Programme. 35 The view from Romania Alzheimer Scotland, explains how the Contributors include MEPs Françoise Oana Antonescu, MEP (Romania) organisation campaigned to ensure Grossetête (France), Glenis Willmott discusses the challenges faced by that people in Scotland who receive a (UK), Milan Cabrnoch (Czech Republic), people with dementia and their carers diagnosis of dementia are offered one Maria Badia i Cutchet (Spain) and in Romania. year of post-diagnostic support. Angelika Werthmann (Austria). 37 Focus on dementia strategies: 31 Dementia: A public health Northern Ireland priority Edwin Poots, Minister of Health talks An overview of the World Health about the regional dementia strategy in Northern Ireland. PrioritisinPogl icydementia watch

Dementia and Alzheimer’s disease: Europe takes stock and moves forward

The European Commissioner for Health and Consumer Policy, John Dalli, highlights the state of play of current activities and the upcoming health programme in the fight against Alzheimer’s disease and dementia in Europe.

In 2010, there were more than 7 million Euro­ neurodegenerative diseases, which brings together peans1 living with some kind of dementia. While twenty-three European countries seeking to neurodegenerative diseases affect all age groups, align their scientific competencies, medical they are the major cause for disability and strengths and social approaches to tackle Alzhei­ John Dalli, European Commissioner dependence in people aged over 65. mer’s. The European Commission allocated a for Health and Consumer Policy budget of approximately EUR 2 million to this With the increased ageing of the population, initiative. the number of people with dementia is set to rise, reaching 14 million by 2030 and 19 million Research in this area is not new. The European “The European by 20502. This is why the European Commission Commission has been supporting research on Commission has has acknowledged the growing prevalence of Alzheimer’s disease and other dementias since dementia and has called for coordinated action the 1980s. From 1998 to 2006, the European been supporting in its Communication on a European initiative Commission invested EUR 85 million on research on on Alzheimer’s disease and other dementias of Alzheimer research through its Research Alzheimer’s disease July 20093. Commission action pursues three Programmes. The current Seventh Research and other dementias main objectives: acting early to diagnose demen­ Programme covers research on various aspects of tia; improving the knowledge-base and research mental health, prevention strategies for healthy since the 1980s.” coordination; and sharing best practices on car­ ageing, and equality of access to care. Research is Commissioner John ing for people suffering with dementia. also conducted in drug development. In 2008, Dalli the partnership “PharmaCOG”5, made up of 32 In this context, the Commission has set a two- academic and industry actors from 7 countries year joint action between European Member was launched to tackle bottlenecks in Alzheimer’s States called “ALCOVE” to both improve knowl­ disease research and drug discovery. edge on dementia and its consequences and to promote the exchange of information to pre­ Promoting effective prevention and treatment serve health, quality of life, autonomy and dig­ of chronic disease is essential to enable people to nity of people living with dementia and their spend a greater proportion of their lives in good carers4. This joint initiative, funded by the health. The European Commission’s proposal Health Programme, focuses on prevention and for a “Health for Growth” programme illustrates diagnosis, improvement of existing practices of the Commission’s commitment to protect the care, assessing the competence of elderly people health and well-being of its citizens. The Com­ with cognitive impairments and epidemiological mission proposes that the programme focuses data. ALCOVE is further complemented by a on supporting EU Member States in reforming coordinated research initiative on combating their health policies and focuses on four main

22 Dementia Issue 11 in Europe June 2012 Policy watch The Alzheimer Europe Magazine

objectives: developing innovative, efficient and tailored care interventions. This is particularly sustainable health systems; increasing access to important for patients in the last stages of better and safer healthcare; promoting health dementia, as they require specific home and pal­ and preventing disease; and protecting people liative care. from cross-border health threats. The Partnership can further help patients with The Programme will further back up concrete dementia and their caregivers by supporting the actions foreseen within the European Innova­ uptake of a range of technologies and e-health tion Partnership on Active and Healthy Ageing solutions to overcome problems at home. They to funnel innovation into real products, devices reduce risk levels, help patients feel safer and “Promoting and services to benefit older people, including support relatives and caregivers. However, these effective prevention those with dementia. This Partnership aims to solutions are not always affordable or commer­ improve older people’s health and well-being cially viable. The Partnership will also seek to and treatment of through innovation, and focuses on prevention develop interoperable standards that enable peo­ chronic disease is and early diagnosis; care and cure; and inde­ ple with dementia and their caregivers, to benefit essential to enable pendent living and active ageing. Many of the from independent living solutions. In addition, it people to spend a activities identified by the Partnership seek to will launch tele-monitoring programmes target­ address the issue of cognitive impairments in ing people with cognitive impairments, to help greater proportion of older Europeans. dementia patients access the best medical exper­ their lives in good tise in the comfort of their own home and live health.” The Partnership can play a role in fostering more active and independent lives. This in turn Commissioner John collaboration and communication between all should reduce hospital care and help alleviate actors, i.e. care providers, people with dementia, the pressure on public health and social budgets. Dalli the research community, informal caregivers, pharmacists and pharmaceutical industries. To conclude, the European Commission is do­ ing its share to help people with dementia and For instance, health providers and social work­ their families. ers in charge of managing care to dementia people are not always well coordinated. This im­ pinges on the appropriate care delivery and leads 1 www.alzheimer-europe.org/FR/content/.../file/AE_BRO_CONF_ WEB.pdf to inadequate use of resources. The Partnership 2 World Alzheimer Report for 2009 encourages greater cooperation, cross-discipli­ 3 http://ec.europa.eu/health/archive/ph_information/dissemina­ tion/documents/com2009_380_en.pdf nary sharing, new ways of working and trans­ 4 http://www.alcove-project.eu/ parency to secure effective, innovative and 5 http://www.alzheimer-europe.org/Research/PharmaCog

23 PrioritisinPogl icydementia watch

The place of dementia in the new EU public health programme

Françoise Grossetête, MEP (France), Chairperson of the European Alzheimer’s Alliance and Rapporteur for the new EU public health programme, Health for Growth, talks about the importance of addressing neurodegenerative diseases and the issue of ageing within the context of the Programme.

The budget allocation for the “Health for Growth” We are now facing the big challenge of the 21st Programme for the period 2014-2020 is EUR century: the ageing of the population. 446 million, which is an allocation of over EUR Françoise Grossetête, MEP (France) 60 million per year. The Programme objective is It is important that the programme focuses on to concentrate on the main areas in which the neurodegenerative diseases such as Alzheimer’s European Union can bring real added value such disease and other forms of dementia. These are as health. It is written into the EU 2020 strategy chronic diseases with specific characteristics: and aims to boost innovation in healthcare They affect primarily elderly people, lead to a systems and ensure their sustainability while im­ complete dependency of the person with the “The consequences proving the quality of life of the European citizens. disease. These diseases currently affect a large of the ageing of the number of people (over 7 million people suffer population must also These funds will complement a series of health- from some form of dementia in Europe). related measures through the structural funds be anticipated so the and the framework programme for research and In my capacity as Rapporteur, I have been keen necessary resources innovation for the period 2014-2020. for the ageing dimension to be included as part of for the training and the general objective of the programme. qualifications of the The public authorities, the private sector, inter­ national institutions and non-governmental org­ In addition, it seems important to me that the healthcare workforce anisations will be eligible beneficiaries for grants European Innovation Partnership on Active and are put in place.” through co-financing. It is essential that the pro­ Healthy Ageing launched by the European Com­ Françoise Grossetête cedures and accessibility to these funds be as sim­ mission focuses on its three priorities: innovation ple as possible so that the Member States and the in awareness, prevention and early diagnosis; in­ health professional make the best use of them. novation in treatment and healthcare, in particular for neurodegenerative diseases; and innovation to The general constraints that weigh on the public enable active and independent living. finances impose a reform of the health systems in order to manage the costs while optimising the Since the French Presidency of the EU nearly profitability of the sector and innovation. These four years ago, a lot has been done to combat the reforms are essential for the health systems to scourge presented by Alzheimer’s disease and respond to the increasing demand for healthcare other forms of dementia. caused by the ageing of the population, and to continue to offer quality healthcare to future This third health programme will also contrib­ generations. ute to fighting age-related diseases by focussing

24 Dementia Issue 11 in Europe June 2012 Policy watch The Alzheimer Europe Magazine

both on prevention and innovation. By keeping port to the patients and their carers. This will help the individuals in good health for as long as address these latter needs and support the possible as well as maintaining their capacity to Member States in their willingness to maintain remain physically and socially active, we will also the sustainability of their health systems. be able to optimise their positive impact on pro­ ductivity and competitiveness. The Programme must better integrate the ageing of the population with age-related diseases. This is By clearly defining the objectives, the programme a horizontal theme which answers three of the thus seeks to avoid duplication and make better use programme’s objectives: of the dwindling financial resources. As a matter of fact, we must avoid having a list of measures be­ • objective 1 (contribute to innovative and sus­ cause this would lead to scattering of the available tainable health systems) resources and it is not the aim of the programme to • objective 2 (increase access to better and safer provide an exhaustive list of pathologies. healthcare for EU citizens) and “Alleviating • objective 3 (prevent diseases and promote good the suffering of The financial split between the programme’s health). four goals (boost innovation, improve access to the sick and their better and safer healthcare, boost diseases preven­ The consequences of the ageing of the popula­ carers is a cause tion and protect the citizens from cross-border tion must also be anticipated so the necessary that unites us all.” health threats) must not be static. Classifying resources for the training and qualifications of the Françoise Grossetête these objectives and granting each of them a pre­ healthcare workforce are put in place. The Euro­ defined budget line could limit the scope of some pean Union will have to promote the creation of projects. new jobs in order to better respond to the current societal challenges, such as home care, institu­ Regarding the prevention objective, risk factors tions specifically devoted to dependent people (be must be better identified so that more efficient they old or young), and regularly assess them and strategies are put in place. The main risk factors – adjust them to the real needs of the sick and their including unhealthy eating habits and sedentary carers. The problem of dependence and ageing of life-style – must be taken into account for appro­ the population will also need to be taken into priate and efficient prevention of chronic diseases. account and regularly assessed too.

To-date, it is still difficult to understand how to We have to combine intelligence and scientific prevent age-related diseases for which no cure is talents and ensure they are provided with the best available on the market. It is imperative to possible support available. Alleviating the suffer­ include these diseases in the programme, and ing of the sick and their carers is a cause that share best practices between the Member States in unites us all. It is far too important for national the field of early diagnosis, access to treatment particularities and administrative slowness to (pharmacologic or non-pharmacologic) and sup­ prevail.

25 PrioritisinPogl icydementia watch

Shadow Rapporteurs for the Environment, Public Health and Food Safety Committee, Glenis Willmott, MEP (UK) and Milan Cabrnoch, MEP (Czech Republic), consider how the Health for Growth Programme can tackle the challenges of the ageing population and offer solutions to the rise in Alzheimer’s disease and other dementias.

Glenis Willmott, MEP (UK) Our next step is to co-ordinate our research into During this time of economic crisis it is vital that the disease, something that has already begun with we have a strong public health programme from the Joint Programming Initiative, the first of its the EU. It’s not just financial problems that we’re kind in the EU. Although research projects them­ facing, people’s health is suffering too. In Greece selves will be funded with other EU money, the the suicide rate has increased by 40% over the last Health for Growth Programme can provide a year. In my own country we are seeing our framework to pull this research together and use National Health System pulled apart. it in the best interest of dementia patients.

And while the economic crisis loudly rumbles on, And finally, with the data and the research be­ a much quieter crisis is happening around us, in hind us, we have to look at policies. How can we Glenis Willmott, MEP (UK) every country in the European Union. Our popu­ make sure people are diagnosed early with the lations are ageing, and with that comes more and disease? How do we ease the burden on the loved more people suffering from neurodegenerative ones of the patient? How do we remove the stig­ “The Health for diseases. Already over 35 million people are living ma from dementia? While these decisions are Growth Programme with Alzheimer’s disease and other dementias made at a national level, the Health for Growth worldwide. The World Health Organisation esti­ Programme can provide a forum for national can provide a forum mate that this number will double by 2030, and experts to share their experiences of what works for national experts triple by 2050. well, and what has gone wrong. This work has to share their begun under the ALCOVE Joint Action experiences of what The Health for Growth Programme will be vital Programme, and should continue in the future, in helping EU countries face up to this huge chal­ with funding from the Health for Growth works well, and what lenge. Of course each government has responsibil­ Programme. Together, European countries can has gone wrong.” ity for their own healthcare system and how they find the way to tackle the challenges posed by Glenis Willmott care for their aging population. But by working at Alzheimer’s and other dementias. EU level we can provide real added value. The Health for Growth Programme is not perfect The first step is something that seems really sim­ as it stands. The name alone is a big problem, ple; we need to share data about dementia. Because because health should not be about growing our before you can really tackle a disease you need to economies. But that aside, we can achieve some­ know all the key facts about it; how many people thing with this Programme. Of course the modest are suffering from Alzheimer’s and other demen­ funding cannot get very far on its own; we need tias, at what stage in the disease they were diag­ commitment from governments, researchers, nosed, what different types of treatment they are medical professionals, patient groups and NGOs. receiving, who is caring for them. If this data is But this is an opportunity for us to come together collected in a similar way, allowing EU countries to take on one of the biggest challenges we face. to share and compare their results, it is a huge first step in understanding dementia in Europe.

26 Dementia Issue 11 in Europe June 2012 Policy watch The Alzheimer Europe Magazine

Milan Cabrnoch, MEP (Czech Republic) ity long-term care, which is the precondition for The multi-annual programme of the European dignity and quality of life for people with Alzhei­ Union for promotion of health is one of the key mer’s disease. The support of NGOs and associa­ documents in this area. Health is not just a pre- tions of patients and their relatives helps people condition for growth but also for a satisfying and with disabilities to better cope with restrictions happy life of the individual as well as for society as caused by the disease. a whole. The regulation speaks about the development of The Health for Growth Programme sets out common solutions and tools to increase the qual­ goals and objectives for the next seven years ity of health care and safety of patients. Such solu­ (2014-2020) and focuses on selected issues, where tions to which individual member states sign up it is reasonable to expect the European added can significantly help in the effort to achieve value. The European Commission, which has better quality and safer care. submitted the proposal, is aware of the limited competencies of the European Union in this field. Each of us wishes to live at home with their rela­ Policy in the area of health care lies in the compet­ tives. The modern technologies help chronically ence of Member States. The EU can support and ill and often lonely patients to live at their home, complement national policies, support and instead of living in an institution. encourage cooperation between member states Milan Cabrnoch, MEP (Czech Republic) and work actively in the areas, where the Member One of the most important aspects of the States cannot act individually or where the com­ proposed regulation is the aim to strengthen the mon “European” solution is more advantageous position of the patient. An active role of the than solutions at the level of individual states. patient in health care, prevention of disease as “One of the most well as in its treatment and long-term care is the important aspects of One of the challenges our society is facing is key to a more effective use of human and financial demographic ageing. We live longer than any time resources. Patients and their families need easy the proposed before and this is a great success. Longer life is the access to information. The communication regulation is the aim result of extraordinary progress in medicine and, between patients and health care facilities should to strengthen the at the same time, of a large improvement in living be on a continual basis. position of the conditions. An important part of the proposed regulation is patient.” With ageing the prevalence of Alzheimer’s disease an effort to support the development of human Milan Cabrnoch and other dementias increases. The number of those resources, which means ensuring the availability in need of long-term care and support is thus rising. of qualified doctors, nurses and nursing assis­ tants. At present, there is shortage of such workers The EU programme, Health for Growth, is im­ in some countries. portant for Alzheimer’s disease for several reasons. From my point of view, the EU can be most help­ The Programme supports innovation and interna­ ful and efficient in addressing Alzheimer’s disease tional cooperation in the area of science and re­ especially in the areas of science and research to search. This is the best way to help us find effective find the real causes of the disease and effective treatment for Alzheimer’s disease. treatment, to improve the quality and safety of care with an emphasis on strengthening the role The international exchange of experience sup­ of the patient and dignity and quality of his or her ports dissemination of successful models of qual­ life, if possible, in the home environment.

27 PrioritisinPogl icydementia watch

Maria Badia i Cutchet, MEP (Spain) and Angelika Werthmann, MEP (Austria), respectively Rapporteurs for opinion for the Committee on Industry, Research and Energy and the Committee on Budgets, talk about Alzheimer’s disease within the framework of the Health for Growth Programme.

Maria Badia i Cutchet, MEP (Spain) tion sectors. Hence, putting vulnerable groups – The Health for Growth Programme arises at a time such as elderly people, who are most likely to suffer in which Europe has to face great challenges. Chal­ from dementia diseases – in the spotlight, becomes Maria Badia i Cutchet, MEP (Spain) lenges linked to globalisation, to the fragile eco­ essential. nomic situation and to an ever-ageing society. In this context, investing in people’s health is the way Moreover, additional actions can be carried out to make growth possible and health systems sus­ under the Health for Growth programme, espe­ tainable. cially those concerning white jobs strategies related to the flagship initiative “New skills for new jobs”. “It is essential The Commission proposal presents a wide range of Most of people with dementia are looked after in to take advantage initiatives to strengthen EU’s actions in different their own homes by informal carers or relatives. health-related areas. To that extent, the European Therefore, it is crucial to provide proper training of the Health for Parliament points out in its report the fields where and life-long learning to health sector workers, Growth Programme improvements can be made to widen the scope of particularly those developing specific assistance to translate the Programme’s proposals. care and those involved in geriatric medicine. the research First of all, age-related diseases such as Alzheimer’s For all these reasons, age-related diseases need to breakthroughs disease and other forms of dementia, that require be pushed forward on the EU political agenda to into medical further research to set early detection measures become top priorities. Taking advantage of the applications and improve the living conditions of the affected European Year of active ageing, the European and get them persons, is one of the fields to prioritize. Therefore, Parliament calls the European Commission to it is essential to take advantage of the Health for make Health for Growth Programme a platform to coordinated Growth Programme to translate the research support public health systems as they are an essen­ across the EU.” breakthroughs into medical applications and get tial mechanism to keep social welfare, tackle Maria Badia i Cutchet them coordinated across the EU. These actions will inequalities and offer all the required support to help to enhance the population’s health in Europe, the most vulnerable. facilitating cooperation and making health systems stronger and more sustainable. In any case, age-related diseases, in the context of ageing societies, are indeed an issue of common Secondly, Health for Growth fosters new chances concern across Member States. to fight inequalities in the health sector, particular­ ly when they come to different regions and popula­

28 Dementia Issue 11 in Europe June 2012 PrioritisinPolicy watcgh dementia The Alzheimer Europe Magazine

Angelika Werthmann, MEP (Austria) bers), it is commonly accepted that the number of The “Health for Growth” programme is an those directly affected by the disease is estimated extrem­ely useful tool for the European Union to be 20 million. This has an immense impact on which does not only serve to improve the well- the physical and mental health of this group of being of the European citizens but also emphasises people, on their social life, as well as on their work­ the links between economic growth and a healthy ing-life and their pension rights. It also results in a population to a greater extent than the previous huge rise on the public costs of the EU. programmes. Consequently, it provides a clear EU- added value and should therefore be made known An early diagnosis of any form of dementia to our citizens and used as such. would definitely be more cost-effective and, even more importantly for the individuals concerned, it It is commonly recognised that a healthy popula­ would contribute to a healthier and better quality Angelika Werthmann, MEP tion reduces public costs of the EU and Member of life for all the people concerned. (Austria) States. The “Health for Growth” programme has some We have to keep in mind that Alzheimer’s disease clear general objectives, including the sustainabili­ “It is commonly is the most frequent form of dementia. In the Euro­ ty of the health systems as well as the improvement accepted that pean Union 7.3 million people are diagnosed with of health in the EU citizens. the number dementia and about 50 to 70 percent of these have Alzheimer’s disease1. The financial support provided by the pro­ of those directly gramme is essential to further develop research affected by the At the same time, the European population is an both at national and European level, whilst allow­ disease is estimated ageing one and this poses serious public health, ing for the fact that the situation regarding innova­ to be 20 million.” social and thus economic challenges. tion differs in the individual Member States. Angelika Werthmann Alzheimer’s disease is a chronic, unpreventable, Due to these aforementioned important facts, age-related and terminal disease and the number Alzheimer’s disease, in my view, would definitely of people with dementia will increase. Thus, we qualify for inclusion on the “Health for Growth” will all have to deal with this challenge. Programme.

1 “Der Wert des Wissens”. Ergebnisse der Alzheimer Europe Studie When one takes into account the informal carers in fünf Ländern zur öffentlichen Wahrnehmung von Alzheimer of people with dementia (usuallly family mem­ und Ansichten zum Stellenwert der Diagnose, pg. 5

29 Overcoming everyday challenges in Alzheimer’s disease

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20766_PF_Ad_Color_180x112mm.indd1 1 5/13/08 9:47:05 AM 30 Dementia Issue 11 in Europe June 2012 Policy watch The Alzheimer Europe Magazine

Dementia: a public health priority

On 11 April 2012, the report “Dementia: a public health priority” jointly developed by World Health Organisation (WHO) and Alzheimer’s Disease International was launched. Yutaro Setoya, Technical Officer and Tarun Dua, Medical Officer, Department of Mental Health and Substance Abuse, World Health Organisation, highlight the main out- comes of the report.

The report “Demen­ Development of the report tia: a public health pri­ In all, well over 100 experts from all WHO ority” is the first global regions contributed to development of the report. “There is report on dementia by The information included in the report was an urgent need to WHO, and has been derived from three primary sources: improve the well received by many awareness and academics and policy • four working groups reviewed existing litera­ makers as well as ture and collected case examples on the epide­ understanding of covered widely by the miology of dementia, national policies, plans dementia across all media. and resources for dementia, awareness and the levels of society.” health workforce and caregivers Yutaro Setoya and • a survey of available resources in 30 countries Objectives of the report selected to represent high, middle and low Tarun Dua The main objectives of the report are to raise incomes across the six WHO regions awareness of dementia as a public health priority, • information gathered at a stakeholder meeting to articulate a public health approach and to held in Geneva in September 2011, which was advocate for action at international and national attended by representatives from 16 countries, levels. The target audiences are national and state representing public health, academia and ministries of health, policy-makers health and advocacy organisations. social sector planners, as well as academics and researchers. Summary of the report The key messages of the report are summarised The report provides information and aims to in table 1. The report highlights the burden of the encourage countries to be prepared by strength­ disease in terms of the increasing number of peo­ ening or developing policy and implementing it ple with dementia and the economic cost, and through plans and programmes which enhance provides available knowledge of dementia on the dementia care in order to improve the social well- health and social system, support of the caregiv­ being and quality of life of those living with ers and awareness raising. dementia and their caregivers.

31 PrioritisinPogl icydementia watch Table 1: Key messages of the report • Dementia is not a normal part of ageing. • 35.6 million people were estimated to be living with dementia in 2010. There are 7.7 million new cases of dementia each year, implying that there is a new case of dementia somewhere in the world every four seconds. The accelerating rates of dementia are cause for immediate action, especially in low- and middle-income countries where resources are few. • The huge cost of the disease will challenge health systems to deal with the predicted future increase of prevalence. The costs are estimated at US$ 604 billion per year at present and are set to increase even more quickly than the prevalence. •  People live for many years after the onset of symptoms of dementia. With appropriate support, many can and should be enabled to continue to engage and contribute within society and have a good quality of life. • Dementia is overwhelming for the caregivers and adequate support is required for them from the health, social, financial and legal systems. • Countries must include dementia on their public health agendas. Sustained action and coordination is required across multiple levels and with all stakeholders – at international, national, regional and local levels. • People with dementia and their caregivers often have unique insights to their condition and life. They should be involved in formulating the policies, plans, laws and services that relate to them.

Burden of dementia Current global costs for dealing with dementia The number of people living with dementia are estimated to exceed US$ 600 billion per year worldwide in 2010 was estimated at 35.6 million. (Western Europe US$ 210 billion, Central Europe This number will double by 2030 (65.7 million) US$ 14 billion, East Europe US$ 14 billion). This and more than triple by 2050 (115.4 million). Cur­ estimate includes the cost of providing health and rently 58% of people with dementia live in low- social care and the reduction or loss of income of and middle-income countries: this proportion is patients and caregivers. projected to rise to 71% by 2050 (see figure). West­ ern Europe is the region with the highest number Dementia policy and plans of people with dementia (7.0 million, with Ger­ Governments worldwide need to respond to the many (1.5 million), France (1.1 million), and Italy growing burden of dementia, and national “Governments (1.1 million). The total number of new cases of approaches should be clearly articulated in either worldwide need to dementia each year worldwide is nearly 7.7 mil­ a stand-alone dementia policy or plan or by inte­ respond to the lion: the equivalent of one new case every four grating a plan and policies within health, mental growing burden of seconds. health or old-age policies. Some high-income countries like Denmark, France, Netherlands, dementia.” Figure 2: Growth in numbers of people with dementia in high-income and low- and middle- Norway, Switzerland and UK have launched Yutaro Setoya and income countries (source: Dementia: a public health national/subnational policies, plans, strategies or Tarun Dua priority; WHO, 2012) frameworks to respond to the impact of demen­ tia. In 1992, Sweden developed a social policy on Numbers of people with dementia (millions) dementia arguing for a “normalisation process”, making a radical change over previous theories 140 and in 2010 presented specified national guide­ lines for dementia care. In addition, several other 120 countries such as Belgium, Cyprus, Czech Repub­ 100 lic, Finland, Luxembourg, Malta and Portugal have initiated steps towards the development of a 80 national dementia policy or plan. 60 The priority areas of action that need to be ad­ 40 dressed within the policy and plan include raising 20 awareness, timely diagnosis, commitment to 0 good quality continuing care and services, care­ 2010 2020 2030 2040 2050 giver support, workforce training, prevention and research. A sustainable financial commitment is Year crucial for the successful implementation of plans Low- and middle-income High-income and programmes. Universal social support through pensions and insurance schemes could

32 Dementia Issue 11 in Europe June 2012 Policy watch The Alzheimer Europe Magazine

provide protection to people with dementia and There is an urgent need to improve the aware­ their families. ness and understanding of dementia across all levels of society as a step towards improving the Health and social systems development quality of life of people with dementia and their Governments need to develop and improve caregivers. Governments have a role to play in services for people with dementia, focusing on resourcing public awareness campaigns and in earlier diagnosis, provision of support in the com­ ensuring that key stakeholders are involved in munity and a responsive health and social care sec­ such campaigns. tor. Improved community support will assist fami­ lies to provide care for longer and to delay or Expected impact of the report reduce reliance on high-cost residential care. The launch of the report and its findings were well covered by the media (including social media Building the capacity of the workforce is essen­ such as twitter and facebook) in high-income tial to improve knowledge and awareness of the countries as well as low- and middle-income benefits of a coordinated response to care. countries. The report provides the knowledge Dementia care, long-term care and chronic dis­ base for a global and national response to facili­ ease management incorporating a multidiscipli­ tate governments, policy-makers and other stake­ nary team should form part of professional edu­ holders to address the impact of dementia as an cation and should be supported by the increasing threat to global health. This is particu­ development of appropriate practice guidelines. larly so for low- and middle-income countries, which face the largest growth in numbers of per­ Support for informal care and caregivers sons with dementia and have limited infrastruc­ “National action Dementia has an immense impact on the lives of ture and health workforce capacity to address is essential for the family, and particularly on the person who health and social problems. systems change to takes the primary role in providing care. Most become a reality.” care is provided by family and other informal A range of actions is required to improve care support systems in the community and most and services for people with dementia and their Yutaro Setoya and care­givers are women. A range of programmes caregivers. These actions include advocacy and Tarun Dua and services have been developed in high-income awareness-raising, developing and implementing countries to assist family caregivers and to reduce dementia policies and plans, health system strain. The beneficial effects of caregiver interven­ strengthening, capacity-building, supporting tions in decreasing the institutionalisation of the caregivers and research. The actions need to be care recipient have been clearly demonstrated. context-specific and culturally relevant. National action is essential for systems change to become a Support is needed to enable informal caregivers reality. The time to act is now by: to be able to continue in their role for as long as possible. Support includes information to aid • promoting a dementia friendly society understanding, skills to assist in caring, respite globally to enable engagement in other activities and • making dementia a national public health and financial support. social care priority worldwide • improving public and professional attitudes to, Awareness-raising and advocacy and understanding of, dementia Despite the growing impact globally, a lack of • investing in health and social systems to understanding of dementia contributes to fears improve care and services for people with and to stigmatisation. For those who are living dementia and their caregivers with dementia (both the person and their family), • increasing the priority given to dementia in the stigma contributes to social isolation and to the public health research agenda. delays in seeking diagnosis and help.

33 PrioritisinPogl icydementia watch

The British Prime Minister’s Dementia Challenge

Andrew Chidgey, Director of External Affairs, Alzheimer’s Society, considers the commitment given by British Prime Minister, David Cameron, to tackle dementia.

Andrew Chidgey, Director of On 26 March the British Prime Minister David a series of commitments to improve life for people External Affairs, Alzheimer’s Society Cameron made a keynote speech about dementia with dementia and their carers. These include: at the Alzheimer’s Society’s Dementia 2012 confer­ • more than doubling UK government invest­ ence and launched “The Prime Minister’s Chal­ ment in dementia research from EUR 32 mil­ lenge on Dementia”. lion a year to EUR 82 million by 2015 • including dementia checks in routine health In the first ever speech by a British Prime checks for people over 65 “[Dementia] is a Minister on dementia Mr Cameron stated his per­ • committing that there will be local targets for personal priority of sonal commitment to action, recognising dementia diagnosis by April 2013 mine, and it’s got an as a challenge that needs tackling in the same way • committing to create dementia friendly villages, as other big challenges: towns and cities across the country working ambition to match. with businesses That ambition: “We need an all-out fight-back against this disease; • government funding for continual dementia nothing less than for one that cuts across society. We did it with cancer in awareness campaigns up to 2015 Britain to be a world the 70s. With HIV in the 80s and 90s. We fought the • agreeing a target for 10% of people with stigma, stepped up to the challenge and made mas­ dementia to be in clinical trials. leader in dementia sive in-roads into fighting these killers. Now

research and care.” Prime Minister’s we’ve got to do the same with dementia. challenge on dementia Three champion groups have been Delivering major improvements in David Cameron This is a personal priority of mine, and it’s dementia care and research by 2015 appointed to consider how to meet the got an ambition to match. That ambition: commitments set out and these groups will nothing less than for Britain to be a world have to report to Mr Cameron by Septem­ leader in dementia research and care.” ber 2012 with an action plan and then report again on progress in March 2013. On the day of the Prime Minister’s speech the Alzheimer’s Society published As part of the Prime Minister’s Chal­ the report “Dementia 2012”, setting out current lenge on Dementia the Alzheimer’s Society has evidence on how well people are living with de­ taken the lead in working with organisations mentia. The report shows mixed progress since including banks, shops the police and fire brigade the publication of the National Dementia Strategy to look at what can be done to create dementia for England in 2009. Public awareness about de­ friendly communities. The Alzheimer’s Society is mentia is higher and more people are going to also working with partners in England’s Dementia specialist memory services. However, diagnosis Action Alliance to create local dementia action rates remain stubbornly low and many families alliances of many organisations to lead change. report not being able to get the information and the support they need. For more information about the Prime Minister’s Challenge on Dementia please go to: http://www.dh.gov. uk/health/2012/03/pm-dementia-challenge/ David Cameron, In responding to the report at the Dementia 2012 If you would like to find out more please contact British Prime Minister conference the British Prime Minister announced [email protected]

34 Dementia Issue 11 in Europe June 2012 Policy watch The Alzheimer Europe Magazine

The View from Romania

Oana Antonescu, MEP (Romania) and member of the European Alzheimer Alliance speaks with Alzheimer Europe about the challenges and situation for people with dementia in Romania.

Alzheimer Europe (AE): Ms Antonescu, what Netherlands, Norway, Sweden and the UK are the key challenges that people with dementia (England, Northern Ireland, Scotland and and their carers face in Romania? Wales) and create a National Alzheimer’s Plan?

Ms. Oana Antonescu (OA): In my opinion, the OA: I hope that Romania will follow the exam­ key challenges that people with dementia and ples of other European countries to establish and their carers face in Romania are the difficulties implement a National Alzheimer’s Plan as soon as encountered in the process of early diagnosis as possible. If Romania is to bridge the already seri­ well as the continued increase of the informal ous gap in terms of healthcare infrastructure and costs that bear on the families of people suffering sanitary policies pertaining to the care of people from dementia. Moreover, many communities are suffering from Alzheimer’s disease or other men­ faced with a severe lack of local services. Cur­ tal illness, detailed and thorough public policies Oana Antonescu, MEP (Romania) rently, there are no legal provisions regarding the such as a National Plan are desperately needed. rights of the patients or their caregivers. “Romanian policy AE: What do you believe the three policy pri- makers should make AE: Governments across Europe are starting orities should be for Romanian policy makers to to pay more attention to the demographic improve the lives of people with dementia and dementia a priority changes in our societies and the resulting their carers in your country? on the general increase in the number of people with dementia political agenda.” in the future. Are there similar discussions in OA: Firstly, I think that the policy priorities for Oana Antonescu your country on a governmental or parliamen- Romanian policy makers should make dementia tary level? a priority on the general political agenda. Fur­ thermore, appropriate laws are needed to protect OA: The Romanian Alzheimer Society took the the people with dementia from the illness, as well initiative to create the Romanian Alzheimer as their carers. Moreover, Romania needs to step Alliance. The main purpose of the Romanian up its efforts in order to create a national network Alzheimer Alliance is to determine similar of services for early diagnosis and to provide ade­ discussions in my country on a governmental and quate and/or affordable support services, such as parliamentary level in order to set up a National home help, day care and residential care. Last, but Alzheimer’s Plan. The ageing process of the not least, we need to set up facilities for family Romanian population means that the number of support (counseling, education, support groups) people with dementia will treble and this increase and national educational programmes for the is reflected throughout Eastern Europe. The training of professional carers. dementia epidemic will pose serious challenges to Romania’s health and social budgets. AE: A last question on the need for a European response to the growing numbers of people with AE: Do you believe that Romania will follow dementia. Would you support the development the example of Denmark, Finland, France, the of a European Action Plan in this field and, if

35 PrioritisinPogl icydementia watch

so, what should the priorities for such collabo- other forms of dementia. Last, but not least, we ration be? need to promote the training and development of care services that will provide psychosocial inter­ OA: I think that is very important that all ventions added to the pharmacological ones. elected MEPs support a European Action Plan in line with the ones that are already in place for there were 207,789 people with dementia cancer, human immunodeficiency virus (HIV) in Romania in 2006 and heart diseases. In addition, we should also 80,000 find ways to stimulate research in neurodegenera­ 70,000

tive disorders and to identify new modes of treat­ 60,000 ment (such as programmes that stimulate cogni­ 50,000 tive functions and hence slow down the progression of dementia). It is necessary at the same time to 40,000 create medical technologies to support people with 30,000

dementia, their families and carers. 20,000

10,000 The national and European authorities need also to devote resources for the promotion of the 0 30 - 59 60 - 64 65 - 69 70 - 74 75 - 79 80 - 84 85 - 89 90 - 94 95 + “healthy lifestyle for a healthy mind” concept, as Men Women it is widely acknowledged that a healthy lifestyle Nb. Prevalence figures for 3-59 age group from EURO DEM (Hofman et al) may delay or prevent Alzheimer’s disease and and for 60+ age group from EuroCoDe (Reynish et al).

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JJMBth8031980-Advertentie_Alzheimer_112x180.indd 1 02/05/12 12:06 36 Dementia Issue 11 in Europe June 2012 Policy watch The Alzheimer Europe Magazine

Focus on Dementia strategies: Northern Ireland

In November 2011, the Minister for Health, Edwin Poots launched “Improving Dementia Services in Northern Ireland, A Regional Strategy”. In this article Alzheimer Europe speaks with Minister Poots about the reasons behind the launch, the priorities of the Strategy, the important role which patient groups must play and how European collaboration can help people with dementia and their carers.

Alzheimer Europe (AE): Why did you launch Better outcomes for people living with dementia the Dementia Strategy for Northern Ireland? can be achieved when we come to understand Minister Edwin Poots how to delay the onset of dementia; when we have Minister Poots (MP): Dementia is of increasing better ways to diagnose it early and when we have importance to Government, to our communities, effective treatments for dementia alongside high to our families and to the individuals who have quality care. dementia – it is a major concern for us all – the “I am confident that scale of the problem is increasing in accordance I want to ensure that people with dementia are we have produced a with our ageing population. treated with awareness and respect, especially by those providing services, and that they are sup­ practical, realistic In Northern Ireland we have the fastest growing ported to maintain their independence for as long and achievable elderly population in the UK. Currently, over a as possible. I believe that the Strategy can help Strategy for people quarter of a million men and women are of a pen­ shape the development of excellent services for with dementia.” sionable age, which is nearly one in six of our people with dementia. population. By 2028 that will have increased to Minister Poots nearly one in five and by 2050, nearly one in four. AE: What do you see as the main priorities and challenges of the Strategy? Demographic changes have a very specific impact on demand for Health and Social Care services. As MP: Meeting the increasing demand for demen­ life expectancy rises, the number of people affected tia support services will require everyone from by conditions associated with old age will increase Health & Social Care professionals, voluntary and dramatically. Based on rates from across Europe, community organisations, and service users and we may see dementia numbers in Northern Ireland carers, to work together to develop more efficient rise from the current estimate of 19,000, to around and effective systems of care, and to plan and 60,000 by 2051. implement better treatment and support pro­ grammes. Our goal must be to ensure that people with dementia are given every chance to live their lives For those with a diagnosis of dementia, the to the fullest capacity and as independently as Strategy requires us to look critically at the way possible. To help achieve this I launched the we are delivering services. We all must ensure Dementia Strategy in November last year. that it is not only what people with dementia and

37 PrioritisinPogl icydementia watch

What I expect from the Strategy…

Carol Hegarty is a 26 year old carer. “My mum was 64 when she was diagnosed with Alzheimer’s and I was in my early twenties. People with dementia are still special to their families and friends and they need to know and feel that they are valued, regardless of the effects of their illness. I want the Dementia Strategy to support people like my mum to keep as well and independent as possible and me to care for her as much as I can.”

their carers have said they want and need, but that the things that concern people the most. it is supported by evidence of its effectiveness. I am confident that we have produced a practi­ The key themes of our Strategy are: cal, realistic and achievable Strategy for people with dementia, one which is designed to deliver • prevention - there is some scope to prevent or the best services and support arrangements we delay the onset of dementia through a healthy can, tailored to the individual’s particular needs lifestyle approach and reduction in cardiovas­ and circumstances. And we must always remem­ cular risk factors ber that simple interventions can often have very • raising awareness and addressing stigma associ­ important and significant outcomes. ated with the condition • access to early diagnosis, enhancing existing AE: What role do you see patient groups play- memory services to agreed commissioning ing in implementing the strategy? standards to provide assessment, diagnosis, “The involvement of information and support MP: When I launched the strategy last year I people living with • staged approach to care and support as the con­ tasked the regional Health and Social Care Board dementia was at the dition progresses, with the aim of maintaining and the Public Health Agency in Northern Ire­ heart of the daily living and independence as far as possible; land with taking the strategy forward and imple­ • improving staff awareness and skills to respond menting its actions. development of our appropriately to people’s needs strategy.” • redesign of services to shift care as far as possi­ The first stage of this process is to establish a Minister Poots ble to people’s own homes and avoid admission steering group to oversee this work. This will in­ to hospital or care home where possible and clude looking at how best to include people living • the need for worldwide research into causes, with dementia, and their carers, so that they are cure and care for dementia. actively involved in the work being done to im­ prove the services they use. Also underpinning the Strategy has been the development of a set of Values & Principles, which This is a very important part of the process. The are considered key to guiding the future develop­ involvement of people living with dementia was ment of services for people with dementia and the at the heart of the development of our strategy. people who care for them. These are: For example, the Alzheimer’s Society carried out a pre-consultation exercise with service users and • dignity and respect carers to help inform the Strategy at an early • autonomy stage. This was titled the “Listening Well” Report. • justice and equality • safe, effective, person-centred care Also, accompanying the public consultation was • care for carers and a targeted exercise with service users and carers, • skills for staff. carried out by the Dementia Services Develop­ ment Centre. We must continue in this manner as As you can see there has been a focus through we move forward with implementing the strategy the development process on creating a Strategy and I am confident that we will do so. that is centred on the person, aimed at addressing

38 Dementia Issue 11 in Europe June 2012 Policy watch The Alzheimer Europe Magazine

What I expect from the Strategy…

Theresa Clarke is 71 and was diagnosed with dementia 2 years ago. “I have dementia and I am still a person. I’d like to see the Strategy make a real change in attitudes, particularly in people providing health and social care. I want to be treated with respect and care at every stage, just like every one of the 19,000 people who currently have dementia in Northern Ireland.”

AE: Do you see a need for greater European Any developments resulting from research into collaboration on dementia? this condition, whether they are made locally or internationally, will benefit people living with MP: Greater collaboration will undoubtedly lead dementia everywhere. to the development of better services for people liv­ ing with dementia and their carers. But it is not just research that can benefit from collaboration. The impact of dementia in Northern I believe one of the areas that can greatly benefit Ireland, in Europe, and indeed world-wide, calls from collaboration is research. Research into for a co-ordinated approach in all aspects of tack­ dementia is vitally important if we are to provide ling this condition, and we can greatly improve the improved diagnosis, more effective treatments and lives of those affected most through the sharing of better outcomes for people living with dementia. good practice and dissemination of new ideas.

Alzheimer’s Society has been a key participant in the development of the Dementia Strategy. Elizabeth Byrne McCullough, Policy & Public Affairs Officer, speaks with Alzheimer Europe about the Society’s role in developing the Strategy and the challenges ahead.

Alzheimer Europe (AE): What role was played November 2009. Recommendations from Listening by Alzheimer’s Society in development of Well form a key part of the Strategy which the Dementia Strategy? Minister for Health, Edwin Poots presented to the Northern Ireland Assembly in November 2011. Elizabeth Byrne McCullough (EBM): Since the Northern Ireland Assembly Executive made its for­ AE: What impact will the Dementia Strategy mal commitment to develop a dementia strategy in have and what challenges does Alzheimer’s Soci- 2008, Alzheimer’s Society has been in the thick of ety see? the project set up by the Department of Health, Social Services and Public Safety (DHSSPS). Fur­ EBM: The necessity for a strategic approach to thermore, the Society has played a pivotal role in the challenge of dementia is reflected in the policy ensuring the views of people with dementia and direction of government and non-government Elizabeth Byrne McCullough, Policy & Public Affairs Officer, Alzheimer’s carers have been incorporated at a formative stage bodies right across Europe and the various Society by directing and facilitating research undertaken by approaches have been outlined in the pages of the Mental Health Foundation including people Dementia in Europe in recent years. currently living with dementia in Northern Ireland. Alzheimer’s Society published documentation of The Dementia Strategy for Northern Ireland is those views in the Listening Well report in Belfast in very much part of that European-wide movement

39 PrioritisinPogl icydementia watch

“The Society has with the potential for huge positive impact on ever­ standing or dementia specific skills in the health played a pivotal role yone living with dementia now and in the future. and social care workforce. in ensuring the views Broadly speaking, the Strategy sets out to support Though the Society reserves some doubts that the of people with people with dementia to live as well and indepen­ Minister can accomplish the priorities he has out­ dementia and carers dently as they can, to get quality information, care lined without additional funds for the strategy’s have been and support to make decisions and to live well in implementation, we share the Minister’s view that incorporated at a any setting from diagnosis to the end of life. It aims dementia is a considerable social challenge, we to raise public awareness of how we can all reduce support his determination to address it and hope formative stage.” our risk of developing dementia through lifestyle to be part of realising the Strategy’s vision in full Elizabeth Byrne changes and tackles stigma and lack of under­ for people living with dementia. McCullough

National policy developments

Finland: National dementia plan Germany: German Ethics Council launched names dementia as a major challenge of On 8 May, Finland launched a national dementia our time plan called the “National Memory Programme The German Ethics Council published an opin­ 2012-2020”. The plan aims to create a “memory- ion on “Dementia and Self-determination” on friendly Finland” and was prepared by the Minis­ 24 April 2012. It identifies dementia as one of the try of Social Affairs and Health along with other major health and social challenges of our time and organisations. Dr. Eila Okkonen, Executive Direc­ highlights that people with dementia live with di­ tor of Muistiliitto (the Finnish Alzheimer Society), minished mental, emotional and social resources. highlighted four main areas of activity: Therefore, it is essential to preserve “each remain­ ing independence and self-determination” for as • the promotion of lifelong brain health and the long as possible. prevention of memory-related diseases • the promotion of positive attitudes towards Switzerland: Swiss parliament votes to people with dementia in order to guarantee create a national dementia plan their basic human rights On 12 March 2012, the Swiss Council of States • the recognition, diagnosis and treatment of (upper house of the federal Parliament) approved a memory-related diseases as early as possible series of proposals which effectively call upon the with a particular focus on the entire care chain government to prepare a national dementia plan. and its quality The next step will be to establish priorities and • support for high quality research and ensuring assign action items to regional authorities and the competence of professionals. associations.

40 Dementia Issue 11 in Europe June 2012 PrioritisinPolicy watcgh dementia The Alzheimer Europe Magazine

DEMENTIA AND AUSTERITY MEASURES

Maria do Rosário Zincke dos Reis, Chairperson of Alzheimer Portugal and Board Member of Alzheimer Europe, talks about the impact austerity measures are having in Portugal.

Austerity measures and unemployment1 in Portu­ Portugal’s annual budget is financed by the gov­ gal, which has an ageing population and has approx­ ernment and naturally this is a concern in the imately 20% of the total population living in poverty, current climate. are having a strong impact on the quality of life of people with dementia and their carers, although it is Recognising the huge social and economic value Maria do Rosário Zincke dos Reis, Chairperson of Alzheimer Portugal very hard or even impossible to quantify. of NGOs, the government, represented by the and Board Member of Alzheimer Social Security Minister, is actively involved in Europe Specific measures relating to dementia are few reducing the impact the economic and financial and far between. Unfortunately, Portugal does crises may have on the most poor and vulnerable not have a National Dementia Plan and in these population. This is largely supported by all stake­ difficult times we are not optimistic about having holders. one in the near future2. It is only when we exam­ “Both the work ine the issues of drug reimbursement and retire­ Putting this recognition into practice, a Social carried out and ment pension calculations that we are able to find Emergency Programme was launched and is now concrete examples of dementia-related legislation. being implemented. This Programme includes the economic Fortunately, these are still in force and no changes two main groups of measures: one relates to the contribution made are anticipated. running of nursing homes, day care centres and by nongovernmental home services and the other concerns support to organisations Dementia is not a priority of our government combat financial difficulties. and whilst we strive to reverse this situation we (NGOs), such as are conscious of the fact that austerity measures Alzheimer Portugal is seriously worried about Alzheimer Portugal, may threaten our ability to do so. Both the work the future of people with dementia in Portugal. are invaluable to our carried out and the economic contribution made Because of the crisis only emergency measures economy and it is by nongovernmental organisations (NGOs), such are being enacted. Alzheimer Portugal calls on as Alzheimer Portugal, are invaluable to our the government to create and implement specific essential that the economy and it is essential that the sustainability measures to protect people with dementia and sustainability of of these organisations is maintained. their carers and, in particular, to develop a these organisations Dementia National Plan as soon as possible. is maintained.” Indeed, the economic importance of NGOs was highlighted in a report published in April 20123. Maria do Rosário 1 14.8% in January 2012 according to Eurostat data, sharing third Portugual’s NGOs rank second in Europe for the place in Europe with Ireland. Zincke dos Reis contribution (1.7%) they make to the economy. In 2 In 2010, two proposals on a National Dementia Plan were discussed and approved in the Parliament. However, these were addition, they are significant employers. only recommendations to a government that stepped down shortly afterwards. 3 “As instituições particulares de solidariedade social num contex­ In Portugal, NGOs’ budgets are greatly sup­ to de crise económica” by Sónia Sousa, Professor at the School of ported by governmental funds. 65% of Alzheimer Public Policy, George Mason University, Washington DC.

41 PrioritisinPogl icydementia watch

One year’s post-diagnostic support guaranteed for people with dementia in Scotland

Late in 2011, Alzheimer Scotland asked the Scottish Deputy First Minister and Cabinet Secretary for Health, Wellbeing and Cities Strategy, Nicola Sturgeon MSP, to guarantee that people in Scotland receiving a diagnosis of dementia would be offered one year of post-diagnostic support from a named and well trained person. It was a momentous decision when she said yes to this ground-breaking commitment. Here, Alzheimer Scotland’s Chief Henry Simmons, Chief Executive Alzheimer Scotland Executive, Henry Simmons explains the background to this campaign and outlines the organisation’s model of post-diagnostic support envisaged for people with dementia and their partners, families and carers in Scotland. “We believe that this is a world first Alzheimer Scotland has campaigned for many with early stage dementia, their families and years for improvements in timely diagnosis and friends. It also aims to help people take control of and a world-leading post-diagnostic support. We were pleased that the supports they need throughout the illness, as commitment and we improved post-diagnostic information and sup­ well as putting them in touch with other people in commend the port was one of the key service delivery areas in the same situation. Scottish Government Scotland’s National Dementia Strategy, published in 2010. However, as the strategy began to be One person who benefited from this approach to for making it. implemented, we were disappointed in the pace post-diagnostic support was Henry Rankin, who This is a significant and lack of consistent improvement in delivering has vascular dementia. Henry and his family milestone in post-diagnostic support across Scotland. spent months trying to find out the cause of his dementia care.” memory problems, receiving little in the way of There is clear evidence that high quality post answers. His experience of receiving his diagno­ Henry Simmons diagnostic support, provided over an extended sis was no better. “It was dreadful. Absolutely period, is essential in order to equip people with dreadful. There’s no other way to describe it. She dementia and their families and carers with the said ‘You’ve got vascular dementia. Come back tools, connections, resources and plans they need and see me in six months.’ Then she sent me on to live as well as possible with dementia and my way. No more information, no-one to speak prepare for the future. We provided our own to. I didn’t even know what vascular dementia evidence of the benefits of this approach through was. I thought it was all over, that I had six our Facing Dementia Together pilot project which months left to live. I walked out to the street and I was funded by the Scottish Government. burst into tears.”

Facing Dementia Together provides informa­ Fortunately, the Rankin family were put in tion and support to people recently diagnosed touch with Tracy Gilmour who manages Facing

42 Dementia Issue 11 in Europe June 2012 Policy watch The Alzheimer Europe Magazine

Dementia Together. “She put me at my ease Alzheimer Scotland has built on the knowledge straight away. She reassured me, gave me my con­ gained from projects like Facing Dementia Together fidence back. The way I’d got my diagnosis had and from listening to people with dementia and knocked the wind right out of my sails, but she got their partners, family and carers to develop our me back on track. She spoke to my family too, “Five Pillars” model of post-diagnostic support. gave them lots of information and advice. Best thing was; she was always there. We could speak Each pillar highlights a key area of activity recog­ to her at any time.” nised as essential to supporting people after their diagnosis. Various techniques and approaches can Tracy was able to put Henry and his family in be used to deliver a given pillar, but it essential that touch with the various people, groups, public sec­ the full range is offered to each person. Henry Rankin tor agencies and other organisations required to help the Rankins plan for future legal, financial The purpose of the guarantee we sought from and care needs, as well as assisting them with the the Cabinet Secretary is to provide the security, form-filling involved. for a minimum of one year, of a named person who has the flexibility to work alongside the per­ Tracy also put Henry into contact with the Scot­ son, their partner and family and ensure that, “I thought it was all tish Dementia Working Group. He (with several over a 12 month period, each person is given help over, that I had six other SDWG members) attended the Alzheimer’s and support to work through the five pillars. Disease International annual conference in London months left to live. I this year and was asked to speak during one of the By the end of the year it is expected that some walked out to the discussions – an experience he thoroughly individuals might need ongoing professional sup­ street and I burst enjoyed. port; however the purpose of the post-diagnostic into tears.” support is to enable the individual and their family As Henry points out, “If someone is told they to develop a robust personal plan that utilises all Henry Rankin have cancer, they’re pointed toward people that can their own natural supports, that maintains newly help them. That didn’t happen to me. They need to developed peer support mechanisms alongside get diagnosis and post-diagnostic support right for existing and new community connections and that people with dementia and their families. I’m glad will support each person to live well and indepen­ the government’s made a commitment to making dently with dementia for as long as possible. that happen. It’s brilliant news… and not before time!” We believe that this is a world first and a world- leading commitment and we commend the Scot­ The Facing Dementia Together project made a tish Government for making it. This is a signifi­ film at one of their café sessions where people with cant milestone in dementia care and we expect it dementia and their families, including the Rankin to be a life changing commitment for the 7,000 family, talk about the difference the project has people in Scotland diagnosed with dementia each made to their lives. You can watch the film at: year, and for their families. http://dementiascotland.org/services/east-ren­ frewshire/facing-dementia-together/ The challenge now is to deliver it. This will require a major shift in both practice and culture.

43 PrioritisinPogl icydementia watch

“I know that getting However few people do not support this approach pinning this commitment will be a link worker, the right support in and I am certain we will have the support of all assigned to work with the person and their family place at this stage of professional groups to make this a success. and carers in co-ordinating support and building a person-centred support plan, based on Alzhei­ the illness can In a recent issue of Dementia in Scotland, mer Scotland’s “5-Pillar” model (see below). greatly help improve Alzheimer Scotland’s quarterly magazine, Deputy Providing this support will be key to supporting the quality of care First Minister Nicola Sturgeon stated her commit­ people in adjusting to a diagnosis and its likely throughout the ment to what we believe is a world first in demen­ impact – both emotionally and practically; and in tia care. “For me, it is vital that I have a specific helping them plan for the future and navigate journey of the focus on this area of care – because I know that through the key issues and supports available. We illness.” getting the right support in place at this stage of want the commitment to help people with demen­ Nicola Sturgeon the illness can greatly help improve the quality of tia live well in their home and in their community care throughout the journey of the illness. Under­ for as long as possible.”

Alzheimer Scotland’s “5-Pillar” model

44 Dementia Issue 11 in Europe June 2012 dementia in the News The Alzheimer Europe Magazine dementia in the News Cˇatˇalina Tudose reflects on 20 years’ work of the Romanian Alzheimer Society.

Jan Killeen looks back at the 10 years of achievements by the Scottish Dementia Working Group.

Maria do Rosário Zincke dos Reis shares her experience of caring for her mother, Theresa.

46 Spotlight on Romania 50 Living with dementia in Portugal The Romanian Alzheimer Society has carried Maria do Rosário Zincke Dos Reis, out its work for 20 years. In this article Chairperson of Alzheimer Portugal and Caˇtaˇlina Tudose, President of the Society, Board Member of Alzheimer Europe, shares reflects on its work and future challenges. her experience of caring for her mother, Teresa, who passed away with Alzheimer’s 47 Members’ news disease in February this year. A brief look at some of the work carried out by national Alzheimer associations around Europe.

48 the Scottish Dementia Working Group celebrates ten years of achievement Highlights of the work carried out by the Scottish Dementia Working Group are discussed by Jan Killeen, Alzheimer Scotland. dementia in the News

Spotlight on Romania

The Romanian Alzheimer Society celebrates 20 years’ work this year. In this article Catalina Tudose, President, reflects on the challenges and hopes of the organisation.

The Romanian Alzheimer Society was founded Motivation at this time was high and we opened in 1992 when a group of professionals (doctors, our fourth community centre in Timisoara. How­ nurses, psychologists) wanted to address the ever, the situation changed dramatically for the problems faced by elderly people who lived with worse after the funding and support which had Cˇatˇalina Tudose, President, this incurable and often undiagnosed disease. been allocated to former communist countries Romanian Alzheimer Society Initially, we focused solely on raising awareness ran out. We were forced to rely on funding from of the disease. government bodies and this proved to be highly variable. The first service the Society offered was “Meals on wheels”. This service also enabled us to carry By 2005, the lack of governmental support “The situation out assessments and pass information on to the together with a survey on the management of changed dramatically relevant doctor. It was in this way that we started Alzheimer’s disease in Romania indicated to us to understand the real needs of people living with how little people really understood about this dis­ for the worse after this disease. ease. Even after strong awareness campaigns, the funding and there is still today an enormous need to raise support which had We were able to offer health and social support awareness and understanding of the disease. To been allocated to once we opened our first day care centres in 1993 help achieve this, the Society took the decision in in Bucharest and in Galati. Shortly afterwards we 2011 to host an annual national conference to fa­ former communist opened our headquarters in Bucharest and cilitate the exchange and sharing of information countries ran out.” received international recognition for our work, between experts from the field of dementia via Caˇtaˇlina Tudose becoming members of Alzheimer Disease Inter­ conference presentations, workshops and courses. national and Alzheimer Europe. Despite all our work, it is extremely dishearten­ Our activities expanded in 1995 when we ing that dementia is still not a political priority in opened a new day care centre in Nehoiu which Romania. We need to lobby our politicians and was specifically aimed at helping people with this year we are developing a national Alzheimer’s Alzheimer’s disease. From information we gath­ Alliance to do just this. Only with a coherent ered it was clear that most people with dementia national strategy which encompasses the medical, were not diagnosed and those that were diag­ social, financial, personal and ethical issues, will nosed were in the very advanced stages of the problems of over 1.5 million people in Roma­ the disease. To help those people involved with nia who are directly or indirectly affected by this people with dementia, we developed a system of disease start to be addressed. continuous training for carers and short courses for family doctors, social workers and nurses. Greece Norway

46 Dementia Issue 11 in Europe June 2012 dementia in the News The Alzheimer Europe Magazine

Members’ News Alzheimer Europe reports on some of the recent activities carried out by national Alzheimer association around Europe.

Greece: Alzheimer Hellas Romania: Romanian Alzheimer holds workshops on legal Society holds second Annual and social issues Conference On 9 March, Alzheimer Hellas initiated a series Societatea Alzheimer Romana held its second of workshops for 2012 which aim to inform pro­ Annual Conference which was entitled “Alzhei­ fessionals and caregivers about legal and social mer Dementia – a major public health priority in issues that are specific to dementia. The first Romania” on 23-25 February 2012. Attracting workshop was officially opened by Deputy Health some 400 participants, delegates were able to hear Minister Markos Bolaris and attracted nearly 200 about a wide range of topcis, including risk fac­ people. tors, prevention, preclinical dementia, diagnosis, drug development, future treatment strategies, Italy: Alzheimer Uniti Italy pharmacological treatment and disease manage­ hosts a book launch and pub- ment. lishes a new caregiver guide On 2 March, Alzheimer Uniti Italy (AU) organ­ Switzerland: Swiss ised an event around the publication of a new Alzheimer Association book on the subject of ageing, entitled La Lon­ discusses taboos in dementia gevita Attiva, or An Active Long Life: The Pleas­ The Swiss Alzheimer Association held a seminar ure of Knowing How to Age. Written by geriatri­ entitled “Taboos and Dementia” on 30 April 2012 cian Enrico Paciaroni, the book gives a positive which attracted more than 350 participants. It in­ look at ageing and reminds readers about the cluded topics such as negligence, abuse, aggression pleasures of ageing and about the value of living and sexuality. The aim was to determine the causes an active, enjoyable life. and to develop ways of managing these forms of behaviour. Due to the success of this seminar the Poland: Polish Alzheimer’s Asso- Association plans to schedule further sessions. ciation wins prestigious award On 10 February, the Polish Minister UK: Alzheimer’s Society of Health awarded the Polish Alzheimer’s Associ­ launches online demen- ation with the St. Kamil’s Award. This yearly tia training tool award is given to local organisations for remarka­ The UK Alzheimer’s Society, along with BMJ ble achievements during the year. The Minister Learning, has launched a free online dementia cited the association for “its long lasting, compre­ training tool for GPs on 14 May 2012. The train­ hensive and tireless voluntary activities for the ing programme was introduced after a survey by good of people with dementia and their families, the society revealed that only 37% of UK general and also for its significant contribution toward practitioners say they have received sufficient the development of the Alzheimer’s movement in basic dementia training. The free programme Poland.” The award was accepted by Alicja Sad­ includes sections on early diagnosis and non- owska, head of the Polish Alzheimer’s Associa­ drug treatments for behavioural symptoms such tion and board member of Alzheimer Europe. as hobbies, social interaction and music.

47 dementia in the News

The Scottish Dementia Working Group celebrates ten years of achievement

Jan Killeen, Policy Consultant, Alzheimer Scotland looks back at the some of the highlights of the work carried out by the Scottish Dementia Working Group.

The Scottish Dementia Working Group (SDWG) Campaigning is a campaigning group run for and by people The influence of the group at national policy with dementia within Alzheimer Scotland. The level has been remarkable, with representation on group has a committee and membership which Scottish Government working groups to develop Jan Killeen, Policy Consultant, has grown to 140. Membership is inclusive of all the National Dementia Strategy for Scotland and Alzheimer Scotland types of dementia– not only Alzheimer’s disease. ongoing involvement in the monitoring and im­ The group sets its own objectives and priorities plementation of the strategy. The group is invited and decides how to take these forward. Alzheimer to meet with the Deputy First Minister, Cabinet Scotland fully funds the group including a full Secretary for Health and Well-being four times a time co-ordinator and part time development year to discuss progress on the strategy and to “The influence of the worker (selected by a panel of members). The receive feedback on the experiences of members. th group at national group also receives support and training from The Scottish Government is honouring the 10 Alzheimer Scotland’s awareness raising, and poli­ Anniversary of the group with a reception at policy level has been cy staff; also from individual dementia care spe­ Edinburgh Castle. remarkable.” cialist from other agencies, some of whom have Jan Killeen been involved since its inception. What has made the group successful?

Lively open meetings are held every two months How the group works is vital to its success: and the committee meets in between. Regular meetings are relaxed but well organised – ensuring newsletters are sent to members. This helps those everyone is welcomed and as involved as they who are unable to attend meetings to be involved. want to be. Members work best when the agenda Their views and ideas are always invited. is short, with discussion in small groups and key points written up on a flip chart as a memory aid; Influencing change and time allowed for people to absorb new infor­ mation and formulate their views. Training and awareness raising The SDWG has made a huge impact on the atti­ As the group has grown from strength to tudes of the public professionals and politicians, strength it has gained national and international speaking at conferences, taking part in radio and recognition. Its participation is highly valued by a television programmes, newspaper interviews wide range of professional bodies, universities and input to professional training. The group has and the media. By 2009 the workload was becom­ produced several training DVDs as well as guides ing overwhelming – the group was a victim of its for people newly diagnosed with dementia and a own success. Following a review, members agreed joke book! to focus on three campaigning priorities and a development plan to build a stronger group.

48 Dementia Issue 11 in Europe June 2012 dementia in the News The Alzheimer Europe Magazine

1 Priorities: talk about how they might go forward, I was privileged to be part of that group. Alzheimer • Highlight the importance of early diagnosis Scotland played a key role in the process, offering and diagnostic processes a firm foundation for its development and in 2003 • Improve national-wide access to post diagnos­ the first birthday of the group was celebrated with tic support over 20 members. The first strong-hold for the • Well -trained workforce group was in Glasgow and groups gradually developed in other parts of Scotland. It is a remit An action plan for each work area is in place of Alzheimer Scotland’s Dementia Advisers to which guides its work very effectively. offer people with dementia information about 2 the group and to help them to participate if they How did the group start? From small wish to join. acorns mighty oak trees grow! The SDWG is represented on the Alzheimer James McKillop, MBE, diagnosed with vascular Scotland Board and helps to fulfil one of our key dementia in 1999, was the inspiration behind the aims: to be the voice of and for people with SDWG and continues to be after 10 years of dedi­ dementia in Scotland. The group’s contribution is cated work. He describes the SDWG as “the inde­ unique and invaluable, not only to the organisa­ pendent voice of people with dementia within tion but to the whole community. Alzheimer Scotland, a marriage made in Heaven”. For further information about the James realised the power of speaking out when Scottish Dementia Working Group, 6 he was asked to talk at a research conference by see: www.sdwg.org.uk or social researcher, Heather Wilkinson. With e-mail: [email protected] Heather’s encouragement and others sharing James’ vision, a small group of people with dementia and their supporters came together to 5

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    3           



    

 

     9                                    

    8          

   7 

1. Edward McClaughlin ⁄ 2. James McKillop ⁄ 3. Nicola Sturgeon at the Alzheimer Scotland conference 2011 ⁄ 4. The SDWG at the 4th UK Dementia Congress ⁄ 5. James McKinnock, Nancy McAdam and Pat McGonigal ⁄ 6. James McKillop, co-founder SDWG and Philip Bryers, 1st coordinator, SDWG (2004-2007) ⁄ 7. Alex Salmond, MSP, First Minister, Scottish Government, meets SDWG at Alzheimer Scotland HQ, in support of Comic Relief / 8. SDWG meeting in action in Glasgow ⁄ 9. Shona Robison, MSP, the then Minister for Public Health and Sport with the SDWG outside St Andrew’s House, Scottish Govern- ment ⁄ 10. Graphic representation of Priority 3, Action Plan, SDWG

49 dementia in the News

Living with dementia in Portugal

Maria do Rosário Zincke dos Reis, carer, Chairperson of Alzheimer Portugal and Honorary Treasurer of the Alzheimer Europe Board, speaks about caring for her mother, Teresa, who lived with Alzheimer’s disease. Teresa with granddaughters Margarida and Madalena

Being a carer

I lost my mother two months ago. She had Alzheimer’s disease. It was a long journey of 20 years. 20 years ago in Portugal only a few people were aware of this brain disease. In the family, at work and among friends no one could understand why she forgot things, places, names and appointments, why she was always losing glasses, money, gloves and other personal things. Everyone found it strange that she was always so tired and nervous and could not do her job properly as she had done before. It was a long journey from these first signs to the very last moments. There was the time when she walked on the streets of Lisbon for hours, alone or with her baby grandson, because the family did not understand that it could be very dangerous. There was the time when she ate lots of chocolates and bananas. There were hilarious moments when she had no inhibitions and did things like dropping a glass over someone she did not like! What remains as my most significant memory during this very demanding experience for all the family, is the incredible capacity of my mother to create and maintain affection. How can someone that does not speak or express herself by any other way and that was completely dependent, make people really love her? Everyone loved her, not only my father, my sisters, myself, the grandchildren, which was natural, but even the doctor, the nurse, the carers, the hairdresser and anyone else that appeared in her life, even at the latest stage of the disease. No one could remain indifferent to her. She was always ready to connect emotionally with others. How? I really don´t know. My mother succeeded in achieving things that many of us cannot: a marriage of more than 50 years having her husband always with her and providing the best care and love; a big family (four daughters and 11 grandchildren) all together and feeling this grandmother as the main reference of the family and the centre of their lives. th She died on the 14 February 2012, at home, very peacefully with her family around her. I do miss her. We all miss her. But we can feel the comfort and happiness of having shared so much love with this special person. Our members are helping people with dementia and their carers in 29 countries

Croatia – zagreb Austria – Vienna Belgium – Brussels Bulgaria – Sofia BULGARIA - VARNA Alzheimer’s Disease CYPRUS – LARNACA Alzheimer Angehörige Ligue Nationale Alzheimer Liga Alzheimer Bulgaria Foundation Compassion Societies Croatia Pancyprian Alzheimer Association Alzheimer

United Kingdom – London Czech Republic – Prague Alzheimer’s Society Czech Alzheimer Society Alzheimer Europe Members

United Kingdom – Edinburgh Denmark – Hellerup Alzheimer Scotland Alzheimerforeningen

Turkey – Istanbul Estonia – tartu Alzheimer Vakfı Estonia Association of Alzheimer’s disease

Switzerland – Yverdon-les-Bains Association Alzheimer Suisse Finland – Helsinki Muistiliitto

Sweden – Stockholm Demensförbundet France – Paris Association France Alzheimer

Sweden – Lund Alzheimerföreningen i Sverige Germany – Berlin Deutsche Alzheimer Gesellschaft e.V.

Spain – Madrid Fundación Alzheimer España Greece – Thessaloniki Greek Association of Alzheimer’s Disease and Related Disorders Spain – Pamplona C.E.A.F.A. Ireland – Dublin Alzheimer Society of Ireland Slovakia – Bratislava Slovak Alzheimer Society Italy – ROME Alzheimer Uniti Onlus Slovenia – ˇSENTJUR Association “Forget-me-not” Italy – Milan Federazione Alzheimer Italia Romania – Bucharest Poland – Warsaw Netherlands – Bunnik Societatea Alzheimer Polish Alzheimer’s Association Alzheimer Nederland JERSEY – ST HELIER Jersey Alzheimer’s Association Portugal – Lisbon Norway – Oslo Malta – msida APFADA Nasjonalforeningen Demensforbundet Malta Dementia Society Luxembourg – Luxembourg Association Luxembourg Alzheimer 22nd Alzheimer Europe Conference Changing perceptions, practice and policy Vienna / 4-6 October 2012 Mark the dates! www.alzheimer-europe.org/conferences