Issue 3 May 2009 Dementia i n E u r o p e T h e A l z h e i m e r E u r o p e m A g a z i n e
“It is the Daniela Filipová, Czech Health Minister, responsibility talks about dementia and the European Czech Presidency of all of us to ensure that people can age with dignity, in good health Anders Wimo, MD, PhD presents findings on the cost of dementia and with their rights respected” Androulla Vassiliou, European Commissioner for Health
Maria Eleni Koppa, MEP highlights the situation for people with dementia in Greece 20th Alzheimer Europe Conference Facing Dementia together Luxembourg / 30 September-2 October 2010
Mark the dates!
www.alzheimer-europe.org/conferences Dementia Issue 3 i n E u r o p e May 2009 Table of contents T h e A l z h e i m e r E u r o p e m A g a z i n e
04 Welcome Policy Watch By Maurice O’Connell, Chairperson of 28 The Council of European Health Alzheimer Europe Ministers calls to make dementia a European priority Prioritising dementia A look at the European Health Ministers’ 06 Fighting Dementia together “Conclusions on public health strategies Françoise Grossetête, MEP (France) highlights to combat neurodegenerative diseases the role that the European Alzheimer’s Alliance associated with ageing and in particular has played at European level in order to make Alzheimer’s disease”. Alzheimer’s disease a public health priority. 29 Rising to the challenge: The role of 08 Reactions to Written Declaration the European Commission 80/2008 from Alzheimer associations European Health Commissioner, Androulla Alzheimer associations across Europe talk Vassiliou, talks with Alzheimer Europe about about how they can use the Declaration in the work of the European Commission in the their work as well as the contact they had field of Alzheimer’s disease. with, and support from, their MEPs. 32 European Presidency Watch 13 A new look at the prevalence Alzheimer Europe talks with the Czech Health
of dementia in Europe Minister, Daniela Filipová. Alzheimer Europe Board Alzheimer Europe reports on the findings Maurice O’Connell (Ireland), Chairperson of the working group on prevalence of the 34 A view from Greece Sabine Henry (Belgium), Vice-Chairperson Sigurd Sparr (Norway), Honorary Secretary European Commission financed “EuroCoDe- Maria Eleni Koppa, MEP (Greece), talks of the Heike von Lützau-Hohlbein (Germany), European Collaboration on Dementia” project. situation for people with dementia and their Honorary Treasurer carers in Greece. Iva Holmerovà (Czech Republic) Neil Hunt (UK) 15 The legal protection and rights of Pekka Laine (Finland) people with dementia in Norway 35 National Dementia Plan: England Patrick Maugard (France) A look at the ongoing Alzheimer Europe Alzheimer Europe considers the recently- Alicja Sadowska (Poland) Charles Scerri (Malta) “Lawnet” project, focusing on Norway. Berit launched English Dementia Strategy and Marc Schaefer (Luxembourg) Antonie Holmlimo, Political Advisor of the feedback on the Strategy is given by Daphne Maria do Rosário Zincke dos Reis (Portugal) Norwegian Alzheimer Association comments. Wallace, Heather Roberts (both of whom have
dementia) and Angela Clayton-Turner (a carer). Contact Alzheimer Europe at: 19 Essential work needs support Alzheimer Europe A snapshot of state financial support given Dementia in the News 145 route de Thionville L-2611, Luxembourg 40 to help Alzheimer associations carry out their The power of Solidarity Tel.: +352 29 79 70 work across Europe. Jean Georges, Executive Director of Alzheimer Fax: +352 29 79 72 Europe, looks back on the Alzheimer Europe www.alzheimer-europe.org www.dementia-in-europe.eu 20 Debating Dementia in the European campaign to make dementia a European [email protected] Parliament priority and highlights the importance of A report on two recent lunch debates on collaboration with national organisations to Jean Georges, Executive Director dementia which were held in the European achieve results. Annette Dumas, EU Public Affairs Officer Parliament. The first considers the rising cost Julie Fraser, Editor of dementia and the second debate looks 42 Members’ News Dianne Gove, Information Officer Gwladys Guillory-Hickey, Grazia Tomasini, at developing a European Action plan on A roundup of Alzheimer Europe’s members’ Administrative Assistants dementia. recent news.
45 Election Special Living with dementia Photo credits I - VIII In the run up to the elections, Alzheimer Stewart Cooper describes his life with European Parliament, European Commission, Europe asked Members of the European Alzheimer’s disease in his adopted country Alzheimer Europe (by Gwladys Guillory-Hickey)
Parliament about the key accomplishments of Luxembourg Layout of this Parliament, as well as future policy binsfeld corporate initiatives and personal priorities that will 46 Dementia in Society Print benefit people with Alzheimer’s disease and A look at how dementia is portrayed in Qatena, Luxembourg their carers. literature and arts.
welcome
Welcome
I am thrilled that, at least on a European level, de- English Dementia Strategy and hear how it may help mentia has been thrust into the political limelight Heather Roberts and Daphne Wallace, who have de- at a startling pace these past few months. To this mentia, as well as Angela Clayton-Turner, a carer. end, we report on the far reaching conclusions on Whilst there is a great enthusiasm that the Strategy Alzheimer’s disease which were adopted by the has been launched, I am mindful that implementa- Council of European Health Ministers as well as tion will be the real test of its effectiveness. Members of the European Parliament showing their support by adopting Written Declaration Similarly, I am heartened that our call to make 80/2008 on the priorities in the fight against dementia a priority seems to have been heard but Alzheimer’s disease. We speak with Françoise much work remains. Indeed, we report on the Grossetête about her passion for launching this findings from the European Collaboration on campaign, as well as hearing from national Dementia (EuroCoDe) project which suggest that Alzheimer associations around Europe who tell us the scope of the problem in terms of prevalence and Maurice O’Connell Chairperson of Alzheimer Europe how much this action has meant to their work. the socio-economic cost of Alzheimer’s disease is much bigger than anticipated. As part of the “troika” presidencies (French, Czech and Swedish) who had pledged their com- Reading Stuart Cooper’s article about living with mitment to addressing Alzheimer’s disease, we talk dementia in Luxembourg, reminds us that as more about the role of the current European Czech pres- and more Europeans choose to live outside their idency with the Czech Health Minister, Daniela country of birth, the challenge to provide accessible Filipová. care is raised.
Androulla Vassiliou, the European Health Com- Our work could not be possible without our mem- missioner, explains what the Commission has al- ber organisations and I particularly enjoyed reading ready done to combat Alzheimer’s disease as well Jean Georges’ article on just this, entitled “The pow- as the Commission’s future plans. I particularly er of solidarity”. Such achievements seem even more welcome the recognition by Ms Vassiliou of the incredible when we are reminded of the discrepan- work to be done as it offers reassurance that the cies which exist between Alzheimer associations in Commission is addressing the challenge of demen- respect of the financial assistance received from the tia head on. State in “Essential work needs support”. This simply cannot continue if we are serious in our quest to ad- The European Parliament has its elections in June dress Alzheimer’s disease. and in our “Election Special”, we hear from several MEPs who reflect on the Parliament’s achievements I would like to thank all those who work in this with regard to dementia and who share their vision field for making sure dementia is kept in the politi- for helping people with dementia and their carers. cal spotlight. By doing this, you offer hope to people with dementia and their carers and remind policy This issue we hear from Maria Eleni Koppa, MEP, makers that the time to act is NOW. who highlights the need for a national dementia ac- tion plan in Greece and we consider the legal rights for people with dementia and carers in Norway. We take a look at the detail of the recently-launched Maurice O’Connell, Chairperson
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Prioritising dementia
Françoise Grossetête “We need to keep the momentum and capitalise on the achievement right from the beginning of the next mandate.”
Berit Holmlimo of the Norwegian Alzheimer Association considers the legal situation for people with dementia in Norway
Antoni Montserrat Talks about the work by the Commission in the field of Alzheimer’s disease
06 Fighting dementia together 15 The legal protection and rights of Françoise Grossetête, MEP (France) highlights people with dementia in Norway the role that the European Alzheimer’s Alliance A look at the ongoing Alzheimer Europe has played at European level in order to make “Lawnet” project, focusing on Norway. Berit Alzheimer’s disease a public health priority. Antonie Holmlimo, Political Advisor of the Norwegian Alzheimer Association comments. 08 Reactions to Written Declaration 80/2008 from Alzheimer associations 19 Essential work needs support Alzheimer associations across Europe talk A snapshot of state financial support given about how they can use the Declaration in to help Alzheimer associations carry out their their work as well as the contact they had work across Europe. with, and support from, their MEPs. 20 Debating Dementia in the European 13 A new look at the prevalence of Parliament dementia in Europe A report on two recent lunch debates on Alzheimer Europe reports on the findings dementia which were held in the European of the working group on prevalence of the Parliament. The first considers the rising cost European Commission financed “EuroCoDe- of dementia and the second debate looks European Collaboration on Dementia” project. at developing a European Action plan on dementia. Prioritising dementia
FIGHTING DEMENTIA TOGETHER
Françoise Grossetête, MEP (France) highlights the role that the European Alzheimer’s Alliance has played at European level in order to make Alzheimer’s disease a public health priority and Alzheimer member organisations comment on what this means to them.
Alzheimer Europe (AE): Ms Grossetête, your initiative in 2009 that will reinforce European mandate as Member of the European Parliament collaboration in research and exchange of good “It is really is ending with some remarkable achievements in practices in the areas of prevention, early diagnosis, remarkable that raising awareness that dementia, and in particu- treatment, social support and rehabilitation. Ethical MEPs from the 27 lar Alzheimer’s disease, are a public health pri- issues and the protection of patients’ rights are also ority. Could you briefly remind us of these featured in the recommendations. European Member achievements? States and 5 AE: In the European Parliament, the European European political Françoise Grossetête Alzheimer’s Alliance, of which you are Presi- groups have (FG): It is true that dent, has also given a strong signal that it was within a record period urgent to act. What has been the role of the Alli- supported the Paris of time, the urgency to ance and what are your views on this group? Declaration and/or tackle Alzheimer’s dis- joined the Alliance.” ease, both in terms of FG: The Alliance has been a driver in raising Françoise Grossetête public health and re- awareness at European level and it is with great search, has been echoed pleasure that I have engaged in its work. The by the Member States. support I have received from four of my fellow MEPs to produce a European Parliament Written I am proud that France has been a driver in this Declaration on the priorities in the fight against campaign: first, the very comprehensive French Alzheimer’s disease, as well as the support of a Alzheimer plan launched by President Nicolas large majority of my colleagues in the European Sarkozy at the beginning of 2008 caught the at- Parliament, clearly evidence the importance of tention of a number of European policy makers. the topic. This Written Declaration also calls for a Then, the decision to make Alzheimer’s disease a European action plan in the field of research, di- priority of the French presidency of the EU led agnosis, simplification of procedures for patients two Councils of Ministers to produce recommen- and their carers and improvement of their quality dations. The first recommendation, from the of life. Competitivity Council, encourages the Member States to engage together in the fight against The priorities of Alzheimer Europe’s Paris Dec- neurodegenerative diseases, and mentions specifi laration, that inspire the work of the Alliance, cally Alzheimer’s disease. The second recommen- have received an overwhelming response within dation, from the Health and Social Affairs Council, the European Parliament. It is really remarkable calls on the European Commission to adopt an that MEPs from the 27 European Member States
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and 5 European political groups have supported AE: You will be running in the next European the Paris Declaration and/or joined the Alliance. elections. If you are re-elected, what will your priorities be to safeguard the interests of the I hereby wish to congratulate Alzheimer Europe people with dementia and their carers? who has managed to create the synergies favour- able to such a European political wave. FG: I am determined to continue my engage- ment. Of course, I will follow the Commission’s AE: The European Commission has also given initiative and the proposals that will be made a strong signal. Could you tell us a bit more? with great attention. It will also be imperative to remain vigilant and ensure that the Council rec- FG : It is comforting and encouraging that the ommendations of 2008 are followed by concrete “We need to keep the European Commission, the third major EU insti- actions. The European Alzheimer’s Alliance must momentum and titution, has heard the recommendations of the be perpetuated during the next mandate and be capitalise on the Council and European Parliament. At the open- granted a clear recognition from the European ing of the EU Open Health Forum, the Health Parliament. We need to keep the momentum and achievements right Commissioner, Androulla Vassiliou, announced capitalise on the achievements right from the be- from the beginning a European Commission initiative on Alzheimer’s ginning of the next mandate. of the next disease within the course of 2009. mandate.” AE: Ms Grossetête, thank you very much for Some preparatory work is currently taking place your support. Alzheimer Europe wishes you all Françoise Grossetête with various partners in order to shape the initia- the best for the next elections we look forward to tive’s modalities. continuing working with you in the future.
Written Declaration
A written declaration is a short text which is presented to the European Parliament to launch (or re-launch) a debate on any subject that falls within the EU’s remit.
Launched by a maximum of five MEPs and governed by rule 116 of the Rules of Procedure, MEPs show their support by signing the declaration at the entrance to the Chambers (or a designated room) in Strasbourg and Brussels. For informa- tion purposes only, the declaration is posted on the European Parliament’s website.
A declaration will be adopted if the majority of MEPs sign it. So far, the current Parliamentary session (2004-2009) has considered some 400 declarations. Of these, the majority have lapsed due to lack of support after the prescibed three month period (377) and less than 10% (35) have succeeded in being adopted. Successful declarations cover a wide spectrum of interest including the protection of children, health, finance, empowerment, subtitles on TV to name but a few. During the last five years some written declarations in the sphere of health (eg. fibromyalgia, Alzheimer’s disease, rheumatic diseases, cancer, hepatitis C, diabetes, rheumatic diseases and deaf-blind people) which have been adopted. Written Declaration 80/2008 on priorities in the fight against Alzheimer’s disease managed to secure 465 signatures, illustrating the high level of support from MEPs with only three other declarations securing a higher number of signatures than this.
Once adopted, the declaration, together with a list of signatories, is forwarded to the institutions named in the text. In Declaration 80/2008, these were named as the Council, Commission and governments of the Member States. Although there is no legal obligation to take action, the adopted Declaration is a strong signal to the recipient(s) that the European Parliament wants them to take action.
7 Prioritising dementia
Reactions to Written Declaration 80/2008 from Alzheimer Associations
Alzheimer associations across Europe give their reactions to the adoption by the European Parliament of Written Declaration 80/2008, talking about how they can use the Declaration in their work as well as the contact they had with, and support from, their MEPs.
Bulgaria: 16 out of 18 MEPs signed Contacting Members of European Parliament was (88.89%) quite an interesting experience. Some of the Czech “We only can say The Compassion Alzheimer Bulgaria team: MEPs were really happy to help and reacted very thank you to all of “The adoption of the Written Declaration was very quickly and positively but some of them did not you who have been important for our organisation, and now we hope reply at all. We find our MEP Milan Cabrnoch that the Bulgarian authorities will change their at- very supportive. He contacted his colleagues and involved in this titude towards people suffering from Alzheimer’s asked them to sign the declaration two days before project, the benefits disease. We are truly delighted that our campaign the deadline. We feel that support for the declara- of which will be for has resulted in this great success.” tion means a lot for the Alzheimer movement at all the millions of both a European and national level. Hopefully, the Cyprus: 6 out of 6 MEPs signed (100%) Declaration will motivate people to improve the people suffering Antigoni Diakou, President of the Cyprus Alzheimer quality of life of people with dementia and their from Alzheimer’s Association: relatives. disease.” “We managed to contact all 6 of our Cypriot Euro Jesus Rodrigo, MPs and this gave us a unique opportunity to let Denmark: 10 out of 14 MEPs signed (71.43%) them know of our existence and the purpose of Nis Peter Nissen, Director of Alzheimer Executive Director of our Alzheimer Association in Cyprus. We were föreningen: “Contacting the Danish MEPs was a CEAFA also able to explain to them the importance of very positive experience and has given us some signing the Written Declaration. Personal contact useful network connections. The response rate proved to be an invaluable exchange as it builds from the Danish MEPs was positive and quite bridges of mutual understanding between the Eu- high – especially from the prominent MEPs as the ropean MPs and our NGO. We succeeded in per- former Danish Prime Minister Poul Nyrup suading all 6 MEPs to sign basically because we set Rasmussen. We have mainly used the responses it as our goal and perservered through co-ordinat- from the Danish MEPs on a national arena as a ed action to achieve this. We are already empha- way to place the idea of a national dementia sising the full support we received in order to en- strategy in the Danish Parliament. It has also given sure Alzheimer disease is recognised as a priority us some contacts to relevant Danish MPs.” in our health system. ” Germany: 21 out of 99 MEPs signed Czech Republic: 16 out of 24 MEPs signed (21.21%) (66.67%) Heike von Lützau-Hohlbein, Chairperson of the Martina Rokosova, Executive Vice-President of Deutsche Alzheimer Gesellschaft: Czech Alzheimer Society: “This is an important acknowledgment of our
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work. However we are somewhat disappointed Irish MEPs. This does influence the politicians at that only 21 of the 99 deputies of the German home especially in a small country. All in all the Members of the European Parliament supported collaboration on national and European levels has the European Alzheimer’s initiative.” been a great success. A big thank you to the staff of Alzheimer Europe for their continuous hard Greece: 24 out of 24 MEPs signed work.” (100%) Anastasia Apostolidou of the Greek Malta: 4 out of 5 MEPs signed (80%) Association of Alzheimer’s Disease and Related Charles Scerri, General Secretary of the Mal- Disorders: ta Dementia Society: “We contacted our Members of the European “I contacted our MEPs by email and they were “We now have a Parliament and almost everyone responded posi- very helpful. All they needed was a little bit of re- document for all of tively, willing to sign the declaration as they real- minding, but in the end, the majority of them us in the EU to work ised early on the importance of the declaration. signed the Declaration. Four out of 5 MEPs From Greece 24 out of 24 Members of the Euro- signed the Declaration. That gives us an 80% re- with.” pean Parliament signed the declaration and sponse rate which is quite a good percentage. Kristina Westerlund therefore this filled us with happiness and satis- Maltese MEPs coming from the two major politi- of Alzheimer faction. We feel very proud of our Members in the cal blocks in the European Parliament signed the föreningen I Sverige European Parliament and their response to this Declaration. It will be used as part of our media movement and it signals the importance of recog- strategy in raising awareness. It was also commu- nising dementia as a national priority and the im- nicated to the Parliamentary Secretary responsi- portance of unifying all efforts to achieve this. ble for Elderly Care who was very pleased with We can use this as guidance in our work and to the response rate. It will surely add to the political raise awareness by distributing it widely through- will to launch National Dementia Strategy in out Greece.” Malta.”
Ireland: 11 out of 13 MEPs signed Portugal: 20 out of 24 MEPs signed (83.33%) (84.62%) António Oliveira Costa, Executive Director Maurice O’Connell, Chief Executive of the of Alzheimer Portugal: Alzheimer Society of Ireland: “It was quite exciting to participate in (hopefully) “I think what we have achieved on a political level history making. When you see a window of op- has been tremendous for us and on a European portunity to change the world you live in, even in level it has indicated that our role is a significant a small way, it becomes a call. This was only pos- one for the future planning of policy and practice sible due to the work of the Alzheimer Europe within Europe. It will have an impact on those we team, who created a favourable agenda and tim- serve: Both people with dementia and their family ing. We were trying to get 100% of Portuguese carers. It will give encouragement to the national MEPs to sign and even the four MEPs who were countries, who, like us, have still some persuasion unable to sign, had promised to. Anyway, it was a to do with our local governments. I have had the huge success. We will use the Declaration to raise privilege of attending the meetings in the Parlia- awareness for the need to create and develop a ment and I was very happy at the attendance of our specific plan for dementia.
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Spain: 36 out of 54 MEPs signed (66.67%) United Kingdom : 49 out of 78 MEPs Jesus Rodrigo, Executive Director of CEAFA: signed (62.82%) “We sent a letter from our Chairman explaining Vicki Combe, Public Affairs Manager of the the importance of the Written Declaration to all Alzheimer’s Society: Spanish Members of the European Parliament, “The Alzheimer’s Society was delighted that the asking for their collaboration. We followed this by European Parliament passed a Written Declara- telephoning various MEPs and holding personal tion on the need to make Alzheimer’s disease a Eu- interviews with some of them. We are really satis- ropean health priority. We were pleased that al- fied with the MEPs because 66,67% of Spanish most two thirds of MEPs in the UK signed the MEPs signed the Written Declaration, 36 out of 54. Declaration and this can largely be attributed to so The fact that the MEPs were of different parties is many of our supporters getting behind the cam- very important, because it means that unity is pos- paign and contacting their MEPs about the issue. sible independent of political background when This June will see elections for the European Par- fighting against Alzheimer’s disease. We have dis- liament. It is vital we lobby all those people stand- seminated this success through all channels at our ing for election to ensure they understand that de- disposal. In the short term, we’ll use the Declara- mentia is the biggest health and social care tion in all our meetings with National policy mak- challenge Europe faces and that they commit to ers, so we hope it will become a strategic tool to in- taking action on dementia through delivering a spire more action from the national (and regional) European Action Plan on Alzheimer’s disease.” authorities against Alzheimer’s disease. From Spain we only can say thank you to all of United Kingdom (Scotland): 6 out of 7 you who have been involved in this project, the MEPs signed (86%) benefits of which will be for all the millions of Jan Kileen, Director of Policy, Alzheimer people with Alzheimer’s disease.” Scotland: “We had 6/7 success rate - following our letter to Sweden: 7 out of 19 MEPs signed stimulate interest. The one MEP that did not sign (36.84%) was a member of the Scottish Government SNP Kristina Westerlund of Alzheimerföreningen I party which is a surprise as the Scottish Govern- Sverige: ment has made dementia a clinical priority and “Our MEPs were, in most cases, easy to reach and has put £1,000,000 into the establishment of a De- they listened carefully to what we had to say to mentia Research Network as well as funding pilot them. They didn’t believe us when we told them projects on early diagnosis and support, amongst that in Sweden only 3 out of 10 get diagnosed and other measures. However we do not know the treated. Whilst delighted seven of our MEPs sup- personal circumstances of the person who did not ported the declaration, we were very disappointed sign so we cannot criticise. Alzheimer Scotland is with the overall support from our MEPs. The rea- impressed by the high level of response across Eu- son they told us that they would not sign was “In rope. The Declaration requires not only sign up principle I don’t sign things like this”! We can use by governments but by researchers and practi- the Declaration as a way to make people aware of tioners - it’s crucial that these two groups work the lack of commitment shown by certain Swedish together to ensure that research is relevant - look- MEPs. We are happy that so many politicians ing at social supports as well as scientific research signed the declaration and that we now have a - and that together they influence policy develop- document for all of us in the EU to work with.” ment both nationally and internationally.”
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Thank you to the following meps for supporting written declaration 80/2008
Individual signatories by country
Austria Germany Berger Maria, Ettl Harald, Karas Othmar, Pirker Hubert, Prets Beer Angelika, Brie André, Bullmann Udo, Cramer Michael, Christa, Resetarits Karin, Rübig Paul, Schierhuber Agnes, Swoboda Gröner Lissy, Hoppenstedt Karsten Friedrich, Horacek Milan, Hannes Kallenbach Gisela, Kaufmann Sylvia-Yvonne, Klass Christa, Lauk Kurt Joachim, Niebler Angelika, Özdemir Cem, Posdorf Horst, Belgium Posselt Bernd, Roth-Behrendt Dagmar, Rühle Heide, Schmidt Belet Ivo, Brepoels Frieda, Busquin Philippe, Claeys Philip, Corda Frithjof, Sommer Renate, Wagenknecht Sahra, Zimmer Gabriele Giovanna, Dehaene Jean-Luc, Deprez Gérard, De Vits Mia, El Khadraoui Saïd, Grosch Mathieu, Langendries Raymond, Neyts- Greece Uyttebroeck Annemie, Ries Frédérique, Staes Bart, Sterckx Dirk, Angelakas Emmanouil, Arnaoutakis Stavros, Batzeli Katerina, Thyssen Marianne, Van Lancker Anne Botopoulos Costas, Dimitrakopoulos Giorgos, Droutsas Konstan- tinos, Georgiou Georgios, Gklavakis Ioannis, Koppa Maria Eleni, Bulgaria Kratsa-Tsagaropoulou Rodi, Lambrinidis Stavros, Matsouka Maria, Baeva Mariela Velichkova, Binev Slavi, Hyusmenova Filiz Hakaeva, Mavrommatis Manolis, Pafilis Athanasios, Panayotopoulos-Cassi- Jeleva Rumiana, Kazak Metin, Kirilov Evgeni, Lyubcheva Marusya otou Marie, Papadimoulis Dimitrios, Papastamkos Georgios, Ivanova, Mladenov Nickolay, Panayotov Vladko Todorov, Paparizov Podimata Anni, Schinas Margaritis, Toussas Georgios, Trakatellis Atanas, Raeva Bilyana Ilieva, Stavreva Petya, Stoyanov Dimitar, Antonios, Tzampazi Evangelia, Vakalis Nikolaos, Varvitsiotis Ioannis Urutchev Vladimir, Vigenin Kristian, Zdravkova Dushana Hungary Cyprus Becsey Zsolt Laszlo, Dobolyi Alexandra, Gal Kinga, Gurmai Zita, Adamou Adamos, Demetriou Panayiotis, Kasoulides Ioannis, Hanargozó Gábor, Hegyi Gyula, Herczog Edit, Jaroka Livia, Kósáné Matsakis Mario, Matsis Yiannakis, Triantaphyllides Kyriacos Kovács Magda, Lévai Katalin, Mohacsi Viktoria, Olajos Peter, Öry Csaba, Schmitt Pal, Schöpflin György, Szájer József, Szent-Ivanyi Czech Republic Istvan, Tabajdi Csaba Sandor Cabrnoch Milan, Flasarová Vera, Hybasjová Jana, Kohlíček Jaromír, Maštálka Jiří, Ransdorf Miloslav, Remek Vladimír, Roithova Zuzana, Ireland Rouček Libor, Škottová Nina, Stroz Daniel, Vlasák Oldřich, Zahradil Aylward Liam, Burke Colm, Crowley Brian, de Rossa Proinsias, Doyle Jan, Zatloukai Tomas, Zelezny Vladimir, Zvěřina Jaroslav Avril, Harkin Marian, McGuinness Mairead, Mitchell Gay, Ó Neachtain Seán, Ryan Eoin, Sinnott Kathy Denmark Auken Margrete, Busk Niels, Camre Mogens, Christensen Ole, Italy Jensen Anne E., Lebech Johannes, Rasmussen Poul Nyrup, Agnoletto Vittorio, Albertini Gabriele, Antoniozzi Alfredo, Riis-Jørgensen Karin, Sondergaard Soren Bo, Thomsen Britta Bartolozzi Paolo, Basile Domenico Antonio, Battilocchio Alessandro, Bonsignore Vito, Borghezio Mario, Boso Erminio Estonia Enzo, Braghetto Iles, Calia Maddalena, Cappato Marco, Carollo Mikka Marianne, Oviir Siiri Giorgio, Chiesa Giulietto, Ciani Fabio, Cocilovo Luigi, Fatuzzo Carlo, Foglietta Alessandro, Frassoni Monica, Gardini Elisabetta, Finland Gawronski Jas, Giuntini Monica, Kusstatscher Sepp, Losco Andrea, Itälä Ville, Lax Henrik, Myller Riitta, Paasilinna Reino, Pietikäinen Lo Curto Eleonora, Marini Catiuscia, Mauro Mario, Morgantini Sirpa, Seppänen Esko, Takkula Hannu Luisa, Musacchio Roberto, Muscardini Cristiana, Napoletano Pasqualina, Patriciello Aldo, Pitella Gianni, Prodi Vittorio, Rivera France Giovanni, Rizzo Marco, Robusti Giovanni, Romagnoli Luca, Susta Arif Kader, Audy Jean-Pierre, Beaupuy Jean-Marie, Bennahmias Gianluca, Tatarella Salvatore, Toia Patrizia, Veneto Armando, Veraldi Jean-Luc, Bono Guy, Cavada Jean-Marie, Cornillet Thierry, Daul Donato Tommaso, Zani Mauro, Zappalà Stefano Joseph, De Sarnez Marielle, Descamps Marie-Hélène, De Veyrac Christine, Douay Brigitte, Fontaine Nicole, Fouré Brigitte, Fourtou Latvia Janelly, Gaubert Patrick, Gauzès Jean-Paul, Gibault Claire, Gollnisch Andrejevs Georgs, Krasts Guntars, Kristovskis Ģirts Valdis, Piks Bruno, Griesbeck Nathalie, Grossetête Françoise, Guellec Ambroise, Rihards, Zdanoka Tatiana Jouye de Grandmaison Madeleine, Lamassoure Alain, Lang Carl, Laperrouze Anne, Lefrançois Roselyne, Lehideux Bernard, Le Lithuania Rachinel Fernand, Lienemann Marie Noëlle, Lipietz Alain, Louis Andrikiene Laima Liucija, Budreikaitė Danutė, Dičkutė Jolanta, Patrick, Martinez Jean-Claude, Mathieu Véronique, Morillon Maldeikis Eugenijus, Paleckis Justas Vincas, Sakalas Aloyzas Philippe, Morin Elisabeth, Onesta Gérard, Saïfi Tokia, Savary Gilles, Schenardi Lydia, Sudre Margie, Teychenné Michel, Toubon Jacques, Luxembourg Trautmann Catherine, Vatanen Ari, Vergnaud Bernadette, Vlasto Goebbels Robert, Hennicot-Schoepges Erna, Lulling Astrid, Spautz Dominique, Weber Henri, Wurtz Henri Jean, Turmes Claude
11 Prioritising dementia
Malta María Isabel, Sánchez Presedo Antolín, Sanz Palacio Salvador Do- Attard-Montalto John, Bedingfield Glen, Busuttil Simon, Casa David mingo, Sornosa Martínez María, Varela Suanzes-Carpegna Daniel, Vidal-Quadras Alejo Netherlands Belder Bastiaan, Blokland Johannes, Bozkurt Emine, Buitenweg Sweden Kathalijne Maria, Corbey Dorette, Cremers Jan, Doorn Bert, Hennis- Ek Lena, Holm Jens, Schlyter Carl, Schmidt Olle, Segelström Inger, Plasschaert Jeanine, Jacobs Lily, de Lange Esther, Liotard Kartika Ta- Svensson Eva-Britt, Wijkman Anders mara, Manders Toine, Martens Maria, van Nistelrooij Lambert, Oomen-Ruijten Ria, Wortmann-Kool Corien United Kingdom Ashworth Richard James, Atkins Robert, Attwooll Elspeth, Beazley Poland Christopher, Bowis John, Bowles Sharon, Bushill-Matthews Philip, Chmielewski Zdzisklaw Kazimierz, Chruszcz Sylwester, Czarnecki Callanan Martin, Chichester Giles, Corbett Richard, de Brún Bair- Marek Aleksander, Czarnecki Ryszard, Foltyn-Kubicka Hanna, Ger- bre, Deva Nirj, Dover Den, Duff Andrew, Elles James, Evans Jill, inger de Oedenberg Lidia Hoanna, Grabowski Dariusz Maciej, Golik Evans Jonathan, Evans Robert, Ford Glyn, Hall Fiona, Harbour Mal- Bogdan, Handzlik Małgorzata, Janowski Mieczysław Edmund, Kacz- colm, Honeyball Mary, Hudghton Ian, Hughes Stephen, Jackson marek Filip, Krupa Urszula, Kuc Wiesław Stefan, Kuzmiuk Zbigniew Caroline, Kinnock Glenys, Kirkhope Timothy, Lambert Jean, Lucas Krzysztof, Liberadki Boguslaw, Libicki Marcin, Masiel Jan Tadeusz, Caroline, Ludford Sarah, Lynne Elizabeth, Martin David, McAvan Olbrycht Jan, Pek Bogdan, Pinior Jozef, Podkański Zdzisław Zbig- Linda, McCarthy Arlene, Moraes Claude, Morgan Eluned, Newton niew, Protasiewicz Jacek, Rogalski Boguslaw, Rutowicz Leopold Józef, Dunn Bill, Nicholson James, Purvis John, Simpson Brian, Stevenson Saryusz-Wolski Jacek, Siekerski Czeslaw Adam, Staniszewska Struan, Stihler Catherine, Sumberg David, Tannock Charles, Titley Grażyna, Szejna Andrzej Jan, Tomaszewska Ewa, Tomczak Witold, Gary, Van Orden Geoffrey, Wallis Diana, Watson Graham, Wilmott Wielowieyski Andrzej, Wojciechowski Bernard, Wojciechowski Glenis Janusz, Zapalowski Andrzej Tomasz, Zaleski Zbigniew, Zwiefka Tadeusz Overview of Signatories Portugal Capoulas Santos Luis Manuel, Casaca Paulo, Coelho Carlos, Esteves Country Signatures MEPs % Maria da Assunção, Estrela Edite, Fernandes Emanuel Jardim, Fer- Austria 9 1 8 5 0 . 0 0 reira Elisa, Figueiredo Ilda, França Armando, Freitas Duarte, Gomes Belgium 17 24 7 0 . 8 3 Ana Maria, Guerreiro Pedro, Madeira Jamila, Marques Bulgaria 16 18 8 8 . 8 9 Sérgio, Pinheiro João de Deus, Portas Miguel, Queiró Luis, Ribeiro e Castro José, Santos Manuel António dos, Silva Peneda José Albino Cyprus 6 6 1 0 0 . 0 0 Czech Republic 16 24 6 6 . 6 7 Romania Denmark 10 14 7 1 . 4 3 Bodu Sebastian Valentin, Bulzesc Nicodim, Buşoi Cristian Silviu, Estonia 2 6 3 3 . 3 3 Cretu Gabriela, Csibi Magor Imre, David Dragoş Florin, Dumitriu Finland 7 14 5 0 . 0 0 Constantin, Filip Petru, Manescu Ramona Nicole, Marinescu Marian-Jean, Matula Iosif, Oprea Dumitriu, Petre Maria, Sógor France 49 78 6 2 . 8 2 Csaba, Ticau Silvia-Adriana Germany 21 99 2 1 . 2 1 Greece 24 24 1 0 0 . 0 0 Slovakia Hungary 18 24 7 5 . 0 0 Baco Peter, Bauer Edit, Belohorská Irena, Duka-Zólyomi Árpád, Gaľa Ireland 11 13 8 4 . 6 2 Milan, Kozlik Segej, Šťastný Peter, Záborská Anna Italy 45 78 5 7. 6 9 Slovenia Latvia 5 9 5 5 . 5 6 Brejc Mihael, Drcar Murko Mojca, Jordan Cizelj Romana, Juri Aure- Lithuania 6 13 4 6 . 1 5 lio, Kacin Jelko, Novak Ljudmila, Peterle Alojz Luxembourg 5 6 8 3 . 3 3 Spain Malta 4 5 8 0 . 0 0 Ayuso Pilar, Barón Crespo Enrique, Cercas Alejandro, Díaz de Mera Netherlands 16 27 5 9 . 2 6 García Consuegra Agustín, Fraile Cantón Juan, Galeote Gerardo, Poland 36 54 6 6 . 6 7 Garcés Ramón Vicente Miguel, García-Margallo y Marfil José Portugal 20 24 8 3 . 3 3 Manuel, Garriga Polledo Salvador, Grandes Pascual Luis de, Grau i Romania 15 35 4 2 . 8 6 Segú Martí, Guardans Cambó Ignasi, Gutiérrez-Cortines Cristina, Slovakia 8 14 5 7. 1 4 Herranz García Esther, Herrero-Tejedor Luis, Iturgaiz-Angula Carlos José, López-Istúriz White Antonio, Luque Aguilar Florencio, Mar- Slovenia 7 7 1 0 0 . 0 0 tínez Martínez Miguel Angel, Mendez de Vigo Íñigo, Menéndez del Spain 36 54 6 6 . 6 7 Valle Emilio, Miguélez Ramos Rosa, Moreno Sánchez Javier, Naranjo Sweden 7 19 3 6 . 8 4 Escobar Juan Andrés, Ortuondo Larrea Josu, Pleguezuelos Aguilar United Kingdom 49 78 6 2 . 8 2 Francisca, Pomés Ruiz José Javier, Riera Madurell Teresa, Romeva i total 465 785 5 9 . 2 4 Rueda Raül, Salafranca Sánchez-Neyra José Ignacio, Salinas García
12 Dementia Issue 3 i n E u r o p e May 2009 Prioritising dementia T h e A l z h e i m e r E u r o p e m A g a z i n e
A new look at the prevalence of dementia in Europe
Alzheimer Europe reports on the findings of the working group on prevalence of the European Commission financed “EuroCoDe – European Collaboration on Dementia” project
One of the work packages of Alzheimer Europe’s 194 articles were identified in this search and EuroCoDe project aimed at gathering existing the EuroCoDe working group developed quality epidemiological studies in the field of dementia criteria for those studies that would be included and producing new consensual guidelines. The in the collaborative analysis. In particular, studies project also hoped to achieve a better understand- needed to be community based (including people ing of the breakdown between various forms of in institutions), have a mimimum sample size of The prevalence of dementia (Alzheimer’s disease, vascular dementia, 300 with a response proportion of over 50%, use dementia of women Lewy-body dementia, standardised diagnos- Table 1 over the age of 85 fronto-temporal demen- tic criteria and have a Members of the EuroCoDe Working Group on the prevalence of had been tias) and other rarer dementia study date of 1990 or forms of dementia, and Reynish Emma, Centre Hospitalier Universitaire, Toulouse, France / later. Furthermore, the underreported Victoria Hospital, Kirkcaldy, United Kingdom the different stages of de- Bickel Horst, Technische Universität München, Munich, Germany study authors were con- mentia (mild, moderate Fratiglioni Laura, Caracciolo Barbara, Von Strauss Eva, Karolinska tacted to submit the and severe). Institutet, Stockholm, Sweden raw prevalence data to Georges Jean, Alzheimer Europe, Luxembourg, Luxembourg Kiejna Adrzej, Frydecka Dorota, Wroclaw Medical University, be included in a meta- The rationale for this Wroclaw, Poland analysis of all studies Prince Martin Institute of Psychiatry, London, United Kingdom work was clear. The that fulfilled these strict prevalence figures most criteria. in use in Europe and consistently used by Alzheimer Europe till now date back to 1991, when A total of 17 post 1990 studies were included in the EURODEM network published an excellent the final meta-analysis and the key findings of the collaborative study of 11 population based cohorts working group confirmed that the prevalence of from 8 countries looking at the prevalence of dementia had not changed significantly for men dementia. Although the article remains highly (See Table 2) or for women up to the age of 85 and relevant today, it was recognised that the work was age remains as the single most important risk fac- based on cohorts commenced in the 1980’s and did tor for dementia. Nevertheless, due to the lack of not include data from Eastern Europe. data in previous prevalence studies, the preva- lence of dementia in women over the age of 85 The EuroCoDe project lead by Emma Reynish had been underreported (See Table 3). Also, prev- from the European Alzheimer’s Disease Consor- alence is higher than in men of the same age. tium (See Table 1 for members of the EuroCoDe working group) therefore carried out an extensive The review of epidemiological studies in the de- literature search using Cochrane review method- mentia field also highlighted areas which require ologies and compiled a database of all European further investigation, in particular the prevalence epidemiological studies in this field up to the of dementia in younger people under the age of present date. 60, as well as the prevalence of different types of
13 Prioritising dementia
35 35 EURODEM EURODEM 30 30 EuroCoDe EuroCoDe 25 25 20 20 15 15 10 10 dementia, rather than the overall impact of de- will also need to reassess its estimation of the num- 5 5 mentia, and so the European Commission pro- bers of Europeans living with a form of dementia. 0 0 posal to improve the collaboration between epide- Rather than estimating the number of people with 30-5960-6465-6970-7475-7980-8430-5985-8960-6490-9465-69miological>9570-74 researchers75-7980-84 through85-8990-94 the >95 possible dementia in the European Union to 6.1 million peo- creation of a European network is most welcome. ple, Alzheimer Europe will use the more accurate As a consequence of this work, Alzheimer Europe figure of 7.3 million people (See Table 4 for details). 35 50 EURODEM Table 4 Table 2 EURODEM 30 Age specific prevalence of dementia in men The prevalence of dementia in Europe Age specific prevalence of dementia in men Age specific EuroCoprevalence of dementiaDe in men 40 EuroCoDe 25 35 35 EURODEM AlzheimerEURODEM Europe calculated the numbers of people with 30 30 20 30 EuroCoDe dementiaEuroCoDe by combining the UN population statistics and 25 25 15 the EuroCoDe and EURODEM prevalence figures: e (%) e (%) 20 20 20 UN figures EuroCoDe EURODEM alenc alenc 15 15 ev 10 ev Austria 2006 123,296 111,294 Pr Pr 10 10 Belgium 2006 163,511 144,594 5 10 Bulgaria 2006 99,291 90,584 5 5 Cyprus 2006 8,024 7,285 0 0 0 Czech Republic 2006 123,194 111,141 30-5960-6465-6930-5970-7460-6475-7965-69 080-8470-74 75-7985-8980-84 90-9485-89 90-94>95>9530-59 60-64 65-69 70-74 75-79 80-84 85-89 90-94 >95 Denmark 2006 78,744 70,108 30-59Age range60-6465-6970-7475-7980-84Ag85-89e range 90-94 >95 Estonia 2006 17,825 15,831 Finland 2006 77,516 68,738 France 2005 974,391 854,219 Table 3 Germany 2006 1,368,330 1,214,085 Greece 2006 159,275 144,745 Age specific prevalenceAge specific prevalenc ofe of dementia dementia in women in women Age specific prevalence of dementia in men Hungary 2006 131,995 118,169 50 Ireland 2002 37,417 33,719 35 EURODEM EURODEM Italy 2004 1,012,819 896,688 30 40 LatviaEuroCoDe 2006 29,846 26,583 EuroCoDe Lithuania 2006 40,619 36,423 25 30 Luxembourg 2006 5,814 5,178 e (%)
e (%) 20 Malta 2006 4,524 4,122 alenc alenc ev 20 15 Netherlands 2006 210,666 187,912 Pr ev
Pr Poland 2006 391,344 354,160 10 10 Portugal 2006 153,386 137,403
5 Romania 2006 227,036 207,789 0 Slovakia 2006 51,622 46,607 0 30-59 60-64 65-69 70-74 75-79 80-84 85-89 90-94 >95 30-59 60-64 65-69 70-74 75-79 80-84 85-89 90-94 >95 Age range Slovenia 2006 25,380 22,822 Age range Spain 2006 690,992 611,734 Sweden 2006 161,327 141,948 UK 2006 931,134 822,679 7,299,318 6,486,560 Iceland 2006 3,319 2,967 Norway 2006 71,447 62,679 Switzerland 2006 125,614 110,654 Turkey 2000 253,367 242,771 7,753,065 6,905,631
14 Dementia Issue 3 i n E u r o p e May 2009 Prioritising dementia T h e A l z h e i m e r E u r o p e m A g a z i n e
The legal protection and rights of people with dementia in Norway
Focusing on Norway, Dianne Gove, Information Officer, Alzheimer Europe, takes a look at the ongoing “Lawnet” project.
The Lawnet projects and reports tion of liberty and the use of coercive measures), People with dementia and carers are regularly 2. legal capacity (covering guardianship arrange- faced with situations in which they have to make ments and various issues linked to incapacity decisions about their daily lives and which may such as marriage, voting, making a will, carrying have consequences for their future wellbeing out transaction, civil and criminal liability) and (such as obtaining a diagnosis, consenting to 3. healthcare and decision making (covering in- Dianne Gove Information Officer, treatment, making a will, managing their financ- formed consent, access to information, confiden- Alzheimer Europe es and civil responsibility). In some situations, tiality and end-of-life care issues). they may find that their rights are not respected (e.g. deprivation of liberty, the use of coercion, In the ten years following the Lawnet project, consent to treatment and disclosure of the diag- there have been several new laws and amend- nosis etc.). However, they are not always aware of ments, some of which reflect a growing awareness their rights and do not necessarily have easy ac- of the rights of people with dementia and an at- cess to the information they need. Therefore, tempt to respect and promote their autonomy. Alzheimer Europe decided to carry out an exten- Alzheimer Europe therefore felt it necessary to sive inventory of legislation relating to the rights update these reports and to draft reports for the and protection of people with dementia in Eu- countries which had joined the European Union rope. There were two initial aims: 1. to make this since 1998, as well as for Norway, Switzerland and information available to Alzheimer Europe’s Iceland. In this article, I would like to present member associations so that they could dissemi- some of the legislation from the report on nate it at national level; 2. to compare legislation Norway which has recently been drafted thanks in different countries in order to contribute to- to the assistance of Berit Holmlimo from the wards the development of recommendations for Norwegian Alzheimer Society. policy makers to improve the legal rights and pro- tection of people with dementia in Europe. Legal rights and protection In 1998, thanks to the financial support of the in Norway European Commission, Alzheimer Europe and a Norway has a mixture of legislation, of rele- team of legal experts were able to carry out this vance to people with dementia, dating back to the inventory and to draft a series of reports, which early 20th century (e.g. in the case of guardian- contained summaries of legal provisions written ship and contractual capacity) combined with in everyday terms. In addition, recommendations more recent provisions such as the 1999 Act relat- were written and a discussion paper on the use of ing to Patients Rights, the 2003 Act relating to coercion was drafted. This necessitated the trans- Biobanks and an Act on Health Research which lation into English of numerous laws. Three broad has yet to be implemented. Norway is one of the areas were addressed: 1. restriction of liberty (in- few countries in Europe with laws containing cluding involuntary internment, other depriva- specific references to dementia, such as in the
15 Prioritising dementia
Guardianship Act of 22 April 1927 and the Pa- incapable of understanding what consent in- tients’ Rights Act. Norway also has a national de- volves. However, it is stated in the Patients’ Rights mentia-specific plan, Demensplanen “Den gode Act that even a person who has been declared le- dagen”. gally incapacitated (in accordance with the 1928 Act on Incapacity) should, to the greatest extent The Patients’ Rights Act of 1999 seeks to involve possible, personally consent to treatment. These people who lack capacity in decisions relating to provisions reflect an understanding of capacity their care and treatment. For example, adults who which takes into account varying degrees of ca- are considered clearly incapable of safeguarding pacity in different domains, and a move towards a their own interests due to a physical or mental better recognition of the right to self-determina- disorder (including “senile dementia”) must nev- tion of people with dementia. ertheless be provided with information about their health condition and possible health care. A novel feature of the Patients’ Rights Act is the Competence to give consent to treatment may be recent addition of §4a which covers compulsory partly or wholly withdrawn if the person is clearly health care for adults who are incapable of con- “These provisions reflect an understanding of Berit Antonie Holmlimo, capacity which takes political advisor at the into account varying Norwegian Alzheimer degrees of capacity Association, NHA, takes a in different domains, look at some of the ways and a move towards a better recognition in which Norwegian existing of the right to self- laws and regulations can be determination improved to help people with of people with dementia and their carers. dementia.” Dianne Gove One of the concerns in deciding how to help traces a person continually. Supervision often has people remain in their own homes, is the use of a negative connotation within welfare services, technology. Technology can contribute to inde- but this has to be balanced with the fact that pendence being maintained for a longer period, alarms and technology can offer positive solu- and people with dementia should have the oppor- tions for people with dementia. tunity to use it if they want to. It can also be a help to carers for people with early dementia living at Such issues raise a series of ethical questions home. which have not yet been addressed by the authorities. Nevertheless, our concern lies with Indeed, technology for tracing a person who is the people with dementia and affording them lost is already available. On the one hand, this some independence. There have been several new type of technology offers a less radical solution cases in the media concerning people with than the locking of doors, but on the other hand, dementia who got lost. A tracking device could tracking systems may be considered more radical have been a great help in some of these cases. than, say, an alarm system, as the tracking device However, a main concern for our organisation
16 Dementia Issue 3 i n E u r o p e May 2009 Prioritising dementia T h e A l z h e i m e r E u r o p e m A g a z i n e
sent and are refusing to accept care. This para- associations of Alzheimer Europe have played a graph can only be applied if not having the treat- key role in finding legal experts who were willing ment or care would constitute a danger to the to work on these reports and to whom Alzheimer person concerned and provided that acceptable Europe is most grateful. However, several coun- voluntary solutions have been tried prior to re- tries remain for which no legal expert has been sorting to compulsory measures. This measure is found (mainly for countries in the Eastern part of an improvement on the situation in many coun- Europe). This is indeed a challenge as we cannot tries, where involuntary internment is only possi- hope to improve the legal protection and rights of ble for the treatment of the actual mental disorder people with dementia if the current legal status and where people with dementia are unlawfully cannot first be identified and brought to the deprived of their liberty in closed care homes. attention of policy makers. Moreover, such infor- mation is essential for people with dementia and So far, reports from 14 countries have been their carers who, like any other members of either updated or newly written, and reports from society, are entitled to protection and respect of a further 6 reports are in the pipeline. The member their rights. “At present, we lack sufficient laws is that technology shall not be a substitute for that carers taking leave to care for their family regulating the use of nursing personnel. members should always get an economical com- pensation. technology within Regulations regarding elderly people, welfare services for protection of privacy or technology are to be found In conclusion, we are looking for ways of amend- old people and throughout different laws/regulations/guidelines. ing laws and regulations so that people with de- people with This makes the laws difficult to relate to and follow, mentia have a good quality of life no for welfare service personnel amongst others. At matter where they live. At the same time we are dementia.” present, we lack sufficient laws regulating the use concerned about laws and regulations that raise of- Berit Antonie of technology within welfare services for old peo- ficial recognition for carers and the work they do. Holmlimo ple and people with dementia. Their work is an important contribution in our welfare state. Another issue we are occupied with at the moment concerns some of the regulations within There were 71,447 people with dementia the Social Services Act. Proposals which relate to in Norway in 2006 carers’ leave of absence for different reasons are Number of people 20000 treated in the Ministry of Labour at the moment.
A hearing, which we recently responded to, 15000 covered the possibility of extending the period of special leave for carers, with economic compensa- tion, from 20 to 60 days to care for a terminally ill 10000 family member. It also covered a proposal on leave of absence for family carers for a period of ten days 5000 during a calendar year, to care for their family members over 18 years of age (e.g. help 0 going to the doctors, dentists etc.) The proposal is Age 30-95 60-64 65-69 70-74 75-79 80-84 85-89 90-94 95 + however without pay. We strongly urged the Men ministry to change these regulations and proposed Women
17 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 Dementia Issue 3 i n E u r o p e May 2009 Prioritising dementia T h e A l z h e i m e r E u r o p e m A g a z i n e
Essential work needs support
A snapshot of state financial support given to help Alzheimer associations carry out their work across Europe
Alzheimer associations are a central component in Scotland and Spain. Others were obliged to allocate how we assist people with dementia and their carers. the support to certain projects, but were also left Originally they were created for three reasons: (a) to with some money to use as they saw fit. For exam- provide much needed information on Alzheimer’s ple, in Switzerland, part of the state funding they disease (b) to provide support for carers and to pro- received had to be allocated to holidays for people vide them with the possibility to exchange informa- with dementia and their carers as well as a national tion and experiences and (c) to raise awareness in helpline. There are also organisations which must If Alzheimer order to ensure that people are diagnosed properly. allocate all state received funding to specified associations are to Over time, the associations have grown considera- projects. This was the case in Malta, who received really help people bly, both in the size of each organisation themselves, 6.9% of their total income from the State, given as but also in terms of the number of national associa- co-sponsorship which enabled a visit to Alzheimer with dementia and tions which now exist. The first European national Netherlands. Most disturbing are those countries, their carers, then association was in the UK, which was set up in 1979. Bulgaria, Greece, Italy and Turkey, which do not re- funding for their core 30 years on, and there are now over 30 national ceive any financial support at all from the State on activities is crucial. associations within Europe. As the organisations either a national, regional or local level. Although in grew, so did their work mandate which extended to Greece the State does provide results of survey carried out by include campaigns for particular issues as well as funding for five day care alzheimer europe (3/2009) policy work. centres, no funding is allocated % of income to the work of the Alzheimer from the Such essential work cannot be done if there is in- association. Alzheimer Association State for the sufficient funding. The Paris Declaration of 2006, organisation which lists Alzheimer Europe’s political priorities, If Alzheimer associations are Vlaamse Alzheimer Liga vzw, Belgium 8.27 calls upon “national governments to recognise the to really help people with Alzheimer Bulgaria 0.00 important contributions provided by Alzheimer as- dementia and their carers, then Czech Alzheimer Society, Czech Republic 63.00 sociations and to provide financial support to these funding for their core activities France Alzheimer 3.00 organisations in order to help them to improve the is crucial. The German associa- Deutsche Alzheimer Gessellschaft 37.00 services they give to people with dementia and their tion were able to do just this, e.V. Selbsthilfe Demenz, Germany Greek Association of Alzheimer Disease 0.00 carers.” Alzheimer Europe carried out a survey re- with money received being and Related Disorders, Greece garding the current financial support of its member used for their helpline, infor- The Alzheimer Society of Ireland 60.5 organisations which reveal a huge discrepancy be- mation brochures, an aware- Federazione Alzheimer Italy 0.00 tween levels of support around Europe, with some ness campaign as well as the Malta Dementia Society 6.90 organisations receiving 85% of their income from support of local structures and Alzheimer Nederland, Netherlands 6.22 some form of State support and others nothing. a conference. The Norwegian Alzheimer Association, 26.00 Norway Of those which received support, the conditions With the dementia epidemic Alzheimer Scotland 3.00 Confederación Española de Familiares de 78.77 varied. Some organisations were free to allocate how looming, national governments Enfermos de Alzheimer y Otras Demencias they used the financial support received, such as in need to act now. (CEAFA), Spain Alzheimerföreningen i Sverige , Sweden 9.00 Demensförbundet, Sweden 85.00 19 Association Alzhemer Swiss, Switzerland 11.00 Alzheimer Society of Turkey 0.00 Prioritising dementia
Debating Dementia in the European Parliament
A summary of two lunch debates on dementia which were held in the European Parliament.
In December 2008, the first debate, on the findings of the European Collaboration on Dementia project’s working group on the socio-economic cost of Alzheimer’s disease, was presented by Anders Wimo, MD, PhD.
Jan Tadeusz Masiel disease, was hosted in 2006 by Astrid Lulling, (MEP, Poland) hosted (MEP, Luxembourg). In 2007 the second Year- “The group found Alzheimer Europe’s book was launched at a lunch debate hosted by that prevalence fourth lunch debate Françoise Grossetête (MEP, France). The publica- forecasts for the in the European tion presented the first part of the European Parliament and be- Collaboration on Dementia (EuroCoDe) project whole of Europe have gan the proceedings results on support systems to patients and their risen from just over 4 by explaining that caregivers. million people with the lunch debates dementia in 1970, to had become some- Highlighting additional ways in which MEPs thing of a tradition have the opportunity to be kept informed about predictions of over 12 Anders Wimo between Alzheimer Alzheimer’s disease, Mr Masiel spoke of the 80 MD, PhD, Adjunct professor million people with KI Alzheimer’s Disease Research Center, Europe and the Eu- MEPs who had already pledged their support to Department of Neurobiology, Care ropean Alzheimer’s fight Alzheimer’s disease by signing the Paris dementia by 2030” Sciences and Society, Karolinska Anders Wimo Institute Alliance, enabling a Declaration, which lists Alzheimer Europe’s platform for discus- political priorities, or/and becoming a member of sion about Alzheimer’s disease within the Europe- the European Alzheimer’s Alliance. an Parliament. Great interest was shown by some 45 participants, including 13 MEPs and/or their Jean Georges, Executive Director of Alzheimer assistants attending as well as national Alzheimer Europe, thanked Mr Masiel for hosting the meet- Associations, representatives of permanent repre- ing and talked about the work of Alzheimer Eu- sentations and pharmaceutical companies. rope, highlighting the EuroCoDe project and also explained how MEPs can help people with demen- Commenting on the launch of the third Dementia tia. Launching the second issue of the Dementia in in Europe Yearbook which focuses on social sup- Europe magazine, Mr Georges stressed that the port, socio-economic cost, psycho-social inter- magazine focuses on European policy on dementia ventions and prevention, Mr Masiel reflected that and that a large proportion of this issue has been each of the three Alzheimer Europe Yearbooks dedicated to coverage of the recent French Confer- had been launched at European Parliament lunch ence, saying that he found it both truly inspiring debates. The launch of the first Yearbook, which and humbling to receive the unequivocal backing presented the number of people suffering from of a European plan from no less than the President dementia in Europe, access to treatment and of France as well as Ministers from various Euro- reimbursement for treatment for Alzheimer’s pean countries.
20 Issue 3 May 2009 Prioritising dementia
Jan Tadeuz Masiel, MEP (Poland) Astrid Lulling, MEP (Luxembourg)
Finally, Mr Georges spoke of Alzheimer Europe’s from 15 million in 1970 to 110 million by 2050, recently completed EuroCoDe project, which had with a dramatic exponential increase being expect- been funded by the European Commission under ed in the developing countries. their Health Programme and introduced Anders Wimo, who was the leader of the socio-economic Defining what constitutes a cost is controversial cost of Alzheimer’s disease work package within but Mr Wimo said that his group looked at two EuroCoDe. types of cost (a) direct costs such as medical (e.g. hospital care, drugs) and non-medical costs (e.g. Presenting the aims of the EuroCoDe work pack- nursing, home care, home services) (b) indirect age 8 as being to firstly identify reports on the so- costs such as production losses of patients and of cio-economic cost of dementia and subsequently to unpaid informal carers. Mr Wimo said that quan- “the group had produce a report on the cost of dementia within tifying informal costs is a big issue and not easy to found the societal the European Union, Anders Wimo explained that achieve. The group noted that the cost of illness fig- costs of dementia in their report on the cost of dementia had been cal- ures are merely descriptive as they do not include culated for three groups: (a) EU27 (b) EU27 plus anything about cost effectiveness. the EU to be the candidate countries (Croatia, Former Yugoslav enormous and if Republic of Macedonia and Turkey) plus EEA The total cost of dementia in the whole of Europe treatment remains (Norway, Iceland and Liechtenstein) plus Switzer- in 2005 amounted to EUR 141 billion, or on an an- the same then the land and (c) the whole of Europe (including nual basis, the cost was found to be EUR 16,770 per amongst others Russia). The working group identi- person with dementia: In these cases, the majority cost will rise from fied 14 papers for inclusion in their cost model, of the cost is for informal care. However, when the EUR 130 billion to from which four different care patterns had costs are examined at a regional level the direct EUR 200 billion by emerged (a) Northern (Denmark, Ireland Scandi- costs were found to be greater for the Northern and 2030.” navia, Sweden and the UK), (b) Western (Belgium, Western regions than the Eastern and Southern re- France, Germany and the Netherlands), (c) South- gions, with the cost of informal care being signifi- Anders Wimo ern (Italy, Spain and Turkey) and (d) Eastern cantly greater than the direct costs in the Southern (Hungary). For countries where no cost of illness region. The figures, he said, illustrate the magni- figures were available the working group used im- tude of the costs of informal care and he went on to putation. give a personal example of informal care, showing a photograph of his great-grandmother with his Future cost calculations will be affected by the great aunt Christine. Mr Wimo told participants predicted increase in prevalence rates. The group that Christine had left Sweden and successfully set found that prevalence forecasts for the whole of up a new life for herself in the US. However, when Europe have risen from just over 4 million people his great-grandmother wrote to her to ask her to with dementia in 1970, to 8 million in 2005 with come home, Christine did so and took care of her predictions of over 12 million people with demen- for 30 years and this was considered a natural tia by 2030 and that prevalence is higher in women thing to do then. He then posed the question that than men. This is because there are more women in our modern societies with so much migration, than men, but also because being female is a risk who will be there to care in future generations. Mr factor for dementia. They also found a similar rate Wimo believes that this will be a key challenge fac- of increase reflected worldwide with figures rising ing people with Alzheimer’s disease.
21 Prioritising dementia
Standing: Agnieszka Szczesniak, Assistant J.T. Masiel, Milan Cabrnoch, MEP (Czech Republic) talks with Iva Holmerová, Jan Tadeusz Masiel, MEP (Poland) Czech Alzheimer Society Sitting: Zdzislaw Podkanski, MEP (Poland), Alicja Sadowska, Polish Alzheimer Society, Mieczyslaw Janowski, MEP (Poland)
Looking at the costs comparatively, Mr Wimo Mr Wimo concluded that the group had found asked for caution as comparisons are not often so the societal costs of dementia in the EU to be enor- easy to make and he emphasised the importance of mous and if treatment remains the same then the transparency, as it is essential to understand the cost will rise from EUR 130 billion to EUR 200 bil- Mr Masiel stressed basis of the calculations if you are going to com- lion by 2030. He highlighted the need for much the importance of pare them. The working group considered other more data from Eastern Europe to help make the fully understanding cost estimates which had given a cost per person figures more meaningful. They also found infor- with dementia in Europe and these ranged from mal care to be a substantial part of the total cost of all aspects of the EUR 11,000 to EUR 28,000. In comparison to the dementia and that the quantification of informal disease and of rest of the world, the working group found that Eu- cost is crucial for any cost estimates. working closely with rope has the highest cost of dementia, followed by the European Asia and North America but that the cost per per- Jean Georges thanked Anders Wimo for his in- son is highest in North America and Europe is teresting presentation, as well as Mr Masiel and Commission to find a placed third. Agnieszka Szczesniak for their help in hosting and solution to the preparing this lunch debate. problems faced by Comparisons were made with other illnesses. patients and Dementia was the higher cost (EUR 141 billion) Closing the lunch debate Jan Tadeusz Masiel of- when compared to the cost of depression (EUR 121 fered his heartfelt appreciation to Mr Wimo for his caregivers. billion). The cost of dementia in Europe is in excellent presentation, saying that the EuroCoDe second place both on a per case basis (after strokes) project had managed to provide a clear picture on a and on a cost of illness basis (after alcohol). subject often difficult to grasp: namely the socio- economic costs of Alzheimer’s disease and he went Looking at the difference between the more de- on to say that the results will be an essential basis veloped regions, less developed regions and least for the work of political actors at both a national developed countries, the cost burden of the disease and European level. He shared Mr Wimo’s concern was also compared by using the measurement of regarding future carers noting that in the next dec- “disability adjusted life years” (DALYs) which is a ades there will be less and less people in the labour measure of the overall disease burden frequently force which will create a major challenge for the used by the World Health Organisation (WHO). elderly. Mr Masiel stressed the importance of fully Diabetes was then compared to dementia by using understanding all aspects of the disease and of the DALYs and Alzheimer’s disease and dementia working closely with the European Commission to were found to be a higher burden than diabetes in find a solution to the problems faced by patients all three EU categories. The figures showed, said and caregivers. He also praised the role played by Mr Wimo, that dementia creates great disability national Alzheimer associations calling their con- throughout the world.” tributions “vital for us all”.
22 Dementia Issue 3 i n E u r o p e May 2009 Prioritising dementia T h e A l z h e i m e r E u r o p e m A g a z i n e
Jan Tadeusz Masiel, MEP (Poland) with Marie Panayotopoulos- Cassiotou, MEP (Greece)
The second debate, “Towards a European Action Plan on dementia” was held in March 2009. This debate was presented by Florence Lustman, the Coordinator of the French Alzheimer’s Plan, and Antoni Montserrat from the European Commission.
“Towards a European Action Plan on Alzheimer’s Lustman and Mr Montserrat, had been hugely in- Disease” was the focus of Alzheimer Europe’s 6th strumental in helping to make dementia a Europe- lunch debate which was hosted by Françoise an priority. Grossetête (MEP, France) and presented by both Florence Lustman, the Coordinator of the French Ms Lustman took to the floor first and gave an Alzheimer’s Plan together with Antoni Montserrat, overview of the comprehensive 3rd French Alzhe- the Policy Officer for rare diseases, neurological imer’s Plan, which was launched last year. Unlike and neurodevelopmental disorders, Directorate of previous plans which focused on health issues at a Public Health, European Commission. national level, she highlighted that this 3rd Plan Françoise Grossetête, MEP (France) also took a global perspective and included research Jean Georges, Executive Director of Alzheimer issues too. In addition, Ms Lustman explained that Ms Grossetête Europe, introduced the debate by paying tribute to there is a direct report line to the President of reminded the the “champions” who had helped to put a European France, Nicolas Sarkozy, and that this personal audience that there spotlight on Alzheimer’s disease: the French Presi- commitment ensures that the Plan is taken serious- dent who, during the European French Presidency ly at the highest level of State. is much more work had given his personal commitment to ensuring to be done that Alzheimer’s disease be addressed, the politi- Although the long-term goal is to find a cure for cians who have been active and supportive of the the disease, there is no sign of a breakthrough with- European Alzheimer’s Alliance. In particular, he in the next five years and therefore, said Ms Lust- thanked Françoise Grossetête for her unrelenting man, the real challenge is to improve the quality of support of Alzheimer Europe’s work and her deter- life of patients and carers and that it is important to mination alongside MEPs John Bowis (UK), get a continuous chain of care which is lacking at Katalin Levai (Hungary), Jan Tadeusz Masiel, present. She was pleased that their educational pro- (Poland) and Antonis Traketellis (Greece) for initi- gramme for carers had just been published. ating and seeing through adoption of the Written Declaration 80/2008 on the priorities in the fight Concluding her presentation, Ms Lustman reflect- against Alzheimer’s disease, and last, but by no ed on the achievements in the field of Alzheimer’s means least - the people who make up the member disease which had been made during the recent six- associations of Alzheimer Europe. Mr Georges month French Presidency, highlighting the conclu- said that the support of the Declaration, like sions regarding neurological degenerative diseases dementia itself, had cut across borders, party which were made by the Competitiveness Council allegiances and nationalities. as well as the conclusions by the Health Council which decided to combat age-related diseases and Jean Georges explained that both the host of this called on Member States for national initiatives. lunch debate, Ms Grossetête, and the presenters, Ms The Competitiveness Council’s conclusions have
23 Prioritising dementia
Elisabeth Morin, MEP (France), with Antoni Montserrat, Policy Jean Georges thanking Françoise Grossetête, MEP (France) Officer for rare diseases, neurological-neurodegenerative diseases, European Commission
resulted in the launch of a European initiative this cluded that whilst a good start had been made year: some Member States have agreed, on a volun- that now it was time to “roll up our sleeves” and tary basis, to meet, discuss and pool research in de- continue the work carried out by the Council and mentia in order to prevent duplication in research Commission. and maximise the investment. Ms Lustman was impressed that already nine countries had committed Speaking on behalf of the European Commission, to this process. However, she reminded the Antoni Montserrat, told participants that the audience that we still do not know for certain the Commission first took action on Alzheimer’s Florence Lustman number of people with disease at a European level disease in 1996. More recently it had given its as many countries have poor systems of diagnosis support to Alzheimer Europe’s European Collabo- ”Some Member and this, she stressed, has to be addressed. ration on Dementia project (2006-2008) (EuroCo- States have agreed, De) which has resulted in three Yearbooks high- on a voluntary basis, Françoise Grossetête then spoke of her delight lighting stark differences between the 27 Member that the European Parliament’s Written Declara- States. He explained that the differences found are to meet, discuss and tion had been adopted and thanked Alzheimer Eu- extremely useful as they as they make people listen, pool research in rope and its national associations for their hard acting as a basis for further actions. Indeed, the dementia in order to work in drawing attention to this issue, enabling results from EuroCoDe have changed the situation prevent duplication the European Alzheimer’s Alliance to take up its of the Commission’s Health Strategy. role. She stressed the fact that it is not possible to in research and speak about the demographic problem without tak- Directly addressing the call for a European health maximise the ing into account the consequences of an ageing action plan, Mr Montserrat explained that the investment”. population. Commission does not have a tradition for “disease Florence Lustman specific” actions plans with the exception of cancer, Ms Grossetête said that whilst many politicians communicable diseases and, just recently, rare were sympathetic to the problems associated with diseases. He also said that the Commission does dementia, it was vital that this sympathy was turned not have the means to adopt action plans for all into the positive action. She acknowledged the role different kinds of diseases. However, Mr Montserrat that national associations had made by asking their stated that the Commission is in a position to MEPs directly to give their support and spoke of engage Member States in addressing a particular her pride in her Parliamentary colleagues, of which issue and monitor implementation of the recom- some 60% had signed the Written Declaration. mendations. This is why the two recent Council’s recommendations, which call for action in the field Whilst the first step has been made, Ms Gros- of Alzheimer’s disease, together with the momen- setête reminded the audience that there is much tum built in the French Presidency, have stimulated more work to be done if we are to be sure that peo- the Commission to act and work on an Alzheimer’s ple with dementia and their carers receive the ap- initiative and Mr Montserrat proceeded to lay propriate support and services. Recognising the down the Commission’s plans to do so. work France has already begun, she highlighted the need for other countries to also address this disease Firstly Mr Montserrat spoke of the joint pro- and emphasised the importance of coherent re- gramming initiative on research which is being search which can be put to a common use. She con- developed, with the aim of avoiding the current
24 Dementia Issue 3 i n E u r o p e May 2009 Prioritising dementia T h e A l z h e i m e r E u r o p e m A g a z i n e
Milan Cabrnoch, MEP (Czech Republic)
waste and duplication of research by inviting na- Sirpa Pietikäinen (MEP, Finland) stated that tional Member States, on a voluntary basis, to there is a need to do something at an EU level in pool ideas together. To date, nine countries have terms of patients’ rights and role of assessment and signed up and the Commission hopes that more suggested the model of environmental impact as- will join before July this year. The Commission sessment to speak on someone’s behalf be applied. also hopes to build on information gained from However, Antoni Montserrat said that rather than EuroCoDe, which he said, was an excellent say a particular model should be employed, it is project achieved by good collaboration with preferable to say that any one model is one which Alzheimer Europe. To contribute to track early may be considered. Antoni Montserrat diagnosis of dementia across Europe, the Com- mission plans to carry out “The European Health Whilst thanking the European Parliament for “It is essential that Examination Survey” including a cognitive de- their “fantastic support”, Alicja Sadowska of the (the Commission) cline module for which people will be invited to Polish Alzheimer’s association, also highlighted works with a solid go to a clinician and be examined. The Commis- the fact that there are differences between the sion can also employ initiatives used by the Social Member States, with some governments not yet partner, such as Protection Committee in order to establish agree- ready to face the problem or do anything about it. Alzheimer Europe, as ment and definition for standards of care. She asked that those MEPs who are elected in June they need organised support our work to ensure that the associations dialogue with access However, in order for the Commission to be effec- are not left powerless. tive for people with dementia and their carers it is to EU patient essential, said Mr Montserrat, that it works with a Again, recognition was given to the work Alz organisations”. solid partner, such as Alzheimer Europe, as they heimer associations are doing when Milan Cabrn- Antoni Montserrat need organised dialogue with access to EU patient och, (MEP, Czech Republic) thanked the associa- organisations. He spoke of the importance of devel- tions and said that, as politicians, they need the oping best practices guidelines and his hope that associations’ advice as without this they don’t work done in the Yearbooks be extended. know which problems exist.
Therefore, there are various initiatives which are Martin Banks, Editor, Parliament Magazine open for consideration by the Commission when asked for examples of recognised public figures addressing Alzheimer’s disease. Indeed, one day who have/have had this disease. Jean Georges cited it may be possible to conclude what actually con- a few examples such as Ronald Reagan, Margaret stitutes a “healthy brain lifestyle.” Whilst the Thatcher, Terry Pratchett and Iris Murdoch but Commission’s approach is not extensive nor am- emphasised that different countries have different bitious, it is possible to reuse existing initiatives levels of openness about this disease. in an imaginative way. Mr Montserrat concluded by saying that in an ageing society, (which the Thanking the host and presenters for their com- Swedish presidency has pledged to make a priority), mitment in so strongly supporting making demen- perhaps the three most useful approaches for the tia a European priority, Jean Georges made special Commission to employ are to be found within mention again of the Written Declaration’s initia- their public health, research and social protection tors. He closed the meeting by wishing all MEPs activities. the best of luck with their forthcoming elections.
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Alliance Members Activities
Acipit iriure consequatet senim vel ullaore doloreetue minis num at nim ver se faccumsandre Election Special
In the run up to the elections, Alzheimer Europe asked Members of the European Parliament the following questions: 1. As the mandate of this European Parliament draws to a close, we would be very interested in hearing which you consider to be the key accomplishments of this Parliament which had a direct impact on people with Alzheimer’s disease and their carers? 2. After the European Parliament elections in June, which are the main policy initiatives that will be important for people with dementia and their carers? 3. If re-elected, do you have any personal priorities that would be of particular interest to people with dementia and their carers? Here’s what they said …
I election special Frieda Brepoels (Belgium) and data. We can learn a lot by exchanging best The key accomplish- practices and experiences, for example on training ment of the European of health professionals and carers. The EU can also Parliament is obviously (co-)fund and coordinate research on neurodegen- the adoption of the erative diseases, and stimulate research into new Written Declaration medication, treatment (for example, programmes 80/2008 on Alzheimer’s that stimulate cognitive functions and hence slow disease, which was down the progression of dementia) and medical signed by an over- technologies to support patients, their families and whelming majority of carers. A lot remains to be done in this area. MEPs. The adoption Group of the European People’s confirms the recogni- Brian Cowley (Ireland) Party (Christian Democrats) and tion of Alzheimer’s dis- I will continue to European Democrats assist people with Member of the Committee on the ease as a priority on the Environment, Public Health and European health agen- dementia and ensure Food Safety da. For me, the strength their carers have the of the declaration lies in maximum amount of its comprehensive approach. It not only recognises protection and services. the urgency to respond to the health challenges As I was one of the posed by Alzheimer’s disease, but also highlights the founders of the European important social challenges we are facing and calls Alzheimer’s Alliance, I for evidence-based action by underlining the impor- will continue, if elected, tance of research. Co-president of the Union for to push the concerns of Europe of the Nations Group all carers and those Moreover, the adoption of the Resolution on Men- Member of the Conference of tal Health equally provides a hopeful signal. The Presidents and the Committee suffering from dementia. “The new Parliament resolution recognises mental health of older people on Constitutional Affairs as a priority and stresses the need to promote will have to monitor research into prevention and care with regard to Astrid Lulling (Luxembourg) carefully the neurodegenerative disorders and other age-related The European Parlia- outcomes of the mental illnesses. Furthermore, it asks for any future ment (EP) has played a Commission action or proposal to distinguish big role in raising Written Declaration” between Alzheimer’s disease or similar neuro awareness and moving Frieda Brepoels, degenerative disorders and other forms of mental the European policy agenda forward. After Belgium illness. Also, the horizontal priority of the Resolu- tion, prevention of stigma and social exclusion, the two Council recom- seems very relevant for Europeans confronted with mendations of Septem- Alzheimer’s disease. ber and December 2008, At the EU Health Forum in December 2008, Pub- the EP Written Declara- lic Health Commissioner Vassiliou announced an Group of the European People’s tion on Alzheimer’s Party (Christian Democrats) and disease that I have initiative on Alzheimer’s disease for 2009. It will be European Democrats crucial for the new Parliament to follow these devel- Quaestor of the European signed is another step opments closely. Parliament and Member of the forward in making Committee on Women’s Rights dementia an EU priority. Furthermore, I think, as a first stage, the new and Gender Equality and the Parliament will have to monitor carefully the Committee on Economic and The European Commis- outcomes of the Written Declaration. The elected Monetary Affairs sion is now called upon MEPs will have to make sure that Member States from all sides to have an and the Commission step up their actions and keep initiative on Alzheimer’s disease and encourage na- Alzheimer’s disease high on the agenda. Finally, tional Alzheimer plans. I was glad to hear that Com- the implementation of the Mental Health Pact also missioner Vassiliou had announced a Commission deserves full attention. initiative on Alzheimer’s disease in 2009. We all know that Europe’s ageing population will The ageing of the population is a sensitive issue. make more people - including people with Alzheimer’s The increase in the number of older people will be disease - dependent on care. Though people with coupled with an increase in the number of people Alzheimer’s disease have different, individual needs, with dementia. In Luxembourg, it is estimated that many want to stay at home as long as possible. In some 4,500 persons suffer from dementia (over 1% this regard, I would like to see more European of the population). These numbers are expected to initiatives related to homecare. I strongly believe the double and even treble by 2050, having a huge EU can have an added value by raising awareness impact on health and social services. It is therefore and establishing indicators to collect information imperative to act now and answer the needs of
II election special people with dementia and their carers and plan for I hope that the European Alzheimer’s Alliance will the future. continue during the next mandate and I pledge my I will ensure that the EP Written Declaration and continued and active support. My priorities will be French Presidency conclusions are followed by to ensure that the decisions made by the European actions in the next EP and will follow with great Parliament, the European Commission and the interest the Commission’s Alzheimer initiative. I Council are followed by concrete action that will re- remain committed to supporting the work of lieve the plight of people with dementia and carers, Alzheimer Europe during the next mandate as well and take up the challenges of an ageing population. I as continuing to support the European Alzheimer’s will also do my very best to motivate Polish policy Alliance and ensuring it gets the European Parliament makers to ensure that Poland takes these European recognition it deserves. developments fully on board. Jan Tadeusz Masiel (Poland) Linda McAvan (United Kingdom) The European Parlia- Over the course of its ment has played a sig- current 5-year mandate, nificant role in raising the European Parlia- awareness about Alzhe- ment has been the venue imer’s disease and the for various awareness- impact this disease has raising events, semi- on people themselves, nars, special interest their carers and society. groups and workshops. The members of the These are designed to European Alzheimer’s bring together organisa- Union for Europe of the Nations Alliance - of which I Vice-Chairwoman of the Socialist tions, MEPs and EU Group have been an active Group policy-makers to dis- Member of the Committee on Member of the Committee on the Employment and Social Affairs member since the very Environment, Public Health and cuss the treatment and “The next policy beginning - have been Food Safety research of Alzheimer’s instrumental in raising the profile of this disease not disease in a European initiatives must only at European level but also at national level. It is context. The Parliament also approved a wide-rang- focus on research. without any hesitation that I joined Françoise ing research programme proposal - with a total Grossetête and four fellow MEPs to launch the EP budget of EUR 50 billion over 5 years - which in- More research must Written Declaration on the priorities in the fight cludes a specific reference to brain and related dis- be carried out in against Alzheimer’s disease. This Declaration eases. This fund has ensured that research into order to find the received an outstanding response from my Alzheimer’s disease has received vital financial sup- colleagues. I am very proud that the European port from the European Union. More recently, the cause(s) of Parliament has added its voice to that of the Council European Parliament adopted a Written Declara- Alzheimer’s disease and the European Commission who both recently tion on Alzheimer’s disease, which calls on policy and then the put Alzheimer’s disease on the European agenda. makers in the European Union and Member States The next policy initiatives must focus on research. to make the disease a European public health prior- identification of More research must be carried out in order to find ity. It also includes specific reference to supporting treatments.” the cause(s) of Alzheimer’s disease and then the sufferers, their carers and Alzheimer’s associations. Jan Tadeusz Masiel, identification of treatments. In our current economic As this Written Declaration is now the official posi- crisis, it is important that health still receives due tion of the European Parliament, the European Poland attention and that investments in health are kept on Commission will work towards ensuring that it is the agenda. I thus much welcome this European reflected in future policies, including funding pro- initiative of the Member States to network in order grammes. to pool resources in the field of research, to avoid Europe’s population is ageing, and the policy initi- duplication and a waste of resources, and to optimise atives of the European Union will be central to en- research. This should be of great benefit not only to suring a coordinated effort to fight Alzheimer’s dis- people with dementia but also to carers. ease. A union-wide health monitoring system will I am keen to see policies that will address the play an important role in terms of collecting mean- inequalities across Europe in the area of diagnosis, ingful and comparable data about Alzheimer’s dis- treatment and care. I would call for European guide- ease and associated issues, such as causal factors and lines and strategies to help the Member States that preventative strategies. Continued funding for re- are lagging behind. search, as well as increased support for Alzheimer’s The EP Written Declaration calls for a European associations, will help all Member States cope with action plan for Alzheimer’s disease. These two initi- the social and economic costs of Alzheimer’s and atives should certainly be included in this European work towards better conditions for carers and better Plan. treatment for people with Alzheimer’s disease.
III election special Everybody knows somebody who has been affect- improvements in care and support for sufferers and ed by Alzheimer’s disease. I believe that every effort their carers throughout Europe. should be made to bring together the best profession- Alzheimer’s disease was included as a priority initi- als and researchers from across Europe to tackle this ative in the Commission’s Legislative and Work terrible disease. In the last Parliament, I and other Programme for 2009 and we can therefore be hopeful MEPs formed a Special Interest Group in the Euro- that progress will continue to be made throughout pean Parliament which focused specifically on brain 2009 and under the Czech and Swedish Presidencies. disorders. I very much hope we will be able to contin- If re-elected in June, I would hope to see rapid ue this work in the next Parliament. progress made on such an action plan in order to allow Alzheimer’s sufferers to age with dignity and be Claude Moraes (United Kingdom) cared for to the highest standards. Furthermore, I I appreciate the would like to see more support for the carers whose chance to highlight the jobs and employment rights are often affected by the work the European Par- time they spend caring for people with Alzheimer’s liament has done to help disease. people with Alzheimer’s disease as well as their Elisabeth Morin-Chartier (France) carers. The European Alzhe- However, I also recog- imer’s Alliance, of which nise that Alzheimer’s I have been a member as disease must remain a a Member of the Euro- Socialist Group Member of the key health priority in pean Parliament, has Committee on Civil Liberties, Justice and Home Affairs President the European Union, been very instrumental of the Anti-Racism and Diversity and that much work still in the European Parlia- Intergroup and Co-President of the needs to be done to im- ment in raising aware- Intergroup on Ageing “The recent prove care and support ness about the urgency for those affected by the disease. for Europe and the declaration from the I am pleased that the gravity of Alzheimer’s dis- Group of the European People’s Member States to make ease is now recognised throughout Europe and that Party (Christian Democrats) and Alzheimer’s disease a European Parliament European Democrats Member of calling on the research carried out into the disease has developed the Committee on Employment public health priority. hugely over the last few years. and Social Affairs The success of the Alli- Council, Commission • The Community Public Health Programme, ance’s work in the European Parliament was epito- and Member States adopted by the Parliament and Council, support- mised by the signing of the EP Written Declaration ed and provided funds for the European Collabo- on Alzheimer’s disease by some 60% of the Members to develop a ration on Dementia to bring together Alzheim- of the European Parliament, from all EU Member European action plan er’s organisations across Europe. States and EP political groups. is crucial.” • Also, funding from the 5th, 6th and 7th frame- Not only has the Alliance increased awareness, it work programmes has helped drastically im- has also motivated the Members of the European Par- Claude Moraes, prove research into Alzheimer’s disease and the liament to take the issue to national level. I am par- United Kingdom ERA-NET is helping to promote cooperation in ticularly proud that French President, Nicolas research across national bodies responsible for Sarkozy, launched in 2008 a broad and comprehen- research into Alzheimer’s disease in Member sive Alzheimer Plan. His decision to organise a con- States. ference dedicated to Alzheimer’s disease during the • Furthermore, the 2008 conference held in Paris EU French Presidency has produced recommenda- entitled “The fight against Alzheimer’s and relat- tions that were later on taken on board at two Council ed diseases” was yet another chance to discuss meetings. and bring focus to the issue. Since then, I was equally happy to hear Androulla MEPs continue to use their position in Parliament Vassiliou, Health Commissioner, announce that to question the Commission and Council on the European Commission will be launching an progress made in the field to ensure that the issue Alzheimer initiative in 2009. remains a priority. It is quite remarkable that within a fairly short Although research has improved greatly, action is period of time, the three major EU institutions have now needed to bring into effect policy that improves converged towards the common goal of addressing the lives of sufferers and carers based on the recom- Alzheimer’s disease comprehensively. This is a mendations of this continuing research. This is why concrete example of what Europe can do to improve the recent declaration from the European Parlia- the quality of life of people with Alzheimer’s ment calling on the Council, Commission and disease and their carers. Member States to develop a European action plan is I welcome the French EU Presidency initiative to crucial. Such an action plan will be vital to ensure invite the Member States to form, on a voluntary
IV election special basis, a European network that will pool resources in within the EU without any discrimination benefited the field of Alzheimer’s disease, thereby avoiding du- people with Alzheimer’s as well as their carers. plication and waste of resources. To date, some 10 EU Moreover, more specific and focused actions have countries have responded positively to this invitation been taken, whereas research, prevention and treat- and it would be comforting to see the remaining ment for the Alzheimer have been encouraged. countries join the network. This initiative certainly The French Presidency took significant steps and needs to be further promoted to yield results that will the dialogue between the European institutions was benefit the research community, people with demen- set up with the active inclusion of the national stake- tia and carers. holders. The discussions and decisions made within the con- My personal point of view is that future policy ini- text of the current economic crisis must never forget tiatives should include: the people with dementia and their carers. The ageing • special measures that will fill the gap between of the population associated with age-related diseases different generations so that each person with and the foreseen reduction of the labour force will Alzheimer’s disease, or other incurable diseases, lead to an increase in the need for caring professions, has access to a social infrastructure providing respite care and tailor-made social services. The opin- cohesion and support, ion I made on behalf of the Employment and Social • the raising of awareness and a fight against stig- Affairs Committee for the Committee on Economic ma and an improvement in the quality of public and Monetary Affairs on a European recovery plan in services should function at a European level particular calls on the Member States to invest in the equally, social economy which can contribute towards growth • organisation and cooperation with regard to re- since it has a considerable potential for creating high- search in all Member States, use of structural quality jobs and strengthening social and territorial funds, especially the European Community cohesion. It is important that all future EU policies Funds, to improve access to diagnosis and treat- take these parameters into account. ment, I also look forward to the recommendations that • at national level, funding by national institutions “The European will be brought forward by the Czech Presidency con- so that they cover medical and social insurance, ference on the care and social protection of seniors. • a proposal for increased dialogue between all Alzheimer’s Alliance The new European Parliament will need to be vigi- stakeholders in order to encourage and authorise must survive during lant and ensure that the recommendations of the relatives to take care of people with dementia and Council and the Parliament are followed by concrete improve the quality of life of both people with the next term and measures. I will of course follow with great interest dementia and their carers. pursue its excellent the European Commission initiative on Alzheimer’s If I am re-elected, my personal priorities which I work.” disease and offer my support. believe would be of particular interest to people with The European Alzheimer’s Alliance must survive dementia and their carers are a) the promotion of re- Elisabeth Morin- during the next term and pursue its excellent work. search for Alzheimer’s disease by making use of the Chartier, France Considering the challenges of an ageing population EU Seventh Framework Programme, b) the enforce- and the foreseen increase in the number of people ment of horizontal policies for the family which ad- with dementia, it would be legitimate for the Alliance dress factors linked to the generation gap and c) that to be granted formal recognition by the European all Member States provide services after retirement. Parliament and thereby optimise its outreach. I here- by would like to congratulate Alzheimer Europe for Sirpa Pietikäinen (Finland) its passionate work and recent achievements. I am France’s high priori- happy to have been part of this adventure and pledge tising of Alzheimer’s to continue in the future. disease during its EU Presidency in 2008 Marie brought forward a gen- Panayotopoulos- eral debate about Alzhe- Cassiotou (Greece) imer’s disease in Europe In general, the majori- and put a dynamic de- ty of the decisions taken velopment programme during the mandate in place in this area. The 2004-2009 concerning Group of the European People’s European Parliament the improvement of the Party (Christian Democrats) and has also been active in European Democrats living conditions and Member of the Committee on the field. The Written the care of people living Economic and Monetary Affairs Declaration on the fight Group of the European People’s Party (Christian Democrats) and against Alzheimer’s dis- European Democrats, Member of the Committee on Women’s ease adopted by the Parliament in February 2009 is Rights and Gender Equality, the Committee on Petitions and the Committee on Employment and Social Affairs, President of the an important step forward in making Alzheimer’s Intergroup of Family & Protection of Childhood
V election special disease a European public health priority and espe- and interacts with Parliamentary Intergroups, such cially in developing a European action plan on the as the Intergroup for Disability, the Intergroup on issue. The green paper on Improving the mental Ageing and the Intergroup for Family, where the is- health of the population voted for in 2006 gives special sue of carers is critical. attention to carers and suggests that they should be Two reports that I authored that I felt were relevant consulted when developing Commission proposals in to people with dementia and their carers were the the future. Employment and Social Affairs Committee report The first priority is to ensure a more effective on the European Mental Health Strategy and the mechanism to defend patients and caregivers’ rights. Environment, Public Health and Food Safety Com- We need to legally strengthen the role of Alzheimer mittee report on Prevention of Injury and Promo- associations as defenders of the rights of people with tion of Safety. dementia and caregivers. The same principles that Finally, I brought two European Commission guarantee NGO´s rights of access to information projects to Ireland on the Rescue of Person with Dis- and public participation in decision-making in en- abilities in Emergencies. The first project was gener- vironmental matters, as stated by the Århus conven- al while the second focused on flooding. I am one of tion, should be applied to Alzheimer’s disease. Sec- the first signatories of the “Verona Charter” which ondly, caregivers’ support systems should be came out of these projects and emphasises the right enhanced and their legal status improved. Thirdly, a of people with disabilities to be treated equally in united European action in prevention, early diagno- access to rescue services. I am currently a co-author sis and support should be created. Fourthly, the re- of a Written Declaration in the Parliament which sources for research need to be substantially in- urges the Commission and Member States to en- creased in all fields related to dementia. dorse the principles of the Verona Charter. The main priorities are to strengthen the role of Carers are often under-valued and neglected in advocacy groups and to invest in research and pre- most European laws and policies. Carers are invisi- cautionary care. Just as it is important, or even more ble in employment legislation, despite the EU’s com- “I feel that the key so, to underline the need for high-quality, medical petence in this area. We need to bring carers and care, one needs to emphasise the role of decent their concerns into focus and support them. Carers accomplishment of everyday-life and routines for each individual. The are important in how we deal with an ageing Europe this Parliament was much-appreciated work of family carers should be in terms of meeting the needs of our older citizens evaluated and supported by the provision of re- and stabilising our plunging birth rates. the creation of the quired services. My personal priority in general is to One of the main pieces of legislation which I think Special Interest fight against the stigma related to memory diseases will have a detrimental effect on people with demen- Group on Carers and and to fight for self determination and other rights tia and their carers is the “on-call” provision in the of people with memory-related disorder. Time at Work Directive. This Directive poses a seri- Caring.” ous threat to respite services for home carers. As the Kathy Sinnot, Kathy Sinnott (Ireland) Directive is presently written, all hours for which a Ireland I feel that the key ac- worker is at their place of employment, must be complishment of this counted as time at work. Take the example of a family Parliament was the cre- carer who cares for a person with dementia in their ation of the Special In- own home and is given weekend respite. Typically a terest Group on Carers family carer provides care 24/7 for that person within and Caring. As a full their own home. In order to have a weekend off, it is time carer for over three necessary for a care worker to come into the home decades, I have experi- and stay over, even though during the night hours enced first hand the dif- they sleep. The person being cared for may not require ficulties facing carers intervention at night but under the present forma- Member of the Bureau of the and the people they care tion of the Working Time Directive, the time spent Independence/Democracy Group Vice-Chairwoman of the Committee for. In June 2007, I sleeping is considered as time spent working which on Petitions and Member of the founded the European means that a second care worker will be required to Committee on the Environment, Parliament Interest work the next morning. Public Health and Food Safety and Group on Carers with The Time at Work Directive is a prime example of the Committee on Employment and Social Affairs, Founder and Co-Chair the aim of ensuring that legislation which ignores the contribution of carers of the EP Interest Group on Carers policy development and fails to take them into account. The provision in takes the issues of carers into account and to check this Directive for “on-call” working time will make policies for their impact on the situation of carers. providing respite to carers far more expensive and The Interest Group on Carers vets legislation for the in many cases impossible. The fact that the needs of good of carers and aims at making MEPs more family carers were not included in this Directive aware of their situation. The Carers Interest Group, once again highlights that informal care is not of which I am organiser and co-chair, cooperates valued to the same extent as formal care.
VI election special A number of existing and current policy issues are Anna Záborská (Slovakia) relevant to the issue of carers and should be focused In the European Par- on in the next term. These include the Lisbon Agenda liament, it is possible to with its emphasise on favourable working conditions, raise awareness of those the Mental Health Strategy, PROGRESS, the Public engaged in taking a po- Health Programme, the Green and White Papers on litical or legislative deci- Demography, the Green Paper on Modernising La- sion. The problems of bour Law and the Green Paper on the Workforce for people with neurode- Health. generative diseases – If re-elected, one of my priorities would be to pro- and particularly with mote research into dementia and promote an appre- Alzheimer’s disease – as ciation of the value of every human person regardless Member of the Bureau of the well as those of their of age or condition. Group of the European People’s carers must not be left It is because of human dignity that, for me, caring is Party (Christian Democrats) and European Democrats out of the picture. Our about a relationship, a very special type of intense re- Chairwoman of the Committee on Carers Interest Group lationship and this would only be improved if we can Women’s Rights and Gender in the European Parlia- lift some of the worry from the shoulders of carers. Equality and Member of the ment is a real medium However, one of the biggest challenges facing carers is Conference of Committee Chairmen and the Committee on for reflection and setting the lack of appreciation of caring. Development up of strategies. It enables When I brought up the issue of carers during a the institutional deci- Committee meeting in the European Parliament last sion makers to get acquainted with the very prob- year, I was told that carers, people caring for the eld- lems of the carers thanks to the contribution of erly, people with dementia, people with disabilities NGOs such as Alzheimer Europe or the European and children, are people on career breaks. To call car- Federation of Unpaid Parents and Carers at Home ing a career break is to show ignorance of what carers (FEFAF), as well as their national associations. do and of the value of what they do. Governments During my first mandate in the European Parlia- “Right from the and Europe need to take carers seriously in the fu- ment, I wrote a report on women’s poverty in Eu- ture. rope and another one on inter-generational solidarity. beginning of the If I am re-elected, a particular goal of mine is to Of course, I called on the policy makers to officially next mandate, we continue the work of the Interest Group on Carers recognise the contribution of the women and the must fight to include and to get recognition for carers and for the essential men who care for a dependant person. It is just a service they perform. matter of equity and social justice. a budgetary Policies at all levels must reflect the carers’ pre- allocation for the Corien Wortmann-Kool (Netherlands) dominant cross-cutting role for the sake of the people financing of We managed to get the who are ill and for the common good of society. This European Parliament’s is why I note with great pleasure that this was ad- Alzheimer declaration on Alzhe- dressed not only within the Women’s Committee associations and imer’s disease, initiated that I preside, but also within the Public Health carers associations.” by Françoise Grossetête, Committee. adopted. Consequently, Do not forget that the European Parliament adopt- Anna Záborská, the European Commis- ed Written Declaration 80/2008 on the need to rec- Slovakia sion has to undertake ognise Alzheimer’s disease as a European public a communication on health priority and that this declaration is now an Alzheimer’s disease. official European Parliament document! I invite all Group of the European People’s That’s very important, the people with Alzheimer’s disease as well as their Party (Christian Democrats) and because Alzheimer’s European Democrats carers to make good use of the work of the European Vice-Chairwoman of the disease is a European Parliament. Committee on International Trade and worldwide problem. The work continues! I am fully aware that various and member of the Committee on With regard to re- political issues will compete with each other. The Women’s Rights and Gender search into causes, Equality work of the Carers Interest Group is vital for policy treatment and medica- makers who work on carers’ issues. It must remain a tion for Alzheimer’s disease, Europe should encour- high priority and survive. age the exchange of good practices. Right from the beginning of the next mandate, we My husband is director of Alzheimer’s Disease In- must fight to include a budgetary allocation for the ternational, which means that I am very sensitive to financing of Alzheimer associations and carers as- this huge problem and the urgent need for Europe to sociations. make more of an effort. Therefore, I will actively sup- Then, I strongly believe we need to continue to port initiatives in this domain, also in my new man- speak about Alzheimer’s disease and the importance date in the European Parliament. of the carers to the policy makers. We can easily
VII Prioritisingelection dementia special
Eworkur on theo opportunitiespean offeredAlz byheimer the political Dushana's A Zlliancedravkova (Bulgaria) agenda. In addition to World Alzheimer’s Day (21 The current European September), I also think of World Day of Social Jus- Parliament adopted a tice (20 February), World Health Day (7 May), number of documents EctemMothers’ Daynibh (10 ea May), alit, International consendiam, Day of the consequate exero dip concerningeriurem Alzheimer’s Family (15 May) and Fathers’ Day (in June), Old disease, the most recent zriurePeople’s Day velenim (1 October), dolor. or still, Ectem International nibh Hu -ea alit, consendiam, consequateof which is the Written exeroman Solidarity dip eriuremDay (20 December). zriure All velenim these dates dolor. 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However, in my opinion, the inclusion of blaoremI am a et Member doluptat of aut the ip European ex er si blandre Parliament feugue for carers in finding solutions is key. Being closest to the Bulgaria magniamSlovakia. Inirit myprat country,vulland ionsenis we also essi face tat problems praesec people affected by Alzheimer’ disease, they are tetumsandrelinked to neurodegenerative velis nim dunt wisl diseases, dui tincin such vulla as central to successful implementation of any strategy consequat.Alzheimer’s Duidisease. bla Weaugue have conum marvellous nonulla people augait, who or solution. we need to support in their endless fight. I thus will core et ulla at alis digna cor senis eu feum quisl eu The next European Parliament will have to tackle continue my involvement in favour of the persons faccum alit aut at, velese molum eumsan velessit, many challenges with the final ratification of the with the disease, their families and their carers. quamet, quipism olumsan vullandipit prat eum Lisbon Treaty by all Member States on top. Some I promise to take forward the priorities of Written may say that there are more pressing issues than delis dio et, sum quam volut laorem in henisit ili- Declaration 80/2008 on the need to recognise fighting Alzheimer’s disease, but the most demo- quislAlzheimer’s dui bla disease commy as a nullaEuropean alit volorpercipublic health tie pri ea- cratic European Institution cannot leave more than feugaitority. We nulpute will thus dit need in uteto promote magna feuguepan-European ea aut 6 million Europeans on their own. For this reason I veliquatresearch oniurem the causes,dolum preventionquipis ad tinand euis treatment ex esse of- believe that the task for the next Parliament will be quatAlzheimer’s auguera disease, essisl ute improve ming earlyeu faccum diagnosis, aliquam, sim- to provide the financial means for implementation consenitplify procedures prat nullan for patients hent nonsecte and carers molestin and improve ullut of the task and policies we have developed over the augiamtheir quality alit of eum life, doloreetumand, finally, dogive odionsed the Alzheimer tem past five years. eugueassociations facilit, regular conullaortio support. con hent wissis ea au- Throughout my whole political career I have strived At the end of the mandate, we will be called upon to gueros autat nos ex ex et iure feugait non utet in to help the people in need and in particular those negotiate the 8th Framework Programme for heniametuer susto dolore ex ent num in venim with Alzheimer’s disease. I have always tried to European research. Neurodegenerative diseases, incing exero dignisi bla feum iure magna augiamc provide lasting and sustainable legislative solutions especially Alzheimer’s disease, will have to be included in order to ease their lives. If I am re-elected in the onullutat endrem velisit aut augue facin ex elit at in the Programme. Regarding carers, we should next European Parliament, my priorities will be first acinmake henim a better iriusto use of od the te European tin utat lore agencies magnisi. to carry securing additional resources for early diagnosis of out a detailed analysis of the real work provided by the disease and, second, assisting non-governmental theOs carers doluptat in order luptat to in better ullutpatum develop tools vel iriusto that will et organisations working in the field in order to increase amrecognise inim velthe exerotrue value consectem of their velengagement. eu faccum venit, the awareness of Alzheimer’s disease.
VIII34 Dementia Issue 3 i n E u r o p e May 2009 T h e A l z h e i m e r E u r o p e m A g a z i n e
Policy Watch
Androulla Vassiliou “It is the responsibility of all of us to ensure that people can age with dignity, in good health and with their rights respected.”
Daniela Filipová The Czech Health Minister talks about the Czech European Presidency
Maria Eleni Koppa MEP Maria Eleni Koppa highlights the issues facing people with dementia and their carers in Greece
28 The Council of European Health 32 European Presidency Watch Ministers calls to make dementia a The Presidency of the European Union European priority is currently held by the Czech Republic. A look at the “Conclusions on public health Alzheimer Europe talks with the Czech strategies to combat neurodegenerative Health Minister, Daniela Filipová. diseases associated with ageing and in particular Alzheimer’s disease” which 34 A view from Greece the Council of European Health Ministers Maria Eleni Koppa, MEP (Greece), talks of the adopted in December 2008 situation for people with dementia and their carers in Greece. 29 Rising to the challenge: The role of the European Commission 35 National Dementia Plan: England European Union Health Commissioner, Alzheimer Europe considers the recently- Androulla Vassiliou, talks with Alzheimer launched English Dementia Strategy and Europe about the work of the European feedback on the Strategy is given by Daphne Commission in the field of Alzheimer’s Wallace, Heather Roberts (both of whom disease. have dementia) and Angela Clayton-Turner (a carer). Policy watch
The Council of European Health Ministers calls to make dementia a European priority
A look at the “Conclusions on public health strategies to combat neurodegenerative diseases associated with ageing and in particular Alzheimer’s disease” which the Council of European Health Ministers adopted in December 2008
At the end of the French Presidency, the Council of call for action to be taken by the Member States, European Health Ministers gave a clear signal that Commission as well as the Social Protection Com- policy-makers at the highest level were heeding the mittee. Both the Member States and the Commis- call that dementia is a major public health issue by sion have been called on to (1) recognise dementia as adopting “Conclusions on public health strategies to a priority for action (2) take account of the potential combat neurodegenerative diseases associated with consequences of the increase of the diseases and (3) ageing and in particular Alzheimer’s disease” at the reflect together on existing quality criteria. Member 2916th Employment, Social Policy, Health and Con- States are asked to establish national strategies, im- sumer Affairs Council meeting. prove the distribution of information, promote coor- dination and collaboration between all parties, eval- The Council identifies their reasons for taking this uate administrative procedures and to improve the step, including (a) a recognition of the challenges skills of professionals to ensure a high quality of care. faced with a doubling ageing population, (b) the fact that increased longevity should be accompanied by a The Commission was asked to adopt an initiative certain quality of life, and that (c) prevalence of neu- which should have four mains themes: research, ex- rodegenerative diseases, in particular Alzheimer’s change of best practices on all aspects of the disease, disease, rises with age. the improvement of the quality of epidemiological information and the exchange of best practices on Citing existing European tools and initiatives the issues of protection and patients’ rights. In addi- which draws attention to the Council were the prin- tion, the Commission is called upon to take initia- ciples of Chapter 1 (on dignity) of the EU Charter of tives which develop methodologies and capabilities Fundamental Rights that patients can grow old with at EU level, to use existing Community programmes dignity, the Commission’s White Paper “Together and activities including the ongoing work of the for Health: a Strategic Approach for the EU 2008- Commission on health care and long-term care and, 2013” in which the primary strategic objective is to lastly, to use the possible connections between ac- promote good health throughout a person’s life cycle tions developed on these diseases and those devel- and the commitment made in 1996 by the European oped to address mental health issues in the ageing Parliament to support European action to combat population. Alzheimer’s disease. The Council also acknowledged the work already carried out to make Alzheimer’s The Council also asks the Social Protection Com- disease a public health priority at EU level, and noted mittee to continue to promote the sharing of experi- the work carried out by associations. ences and the exchange of best practice in specified areas, as well as to continue its activities on quality in The Conclusions are not legally binding, but they long-term care.
28 Dementia Issue 3 i n E u r o p e May 2009 Policy watch T h e A l z h e i m e r E u r o p e m A g a z i n e
Rising to the challenge: The role of the European Commission
European Health Commissioner, Androulla Vassiliou, talks with Alzheimer Europe about the work of the European Commission in the field of Alzheimer’s disease
Alzheimer Europe (AE): Madam Commission- under the French Presidency in 2008 identified er, the Council of Ministers has adopted far- several areas where Europe could add value in reaching conclusions on the importance of Eu- tackling Alzheimer’s disease. Three dimensions ropean action in the field of Alzheimer’s disease for action were identified: The public health - di and Members of the European Parliament have mension, covering the prevention and early inter- overwhelmingly supported Written Declaration vention aspects, including a better understanding 80/2008 which calls for the development of a Eu- of the risk factors of dementia, the social protec- ropean Action Plan on Alzheimer’s disease. How tion dimension, addressing the quality and the does the European Commission intend to re- long-term sustainability of dementia care in spond to these initiatives? health systems, and finally, the research dimen- Androulla Vassiliou, sion, improving and ensuring better coordination European Commissioner for Health Androulla Vassiliou (AV): I welcome these ini- between national and European resources on de- tiatives as they draw attention to the plight of the mentia and avoiding potential duplication of many individuals and their families coping with efforts. Alzheimer’s disease and other dementias. We need to recognise that this issue is linked very AE: The European Commission has of course closely to a wider challenge for Europe: the ageing not waited for the Council of Ministers or the population. The White Paper “Together for European Parliament to become active in the Health: A Strategic Approach for the EU 2008- Alzheimer’s field. Could you highlight some of 2013” that we adopted in 2007, identifies the bet- the key initiatives that the Commission has sup- ter understanding of neurodegenerative diseases ported over the past years? such as Alzheimer’s disease as important in the context of demographic ageing. It is the responsi- AV: The importance of these conditions has long bility of all of us to ensure that people can age been recognised by the European Commission. with dignity, in good health and with their rights Within the programme of Community action in respected. Alzheimer’s disease and dementias are, the field of public health (2003-2008) the Europe- unfortunately, a part of this ageing process for a an Commission financed a project called “Euro- lot of European citizens. pean Collaboration on Dementia (EuroCoDe)”. This project cost Eur 1,423,190 (with Eur We are currently preparing our own initiative 843,000 funded by the Commission through the on Alzheimer’s and other dementias, which takes Health Programme), and was coordinated by into account and builds upon the important work Alzheimer Europe. EuroCoDe involved extensive carried out in the past few years. Of course, the surveys of its members to highlight inequalities principal responsibility for all health issues lies within the European Union with regard to the with the Member States. However, discussions access of people with Alzheimer’s disease to existing
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treatments and support systems. The results were the pharmaceutical industry. It is estimated that published in the ‘Dementia in Europe Yearbooks’. the total public funding in the Member States allocated to dementia research in Europe Additional funding has come from the Frame- amounted to Eur 57 million in 2005. In addition work Programmes for Research where Eur 20 to funding research on Alzheimer’s disease, million was invested in FP5, and increased to several Member States are building infrastruc- Eur 65 million in FP6 for research on Alzheim- tures to better tackle the dementia problem. er’s disease and other dementias. Apart from Efforts in this area funding of re- “It is the have been rein- search projects, I responsibility of all forced in the cur- would also like to of us to ensure that rent FP7 within mention the the ‘Health theme’ Open Method of people can age with in the areas on Coordination in dignity, in good brain research and the social field. health and with their a new activity on This provides a rights respected.” ‘Optimising the framework for delivery of health the EU Member Androulla Vassiliou care to European Androulla Vassiliou centre, with national Health Ministers at the French States to reform citizens’. Eur 29 Presidency Conference their social pro- million has al- tection systems ready been committed to the subject of dementia on the basis of policy exchanges and mutual and Alzheimer’s disease as a result of the first two learning. Following the 2008 National Strategic calls for proposals in the brain research area. In Reports and the 2009 Joint Report on Social Pro- addition, the Framework Programme has allowed tection, a specific peer review will be held in for the coordination of national research activi- France in May 2009 on: “Alzheimer’s ties in this area through various projects. disease and other related diseases: how to cope with crisis situations occurring in the patient’s Strengthening the use of incentives at national home?” (focusing on non-medical treatment). or European level to strengthen research into de- This will be followed by a conference in September mentias and development of medicinal products 2009, under the Swedish Presidency of the Council, is being encouraged. An example of this action is on Healthy and Dignified Ageing, which will in- the Innovative Medicines Initiative that aims to clude a workshop on the coordination of care for support the faster discovery and development of persons suffering from Alzheimer’s disease and better medicines for patients and enhance other dementias. Europe’s competitiveness by ensuring that its biopharmaceutical sector remains a dynamic AE: One of the key achievements of the Euro- high-technology sector. The IMI platform was pean Commission in 2008 has been the adoption launched under the 6th Framework Programme of the Mental Health Pact. Are there any aspects for Research as a gathering of stakeholders, led by of the Pact which would be of particular impor-
30 Dementia Issue 3 i n E u r o p e May 2009 Policy watch T h e A l z h e i m e r E u r o p e m A g a z i n e
tance to people with Alzheimer’s disease or other cognitive abilities steadily decline and there gen- forms of dementia as well as their carers? erally comes a time when the person with demen- tia can no longer manage entirely alone and AV: Psychological aspects play an important where he/she will need help in making decisions role in Alzheimer’s disease and other dementias. of varying importance, such as financial manage- Some studies suggest that depression increases ment or medical decisions. Assistance could be the risk of developing dementia. We know that provided by a guardian or lawful representative, depression is a common experience for people but national laws differ widely as discovered by with Alzheimer’s disease or other dementias, Alzheimer Europe when it carried out its Lawnet with co-morbidity rates of up to 50%. Family projects. carers of those suffering with dementias also “The European Pact show a significantly increased risk of mental dis- I have already illustrated above how we work to for Mental Health orders. The European Pact for Mental Health and ensure that this important subject is addressed in and Well-being … can Well-being established by the EU high level con- a coordinated and a coherent manner at EU level. ference “Together for Mental Health and Well- raise awareness being” of 13 June 2008 takes into account this The European Commission can provide politi- activities and the dimension of the disease and can raise awareness cal leadership in recognising the rights and the exchange of good activities and the exchange of good practices in contribution of older adults. We are exploring practices in addressing Alzheimer challenges. A key event for how to address this concern and possibly to estab- addressing these issues will be the thematic con- lish a European Network for rights of people with addressing Alzheimer ference on mental health in older people under dementia. This network could formulate and feed challenges.” the Pact, which the Commission and the Spanish into recommendations on dignity, autonomy and Androulla Vassiliou Presidency will co-organise during the first half social inclusion. The gradual loss of capacity of 2010. makes it difficult for people with dementia to maintain their place and active participation in AE: Alzheimer’s disease is not only a medical society. Carers may also experience social exclu- question and people with dementia and their sion based on the effects of dementia on their carers often face social isolation due to the stig- loved ones. The disclosure of the diagnosis to peo- ma attached to the disease. Also, there are spe- ple with dementia is of significant importance. cific legal and ethical issues that are different We do not help people if we attempt to protect from those of patients living with other long- them by not telling them about their condition. term conditions. Is there scope for collaboration On the contrary, being told as early as possible is a with other Commission departments to promote crucial step for people with dementia to take an the exchange of information on these issues active part in decisions affecting their lives. between European countries? AE: Madam Commissioner, thank you very AV: The image of Alzheimer’s disease and other much indeed for sharing with Alzheimer Europe dementias in European society is often a negative ways in which the Commission has, and will one, associated with fear and helplessness. We continue to employ initiatives aimed at helping need to focus on the respect of the rights and the people with dementia and their carers enjoy a dignity of people with dementia. Unfortunately, better quality of life.
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European Presidency Watch
The Presidency of the European Union is currently held by the Czech Republic. Alzheimer Europe talks with the Czech Health Minister, Daniela Filipová.
Alzheimer Europe (AE): Minister Filipová, the The Czech Government is aware of those chal- ageing of European populations has been recog- lenges at both EU and national levels. The Czech nised as a priority by a number of EU Presiden- Government in January 2008 adopted a broad cies. The French Presidency organised a key con- strategy called “Quality of Life in Old Age”. Its ference on Alzheimer’s disease and two Council primary goal is to mainstream ageing into health, conclusions were dedicated to the importance of education, housing and other relevant policies so greater European collaboration on Alzheimer’s that they reflect and adapt to the needs of ageing disease. Does the Czech Presidency plan any populations. The programme has set forth priori- specific follow-up initiatives in this field? ties for the period 2008–2012 (1. active ageing, Daniela Filipová 2. age friendly environment and community, Czech Health Minister Daniela Filipová (DF): The Czech Republic is 3. improving health and health care in old age, committed to the shared priority of troika (The 4. supporting family and carers and supporting European Presidencies of France, Czech Republic participation of older persons in society and pro- and Sweden) that is to promote healthy, active tection human rights). The promotion of “ageing- and dignified ageing. Of course, in the context of in-place” and protecting human rights are the demographic ageing and rising numbers of frail overreaching priorities of the programme. seniors, Alzheimer’s disease and other forms of dementia are one of the key challenges for the AE: Are there other Presidency priorities in near future, in terms of ensuring quality treat- the health or social fields, which would be of ment and care, protecting dignity and rights of interest to people with Alzheimer’s disease and people with dementia and their carers and pro- their carers? moting social inclusion. DF: The Czech Presidency inter alia organises Demographic ageing requires a change in the the European conference “Social Services – A health strategy. The rising number of frail, older Tool for Mobilising Workforce and Strengthening people necessitates adapting health services and Social Cohesion”, which will take place in Prague ensuring the availability of geriatric care, long- on 22nd and 23rd April 2009. The conference will term and palliative care. The challenge ahead is to focus on growing employment opportunities in transform the success and progress of our ageing social services in the context of population age- societies into future development and to promote ing, support for informal carers, the role of social healthy and secure lives and to strengthen cohe- services in reconciliation of employment and sion in our families, communities, and societies. care, the balance between professional and family Adopting, implementing and developing policies care, and active social inclusion. The conference that promote inclusive age-friendly society are will contribute to the exchange of best practice in thus strategic long-term priorities. those areas.
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The Czech Republic is prepared to address in ageing society, the role of municipalities in the issue of the creation of a voluntary and provision of integrated care services, geriatric legally non-binding European framework for frailty, prevention of abuse and neglect, ageism the methodology of standards of quality of social etc. The problems faced by people with dementia services, which will significantly contribute to and their carers are, of course, among the issues, the debate on possibili- which will be ad- “Alzheimer’s disease ties of cross-border pro- dressed from different and other forms of vision of social services, perspectives and in dementia are one of and to specifically ad- different contexts dur- dress the question of ing the conference. the key challenges standards of quality of for the near future, in social services within AE: As you know, terms of ensuring public procurement pro- the European Com- quality treatment cedures. mission is in the process of developing and care, protecting AE: The Czech Presi- a European initiative dignity and rights of dency will organise a on Alzheimer’s dis- people with conference on dignity ease. Which areas do dementia and their and the elderly in May you consider to be 2009. Do you intend to most appropriate for carers and promoting raise the specific prob- increased European social inclusion.” lems faced by people collaboration? Daniela Filipová with dementia and their carers at that conference? DF: Undoubtedly, the most efficient way to tackle a common challenge is to streamline our efforts to DF: The Czech Presidency is organising “the prevent and minimise incidence of dementia and/ European Conference on Dignity and Hazard in or its consequences. Supporting research and an the Elderly”, which will take place in Prague on effective research strategy are a key way to address 25th and 26th of May 2009. The conference is of this challenge. Improving the situation and dignity strategic importance for formulating responses to of carers and people with dementia by ensuring challenges and opportunities of our ageing popu- quality staff and availability of specialised health lations at the EU as well as national, regional and and social services is a key task and challenge. local levels. The conference will focus on active and healthy ageing, community and long-term AE: Ms Filipová, thank you for giving care, the needs and preferences of older persons Alzheimer Europe this interview.
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A view from Greece
Maria Eleni Koppa, MEP, and member of the European Alzheimer’s Alliance, talks to Alzheimer Europe about national and European Alzheimer plans as well as the challenges ahead for people with dementia and their carers in Greece Alzheimer Europe (AE): Ms Koppa, what are the dence about the impact of dementia has to be esti- key challenges that people with dementia and mated and both medical and social care has to be their carers face in Greece? established to meet both the patients’ and the carers’ needs. I would very much like my country to Maria Eleni Koppa (MEK): Currently there are follow their example but there is still a long way to go. 150,000 dementia patients in Greece. First of all, there is lack of a national action plan against AE: What do you believe the three policy priori- dementia. There is lack of day-care services and ties should be for Greek policy makers to improve Maria Eleni Koppa, MEP (Greece) total care of long-stay institutions. Home-based the lives of people with dementia and their carers care also has to be developed. Another problem is in your country? that there are no allowances for people with dementia “There is an urgent and carers. There are only 6 day-care centres in the MEK: The three policy priorities should be (1) to need to get country (all run by Alzheimer’s Associations raise awareness and fight stigma, (2) to improve ac- rd Dementia on the under the 3 European Support Framework) and cess to diagnosis and treatment and (3) to improve no rest homes especially made for Alzheimer’s the quality of life of both people with dementia and public and political patients. their carers. agenda in Greece.” AE: Governments across Europe are starting to AE: Finally, a last question on the need of a Euro- pay more attention to the demographic changes in pean response to the growing number of people our societies and the resulting increase in the with dementia. Would you support the develop- number of people with dementia in the future. Are ment of a European Action Plan in this field and, if there similar discussions in your country on a so, what should the priorities for such a European governmental or parliamentary level? collaboration be?
MEK: Neither the Greek government nor the MEK: We would certainly support the development Greek Parliament pay much attention to the grow- of an action plan against dementia on a pan-European ing problem of dementia in Greece. For the time level. Collaboration and exchange of practices be- being, they have other priorities. tween European countries is crucial. There are 21 Alzheimer’s Associations in 21 towns around Greece AE: Do you believe that Greece will follow some of which are very active. Since February 2009, the example of France and create a National the Athens Association of Alzheimer’s Disease and Alzheimer’s Plan? Related Disorders has launched the Greek Alzheimer’s Initiative a signature collection campaign in order MEK: There is an urgent need to get dementia on to make dementia a public health priority and the public and political agenda in Greece. First, evi- highlight the plight patients and carers’ face.
34 Dementia Issue 3 i n E u r o p e May 2009 Policy watch T h e A l z h e i m e r E u r o p e m A g a z i n e
National Dementia Plans: England
Alzheimer Europe considers the vision, aims and implementation of the recently-launched English Dementia Strategy
The English Health Secre- where the quality of care is high and equal wher- tary, Alan Johnson and Care ever they might live.” Services Minister, Phil Hope, launched “Living well with Such aspirations, if realised, would make a huge Dementia: A National De- difference for all those affected by dementia. mentia Strategy” on 3 Febru- However, Alan Johnson reminds us of the chal- “Dementia is not a ary this year. This five-year lenge when he says, “I don’t under-estimate the Alan Johnson natural consequence plan aims to ensure “that sig- scale of the task ahead (…) It will require a great of ageing and it is nificant improvements are deal of work and commitment by those responsi- made to dementia services in ble for commissioning and providing services.” not true that nothing England across three key are- can be done for as: improved awareness, earli- The strategy reflects the thoughts of many, hav- people with the er diagnosis and intervention, ing encompassed a comprehensive consultation condition. In reality, and a higher quality of care”. process during which over 4,000 people were Seventeen key objectives have heard at nearly 50 events and some 600 responses a great deal can be Phil Hope, Care Services Minister been identified and the gov- to the consultation document were considered. done to help people ernment has pledged a further The authors of the strategy also had the benefit of overcome the GBP 150 million to fund implementation of the the recommendations from the External Refer- problems of strategy. Having worked closely alongside the ence Group (chaired by Neil Hunt, Chief Execu- Government during its development, the Alzhe- tive of the Alzheimer’s Society) which were incor- dementia, to prevent imer’s Society believes that the strategy “will porated into the final document. crises and to improve make an incredible difference to the lives of peo- the quality of life for ple with dementia and their carers”. The Aims of the Strategy all involved” First to be tackled is the lack of awareness and The “Vision” understanding about dementia itself and the is- Alan Johnson, The strategy’s authors give their vision for de- sues which surround it, as they create a signifi- Health Secretary mentia services as “a system where all people with cant barrier to diagnosis and the receipt of good- dementia have access to the care and support they quality care. As a person with dementia explains need. It would be a system where the public and in the strategy document, “It’s as though that’s it, professionals alike are well informed; where the you are dribbling and nodding, and that’s Alzhe- fear and stigma associated with dementia have imer’s. That’s the picture of Alzheimer’s. But we been allayed; and where the false beliefs that de- are all sitting here talking perfectly normally. We mentia is a normal part of ageing and nothing can have got Alzheimer’s of some form, but we are not be done have been corrected. It would be a sys- nodding and dribbling”. Misconceptions such as tem where families affected by dementia know this contribute to why people have waited up to where to go for help, what services to expect, and three years before reporting the symptoms of de-
35 PrioritisingPoli dcyementia watch
mentia to their doctor. Further barriers to an ear- made and enable the provision of better support ly diagnosis were identified such as carers believ- as well as the allocation of carers’ breaks. To ing that the symptoms of dementia were “just a facilitate independence for people with dementia, part of ageing”. Even if carers did suspect demen- housing support and telecare initiatives are high- tia, they would often prefer to be in denial. Add to lighted. The improvement of dementia care in these factors that only a third of English GPs care homes is envisaged by a senior member of questioned believed they had the necessary skills staff taking the lead to ensure that there is a clear to diagnose and manage dementia, together with line of responsibility and accountability. Howev- the fact that people over 65 are more worried er, there have been calls for other incentives to be about developing dementia than cancer, heart offered to care home staff such as pay awards or disease or stroke, it will come as little surprise the possibility of being awarded a nationally that half of the public surveyed were found to be- recognised dementia care qualification. Another lieve that there is stigma attached to this disease. issue addressed is the misuse of medication for Removing such stigma is, as Alan Johnson ex- people with dementia in various forms of institu- “We have a unique plains, crucial, because “dementia is not a natural tionalised care, with the strategy listing ways in opportunity to make consequence of ageing and it is not true that noth- which the over-use of medication can be reduced. a true difference for ing can be done for people with the condition. In reality, a great deal can be done to help people Delivering the Strategy those affected by overcome the problems of dementia, to prevent To ensure successful implementation, the dementia, but crises and to improve the quality of life for all in- strategy has placed great emphasis on the need achieving our goals volved”. for training and workforce development as well will not be simple.” as the establishment of local commissioning Experiences highlighted in the English Strategy, and planning mechanisms. Standards of health Joint leads of the such as “I’ve just been told you’ve got Alzheimer’s and care services will be monitored by the Care Strategy, and they walk out; (it) is absolutely bloody dis- Quality Commission (CQC) which will inspect Sube Banerjee and gusting”, will hopefully be avoided if the second and assess for quality across health and social Jenny Owen aim of the strategy, early diagnosis and support, care services, and primary and secondary care. is realised. Various initiatives are proposed to achieve early diagnosis including the creation of Heeding the calls made during the consultation memory services, which will be staffed by special- process to build up the research base in dementia ists who will “sensitively” communicate the diag- for prevention, cause, cure and care, the strategy nosis and provide good quality information and lists action already taken and states that a “clear advice. Early support could be enhanced by a “de- picture of research evidence and needs” should mentia adviser”, peer support networks and a be established. Amongst others, Rebecca Wood, possibility to be actively involved in the creation Chief Executive of the Alzheimer’s Research of local services: All of these are envisaged within Trust, believes that research has not been the Strategy. emphasised enough as “the Strategy has failed to include any new pledge on dementia research, The practical initiatives which can be employed which receives just 2.5% of the medical research throughout the community, hospitals, care homes budget”. Perhaps further attention will be drawn and during end-of-life care are the focus of the to this at the recently announced Parliamentary strategy’s third aim of living well with dementia. debate of the strategy. Recognition of the huge contribution carers make by the implementation of a “New Deal for Carers” Decisions will be taken at a local level regarding would see an assessment of carers’ needs being the funding of individual objectives and the pace
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of implementation will vary according to local track. It will require commitment over time circumstances. Nevertheless, it is clear from and ambition in the face of the true scale of the objectives 13 to 17 that all actors, whether at challenge”. national, regional or local levels are expected to work together to ensure implementation. Indeed, The very fact that England now has a national whilst joint leads of the strategy, Sube Banerjee dementia strategy has been warmly welcomed. and Jenny Owen recognise that “we have a unique Reflecting the thoughts of many, Maurice opportunity to make a true difference for those O’Connell, Chairperson of Alzheimer Europe, affected by dementia” they acknowledge that this said, “I am delighted for the 570,000 people living will not be a simple process as “Success will with dementia in England, as well as their carers, require true joint planning and joint working that this long-awaited strategy will now be imple- between health and social care commissioners mented and that England joins Norway, France and providers, the third and independent sectors and Scotland in giving dementia the priority it and people with dementia and their carers. It will deserves. I hope that other national European require flexible and imaginative leadership at all policy-makers take heed and implement their levels along with constant vigilance and scrutiny own national dementia strategies.” if the delivery of the strategy is to be kept on
The English Dementia Strategy
37 PrioritisingPoli dcyementia watch
Feedback on the English National Dementia Strategy
Daphne Wallace, a retired old-age psychiatrist and who has early vascular dementia talks about the National Dementia Strategy
I am pleased with much that is in the Strategy. The issues is indeed a significant part of the strategy but the more de- which most concerned me about dementia care have been ad- tailed suggestions for support may not be sufficient if general- dressed. In particular I am glad to see the objectives (2, 4 & 6) ised early diagnosis is achieved. which refer to early diagnosis and support from the time of My diagnosis was very early. Psychologically, considerable diagnosis. adjustment is needed and support for the person with demen- I have very early vascular dementia. I am glad to see that the tia and their family is not just beneficial, but essential to avoid various types of dementia are explained. I am concerned that later problems. I had no follow-up for three years until I asked the information and training planned should ensure recogni- to see someone appropriate to monitor my progress. This lack tion of vascular dementia and its varying early presentations of support left me feeling abandoned. I did not need frequent Daphne Wallace which may be ignored in people presenting with other vascu- consultations but just the knowledge that there was someone lar diseases. Support at the point of diagnosis and available there when I needed them. Such support can ensure ‘Living throughout the journey through dementia is essential. The well with dementia’. The ‘dementia care adviser’ is a suggest- need for this support for those with dementia and their carers ed solution to this issue.
“Big changes will be Heather Roberts, who lives with Alzheimer’s disease, shares her thoughts on the National Dementia Strategy for England
necessary so the big I’m Heather Roberts, I’m 54 years old and have Alzheimer’s the opportunity to find out if these drugs work for them. question is will disease. My diagnosis was a tortuous one beset by preconcep- The key element of the strategy for me is improving the tions of how someone with dementia should act. Frankly I knowledge, capability and awareness amongst healthcare sufficient money and didn’t fit the mould being young and still bright. I knew how I professionals in order to get them to listen more effectively to resources be made had changed and what I could no longer do but I wasn’t lis- what their patients are saying about how their lives are being tened to. Like many others I was forced to take anti-depres- affected, to break down any preconceptions and to enable available?” sants because the medics would not consider dementia. How- them to deliver a faster and more effective diagnosis. Heather Roberts, ever, after 2 years of sophisticated memory testing they finally The Dementia Adviser role will help me get the best out of the agreed with what I already knew. system and provide focussed support when I need it. This is who has Alzheimer’s The National Dementia Strategy for England describes a fu- important for someone just after diagnosis when it can feel ture which addresses the issues I face: poor levels of knowl- that your whole world is collapsing. disease edge, convoluted diagnostic pathways and a care system not I have concerns. Is the NHS prepared for the impact of full geared up to the needs of people with dementia and their car- implementation? More effective and earlier diagnosis will in- ers. If fully implemented a simpler and earlier diagnosis will crease numbers and will inevitably shift the balance towards be less stressful. Early intervention and support will be wel- younger people making current services focused primarily comed and if this means access to drugs currently banned in on the needs of older people less relevant. Younger people in England for people in the mild stages then this is great news. I many areas of England are simply not catered for. am lucky as I take Aricept. This has made a massive differ- Big changes will be necessary so the big question is will suffi- ence to my quality of life. I believe it is wrong to deny others cient money and resources be made available?
Angela Clayton-Turner, whose husband, Ted, has dementia, talks about the benefits that the National Dementia Strategy offers. We are now in the 14th year of our dementia journey and we tia, nevertheless much useful information was gained only have had good and bad experiences along the way. An early accidentally. The strategy reflects and addresses these is- diagnosis gave us the opportunity to sort out legal matters sues, with the exception of the needs of people with young and focus on enjoying life for as long as possible but there onset dementia and their families. was no personal support available to help us come to terms Ted is now in the end stages of the disease and lives in a with our situation. Our experience with the general hospital Care Home. For us now, the main benefits of the strategy was poor and had a negative impact. Onset at a young age are those areas relating to the quality of care in Care Homes meant that local services were not age appropriate for Ted and improving end of life care. However who knows wheth- and that I searched in vain for local peer support from a er I or my loved ones will develop this horrible disease in the Angela Clayton-Turner couple in a similar situation. I had no advocate to support future? For the sake of future generations and the public me when I had to deal with difficult and upsetting case con- purse it is imperative that more money and effort is spent on ferences. Luckily through work I had experience of demen- research and I am reassured to see that this has been included.
38 Dementia Issue 3 i n E u r o p e May 2009 dementia in the News T h e A l z h e i m e r E u r o p e m A g a z i n e dementia in the News
Arlette Meyrieux The Legion of Honour bestowed upon Arlette Meyrieux
Stewart Cooper Talks about living with dementia
40 The power of solidarity 45 Living with dementia Jean Georges, Executive Director of Stewart Cooper describes his life with Alzheimer Europe, looks back on the Alzheimer’s disease in his adopted country Alzheimer Europe campaign to make of Luxembourg. dementia a European priority and highlights the importance of collaboration with 46 Dementia in Society national organisations to achieve results. A look at how dementia is portrayed in literature and arts. 42 Members News A roundup of Alzheimer Europe’s members’ recent news. dementia in the News
The power of solidarity
Jean Georges looks back on the Alzheimer Europe campaign to make dementia a European priority and highlights the importance of collaboration with national organisations to achieve results
When the member organisations of Alzheimer I am convinced that this recognition by policy Europe unanimously approved the Paris Declara- makers is not only due to the increasing numbers tion of the political priorities of the European of people with dementia due to the ageing of Alzheimer movement at our Annual meeting in European populations, but it is also a true testa- Paris in 2006, no one could have foreseen the ment to the dedication and political advocacy of incredible progress we achieved in so little time. Alzheimer associations across Europe.
Only last year, the French Presidency of the Our recent campaign to secure the necessary Jean Georges, Executive Director, European Union organised the first Presidency signatures for the European Parliament Written Alzheimer Europe conference dedicated to Alzheimer’s disease Declaration really brought home to me how much and two far reaching recommendations were a united Alzheimer movement can achieve. adopted which call for the establishment of a Receiving the backing of 465 of 785 Members European Alzheimer’s initiative and greater of the European Parliament would have been European collaboration on Alzheimer’s disease impossible if it had not been for the full involve- and other neurodegenerative diseases. ment of our national member organisations and their solidarity with our campaign. This was followed by the adoption of Written Declaration 80/2008 in March this year which Of course, Alzheimer Europe repeatedly con- was signed by close to 60% of all Members of the tacted all MEPs and provided regular updates European Parliament and calls on the Member of the signatories to our members, but it was States of the European Union and the European the personal meetings, the telephone calls and Commission to recognise dementia as a political intense follow-up of our national member organi- priority and to develop a European Action Plan sations which truly made a difference. How else on Alzheimer’s disease. could you explain that 100% of all Cypriot, Greek and Slovenian MEPs endorsed this call for greater Since 2006, we have also seen greater awareness European action on dementia? at a national level and a number of countries have implemented national dementia or Alzheimer’s I was also delighted to see that the contacts strategies (Norway, France, Scotland and Eng- established on a European level provided member land) with other promising initiatives being organisations with new opportunities for interac- launched in other European countries, such as tion with policy makers on a national level and a the development of a dementia research network number of Members of the European Parliament in Germany, the adoption of a resolution by the have supported activities of our members by at- Walloon Parliament or the establishment of a de- tending World Alzheimer’s Day events and other mentia strategy group in Malta. meetings.
40 Dementia Issue 3 i n E u r o p e April 2009 dementia in the News T h e A l z h e i m e r E u r o p e m A g a z i n e
Looking back at the success of our campaign so I am confident that our goal of making dementia far and the incredible level of support and soli- a national and European priority will become a darity by our national member organisations, reality.
Key Milestones Date Country Milestone
6 February 2009 European Union European Parliament adopts Written Declaration 80/2008 calling on European Commission to adopt a European Action Plan on Alzheimer’s disease “Our goal of making 4 February 2009 United Kingdom English Health Secretary announces launch of Dementia Strategy February 2009 Malta Maltese Secretariat for the Elderly and Community Care appoints National dementia a national Dementia Strategy Group to prepare long-term dementia strategy and European priority 22 December 2008 Belgium Walloon Parliament adopts resolution on Alzheimer’s disease will become a reality.” 17 December 2008 European Union Council of Ministers calls for greater European collaboration on Jean Georges Alzheimer’s disease and asks European Commission to develop European Alzheimer’s initiative 12 December 2008 Portugal Portuguese Parliament approves laws to improve social protection of people with Alzheimer’s disease 30-31 October 2008 European Union French Presidency of the European Union organises two-day conference on the fight against Alzheimer’s disease 2 October 2008 United Kingdom Medical Research Council announces £30 million research initiative 26 September 2008 European Union Council of Ministers adopts conclusions on a “common commitment by the Member States to combat neurodegenerative diseases, particularly Alzheimer’s” calling for increased collaboration on research 1 July 2008 Germany New public research network is launched bringing together researchers from 17 German towns 28 April 2008 United Kingdom All Party Parliamentary Group on Dementia (APPG) urges British Government to stop the over-prescribing of anti-psychotic drugs to people with dementia 21 April 2008 United Kingdom Scottish government announces three-year plan to help people with dementia and their carers (investment of £630,000) 14 March 2008 Germany Reform of German long-term care insurance results in some improvements for people with dementia 1 February 2008 France French President launches third Alzheimer’s Plan (five year plan with EUR 1.6 billion) 12 December 2007 United Kingdom Scottish Government’s strategy makes dementia a national clinical priority 30 October 2007 Norway Norway adopts its dementia plan “Making the most of the good days” 22 September 2006 Norway Norwegian government presents “Long term care – Future challenges, Care Plan 2015” to Parliament 29 June 2006 European Union Alzheimer Europe adopts Paris Declaration of the political priorities of the European Alzheimer movement
41 dementia in the News
Members News
A brief roundup of Alzheimer Europe’s members’ recent news
Arlette Meyrieux, President of France Italy (Federazione Alzheimer Italia). Seventeen Alzheimer, receives the Legion of Honour broadcasts were aired from 19-25 January. The for services to Alzheimer’s disease Federation thanked all those who supported this The French Presi- initiative for their collaboration and sensitivity, dent, Nicolas Sarkozy, including RAI Italy, TIM, Vodafone, Wind, 3 Italia bestowed the highest and Telecom Italia as well as Pippo Baudo, Michele decoration in France, Mirabella, Marco Mazzocchi, Federica Sciarelli, the “Chevalier of the Carlo Conti, Ada D’Eusanio, Fabio Fazio, Bruno Legion of Honour” Vespa and Andrea Vianello. upon Arlette Mey- rieux, the President of EasyJet selects the Alzheimer’s Society as France Alzheimer at a its charity partner
Arlette Meyrieux ceremony held at the Following a vote of EasyJet’s 7,000 staff across Elysée Palace, Paris on Europe, the company announced that its charity 18 December 2008. partner for 2009 is the Alzheimer’s Society. The Accepting the award, Society will benefit from donations from in-flight Ms Meyrieux thanked collections over the summer and be granted a the volunteers who percentage of the proceeds from the scratch cards work for the associa- sold on flights. tion for their dedica- tion on a daily basis. 6th Panhellenic Conference on Arlette Meyrieux Alzheimer’s Disease takes place started working with The 6th Panhellenic Conference on Alzheimer’s President Sarkozy congratulates France Alzheimer in disease took place in Thessaloniki, Greece in Arlette Meyrieux 1995 and was elected February. Describing the event as “a successful and President of France Alzheimer Savoie in 1998. Be- fruitful event”, Dr. Paraskevi Sakka explained that coming the first elected member of the Board of Di- the main objective was to investigate ways of rectors of France Alzheimer in 2000, in 2003 she was improving the quality of life of both people with elected as its Vice President and its President in 2005. Alzheimer’s and their carers.
Phone-in raises more than EUR 50,000 for The German Alzheimer Society launches a Federazione Alzheimer Italia new internet service Television appeals broadcast The German Alzheimer Society in January to help raise money offered new link on their website to help people with dementia (http://www.deutsche-alzheimer. and their carers resulted in de/index.php?id=48&news=124) nearly 40,000 text and phone which facilitates the search for calls being made, raising more Heike von support and respite services for than EUR 50,000 for the Alzheimer Federation, Lützau-Hohlbein the relatives of dementia sufferers.
42 Dementia Issue 3 i n E u r o p e April 2009 dementia in the News T h e A l z h e i m e r E u r o p e m A g a z i n e
Users of the website can now search by type of “Committed to Excellence” award given service (advice centres, support groups, helper to Alzheimer Scotland circles, clinics, short-term care, care services, Alzheimer Scotland has been awarded a “Com- residential care, day care and/or doctors) and mitted to Excellence” award from Quality Scotland have the possibility of narrowing the search by for their work including their Staff and Volunteer region. Users will be shown both a rating of Recognition Scheme, improvements made on their services offered as well as details of the services intranet with space allocated for the sharing of ide- themselves. as and for “creating a culture of continuous im- provement”. The award, which is valid for two Heike von Lützau-Hohlbein, Chairperson of the years, is part of the European Foundation of Quali- German Alzheimer Society, explained why they ty Management (EFQM) Levels of Excellence had developed this service “More and more peo- Scheme. ple want to inform themselves, but also obtain personal advice. With the new internet service New Alzheimer cafes open in Belgium account this is what we hope to provide.” In addition to the existing 13 Alzheimer cafes in Belgium, two additional Alzheimer cafes (in towns The Alzheimer Society of Finland launches of la Louvière and in Enghien) were opened by La new website Ligue Alzheimer in April. Alzheimer cafes were set In March, the Alzheimer up to offer a place where people with dementia, and Society of Finland launched their carers can meet up on an information basis its new website (www.muistiliitto.fi) new logo and also benefit from a presentation on a particular (above) and new name “Muistiliitto ry”. aspect of dementia.
It is with great sadness that we heard of the death of two greatly valued colleagues.
István Degrell passed away on 14 February 2009. He was a professor of the Department of Psychiatry at the University of Debrecen. He was a well known researcher in the field of Alzheimer’s disease with an impressive publishing record. From 2006 to 2009, he was actively involved in Alzheimer Europe’s EuroCoDe (European Collaboration on Dementia) project and contributed to the work package on the prevention of dementia.
Naja Skovgaard died on 13 March 2009 after a short illness. She was an active member of Alzheimerforeningen, our Danish member organisation of which she was a Board member and which she represented at international and European meetings. She was elected to the Alzheimer Europe Board at the Annual General Meeting in Maastricht in 2002 and was an active member of the AE Board until 2006. She participated in a number of Alzheimer Europe projects, including the EPOCH (Equality in the provision of care at home) project and the work package on psycho-social interventions of the EuroCoDe project. Anne Arndal, chairperson of Alzheimerforeningen remembers her by saying: “Naja was always very committed to the work for better conditions for persons with dementia. She will be missed in Denmark and Europe.”
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©J.PH. 2008_Janssen Pharmaceutica N.V., Turnhoutseweg 30, B-2340 Beerse, Belgium dementia in the News
Living with dementia
Stewart Cooper, 73, who is British, describes his life with Alzheimer’s disease in his adopted country of Luxembourg
I arrived in Belgium in 1992 and my wife, Siobhan cannot always afford the medication, especially if and two children joined me six months later. Our they are in the early stages. Here the medication is initial five year plan turned into 17 years! I came to subsidised within the health care system and for me work on as a Project Electrical Engineer on an in- the cost of my treatment works out at about EUR 12 dustrial plant. For the first five years, we lived very for six weeks instead of EUR 168. I have found the happily in a converted farmhouse near Arlon, Bel- medical care to be outstanding. Even though the of- gium, and then we bought ficial languages in Luxem- “This article has taken some land and built a house in bourg are Luxembourgish, me six attempts and I Hagen, Luxembourg, where we French and German, all the find this very have spent the last 12 years liv- staff I have come into contact ing. My wife returned to work with have spoken English. I frustrating. Mental and I became a house-husband. have every respect for them. tasks seem to be One doctor I see manages to harder for me now, Things started to go wrong give me plenty of time, so I am rather than physical.” for me in May 2007 and this led able to really talk. to my visiting a doctor and Stewart Cooper having a series of tests, after Some things are difficult to which I was diagnosed with Stewart Cooper and his wife Siobhan establish though, such as what “mild cognitive impairment” and given treatment. support services are available to me and my wife, as On my next visit to the doctor I was told I had well as our rights. It would be nice to have someone Alzheimer’s disease. My wife and I have been dev- who can explain this to us. I would dearly like to astated by this diagnosis. know if there are any other English speaking people here with dementia. I can speak French, but now it I do not wear this malady on my sleeve. We talk seems to take me all my time to speak in English. naturally about it. Friends accept it and make al- There are Alzheimer cafes and I will try to see if lowances for my forgetfulness. I try to lead a useful there is one near me. Siobhan has been fantastically life. I love classical music and I still teach piano. The supportive and I would like it if someone can also worst problem for me is not being able to concen- give her support as I think it must be incredibly trate. I find it difficult to work on the computer. I frustrating, if not a little frightening, when I forget have had one book published and I have been try- things. I know it is for me. ing to finish my new book, “Tome” “A history of Christianity” for the last two years, but it just sticks In May, I will attend the Alzheimer Europe con- at 900 pages. This article has taken me six attempts ference in Belgium and hope to get a greater under- and I find this very frustrating. Mental tasks seem standing of dementia. At the moment, with the to be harder for me now, rather than physical. medical care I receive, my family and friends around me, and the quality of life I have, I feel truly Scotland I understand that in the UK people with dementia blessed to live in Luxembourg.
45 dementia in the News
Dementia in Society
A look at how dementia is reported in literature and arts
British personalities raise awareness and an Admiral Nurse (who is a specialist nurse work- call for action on dementia ing with people with dementia and their carers) The Prince of Wales, British broadcaster, John Su- said: “It is so important for people to get help, as the chet, author Terry Pratchett and actors, Jim Broad- very nature of dementia means that the full burden bent and Kevin Whately, have all spoken out about falls on the shoulders of the carers.” dementia. Ambassador for the Alzheimer’s Society, actor At the Alzheimer’s Research Trust’s 10th annual Kevin Whately, whose mother has Alzheimer’s dis- the “emotional, conference, a statement from His Royal Highness ease, took part in a documentary on dementia. The social and economic the Prince of Wales was read out in which he con- programme highlighted the fact that vast differ- burden we will all gratulated the Trust for their work “to lift the ences exist in the diagnosis, nursing home care and shroud of mystery that has long surrounded de- treatment of dementia. face if (dementia) is mentia” and recognised that the “emotional, social Having spoken out about dementia several times left unchecked will and economic burden we will all face if (dementia) this last year, author Terry Pratchett, who is living be catastrophic” is left unchecked will be catastrophic”. with dementia, has continued to raise awareness of HRH Prince of Wales Also at the Alzheimer’s Research Trust annual the disease by allowing a film crew to film his first conference, actor, Jim Broadbent, (who won an Os- year with the disease which was aired by the BBC car for his portrayal of the husband of Iris Murdoch and entitled “Living with dementia”. who suffered from dementia) spoke about his own experience with dementia, having lost his mother Play about dementia debuts in London’s to the disease. He said that ministers “have an op- West End and donates its profits to the portunity to think about how they fund research Alzheimer’s Society into dementia, which has long been marginalised… The new play, Once we conquered the stigma attached to cancer… “For Once I Was”, This must happen now for dementia… The which opened in government must seize the moment and help to London’s West give hope that one day we will live in a world free of End in April, is the curse of dementia.” about the impact During a BBC breakfast show, Mr Suchet, whose of early onset wife, Bonnie, has Alzheimer’s disease, explained Alzheimer’s dis- that whilst he had been determined to be support- ease on a father ive and understanding after his wife’s diagnosis and daughter’s re- that “every now and then you just explode… It was lationship. Initiat- a culmination of little things – dinner plates going ed by Becca Ste- straight back onto the shelf instead of going into the venson whose dishwasher or being wiped dry whilst they were father, John, was diagnosed with early onset Alzhe- still dirty. It just built up and up and I exploded. I imer’s disease nine years ago, all profits are being felt so guilty afterwards.” Mr Suchet has help from donated to the Alzheimer’s Society.
46 Polish Alzheimer’s Association –W Poland APFADA Portugal –L isbon Societatea Alzheimer R Slovak Alzheimer Society Slovakia –Bratislava C.E.A.F.A. Spain –P Fundación AlzheimerEspaña Spain –Madrid Alzheimerföreningen i Sverige Sweden –L Demensförbundet Sweden – AlzheimerSuisse Association -les-Bains –Yverdon Switzerland Alzheimer Vakfı Turkey –Istanbul Alzheimer Scotland United Kingdom –Edinburgh Alzheimer’s Society United Kingdom –L Alzheimer Angehörige A omania –Bucharest ustria –Vienna amplona und tockholm arsaw ACT NOW Our membersarehelpingpe ondon Remember those who cannot 6.1 million people have dementia in Europe Ligue NationaleAlzheimerLiga Belgium –Brussels Demensforbundet Nasjonalforeningen Norwa in26c and theircarers Alzheimer Europe Members y –Oslo Alzheimer Bulgaria Bulgaria –Sofia Alzheimer Nederland –Bunnik The Netherlands ople withdementia Foundation Compassion AlzheimerBulgaria Bulgaria –V ountries arna Malta Dementia Society Malta Dementia Society Malta alzheimer association luxembourg Association LuxembourgAssociation Alzheimer L Federazione AlzheimerItalia Ital AIMA Ital ofAlzheimer Society Ireland –Dublin Ireland F.A.A.S. –Rey kjavikIceland and Related Disorders Greek of Alzheimer’s Disease Association Greece –Thessaloniki -Hellas e.V.Deutsche AlzheimerGesellschaft Germany –Berlin FranceAssociation Alzheimer –P France Alzheimer-keskusliitto –Helsinki Finland Alzheimerforeningen Denmark –Hellerup Czech AlzheimerSociety Czech Republic–Prague Pancyprian AlzheimerAssociation CYPRUS –LARNACA uxembourg y –Milan y –Milan
aris
Françoise Grossetête John Bowis Katalin Lévai Jan Tadeusz Masiel Antonios Trakatellis (France) (UK) (Hungary) (Poland) (Greece)
WE WHOLE-HEARTEDLY THANK ALL MEPs
who supported Written Declaration nº 80/2008 on the priorities in the fight against Alzheimer’s disease
YOU have helped to ensure that Alzheimer’s disease is given recognition as a European health priority and to develop a European action plan with a view to:
• Promoting pan-European research on the causes, prevention and treatment of Alzheimer’s disease • Improving early diagnosis • Simplifying procedures for patients and carers and improving their quality of life • Promoting the role of Alzheimer’s associations and giving them regular support
The Declaration was officially adopted by the European Parliament on 5 February 2009