NEWSLETTER July – August 2009

from the Czech Republic to Highlights in this Editorial Sweden. We are pleased to issue note that the new Welcome! Presidency has highlighted Although June 2009: MEPs who in its priorities the need to have supported the work this 2 address opportunities for of Alzheimer Europe re- newsletter healthy and dignified ageing elected covers the for older people in the EU. 13July 2009: Number of holiday people with dementia season, you Perhaps the most exciting 2 higher in Europe than will see that news we bring in this previously reported. the months of July and newsletter is the decision by August were full of important 22 July 2009: European the European Commission commission adopts initiatives and activities for to adopt proposals to tackle 5 proposals to tackle people with dementia and Alzheimer’s disease and Alzheimer’s disease their carers. other dementias. This news also gives a clear indication 1 July 2009: European Following the European that our campaign to make Swedish Presidency 5 Parliament elections, we are dementia a European Commences delighted to be able to priority continues to bear welcome back many MEPs fruit. who had supported our cause by joining the In addition, Wales is European Alzheimer’s developing a national Alliance Members. We look dementia action plan and is forward to collaborating with currently holding a them again, as well as with consultation on its plans. new MEPs. During the summer, the The findings from the Alzheimer Europe staff has prevalence workgroup of our also been busy with the new Table of contents European Collaboration on website of our organisation Dementia (EuroCoDe) which we are hoping to Editorial...... 1 project were published launch in the coming month. European Alzheimer’s Alliance ...... 2 during the 2009 We really hope that our new Alzheimer Europe ...... 2 International Conference on website will provide all Alzheimer Europe Networking ...... 3 Alzheimer’s Disease in dementia-related infor- Vienna in July. There was mation in an easier to European developments...... 4 significant media interest in navigate way. Special report - A look at the new these new figures which European Parliament (2009-2014) ...... 6 have already been adopted At the time of sending out Policy Watch...... 8 by the European this newsletter, I am aware that our members will be Members’ News...... 9 Commission for their own calculations of the number busy preparing for World Member’s Forthcoming Events ...... 11 of people with dementia in Alzheimer’s Day at the end Science Watch ...... 12 the European Union. These of September. I would like Dementia in Society ...... 17 findings as well as other to take this opportunity to wish all of you a successful New resources and publications ..... 18 research news from the ICAD conference are campaign and look forward AE Calendar ...... 20 covered in great detail in to reporting your activities in Future Conferences...... 20 this newsletter. our next newsletter. July also saw the transfer of Jean Georges the European Presidency Executive Director

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European Netherlands De Lange Esther (EPP), van Nistelrooij Lambert Alzheimer’s Alliance (EPP), Wortmann-Kool Corien (EPP) June 2009: MEPs who have Portugal supported the work of Alzheimer Coelho Carlos (EPP), Estrela Edite (S&D), Europe reelected Figueiredo Ilda (GUE/NGL), Gomes Ana Maria (S&D) We are delighted to Romania welcome back the re- Winkler Iuliu (EPP) elected MEPs below who supported our work in the last Parliament Slovakia ary session. We look forward to our continued collaboration with them, as well as working with Mikolasik Miroslav (EPP), Zaborska Anna (EPP) the newly-elected MEPs for the 2009-2014 United Kingdom European Parliamentary session. Hall Fiona (ALDE), McAvan Linda (S&D), Belgium: Moraes Claude (S&D), Simpson Brian (S&D), Brepoels Frieda (Greens/EFA), Staes Bart (Greens Stihler Catherine (S&D), Watson Graham –EFA), Sterckx Dirk (ALDE) (ALDE), Willmott Glenis (S&D). Cyprus: Alzheimer Europe Triantaphyllides Kyriacos (GUE-NGL) 13 July 2009: Numbers of people Czech Republic: with dementia in Europe higher than Cabrnoch Milan (ECR), Kohlicek Jaromir previously reported (GUE/NGL), Roithova Zuzana (EPP), Vlasak Oldrich According to research reported at the (ECR) Alzheimer’s Association 2009 International Denmark: Conference on Alzheimer’s Disease (ICAD 2009) in Vienna, the number of people with Jensen Anne E. (ALDE), Schaldemose Christel Alzheimer’s disease and dementia in Europe (S&D) may be higher than previously reported since Finland: both the number of new cases and the total number of people affected continue to rise Pietikäinen Sirpa (EPP) among the very oldest segments of the France population. Audy Jean-Pierre (EPP), Daul Joseph (EPP), De The goal of the EuroCoDe (European Veyrac Christine (EPP), Griesbeck Nathalie (ALDE), Collaboration on Dementia) project, financed Grossetête Françoise (EPP), Henin Jacky by the European Commission and coordinated (GUE/NGL), Lamassoure Alain (EPP), Morin Chartier by Alzheimer Europe, was to determine the Elisabeth (EPP) prevalence of dementia in Europe based on up- Germany to-date research findings. Dr Emma Reynish, a consultant geriatrician from the Victoria Niebler Angelika (EPP), Ulmer Thomas (EPP), Hospital, Kirkcaldy, United Kingdom and her Weisgerber Anja (EPP) EuroCoDe colleagues conducted an extensive Greece literature search using Cochrane review methodologies and compiled a database of all Koppa Maria Eleni (S&D), Kratsa-Tsagaropoulou European epidemiological studies in the field Rodi (EPP) up to the present date. 194 articles were Hungary identified by the review and 26 studies met inclusion criteria to participate with raw data in Surján László (EPP) the collaborative analysis. Ireland According to Dr Emma Reynish, while Aylward Liam (ALDE), Crowley Brian (ALDE), dementia prevalence rates for all men and for McGuiness Mairead (EPP), Mitchell Gay (EPP) women up to age 85 largely confirmed previous findings, age-specific prevalence rates were Italy higher than previously documented in the Panzeri Pier Antonio (S&D), Toia Patrizia (S&D) female “oldest old” age groups, rising to over 50% in those over 95 years. Luxembourg Goebbels Robert (S&D), Lulling Astrid (EPP)

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“Our key findings confirmed that age remains Alzheimer Europe calculated the numbers of people as the single most important risk factor for with dementia in Europe based on the EuroCoDe dementia,” Reynish said. “Nevertheless, due to figures and UN statistics: the lack of data in the oldest old in previous prevalence studies, the prevalence of dementia EuroCoDe EURODEM (2009) (1991) of women over the age of 85 had been Austria 126,296 111,294 underreported.” Belgium 163,511 144,594 Jean Georges, Executive Director of Alzheimer Bulgaria 99,291 90,584 Europe welcomed the findings: “These results Cyprus 8,024 7,285 Czech Republic 123,194 111,141 are important for two reasons. Firstly, they Denmark 78,744 70,108 confirm what we already knew about the Estonia 17,825 15,831 prevalence of dementia in Europe for people up Finland 77,516 68,738 to the age of 85. At the same time, the reported France 974,391 854,219 prevalence in the oldest old shows that we Germany 1,368,330 1,214,085 have previously underreported the total number Greece 159,275 144,745 of people with dementia in Europe. In the Hungary 131,995 118,169 European Union alone, we now estimate the Ireland 37,417 33,719 Italy 1,012,819 896,688 total number of people with dementia to be 7.3 Latvia 29,846 26,583 million, rather than 6.5 million. This poses Lithuania 40,619 36,423 important challenges for all European health Luxembourg 5,814 5,178 care systems, since the oldest old is one of the Malta 4,524 4,122 fastest growing sectors of our European Netherlands 210,666 187,912 societies.” Poland 391,344 354,160 Portugal 153,386 137,403 The prevalence of dementia in Europe: Romania 227,036 207,789 Slovakia 51,622 46,607 The findings of the EuroCoDe working group on Slovenia 25,380 22,822 prevalence found the following age-related Spain 690,992 611,734 prevalence rates for men: Sweden 161,327 141,948 Age range EuroCoDe EURODEM UK 931,134 822,679 30-59 0.16% Total European 60-64 0.2% 1.58% Union 7,299,318 6,486,560 65-69 1.8% 2.17% Iceland 3,319 2,967 70-74 3.2% 4.61% Norway 71,447 62,679 75-79 7.0% 5.04% Switzerland 125,614 110,654 80-84 14.5% 12.12% Turkey 253,367 242,771 85-89 20.9% 18.45% 7,753,065 6,905,631 90-94 29.2% 32.1% The working group on the prevalence of dementia >95 32.4% 31.58% was comprised of: The findings of the EuroCoDe working group on • Reynish Emma, Centre Hospitalier prevalence found the following age-related Universitaire, Toulouse, France/Victoria prevalence rates for women: Hospital, Kirkcaldy, United Kingdom Age range EuroCoDe EURODEM • Bickel Horst, Technische Universität 30-59 0.09% München, Munich, Germany 60-64 0.9% 0.47% • Fratiglioni Laura, Caracciolo Barbara, Von 65-69 1.4% 1.10% Strauss Eva, Karolinska Institutet, 70-74 3.8% 3.86% Stockholm, Sweden 75-79 7.6% 6.67% • Georges Jean, Alzheimer Europe, 80-84 16.4% 13.50% Luxembourg, Luxembourg 85-89 28.5% 22.76% • Kiejna Adrzej, Frydecka Dorota, Wroclaw 90-94 44.4% 32.25% Medical University, Wroclaw, Poland >95 48.8% 36.00% • Prince Martin, Institute of Psychiatry, London, United Kingdom Alzheimer Europe Networking From 2-3 July (Toulouse, France) Dianne participated in European summer school on health law and bioethics held at the University of Toulouse. From 5-7 July (Paris, France), Jean attended the Conference of the International Association of Gerontology and presented the findings of the carers’ survey at a Lundbeck symposium. On 8 July (Paris, France), Dianne attended the INTERDEM meeting where future project possibilities were discussed.

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On 9 July (Luxembourg, Luxembourg), Jean met with Nick Fahy and Antoni Montserrat from the European Commission to present the final results of the “European Collaboration on Dementia – EuroCoDe” project. On 18 August (Brussels, Belgium), Annette and Jean met with Andrew Ketteringham, Director of External Affairs of the Alzheimer’s Society for an exchange on possible areas of collaboration in European affairs. On 20 August (London, United Kingdom), Jean met with Ruth Bosworth, Associate Director, Alliance Development of Pfizer for an exchange on the initiatives of the two organisations in the dementia field.

1. Patients’ and healthcare European professionals’ expectations to be very similar developments 2. that it is important to distinguish June 2009: European Commission benefit-risk at both an individual and population level calls for proposals for pilot projects 3. a necessity to communicate high on preventing elderly abuse information on medicines The European Commission’s call for proposals 4. that the “full picture” for all individual (VP/2009/014) will offer grant funding to two situations is not always available applicants which may involve not-for-profit 5. the information on medicines should organisations including public authorities, a. always communicate benefit universities and research centres and civil and risk together society/stakeholder organisations. b. give clear information to help choose the most appropriate One grant will be awarded for each of the treatment following two types of project: c. give a clear description of (1) Monitoring elder abuse across the benefits and risk, both European Union through public health and qualitative and quantitative long-term care systems. d. describe those factors which may influence a benefit or a (2) Mapping existing policy approaches and risk in an individual policy frameworks in the European Union, to 6. that we do not always have the full identify good practices and present a reference picture for all individual situations and framework comprising measures and new technologies may help to give an instruments needed for an effective prevention improved prediction on benefit-risk for of elder abuse. individuals The deadline for the submission of applications 7. A need to facilitate access to is 27 September 2009. information The report lists the following proposals: We provide full references to 1. Further explore how to optimise articles on our website content and access to information on www.alzheimer-europe.org benefits and risk in summary of product characteristics, package leaflet and public assessment report 23 June 2009: European Medicines 2. Foster dissemination of information Agency publishes report on the from regulators information on the benefit and risk 3. Prepare recommendations on the of medicines quantitative descriptions of benefits Following a survey to find out ways in which the and risks European Medicines Agency (EMEA) could 4. Prepare recommendations on risk improve the information it provides on the communication in areas of uncertainty benefits and risks of medicines, a report 5. Further explore how best to entitled “Information on benefit-risk of communicate on safety issues and medicines: patients’, consumers’ and 6. Continue interaction between the healthcare professionals’ expectations” has three parties been published by the EMEA. 1 July 2009: Swedish Presidency of The survey included contributions from eleven the EU commences patients’ and consumers’ organisations, twelve After the Czech Republic, Sweden is now healthcare professionals’ organisations in the holding the Presidency of the EU. EU and representatives of the EMEA. The survey showed:

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The Swedish Presidency’s vision is a strong and effective Europe where We provide full references to focus is on the common articles on our website responsibility to meet the www.alzheimer-europe.org challenges of today and tomorrow, including preparedness to manage 22 July 2009: European Commission crises. The Swedish priorities adopts proposals to tackle are based on Presidency trio cooperation with Alzheimer’s disease, dementias and France and the Czech Republic, as well as the other neurodegenerative conditions 18-month programme approved in June 2008. Two initiatives (i) a Communication from the Commission (COM(2009) 380/4) to the The Presidency major priorities will be to European Parliament and the Council on address the economy challenges, employment European initiative on Alzheimer’s disease and and climate. At the same time, the EU will other dementias, and (ii) a proposal for a strengthen its competitiveness, create new jobs Council Recommendation on measures to and contribute to a better environment. The combat neurodegenerative diseases, in Presidency will develop cooperation between particular Alzheimer’s, through joint different policy areas so that positive economic programming of research activities, have been growth can be combined with reduced burden adopted by the European Commission. on the climate and environment. The Commission proposes four main areas of action: Among other things, the Presidency will aim to increase the opportunities for healthy and • Acting early to diagnose dementia and dignified ageing for older people in the EU. The reduce the risk of dementia in the first focus will be placed on the older person and place; better cooperation between those working with health and social issues. The Presidency wants • Improving research coordination to find coordination and cooperation solutions between EU countries; and highlight good practices in different EU • Sharing of best practices and Member States. • Providing a forum to reflect on rights, Other priorities will include the Stockholm autonomy and dignity of patients. Programme that will aim to safeguard the The EU Health Commissioner, Androulla security and rights of individuals (free Vassiliou, said “Losing mental movement of people, combat crime, asylum capacity to dementia is not just and migration). a normal part of getting older. As the European population The Presidency will set up a EU Strategy for ages, we must work together to the Baltic Sea to ensure a cleaner marine better understand and prevent environment and a more competitive region. these conditions. We must show our solidarity to people with dementia by sharing best The Presidency will continue to work to practice in caring form them and respecting strengthen the EU as a global actor with a clear their rights and dignity.” agenda for peace, development, democracy and human rights. The Recommendation on Joint programming The Presidency work will be affected by a new of research invites European Parliament, a new Commission and Member States to pool the ratification of the Lisbon Treaty. The their resources and Presidency intends to act so that the Treaty is better coordinate their launched in a positive spirit. research efforts in the field of neurodegenerative diseases, in particular On the agenda : Alzheimer’s disease. EU Science and Healthy and Dignified Ageing Conference, Research Commissioner Janez Potočnik said “ Solna/Stockholm, 15–16 September 2009. We will see a major step ahead if Member States now start coordinating their national programmes around a common agenda… This is an opportunity for European science and a response to a challenge of our modern society.”

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Jean Georges, Executive Director of Alzheimer Europe, welcomed the adoption of these We provide full references to initiatives stating that “This is exactly the kind of articles on our website result we had hoped for. It indicates that our www.alzheimer-europe.org campaign to make dementia a European priority is bearing fruit and will lead to concrete results in the years to come.” Special report - A look at the new European Parliament (2009-2014) Between 4 and 7 June 2009, 375 million EU citizens were invited to elect their Members of the European Parliament (MEP). This time, only 736 MEPs were elected. The MEPs have now elected their President, Vice-Presidents and Quaestors. The 20 Committees have also decided on their Chairs and Vice-Chairs. The European Parliament resumed work on 24 August, following the summer break. The political groups The EPP/ED (European People’s Party/European Democrats) remains the major group in the EP, followed by the Progressive Alliance of Socialists and Democrats (former Party of the European Socialists). The ALDE (Liberal) group remains the third group while the Green Group has gained a position, moving from the 5th place to the 4th place. A new group has emerged, the European Conservatives and Reformists Group. Repartition of seats in the EP

EPP : Group of the European People's Party (Christian Democrats)

S&D : Group of the Progressive Alliance of Socialists and Democrats in the European Parliament

ALDE : Group of the Alliance of Liberals and Democrats for Europe

GREENS/ EFA : Group of the Greens/European Free Alliance

ECR : European Conservatives and Reformists Group

GUE/ NGL : Confederal Group of the European United Left - Nordic Green Left

EFD : Europe of Freedom and Democracy Group

NA : Non-attached

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Although the EPP is the largest group, it will have to secure the support of other political groups to reach qualified majority. Equally, it will be difficult for the Socialist Group to rally other groups to reach qualified majority. Political group leaders

Joseph Daul European People’s Party - EPP France Progressive Alliance of Socialists and Democrats - Martin Schulz Germany S&D Alliance of Liberals and Democrats for Europe - Guy Verhofstadt Belgium ALDE Rebecca Harms & Daniel Greens/ European Free Alliance – Greens/EFA Germany Cohn-Bendit European Conservatives and Reformists Group - Michał Kamiński Poland ECR Confederal Group of the European United Left - Lothar Bisky Germany Nordic Green Left – GUE/NLG Nigel Farage & Enrico Europe of Freedom and Democracy Group - EFD UK & Italy Speroni

EP President and Vice-Presidents Jerzy Buzek (EPP, Poland) was elected President of the EP at the sitting on 14 July. He will preside over the EP for two and a half years, when an MEP from the S&D group takes over for the rest of the mandate. The Vice-Presidents to be elected are : Giovanni Pittella (S&D, Italy), Rodi Kratsa-Tsagaropoulou (EPP, Greece), Stavros Lambridinis (S&R, Greece), Miguel Angel Martinez Martinez (S&D, Spain), Alejo Vidal- Quadras (EPP, Spain), Dagmar Roth-Behrendt (S&D, Germany), Libor Roucek (S&D, Czech Republic), Isabelle Durant (EFA/Greens, Belgium), Roberta Angelini (EPP, Italy), Dianna Wallis (ALDE, UK), Pal Schmitt (EPP, Hungary), Edward Millan-Scott (ECR, UK), Rainer Wieland (EPP, Germany) and Silvana Koch-Mehrin (ALDE, Germany). Parliamentary Committees of interest to Alzheimer Europe

Committee Chair Vice-Chairs Corinne Lepage (ALDE, France), Karl Schlyter (EFA/Greens, Sweden), Boguslaw Environment and Health Jo Leinen (S&D, UK) Sonik (EPP, Poland), Dan Jorgensen (S&D, Denmark) Liz Lynne (ALDE, UK), Ilda Figueiredo Employment & Social Pervenche Beres (S&D, (GUE/NLG, Portugal), Elisabeth Schroedter Affairs France) (EFA/Greens, Germany), Thomas Mann (EPP, Germany) Patrizia Toia (S&D, Italy), Jens Rohde Herbert Reul (EPP, (ALDE, Denmark), Anni Podimata (S&D, Industry and Reasearch Germany) Greece), vžen Tosenovsky (ECR, Czech Republic) Eva-Britt Svensson Livia Jokora (EPP, Hungary), Edite Estrella Women’s Committee (GUE/NLG, Sweden) (S&D, Portugal), Barbara Matera (EPP, Italy) Jutta Haug (S&D, Germany), Alexander Alain Lamassoure (EPP- Budget Alvaro (ALDE, Germany), Jean-Luc Dehaene France) (EPP, Belgium), Ivaylo Kalfin (S&D, Bulgaria) Luigi Berlinguer (S&D, Italy), Evelyne Regner Klaus-Heiner Lehne Legal Affairs (S&D, Austria), Sebastian Bodu (EPP, (EPP, Germany) Romania)

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3. Comprehensive, whereby everyone Policy Watch over retirement age would be required to pay into an insurance scheme and 15 June 2009: Consultation period all care would be free once this open for the National Dementia requirement is met. Action Plan for Wales The consultation period is open until 13 The National Dementia Action Plan for Wales is November 2009. now open for consultation until 11 September 2009. The Plan has been developed by a group 21 July 2009: Over 30 scientists of experts, led by Ian Thomas, the Director of back call for a three-fold increase in the Alzheimer’s Society in Wales. It centres funding for research in the UK, around four levels of action (Strengthening claiming that the “key weakness is individuals, strengthening communities, lack of funding, not lack of talent” improving infrastructure and access to services for all, and, lastly, making structural changes to An initiative from the Government’s National economic, cultural and environmental Dementia Strategy, a government-hosted conditions) and has 21 objectives, all of which summit was held at the Royal Society on 21 aim at improving the lives for people living July which examined “research into cause, cure withdementia. and care, highlighting gaps in knowledge and new opportunities for the future”. 9 July 2009: “Dementia Advisors” start work in England Over 30 scientists from the UK took the opportunity to sign an open letter in the hope Following the launch of the English National that they would end “years of underfunding” for Dementia Strategy in February, the role of research into dementia. It read: Dementia Advisor has been created. These Advisors will “act as a guide to help people with "Today (21 July) the government will hold a dementia and their families navigate the care ministerial dementia research summit at the and support system throughout their illness. Royal Society. After years of under-funding, it They will provide easy access to care, support is encouraging that dementia research is and advice.” Initially 22 locations have been receiving serious attention. selected to have a dementia adviser but Phil “Within a generation, 1.4 million people in the Hope, the Care Services Minister, said “I want UK will live with dementia, costing our economy to see dementia advisors start taking up post £50 billion per year. all around the country. They will be crucial in making sure people with dementia and their "Yet for every pound spent on dementia care, a families get the help and support they need.” fraction of a penny is spent on research into defeating the condition. 14 July 2009: The UK Government launches “big care debate” "Our key weakness is lack of funding, not lack of talent. The UK Government has published for consultation a Green Paper entitled “Shaping "The Government must use this summit to the Future of Care Together”. The Paper initiate a national dementia research strategy. outlines proposals for changing the current Most importantly, it must commit to tripling its system of social care in England and has a annual support for dementia research to £96 strong emphasis on older people and people million within five years. with dementia. In order to create a system that "If the government squanders this opportunity, is “fair, simple, delivers personalised care and we will all pay the price." is affordable to everyone, the Government proposes the creation of a National Care 29 July 2009: US Proposal to create an Office Service with a universal minimum entitled to of the National Alzheimer’s Project in the White care as well as a national assessment of care House needs programme. In order to “meet the needs of the growing Three funding models are mooted and open to number of Alzheimer’s patients”, two U.S. consultation: senators (Mel Martinez and Evan Bayh) introduced a proposal to create an Office of the 1. Partnership, whereby the state would National Alzheimer’s Project in the White pay up to a third of the care costs of House. The aim of this would be to coordinate any individual, ensuring that everyone “all research, clinical care and service toward receives some free support the prevention, care and cure of Alzheimer’s. 2. Insurance, whereby the state would This office will produce a national strategic plan pay for a proportion of the care costs to help assure that the millions of Americans of any individual, and

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who now have Alzheimer’s and the millions of Offices and the Alzheimer National Training potentially at-risk Americans will have a Helpline. coordinated effort to target the 6th leading cause of death in the United States.” Opened on a phased basis since October 2008, the centre currently provides day care service to 24 clients Monday to Friday and We provide full references to overnight respite to six clients, four nights per articles on our website week. At full capacity, The Orchard Centre will operate 24 hours a day, seven days a week www.alzheimer-europe.org and will be able to accommodate up to 6,800 day care places and 3,600 respite stays per year while at the same time providing carers Members’ News and families the opportunity to have a much 28 June 2009: Chairperson needed break. of the German Alzheimer The Orchard Centre provides a specifically Association participates in televised designed and appropriate care environment for debate on Alzheimer’s disease those with Alzheimer’s disease or a related Heike von Lützau-Hohlbein, Chairperson of the dementia. “The design of German Alzheimer the building allows clients Association (Deutsche the freedom to walk Alzheimer Gesellschaft around – it comprises an e.V.) and Treasurer of airy setting and a specially designed enclosed Alzheimer Europe, took garden,” said Maurice O’Connell, Chief part in a one-hour Executive of the ASI. “There is a very soothing televised discussion and calm atmosphere for clients and one in entitled “Campaign which family members can have every against forgetfulness – Alzheimer’s Disease” confidence that the best possible care is being (Kampf gegen das Vergessen – Volkskrankheit provided to their loved one,” he added. Alzheimer). Some 200 guests were invited, consisting of people with an interest in The Orchard Centre is a €5.5 million project dementia such as researchers, pharmaceutical which was funded by a €2.2 million grant from industry representatives, politicians and the Dormant Accounts Fund with contributions advocates of people with dementia and their of a further €2 million from the Royal City of carers. In addition to Ms von Lützau-Hohlbein, Dublin Hospital Trust and the Health Service the panel included Prof. Christian Haas, Executive (HSE). The Alzheimer Society of researcher, Dr Karl-Theodor Schröder, State Ireland has raised more than €1.1 million in Secretary of the Ministry of Health and Dr charitable donations. Martin Zügel, Chief Executive of Merz Pharmaceuticals. The Orchard Centre has three main functions: to provide a state-of-the-art Day Care and The debate was moderated by Nina Ruge and Respite Care facility, to aired by the channel PHOENIX as part of its provide the Alzheimer series “Scientific Forum Petersberg” National Helpline to (Wissenschafts FORUM Petersberg). provide information and support to people July 2009: The concerned about or living Alzheimer Society of with dementia and to provide national Ireland opens a new Respite Centre administrative office space for the staff of the The Alzheimer Society of Ireland (ASI) has Alzheimer Society of Ireland. opened its new short term 4 July 2009: The first stone respite centre in its new of Alzheimer Portugal’s flagship facility - The nursing home laid Orchard Centre - in Temple Road, Blackrock, Co. Alzheimer Portugal is very pleased to Dublin. Situated within a announce that the first stone of walled orchard and garden, the integrated the “Alapraia Project”, a dementia-specific Orchard Centre is built on nursing home aimed land kindly donated to ASI by The Daughters of specifically at people with Charity and comprises an 11 bed National dementia, was laid on July 4th. Respite Centre, a 24 place Day Care Centre for South Dublin, the Alzheimer Society’s National With this new Project, Alzheimer Portugal wants to contribute to

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improve the quality of life of people with 21 July 2009:New director Alzheimer´s disease and other dementias. appointed at the The unit, which has the financial support of the Association Luxembourg Municipal County of Cascais will have a Day Alzheimer Care Centre and a Residential Home Service, Romain Schmit has begun work in his role as responding to 77 people in total. Director of the Association Luxembourg The ceremony was attended by, inter alia, The Alzheimer (ALA). Mr Schmit has studied President of the Municipality of Cascais, Dr. Economics at the University of António d'Orey Capucho, and Members from Toulouse, France. Prior to his the Board of Alzheimer Portugal. appointment, he held senior positions within the financial 6 July 2009: sector, latterly as a Member of Alzheimer’s the Board of Ephidos Holdings Society reveals S.A. “shocking lack of dementia In Luxembourg Mr. Schmit is an Official IFBL awareness in UK” (Institut de Formation Bancaire Luxembourg) During the Dementia Awareness Week (5-11 Senior Expert, Member of IFBL Private Banking July in England and Wales and 14-20 June in Quality Circle and a Member of the Jury of Northern Ireland) the Alzheimer’s Society Certified Private Bankers. released results from a survey of over 2,000 August 2009: Norwegian people which revealed common Alzheimer Association misconceptions about dementia, such as: campaigns for better • 72% of those surveyed believing dementia care family history would put people at In the run up to the Norwegian Parliamentary greater risk despite that this is true in elections (due to take place on 14 September), relatively few cases the Norwegian Alzheimer Association • Only 52% realising that there is no (Nasjonalforeningen Demesforbundet) have cure for dementia raised awareness of what it is like to live with dementia by running a postcard campaign, • 45% thinking that a history of mental targeted at parliamentary candidates. Prior to illness increased risk even though the election, local Alzheimer’s member there is no evidence to support this associations will send these postcards to the • 32% mistakenly agreeing that top candidates in their region and the hope is dementia was a “natural part of that the candidates, by having a greater ageing” and understanding, will vote for better quality dementia care during their term in office. • 26% believing that there was no way Focusing on the need for adapted day care to reduce the risk. programmes and nursing homes for people Sarah Day, Head of Public Health at the with dementia (which are financed by the Alzheimer’s Society said “Clearly there is still a authorities), the Norwegian Alzheimer shocking lack of understanding when it comes Association hopes to highlight that currently the to dementia. The truth is dementia is not a needs of people with dementia and their carers natural part of ageing; it is caused by diseases are not being met. This is due to the fact that of the brain and robs people of their lives.” more than 90 % of the people with dementia who are living at home do not have access The Alzheimer’s Society top tips for reducing to an adequate day care programme, and that risk are: only 20 % of the beds in nursing homes are • Stay active adapted for people with dementia. • Eat healthily The Norwegian Alzheimer’s Association believes that better legislation and ear marked • Don’t smoke public financing are needed in order to provide people with dementia with the same quality • Keep a health weight care independent where in the country they • Get regular blood pressure and live. cholesterol checks.

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22 August 2009: Chief CAREER. The European Parliament for the Executive of the adoption of Written Declaration about Alzheimer’s Society calls for a debate Alzheimer Disease. on funding for the care of people 19 September 2009: Luxembourg with dementia Alzheimer’s Association to In an open letter to the editor of the Telegraph hold memory walk for newspaper, Neil Hunt, Chief Executive of the World Alzheimer’s Day Alzheimer’s Society, UK, said: Association Luxembourg Alzheimer “SIR – Your leading article (August 20) rightly (ALA) will celebrate World highlights the cruelty of the care system for Alzheimer’s Day by holding a people with dementia. memory walk for “people who live in oblivion” (pensons à ceux qui vivent dans l’oubli) in Esch At present, 46,000 people receive funding for Alzette, Luxembourg. NHS continuing care because their needs are judged to be “health needs” rather than “care 29-30 October 2009: needs”; yet we know there are over 200,000 Alzheimer Portugal to host its people with late-stage dementia. annual conference Dementia is caused by diseases of the brain such as Alzheimer's disease. It should never Alzheimer Portugal will organise a conference be classified as a “social” condition, as in the entitled “Alzheimer Disease and other Forms of case of Judith Roe. Individuals have significant Dementia: Which politics?” at the Fundação health needs that go beyond social care. Calouste Gulbenkian You refer to a “reckless unwillingness” on the According to the latest studies released, there part of the Government to confront the issue. are in Portugal about 90,000 people with However, the Alzheimer's Society welcomes Alzheimer's disease. In Europe, they are now the Green Paper on social care. We do need a over 7.3 million. These figures are predicted to debate on who pays for care for those with double by 2040. dementia, focused on deciding a fair, Several countries have already designed, and sustainable model with the needs of people are currently implementing, a national with dementia at its heart.” Alzheimer's plan. The European Commission and the Parliament have both acknowledged Member’s Alzheimer's disease as a public health priority, thus contributing to the improvement of the Forthcoming Events quality of life for those with dementia and those surrounding them. 16 September 2009: Spanish Alzheimer What about in Portugal? Which services are association (CEAFA) to give needed and how to provide them? Which awards for dementia work models to follow? Which support? The Spanish Alzheimer association, La These are some of the questions we seek to Confederación Española de Familiares de answer through active participation, as we Enfermos de Alzheimer y strive together to identify the available otras Demencias (CEAFA), resources and the needs which must be will organize their third annual fulfilled. award ceremony which is due The aim of this Conference is to make political to take place on 16 decision makers, and the public in general, September. These awards aware of these issues, and make Alzheimer's give recognition to different disease a National Public Health priority. work in the field of dementia. The categories are: The Conference will address the need for a comprehensive "National Dementia Plan", INVESTIGATION/RESEARCH. This year, the discussing some existing National Dementia Award is for the researcher Mr. Manuel Sarasa, Plans already in the European Community. whose work has been devoted for many years Participants including specialists, journalists to find bio-markers for early diagnosis. and members of political parties will help INFORMATION. “Entre Mayores Hablamos de ensure we have a more aware, responsible, ti” is a newspaper which offers complete and cohesive society which seeks to address information about health. Alzheimer’s disease the needs of people with dementia and their has been one of the main focuses of this carers. publication.

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The research was led by Gary Arendash, PhD Science Watch from the Florida Alzheimer’s Disease Research Center and published in the Journal of 2 July 2009: Johnson & Johnson and Alzheimer’s Disease. The researchers plan to Elan Corporation plc announces commence human trials to establish whether agreement for Alzheimer’s caffeine can benefit people with mild cognitive Immunotherapy Programme and impairment or early Alzheimer’s disease. Equity Investment 8 July 2009: Study suggests Johnson & Johnson “will acquire substantially relationship between linguistic skills all of the assets and rights of Elan related to its in early life and later cognitive Alzheimer’s Immunotherapy Programme (AIP) impairment in addition, Johnson & Johnson will invest $1 billion in Elan in exchange for newly issued A study suggests that superior language ability American Depositary Receipts (ADRs) which in early life may be linked to will represent 18.4% of Elan’s outstanding later life cognitive ability. ordinary shares.” Researchers, who studied the brains of 38 nuns after 3 July 2009: Study examines the death carried out an relationship between mid-life status analysis of 14 of the nuns’ and cognitive function in later life old essays. These had been written during the Findings in a study published in the British nuns’ late teenage years or early twenties. The Medical Journal (BMJ) suggests that people findings suggest that those nuns who in later living without a partner during middle age had a life showed signs of memory impairment had much higher risk of developing cognitive displayed lower language abilities in their impairment in late life compared to those living earlier essays than those nuns who did not with a partner. The study also concluded that have memory impairment in later life. people who are widowed at middle age are The study was led by Dr Juan Troncoso of the three times more likely to develop dementia. John Hopkins University, USA and published in Researchers led by Miia Kivipelto of the Neurology. Karolinska Institute, Stockholm, Sweden, 9 July 2009: Study examines interviewed some 2,000 people from Eastern cognitive functioning in Alzheimer’s Finland, dividing them according to their status disease and Vascular Dementia (married/cohabitant, single, divorced or widowed). Participants were interviewed at By analysing 81 studies, researchers were able around 50 years of age and again around 21 to compare the cognitive abilities of people years later. The researchers also examined the diagnosed with Alzheimer’s disease and with relationship between the apolipoprotein E e4 vascular dementia. They found that only two gene (a known risk factor for Alzheimer’s tests administered were able to reliably disease) and living alone. They found that the distinguish between Alzheimer’s disease and highest risk for developing Alzheimer’s disease vascular dementia: The Emotional Recognition was for those people who carried the variant Task (the ability to identify facial expressions in gene and who were widowed during middle photographs and match emotional expressions age. to situations, at which people with Alzheimer’s disease were better) and Delayed Story Recall We provide full references to (at which people with vascular dementia were articles on our website better). Tests such as Digit Span (repeating a set of numbers forward and backward), verbal www.alzheimer-europe.org fluency (generating words by first letter or category, such as animals) and drawing tasks 5 July 2009: Study on mice examines were unable to differentiate between the two relationship between caffeine and types of dementia. Alzheimer’s disease In order that a correct diagnosis be made and hence appropriate treatment given, the A study found that cognitively impaired researchers concluded that doctors should transgenic mice who were base their diagnoses on many different types of given caffeine showed information, including medical history and brain “superior working memory” imaging. and reduced Aß deposits in the brain compared to the The research was conducted by Jane Mathias continuing impairment of PhD and Jennifer Burke M Psych from the control transgenic mice. University of Adelaide, Australia.

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12 July 2009: Study examines the memory function of the brain.” Phase II trials relationship between DHA and are ongoing. cognitive decline in people with 13 July 2009: Study finds a lack of Alzheimer’s disease awareness regarding risk factors for A study found that there may be some benefit Alzheimer’s disease for some people with Alzheimer’s disease in An anonymous online American taking DHA (docosahexaenoic acid), an omega survey of nearly 700 adults 3 fatty acid. Participants were given either a 2g revealed more than half of the dose of DHA or a placebo over an 18 month participants were unaware of the period. Initial findings showed that despite some of the risk factors (obesity, blood levels of DHA and brain DHA levels high blood pressure and high increasing the treatment did not slow down he stress) associated with Alzheimer’s rate of change on tests of mental function disease, although most understood that (ADAS-cog), global dementia severity status Alzheimer’s disease is not a normal part of (CDR-SOB), activities of daily living (ADL) or ageing. behavioural symptoms (NPI) in the population as a whole. The survey was carried out by Colleen E Jackson, MS from the University of Connecticut However, during data analysis the results and colleagues. indicated that for those people with Alzheimer’s disease, who do not carry the ApoE-e4 gene, 13 July 2009: Phase II study DHA had a beneficial effect in that the cognitive completed for potential diagnostic tests revealed a slower rate of cognitive tool for Alzheimer’s disease decline, whereas for people who carry the ApoE-e4 gene no benefit was apparent. Phase II findings suggest that “florbetaben” (a positron emission tomography (PET) tracer) The study, led by Joseph Quinn, MD from the may be a useful tool for the diagnosis of Oregon Health and Sciences University, was Alzheimer’s disease. In the study positive conducted on 402 people with mild to moderate florbetaben scans (which indicate the presence Alzheimer’s disease. of beta-amyloid plaques) were found in a large 12 July 2009: Diabetes drug fails as proportion of those participants who had a clinical diagnosis of Alzheimer’s disease, potential Alzheimer’s treatment whereas those people without a clinical A six-month study on the potential benefit of diagnosis of Alzheimer’s had a negative result administering the diabetes drug, rosiglitazone, in the florbetaben scan. for the treatment of Alzheimer’s disease has failed to yield positive results. Researchers The study was presented by representatives of observed that in over 500 people with mild to Bayer Schering Pharma AG, Germany, at the moderate Alzheimer’s disease, who took International Conference on Alzheimer’s rosiglitazone, cognitive function, behaviour and Disease (ICAD) held in Vienna, Austria and daily activities were not improved. Phase III trials are planned for the end of 2009. The research was presented by Michael Gold, 13 July 2009: Study examines Glaxo’s vice-president of neurosciences at the relationship between post-traumatic International Conference on Alzheimer’s stress disorder and dementia Disease, Vienna, Austria. Kristine Yaffe, MD from the University of 13 July 2009: Data from phase I California, USA and colleagues wanted to drug trials for the treatment of mild examine whether post-traumatic stress disorder (PTSD) is associated with the risk of to moderate Alzheimer’s disease developing dementia in veterans. They studied presented over 181,093 veterans aged 55 and over Elan Corporation plc and Transition without dementia (53,155 diagnosed with Therapeutics Inc presented their phase 1 data PTSD and 127,938 without PTSD) and found for the drug ELND005 (scyllo-inositol formerly that over a seven year follow up, that veterans known as AZD-103). The trial suggests that with PTSD were “nearly twice as likely to treatment with ELND005 results in “desired development incident dementia compared to concentrations in human brain tissue and veterans without PTSD”. cerebrospinal fluid when given orally. Preclinical data shows that ELND005 administration is associated with preservation of choline acetyltransferase (ChAT), reflecting preservation of nerve cells that are critical to

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Newsletter: July – August 2009

of vegetables, whole grains, low-fat dairy We provide full references to products and nuts. articles on our website The study was conducted by Heidi Wengreen, www.alzheimer-europe.org RD, PhD of Utah State University and colleagues. 13 July 2009: Study suggests 14 July 2009: Study examines moderate alcohol consumption may diagnosis technique for early reduce risk of dementia for certain Alzheimer’s disease people By analysing data including (a) cerebrospinal Researchers examined the relationship fluid (CSF) concentration and ratios of between alcohol consumption and incident Alzheimer’s related proteins, (b) MRI volume dementia in over 3,069 adults aged 75 and measures of certain sections of the brain and above without dementia. At the start of the (c) scores on certain standard memory, study 2,587 of the participants were assessed learning and brain function tests on some 345 to be cognitively normal and 482 had mild participants (81 with Alzheimer’s disease, 163 cognitive impairment (MCI). Participants were with amnestic mild cognitive impairment and monitored every six months for six years and 101 elderly health controls) researchers were the study suggests that moderate alcohol able to develop a prediction model which consumption was associated with a lower risk helped them to accurately diagnose of dementia for those participants with normal Alzheimer’s disease at an early stage. They cognition at the beginning of the study but not found that when the results of the memory tests for those who already had MCI. were combined and added to these the results The research was led by Kaycee Sink, MD, of the MRI volume measurements of the left MAS from the Wake Forest University School hippocampus, they were able to distinguish, of Medicine, Winston-Salem, NC. with 94% accuracy, those participants who progressed from MCI to Alzheimer’s disease. 14 July 2009: Studies consider caregiver burden and economic costs The researchers, led by Michael Ewers, PhD of Trinity College, Dublin, Ireland, said that “the of Alzheimer’s disease model needs to be validated in autopsy- Various studies presented by Elan Corporation confirmed Alzheimer’s cases.” and Wyeth at the International Conference on Alzheimer’s Disease (ICAD) suggest that there 14 July 2009: Study suggests that is an exponential relationship between total physical activity may slow the rate of costs and Alzheimer disease dependency cognitive decline in older adults levels, with costs increasing significantly with A study carried out by Deborah E Barnes, PhD, increasing dependency. MPH and colleagues from the San Caregivers experience increased disruption in Francisco VA Medical Centre daily activities, greater lack of family support examined changes in levels of both and more time devoted to being a caregiver as physical activity and cognitive the dependency levels of people with function over seven years in over Alzheimer’s disease increased. 3000 participants aged 70-79 years. They found that “older adults who were People with Alzheimer’s disease may have a sedentary throughout the study had the lowest higher prevalence of certain serious conditions levels of cognitive function at the beginning and compared to people without Alzheimer’s experienced the fastest rate of cognitive disease. decline… Cognitive decline was also faster in those whose physical activity levels 14 July 2009: Study examines consistently declined during the study period.” association between diet, cognitive decline and dementia 15 July 2009: Alzheimer drug found to increase beta amyloid in mouse Researchers analysing a 1995 study of food frequency and models cognitive assessment on over The drug dimebolin can be used to treat people 3,000 people aged 65 or older, with mild to moderate Alzheimer’s disease. which was followed up with four Recent research in which mice models were assessments over 11 years, given dimebolin resulted in an unexpected found higher scores for cognitive functioning in “acute increase in the mice’ brain beta amyloid those people who had closely followed the levels”. The protein beta amyloid is a main dietary approaches to stop hypertension constitutent of the amyloid plaques found in the (DASH) diet. The diet includes the consumption

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brains of people with Alzheimer’s disease and 20 July 2009: Study examines effects considered to be a key factor in the of stem cells on memory function in development and progression of Alzheimer’s mice disease. A study found that mice, which were genetically The study was carried out by Samuel Gandy, engineered to have Alzheimer’s disease MD, PhD, from the Mount Sinai School of symptoms, were able to increase performance Medicine, New York, USA and John Cirrito PhD on memory tests after being injected with stem and David M Holtman, MD from the cells (mouse neural stem cells). These cells Washington University in St Louis, MO, USA secreted a protein called “brain-derived and they have called for further research to be neurotrophic factor” (BDNF) resulting in new conducted to investigate this surprising neurites sprouting enabling stronger outcome. connections between neurons. 16 July 2009: Study examines the The study was conducted by Mathew Blurton- relationship between an antibody Jones, La Ferla and colleagues from the and Alzheimer’s disease University of California, USA. Results from a new study suggest that 21 July 2009: Researchers examine treatment with the antibodies of intravenous the relationship between the BChE-K immune globulin (IVIg) may help protect gene and Alzheimer’s disease against Alzheimer’s disease. Researchers analysed medical records of 847 people who A study suggests that mutation of the gene had received at least one treatment of IVIg (for known as butyrylcholinesterase K other conditions such as cancer) over four (BChE-K) damages the end, or tail, years and 84,700 who had not. They found of the BChE gene. In Alzheimer’s that people who had received IVIg had a disease, the tail of this gene plays significantly lower risk of developing an important role in the protection Alzheimer’s disease compared to those who from Alzheimer disease plaques had not received IVIg. A large scale clincical and the study may explain why it is that people trial is now underway to determine whether IVIg who carry the mutated gene are susceptible to could be an effective treatment for Alzheimer’s a more rapid development of Alzheimer’s disease. The research was carried out by the disease than those who carry a normal version Mount Sinai School of Medicine, New York. of the gene. 22 July 2009: Study examines the The research was carried out by Dr Erez rate of decline for a person with Podoly and colleagues of the Wolfson Center for Structural Biology at the Hebrew University Alzheimer’s disease and carer in Israel and the research has been featured in relationship the Journal of Biological Chemistry. Research, published in the Journal of Gerontology, has We provide full references to found that a “particularly articles on our website close relationship with caregivers may give people www.alzheimer-europe.org with Alzheimer’s disease a marked edge over those without one in 4 August 2009: Study suggests link retaining mind and brain function over time.” between brain activity and delayed Led by Constantine Lyketsos MD, MHS of the onset of memory decline John Hopkins Memory and Alzheimer’s A study on nearly 500 people Treatment Center, the researchers examined found that carrying out frequent 167 pairs of caregivers and people with cognitive-stimulating activities Alzheimer’s disease. The pairs were monitored may delay the onset of from 2002, every six months for four years. cognitive decline. Records People with Alzheimer’s disease had similar were made of how many scores for cognitive and functional tests at the cognitive activities (including beginning of the study. However, during the reading, writing, crossword research, differences appeared between those puzzles, board or card games, pairs who had described their relationship as group discussions, or playing music) close and those who had indicated their participants carried out as well as how many relationship as more distant days a week. Researchers found that those participants who “engaged in the highest level of activity, defined

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as 11 activity days per week, delayed USA and colleagues found that “unprovoked accelerated onset of dementia by 15.5 months seizures are uncommon in Alzheimer’s versus those with the lowest level activity, disease, but they do occur more frequently defined as four activity days per week.” than in the general population. Younger age is a risk factor for seizures in Alzheimer’s The research was carried out by the Albert disease”. Einstein College of Medicine of Yeshiva University and published in the journal The research was conducted on over 400 Neurology people with probable Alzheimer’s disease at six monthly intervals and published in the Archives 4 August 2009: Study suggests link of Neurology. between cholesterol levels in mid- life and risk of dementia in later life 12 August 2009: Study investigates role of receptor on amyloid protein in A study which monitored cholesterol levels of Alzheimer’s disease in mice nearly 10,000 people over a 40-year period found that “elevated cholesterol levels in midlife In order to test the hypothesis that alpha significantly increase the risk of Alzheimer’s 7nAChR gene receptors play a role in the disease and vascular dementia in later life.” development of Alzheimer’s disease, researchers from the Salk Institute for The research was led by Alina Solomon MD Biological Studies examined the effects of the from the University of Kuopio, Finland and receptors on transgenic mice over expressing a forms part of ongoing research aimed at better mutated form of the human amyloid precursor understanding of the risk and protective factors protein (APP) and lacking the alpha 7nAChR of dementia. gene and then performed a series of memory 4 August 2009: Study suggests link tests. Those mice with too much APP and no between face shape and mental gene for alpha 7nAChR performed as well as decline normal mice whereas the transgenically modified Alzheimer’s disease mice which had Researchers from the University of Edinburgh been engineered to over express APP and had measured fluctuating asymmetry (FA) on facial the alpha 7nAChR gene performed poorly. photographs of over 200 elderly people and found that “men with higher levels of facial Led by Stephen F Heinemann, the researchers symmetry were less likely to experience a slow concluded that their findings were “consistent down of brain power between the ages of 79- with the hypothesis that the alpha 7nAChR 83 years”. Comparable results were not found plays a role in Alzheimer’s diseases and in women. suggest that interrupting alpha 7nAChR function could be beneficial in the treatment of 5 August 2009: Study examines the Alzheimer’s disease.” effect of oxygen treatment and the 14 August 2009: Study examines the rate of cognitive decline in mice relationship of sleep duration and Researchers who exposed 11 transgenic mice the risk of dementia (who developed abnormal levels of the protein amyloid beta) to oxygen over A study carried out by J several sessions found those Benito-León, University which received 100% oxygen to Hospital, Madrid, Spain and perform much worse than mice colleagues found that exposed to 21% oxygen (similar “prolonged sleep duration level of typical room air). The (night-time sleep and daytime authors concluded that further napping) may be associated with an increased investigation is required on see risk of dementia.” if oxygen treatment (used in surgery) may The study consisted of over 3000 participants trigger the symptoms of Alzheimer’s disease in monitored over a three year period and has humans. been published in the European Journal of The study was led by Gary Arendash, Neurology. University of South Florida, USA and published 21 August 2009: Study examines in NeuroReport. brain activity and different types of 8 August 2009: Study examines the dementia relationship between seizures and Researchers who monitored the brain activity Alzheimer’s disease of people with dementia have found that the A study carried out by Nikolaos Scarmeas MD, brain activity varies according to the type of Columbia University Medical Center, New York, dementia a person had. People who had

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Alzheimer’s disease displayed a more random The research was led by G Tsivgoulis MD, and unstructured brain activity than those University of Alabama at Birmingham and people who had fronto-temporal lobal published in the journal Neurology. degeneration (FTLD), with the latter developing a more “ordered network organisation”. 27 August 2009: Study confirms the theory that gene mutation causes The study was published in the journal BMC transmissible prion disease Neuroscience. Led by Willem de Haan from VU University Medical Centre, Amsterdam, the Prions (which are versions of a protein called Netherlands, the researchers called for further PrP) can cause various diseases, including investigation to establish more insight into the Creutzfeldt-Jakob disease (CJD), a type of relationship between the disease and neural dementia. Researchers investigated the theory networks. that “a mutation in a the PrP gene can cause a transmissible prion disease”, and their findings 25 August 2009: Study examines the suggest that this is indeed the case. relationship between weight and brain tissue The research was led by Walter Jackson from the White Institute, Cambridge, A study has found obese and overweight Massachusettes, USA. individuals to have less brain tissue than people of a normal weight. Paul Thompson We provide full references to from the University of California (UCLA) articles on our website Department of Neurology, who led the study, said that this loss of brain tissue “depletes www.alzheimer-europe.org cognitive reserves, putting (one) at much greater risk of Alzheimer’s and other diseases that attack the brain.” Dementia in Society The research is published in August’s edition of June 2009: Rock stars back scientist the journal Human Brain. recruitment and funding campaign 26 August 2009: Study compares Rock stars Joe Perry (lead guitarist and co- brain function between elderly founder of Aerosmith), Sheryl Crow people considered at risk for (singer/songwriter), WIll.I.AM (front man, Black Alzheimer’s disease and those Eyed Peas), SEAL (singer/songwriter) and without genetic and/or family Josh Groban (singer) have joined in the history risk factors Geoffrey Beene Gives Back “Rock Stars of Science” campaign, which aims to “honour the By monitoring the brain activity using a researches who are saving our lives, to make functional magnetic resonance imaging (fMRI) science rock as a career choice for the next scanner, researchers found an increased generation, and to raise the platinum voices in activation of certain parts of the brain in at risk demand for future research funding.” The (of Alzheimer’s disease) individuals compared campaign includes posters of the rock stars to those individuals without genetic and/or alongside doctors stating “The musicians you’ll family history risk factors. The researchers, know – they’re icons. As for the other guys, from the Cleveland Clinic, Lou Ruvo Center for they’re the doctors whose work has brought us Brain Health, hope that future studies can be closer to cures for Cancer, HIV/AIDS and developed to help diagnose Alzheimer’s Alzheimer’s disease. These fellows won’t set disease earlier. your soul on fire like Sheryl Crow, but they’re The study was published in August edition of lighting up the future with something just as Neurology. powerful. Hope.” 26 August 2009: Study examines 11-16 July 2009: International relationship between blood pressure conference on Alzheimer’s disease and cognitive impairment held in Austria Researchers who examined the relationship The Alzheimer’s Association 2009 International between blood pressure and cognitive status Conference on Alzheimer Disease (ICAD) was found that higher diastolic blood pressure held in Vienna, Austria. Participants heard of (DBP) was associated with impaired cognitive scientific work being carried out, including status. (For every increment of 10mm Hg in studies examining the effect on Alzheimer’s DBP there was a 7% higher odds of cognitive disease of exercise, alcohol, stress and various impairment). No association was found drugs. Presentations were also given on the between the systolic blood pressure and prevalence of dementia and recruitment cognitive status. strategies for clinical trials. Various poster

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presentations were given including those from Division of Dementia Studies at Bradford the Elan Corporation who had presentations University, UK. about their joint work with Wyeth (which included their clinical programmes for Barbara Bowers is Associate Dean for bapineuzumab). Research and Helen Denne Schulte Professor in the School of Nursing at the University of Wisconsin-Madison, USA and holds an adjunct New resources and position at the Australian Catholic University, publications Australia. Excellence in Dementia care costs GBP 65 June 2009: Book published on (hardcover) or GBP 29.99 (paperback). ISBN- weekly themed activities for care 13: 978-0335 22375-6;ISBN-10: 0335 22375-3 home residents July 2009: New book published on “The Activity Year Book” offers person centred counselling for ideas for weekly themed activities people with dementia for care staff who plan activities for elderly people in day or Aimed at counsellors, health and social care residential care settings. It is professionals, carers, people written by Anni Bowden and with dementia and their families, Nancy Lewthwaite. The book “Person-centred counselling for costs GBP 24.99 (ISBN: 978-1- people with dementia: Making 84310-963-1). sense of self” by Danuta Lipinska “explores the value of June 2009: Book on dementia care counselling for men and women published living with this condition and how it enables them to make “Excellence in Dementia Care”, edited by sense of their lives and their notions of Murna Downs and Barbara Bowers, provides themselves. The book costs GBP 14.99 (ISBN an invaluable source of information for all 978-1-84310-978-5). people working with people with dementia. Contributions are from researchers, July 2009: Book published on practitioners and professionals in the care of planning care for people with people with Alzheimer’s disease dementia and other dementias. The focus is on care issues for people with “Enriched care planning for dementia and examples are people with dementia: A good given from various countries and practice guide to delivering include, inter alia, the experience person-centred care”, by Hazel of people with dementia and their May and Paul Edwards, offers a families. practical framework to work from for assessment, care planning The book hopes to offer valuable insights when and review of people with dementia who making decisions about how to: require or receive health and/or social support. • Provide competent and The book costs GBP 25, ISBN 978-1-84310- compassionate care for people with 405-6. Alzheimer’s disease and other August 2009: Dance therapy for dementias people with dementia • Build systems to provide effective care Earlier this year a trial of “Wu Tao” dance • Encourage collaboration among multi- therapy was carried by Alzheimer’s Australia disciplinary professionals and users WA out on six residents from care homes in and carers Joondalup, Perth Australia. Wu Tao (the dancing way) was developed by former • Support those caring for people with ballerina, Michelle Locke. It is a “series of five dementia dances which aim to balance the body’s life force, or “chi” by stretching the “meridians” • Ensure those with dementia maintain which oriental medicine believes channels dignity, well-being and meaningful energy through the body. Each of the dances participation in life. represents one of the elements – air, water, Murna Downs is Chair in Dementia Studies and wood, fire and earth. Once a week a Wu Tao Head of the Bradford Dementia Group, in the instructor visited to group, which included the residents, their carers, family members, therapy assistants as well as the facility’s

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occupational therapist. The instructor taught 17 August 2009: Booklet published adapted versions of the dance for them and on caring and consent feedback has been extremely positive. After consultation with Alzheimer Scotland, the 8 August 2009: Student designs Mental Welfare Commission for dementia-friendly jigsaw Scotland and the Office of the Public Guardian, the booklet A design student in the UK has launched a “Caring and Consent – your right jigsaw puzzle aimed to be to be involved in decisions about used-friendly for people with the health care of the adult you dementia. Ben Atkinson- care for” has been published. It Willes (22) from Kingston explains the rights of: University became inspired to design an activity puzzle • people who are unable to consent to after his granddad, who medical treatment enjoys puzzles, was diagnosed with Alzheimer’s disease. • their carers to be involved in decisions about their health care and Ben has adapted the traditional puzzle in a number of ways, incorporating: • rights of a legal proxy - large, chunky pieces, making it easier to Published by published by Health Rights handle Information Scotland (HRIS). - specially designed contrast background to facilitate matching up pieces - finished edges Contact Alzheimer Europe at: - traditional images, rather than younger pictures normally associated with large- Alzheimer Europe, 145 route de Thionville, L-2611, pieced puzzles foamex which is a long- Luxembourg (www.alzheimer-europe.org) lasting, durable, flexible and easy to clean Jean Georges, Executive Director material. ([email protected]) 14 August 2009: Guide on younger Dianne Gove, Information Officer ([email protected]) onset dementia released onto web Annette Dumas, EU Public Affairs Officer A 38 page online booklet, entitled “Quality ([email protected]) Dementia Care Series: Younger Onset Julie Fraser, Communication Officer Dementia – A practical guide” has been ([email protected]) produced by the Prince of Wales Medical Gwladys Guillory-Hickey, Administrative Assistant Research Institute (POWMRI), Australia. The ([email protected]) objective of the publication is “to draw together Grazia Tomasini, Administrative Assistant information on younger onset dementia and ([email protected]) provide practical information for those newly diagnosed as well as their families and carers.” Alzheimer Europe Board Written by Professor John Hodges and his Chairperson: Maurice O’Connell (Ireland) team from the Fronto-temporal Dementia Vice-Chairperson: Sabine Henry (Belgium) Research Group (FRONTIER), areas covered Honorary Secretary: Sigurd Sparr (Norway) in the booklet include: Honorary Treasurer: Heike von Lützau-Hohlbein (Germany) • Background on younger onset Members: dementia Iva Holmerová (Czech Republic) • Practical approaches to the Neil Hunt (United Kingdom) management of dementia Pekka Laine (Finland) Patrick Maugard (France) • The caring role and the family Alicja Sadowska (Poland) • Planning for the future Charles Scerri (Malta) Marc Schaefer (Luxembourg) • Research into younger onset Maria do Rósario Zincke dos Reis (Portugal) dementia: brain donation. The booklet was commissioned by Alzheimer’s Australia and funded by the Federal Government (ABN 79 625 582 771).

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AE Calendar The following meetings will be attended by representatives of Alzheimer Europe: Date Meeting AE Representative Meeting of the GSK Health Advisory Board (London, United 1 September Jean Kingdom) Parliament Magazine Swedish Presidency Reception (Brussels, 1 September Annette Belgium) Environment Committee Meeting, European Parliament (Brussels, 2 September Annette Belgium) Employment and Social Affairs Committee, European Parliament 2 September Annette (Brussels, Belgium) Industry and Research Committee, European Parliament (Brussels, 3 September Annette Belgium) 7 September AE Staff Meeting (Luxembourg, Luxembourg) AE Staff Facing the future, Dementia Services Development Centre (York, 14-16 September Dianne United Kingdom) EU Presidency Conference on Healthy and Dignified Ageing 15-16 September Jean (Stockholm, Sweden) 22 September EFPIA Think Tank (Brussels, Beligum) Annette 23 September European Dementia Ethics Network (Berlin, Germany) Jean and Dianne 28 September AE Board Meeting (Brussels, Belgium) AE Board and Staff 28 September Meeting with AE sponsors (Brussels, Belgium) AE Board and Staff European Parliament lunch debate “European Action on 29 September AE Board and Staff Dementia” (Brussels, Belgium) Future Conferences Date Meeting Place 15-16 September Dementia Services Development Centre’s 3rd International York, United Kingdom 2009 Conference: Facing the future, www.dementia.stir.ac.uk 12. Internationaler Demenzkongress Saar-Lor-Lux, Saarlouis-Roden, 23 September 2009 www.demenz-saarlouis.de Germany 19th World Congress of Neurology, 24 October 2009 Bangkok, Thailand www.wcn2009bangkok.com/index.cfm 2nd Eastern European Psychiatric Congress, 27 October 2009 Moscow, Russia http://en.paeeb2009moscow.ru 2nd Conference “Clinical Trials on Alzheimer’s Disease, 29 October 2009 Las Vegas, USA www.ctad.fr 3-5 November th 4 UK Dementia Congress, www.ukdementiacongress.co.uk Harrogate, UK 2009 19-22 November The 6th International Congress on vascular dementia, Barcelona, Spain 2009 www.kenes.com/vascular 25th International Conference of Alzheimer’s Disease 10 March 2009 Thessaloniki, Greece International, www.adi2010.org 9-11 June 2010 7th International Short Break Conference Galway, Ireland 2-5 September Dignity for the Frail Old: From dilemmas to solutions, Bergen, Norway 2010 www.dignity.no

Alzheimer Europe gratefully acknowledges the support of its silver sponsors Lilly, Lundbeck and Wyeth and its gold sponsors

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