NEWSLETTER May 2015
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NEWSLETTER May 2015 use the buttons in this newsletter Highlights in this issue Editorial to sign. 4 May: AE and INTERDEM 2 Welcome! Two of the projects AE is involved canvass EU Health minister I’d like to start off in held meetings this month, 5 May: Diagnosis: only half of 10 by announcing NILVAD in Greece in mid-May and French people with dementia that Alzheimer later in the month, the EPAD 14 May: EWGPWD holds first 2 Europe is looking project held its AGM and meeting of 2015 for a new team consortium meeting in Scotland. At the latter, two very interesting 19 May: AGM and consortium 3 member, a Policy new studies from the Netherlands meeting of EPAD project held Officer, to help 27 May: Early Bird rates for were presented, looking at the 2 support us in our campaigns, 25AEC close develop policy, report on EU and prevalence of amyloid plaques in 29 May Alzheimer Europe is national policy developments and adults with and without dementia. 15 looking for a Policy Officer collaborate with our members, In policy news, a report emerged among other things. Please see the in France, claiming that only half of advert for this position on page 15 the population living with of this newsletter or on our dementia has been diagnosed. The website if you are interested in report also noted a huge disparity applying. The deadline for between geographic regions in the applications is 26 June. country. In the UK, the Alzheimer's To continue the trend, May has Society also voiced its concern been another busy month for us. about the impact of further social We joined forces with INTERDEM care cuts, on people with in the early part of the month, dementia and their families in the meeting with a representative of UK. the EU Health Commissioner to In more positive news, the make our case for greater EU Croatian Ministry of Health has collaboration on dementia. We lent its support to a number of were delighted to hear of the Alzheimer Croatia's proposals in a Commissioner’s continued interest recent meeting, including one Table of contents and support to dementia being stating that the National Dementia considered as a European public Strategy process should be Editorial .......................................... 1 health priority. accelerated. Finally, the Norwegian Alzheimer Europe .......................... 2 Parliament has made a decision to In other AE news, our European adopt a law making it mandatory EU Projects .................................... 3 Working Group of People with to provide activities for people Alzheimer Europe Networking ..... 3 Dementia (EWGPWD) held its first with dementia in daycare centres, full meeting of the year in Brussels, EAA ................................................. 4 starting from 2020. including a new member from EU Developments......……………..7 Norway and Early Bird rates have As always, there is plenty now closed for 25AEC in Slovenia happening, but plenty more to do, Members’ News ............................. 6 this coming September. The full so on that note, I wish you all a Policy Watch ................................ 10 programme is available on our very productive June! website and if you are attending, I Science Watch ............................. 11 Jean Georges would urge you to book your hotel Dementia in society .................... 14 as soon as possible for this busy Executive Director New Publications & Resources . 14 period in Ljubljana. Finally, our Glasgow Declaration campaign is AE Calendar 2015 ........................ 15 going strong, but we need more Future Conferences 2015 ........... 16 support – the Declaration now exists in 11 European languages, so please sign it and share with your network! See our website or Page 1 of 17 Newsletter: May 2015 conference. Dianne and Ana provided information on Alzheimer Europe Alzheimer Europe’s ongoing projects which the group will be involved in later this year. As part of a project with 4 May: Alzheimer Europe and INTERDEM make INTERDEM, Dianne and Ana conducted two consultation joint case for greater EU collaboration on groups with people with dementia and their carers about dementia outcomes measures for psychosocial interventions in dementia. On 4 May, a joint th delegation of Alzheimer 27 May: Early Bird rates for 25 AE annual Europe (Chair Heike von conference close Lützau-Hohlbein and Executive Director Jean At the end of May, the Early Bird rates for our annual Georges) and INTERDEM conference closed. The detailed conference programme (Prof. Myrra Vernooij-Dassen and Frans Verhey) met with and abstracts for 25AEC, which will take place in Ljubljana, Paula Duarte-Gaspar, a representative of EU Health Slovenia from 2 to 4 September, are available on our Commissioner Vytenis Andriukaitis who was unable to website: attend due to health reasons. http://alzheimer-europe.org/Conferences/2015-Ljubljana/Detailed- programme-and-abstracts During the meeting, both organisations made a case for greater EU collaboration: Alzheimer Europe presented its For those who have already registered, please ensure you Glasgow Declaration which calls for the development of a book your hotel soon as space is filling up quickly for this European dementia strategy and greater coordination of busy period. European research activities and INTERDEM presented its important activities in the field of psychosocial interventions and social health. Paula Duarte-Gaspar highlighted the continued interest and support of the Health Commissioner to dementia 28 May: Glasgow Declaration campaign continues being considered as a European public health priority. She stressed that a number of calls of the Glasgow Declaration This month, the Glasgow Declaration has been translated were already being implemented such as a working group into German, Turkish and Dutch, thanks to our national of government experts on dementia or an internal member organisations in those countries. The German Commission group to better coordinate dementia version is available on our website and the Dutch and activities at EU level. Turkish versions will be available very soon. A Finnish version is also available on the Alzheimer Society of She also pointed out that the Commission paid particular Finland, Muistiliitto’s website. This means the Declaration attention to the activities of Alzheimer Europe funded now exists in a total of 11 European languages, including thanks to an operating grant from the EU health English! programme. A final priority for the Commissioner is the launch of a new Join Action on dementia later in 2015 to We have also received support from four new continue the great work initiated by ALCOVE. organisations this month: INTERDEM, the Slovenian Neurological Society, RePOD (Rotarians easing Problems 14-16 May: European Working Group of People of dementia) and our very own EWGPWD (European with Dementia meets in Brussels Working Group of People with dementia). We thank them all for their support. On 14-16 May, the European Working Group In Slovenia, Human Rights Ombudsman Vlasta Nussdorfer of People with Dementia and her deputy, Jernej Rovšek have both signed the (EWGPWD) had its first Declaration this month, for which we are extremely meeting of the year in grateful. Brussels. All members of the group attended the At the time of writing we have signatures from 2,271 meeting and welcomed a individuals, 56 organisations and 57 policy makers new member from (including 51 MEPs). Norway. During the first day of the meeting, there was The Glasgow Declaration is seeking a European Dementia considerable discussion surrounding the purpose of the Strategy and national strategies in every country in EWGPWD and the achievements of the group over the Europe. Signatories also call upon world leaders to last two years. Discussions ensued about the relevance of recognise dementia as a public health priority and to reaching out to countries where the group has no develop a global action plan on dementia. members and about strategies for involving more people with dementia at a national and European level. The If you have not already signed, please do so today by group also discussed their participation in the annual clicking on the below button. We need your support to Alzheimer Europe Conference in Ljubljana (Slovenia) next make this happen! September. It was agreed that two members of the group would give a speech during the plenary sessions and four members would talk about their experiences of living with dementia in a symposium. The group also discussed how to give more visibility to the group during the Page 2 of 17 Newsletter: May 2015 debates between leading researchers, clinicians, ethicists, EU Projects lawyers and representatives of both pharmaceutical 13 May: NILVAD partners hold 4th General companies and people with dementia (Alzheimer Europe and Alzheimer Scotland). Assembly The key issues were about the scientific, practical, legal The 4th NILVAD General and ethical implications related to the setting up of Assembly took place in European-wide virtual register of 24,000 patients, of Thessaloniki, Greece on which 1,500 will be invited to participate in a trial to test 13-14 May 2015. new treatments to prevent Alzheimer’s dementia. NILVAD’s clinical trial of nilvadipine for mild to This initiative is a joint undertaking between the European moderate Alzheimer’s disease is progressing well, having Union and the European Federation of Pharmaceutical met its recruitment target of 510 people on 31 March. Industries and Associations (EFPIA). The trial sites are located in nine European countries and 47 people have already completed the 18-month trial If successful, this project is likely to have a positive impact period. Several NILVAD partners are conducting sub- on the way that future clinical drug trials are organised. studies on frailty, blood flow and cerebrospinal fluid which are also well populated. A new sub-study is in development to document the experiences of the trial participants and their carers. This study was conceived by Alzheimer Europe and CHRU Lille and aims to create a picture of a Phase 3 clinical trial from the participants’ point of view.