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NEWSLETTER June 2016

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NEWSLETTER June 2016 NEWSLETTER June 2016 at the start of the month, and we Highlights in this issue were pleased to see that one of the first four investigational treatments 1 June: EMA selects AD 17 accepted into the programme is an med for PRIME programme Editorial experimental Alzheimer’s 7 June: France may no longer 14 Welcome! treatment. reimburse AD meds Also on the policy front, we were 23 June: EPAD and EMIF voice Where to begin? 14 delighted to be involved in a focus concerns over Brexit June has certainly been a busy and group advising on the development 30 June: French translation 3 interesting month! of a new Swedish dementia of 2015 ethics report published strategy this month and to have 30 June: 26AEC Early Bird The topic on been involved in the European rates close everyone’s lips, it seems, is 3 “Brexit”, so I’ll begin there. In the Commission’s “Guidelines on run up to the UK’s EU Referendum Summaries of Clinical Trial Results for Laypersons”, on which a public - in which voters elected not to continue as a Member State of the consultation was launched at the EU - partners from two of the most start of the month. The publication important research programmes in should be finalised by the end of the dementia field, EPAD and EMIF the year. I am also pleased to published an article in The Lancet announce that a French translation Psychiatry, titled “Better together of our 2015 Ethics report is now for better dementia research and available, in the “Publications” care”, voicing serious concerns section of our website. Finally, on the publication front, our Director over what the future might hold for dementia research in the case of for Projects Dianne Gove has had another article published in the Table of contents the UK leaving the EU. We are a partner in both projects, and I was journal Dementia, on the ethical Editorial ................................................... 1 pleased to contribute to the article implications of perception and Alzheimer Europe................................... 2 alongside other project leaders. In portrayal of dementia. Congratulations, Dianne! EU projects ............................................. 4 the aftermath of the vote, we were reassured to hear that IMI has said On a less happy note, we were sad Alzheimer Europe networking 2016...... 4 it will not affect the IMI-2 to hear that Raoul has decided to European Alzheimer’s Alliance ............. 6 programme, nor the funding of the leave our European Working Group EU developments ................................... 7 projects, including UK partners. of People with Dementia (EWGPWD) as he no longer feels Members’ news ...................................... 9 Brexit is not the only thing on our minds this month, however, on the able to participate. Policy watch ......................................... 13 policy front. France’s health Last but not least, I’d like to remind Science watch ...................................... 15 authority, the Haute Autorité de everyone that today, 30 June, is the Science – behind the headlines .......... 15 Santé, is currently considering final day for Early Bird rates on our removing the four existing anti- 26th annual conference (26AEC) Living with dementia............................ 19 Alzheimer's drugs on the market registrations. The rate will no Dementia in society ............................. 18 from the list of reimbursed longer be available as at midnight Education .............................................. 19 medications - a possible move that tonight, CET. our national member association Our next newsletter will be a Job opportunities ................................. 20 France Alzheimer is double-month summer edition for AE Calendar .......................................... 21 understandably extremely July and August and will be Conferences 2016 ................................ 21 concerned about. The decision will published on 31 August. Until then, be reached in the coming days. In I wish you all an excellent summer! more positive medicines-related news, the first statistics on the European Medicines Agency’s Jean Georges PRIME programme were released Executive Director Page 1 of 22 Newsletter: June 2016 1 June: AE involved in Commission Guidelines on Alzheimer Europe Summaries of Clinical Trial Results for Laypersons 30 May: Helen Rochford-Brennan speaks at On 1 June, a public consultation was conference on living with dementia in rural Ireland launched by the European Commission on its “Guidelines on Summaries of Clinical Trial Results for Laypersons”. The consultation will run for three months, until 31 August. The aim is to finalise the publication by the end of 2016. Alzheimer Europe (AE) was involved in the task force set up by the Commission to develop these guidelines. http://ec.europa.eu/health/human-use/clinical- trials/developments/index_en.htm On 30 May, Helen Rochford-Brennan, Vice-Chair of Alzheimer Europe’s European Working Group of People 3 June: AE Chairperson Heike von Lützau-Hohlbein with Dementia (EWGPWD) and chair of the Alzheimer reports on Alzheimer Scotland Conference Society of Ireland’s Irish Dementia Working Group (IDWG), gave an inspiring speech at a conference on “Living with On 3 June, AE Chairperson Dementia in Rural Ireland”, hosted by NUI Galway Heike von Lützau-Hohlbein (National University of Ireland). (pictured, middle) attended the Alzheimer Scotland During her address Helen (pictured, 3rd from right in green National Conference 2016 in jacket) spoke about the stigma that comes with a diagnosis Edinburgh. The conference of dementia and about the challenges facing those in rural was held under the theme areas, including access to transport. “Global to Local: research, practice, innovation” and well “We can't deny this condition but we can continue to defy attended by nearly 600 it with support” Helen said. participants. https://www.eventbrite.ie/e/living-with-dementia-in-rural-ireland- conference-tickets-24715796613 In the session “global update” she presented the work of AE the achievements in the field of making dementia a 31 May: Second meeting for the Carers’ Survey held European priority, explaining the instruments for lobbying in Amsterdam for dementia at EU-level, referring to the Glasgow Declaration and its great support in 2015. AE’s The second meeting for Alzheimer Europe (AE)’s carers’ contributions in the various European research projects survey was held in Amsterdam on 31 May. AE were described - AE’s role in these projects is always to act members from the five countries where the survey will as advocate for people with dementia and their carers. Also take place and Bob Woods from the University of Bangor developments like the second Joint Action on Dementia attended the meeting. under the lead of the Scottish government and the legacy A first draft for the questionnaire that will be used for the events under the actual and coming EU Presidencies were survey was circulated prior to the meeting and all mentioned. participating countries had the opportunity to send comments. 10 June: Dianne Gove’s article on ethical implications of perception and portrayal of In the meeting, the group discussed the comments and dementia is published necessary changes for the questionnaire. Also additional methodological issues such as sampling were discussed. On 10 June, an article on “Ethical implications of the perception and Bob Woods will apply for ethics approval at Bangor portrayal of dementia” was published University. He will also finalise the questionnaire, pilot it in online in the journal, Dementia, co- the UK and will send the final version to all participating authored by Dr Dianne Gove, Director for countries for translation. Data collection will start after the Projects, Alzheimer Europe, Dr Debby L summer. Gerritsen, Department of Primary and The next meeting is scheduled for 24 January 2017 in Community Care, Radboud University Amsterdam. At this meeting members of the group will Medical Centre Nijmegen, Netherlands and Prof. Jan have the opportunity to contribute towards the Oyebode, School of Dementia Studies, University of interpretation of the results. Bradford, Bradford, UK. AE’s Executive Director Jean Georges and Project Officer The article explores the way we perceive and portray Ana Diaz attended the meeting. dementia and the implications this has on how we act towards people with dementia and how we address the issue of dementia within society. Perceptions of dementia as reflected in explanatory models of its cause and nature, descriptions of characteristics of people with dementia, the use of language, media portrayals and the views of people living with dementia are examined. Page 2 of 22 Newsletter: June 2016 “Dementia” is an international peer-reviewed journal that 20 June: Raoul Grönqvist leaves the EWGPWD acts as a forum for social research aiming to improve quality of life and care for people with dementia and their On 20 June, we received news families. that Raoul Grönqvist has decided to leave our European Working http://dem.sagepub.com/content/early/2016/06/10/1471301216654036.abs Group of People with Dementia tract (EWGPWD). His wife, Milja Ahola 14 June: AE Chairperson Heike von Lützau-Hohlbein contacted us to let us know that reports on German event “8. Benediktbeurer Raoul no longer feels able to participate in the group and Zukunftsgespräche” will step down from his position as a member. On 14 and 15 June at Raoul was born in 1951 in Helsinki, Finland. He is a the “8. Benediktbeurer tribologist and a Doctor of
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