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NEWSLETTER April 2014

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NEWSLETTER April 2014 NEWSLETTER April 2014 went down very well. The working Highlights in this issue Editorial group received plenty of feedback With the during and after the event, which 1 April: MEP Marina 3 European Parlia- it will consider prior to launching Yannakoudakis event ment elections the guidelines at our annual 4 2 April: EP vote on clinical just around the conference later this year. trials regulation corner, Annette Our member organisations have 7 April: German Society 6 and I were invited been busy with their own campaign to join a campaigns and our Irish and UK 8-9 April: Global Forum on 2 discussion at the colleagues are contacting Incontinence European Parliament in Brussels politicians for both European and 23 April: Memory loss reversal on the first day of the month. MEP local elections . study 10 Marina Yannakoudakis invited Germany and France have been 30 April: AE closes call for 2 MEPs, NGOs, representatives from actively campaigning and managed abstracts EU Health Commissioner Tonio Borg’s cabinet and other to gather over 150,000 and 50,000 2 May: EU Dementia pledge 3 Commission officials to discuss the signatures respectively in support update future of EU dementia policy. of their petitions in favour of healthcare reforms. As the campaign for the European elections picks up steam, so does In our “dementia in society” our call for support to our section, we report on a recent UK European Dementia Pledge. 136 EP survey into the impact of workers candidates now support greater trying to juggle work and care. The EU collaboration on dementia, 71 results may give businesses pause of which signed the pledge in April for thought. alone! Also in the UK, our friends at the We have been applying some of University of Worcester are our tweeting skills picked up at looking for a new Head for their Lilly’s “Twitter Academy” in Association for Dementia Studies. Brussels on 8 April and our Twitter Last but certainly not least, the call account has been busy with the for abstracts for our upcoming strain of all the thank you tweets conference in Glasgow has now to pledgees and member closed. They had been arriving in a organisations. Table of contents steady stream since the call Editorial ............................................... 1 This month has also seen an opened. The stream turned into a important EU development in the river in April and at the end of the Alzheimer Europe ................................ 2 area of clinical trials, with the new month the flood barriers were AE Projects .......................................... 2 Clinical Trials Regulation receiving really tested, the result being an a landslide vote in favour at the impressive 331 abstracts (more AE Networking 2014 ............................ 3 European Parliament on 2 April. It than double the number of last European Alzheimer’s Alliance ........... 3 will come into force mid-2016 and year). All abstracts will be should ensure more open reviewed by the Programme EU Developments ................................ 4 reporting of clinical trials results in Committee and authors will Members’ News .................................. 5 Europe, as well as saving money receive their decisions by the end and red tape for research of May. I would like to remind all Policy Watch........................................ 6 institutions and companies accepted presenters that you must Science Watch ..................................... 7 conducting clinical trials in the EU. register for the conference by 30 June via our website. Dementia in Society .......................... 10 On 8 and 9 April Dianne and I flew Here’s to a May that promises to New Publications & Resources.......... 11 to Madrid for the Global Forum on Incontinence. Dianne presented be just as eventful. AE Calendar 2014 .............................. 12 the first draft of the guidelines on Jean Georges Future Conferences ........................... 12 continence care for people with dementia living at home, which Executive Director Page 1 of 13 Newsletter: April 2014 his/her wellbeing and that of informal and formal carers Alzheimer Europe and 3. The wellbeing of each person is influenced by a 8 April: AE staff attend Lilly’s Twitter Academy particular socio-economic and political context which also points towards the need for On 8 April, Kate Ellis and Alex Teligadas attended a Twitter compromise. training session hosted by Lilly in Brussels. The “Twitter Interdependency and the Academy” course was designed to increase understanding need for carers to consider of the popular social medium amongst patient their own well-being were organisations and also Lilly employees. The course was led further developed during the by two experts from communications agency Burson- session on “autonomy and Marsteller and focused on how the service helps interdependence” chaired by organisations to communicate quickly and effectively with Sabine Henry and involving the members of the Groupe external audiences. The course sessions were very lively des Battants (the group of fighters). In the afternoon, a and interactive, with participants vying to produce a series of short presentations were made on a range of series of Tweets that gradually included all of the best topics such as palliative care, new guardianship features of the service. legislation, Alzheimer cafés and theatrical improvisation. .@AlzheimerEurope thanks @LillyPadEU for the invitation 30 April: Alzheimer Europe closes call for abstracts to attend the recent Twitter Academy session held by th @BMDigital in #Brussels! The call for abstracts for the 24 Alzheimer Europe Conference is now closed. We are delighted to have 8-9 April: Dianne Gove presents at Global Forum received more than 330 abstracts. These will be reviewed on Incontinence by the Programme Committee in May. All submitting authors will be informed of the Committee's decision by On 8-9 April 2014, Dianne 31 May 2014. and Jean attended the Global Forum on www.alzheimer-europe.org/Conferences/2014-Glasgow Incontinence in Madrid, Spain. Dianne presented AE Projects the first draft of the guidelines on continence 29 April: AFE-INNOVNET project holds first care for people with dementia living at home. There was webinar considerable interest from conference participants in The first these guidelines with some providing feedback and AFE- offering to be involved in the consultation process which INNOVNET will end in the middle of May. webinar, “A Solution to Demographic Change” was held Since the conference, several groups of people with on 29 April, moderated by Christina Dziewanska-Stringer dementia, informal carers, professional carers and some (Council of European Municipalities and Regions - CEMR). policy makers have been contacted and the working The aim was to present the project to interested group (comprised of experts selected by SCA and stakeholders and 3 speakers were invited to do so: Anne- Alzheimer Europe) will consider all feedback before Sophie Parent, Secretary General of AGE Platform Europe, finalising the guidelines which will be launched in October who made a general presentation of the project; Nhu 2014 at the AE annual conference in Glasgow. Tram, Project Officer of the Council of European 24 April: Dianne attends 22nd Ligue Alzheimer Municipalities and Regions (CEMR), who focused on the annual conference work package 3; Joan Martin, Responsible for the Louth Age-friendly portfolio, who introduced the various On 24 April 2014, Dianne attended the 22nd annual initiatives going on in Louth County and how it is involved conference of the Ligue Alzheimer asbl on the topic in the AFE-INNOVNET project. «L’Éthique à la recherche du bien-être» in Huy, Belgium. Between 35 and 40 participants attended the interactive In the opening speech, Prof. Michel Longneaux described webinar. ethics as involving respecting each person as a person and warned against definitions of personhood based on A recording of it is available here: cognitive capacity or self-awareness. He emphasised three points in relation to ethics and wellbeing: 1. The need to www.youtube.com/watch?v=2s-FG0rDQ5s&feature=youtu.be be realistic and to accept that everything is not possible. He pointed out that it can be frustrating when carers realise that what they would like to do for the person with dementia cannot be achieved, 2. Concerns about wellbeing should not focus solely on the person with www.alzheimer-europe.org/Donation dementia but should involve a compromise between Page 2 of 13 Newsletter: April 2014 Alzheimer Europe Networking On 1 April (Brussels), Annette and Jean attended the meeting organised by MEP and European Alzheimer’s Alliance Vice-Chair, M. Yannakoudakis, ‘Hand in hand – Fighting against Alzheimer’s and other forms of dementia together’. On 3-4 April (Brussels), Annette attended the European Commission summit on chronic diseases. On 7 April (Diegem, Belgium), Alex attended a meeting of the EMIF WP15 Communications team. On 8 April (Brussels), Annette attended the meeting organised by A. Kovatchev, MEP, on ‘universal access to health: your voice in the European Union’. On 8 April (Brussels, Belgium), Kate and Alex attended the “Twitter Academy”, a social media training session sponsored by Lilly. On 8-9 April (Madrid, Spain), Dianne and Jean attended the Global Forum on Incontinence at which Dianne presented the first draft of the guidelines on continence care for people with dementia living at home. On 9 April (Brussels, Belgium): Annette attended the Carers Interest Group in the EP meeting that explored the ‘carers and work/life balance’. On 10 April (Luxembourg, Luxembourg), Jean met with representatives of the European Association for Homes and Services for the Ageing. On 24 April (Huy, Belgium), Dianne attended the 22nd annual conference of the Ligue Alzheimer asbl on the topic «L’Éthique à la recherche du bien-être». On 25 April (Brussels, Belgium), Jean met with representatives of Novartis and Lundbeck. On 30 April (Luxembourg, Luxembourg), Jean met with representatives of Association Luxembourg Alzheimer. On 30 April (Diegem, Belgium), Alex attended a meeting of the EMIF WP15 Communications team.
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