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NEWSLETTER April 2015 NEWSLETTER April 2015 been translated into seven Highlights in this issue Editorial European languages and will soon be available in three more. We 1 April: AE announces new 2 Welcome! would like to thank our members Expert Advisory Panel April has been for their help on this! We are also 2 April: Malta launches 9 a great month delighted to have received National Dementia Strategy in European signatures from three more MEPs 2 April: Wales unveils new 9 policy terms, this month, two of whom are new dementia plans with Malta members of our European 14 April: WHO states position 10 launching its Alzheimer’s Alliance. If you have on clinical trial results National not already done so, please sign, 23-24 April: MIAMI-MD 3 Dementia Strategy “Empowering using the buttons available in this project kicks off Change”, written by our Honorary newsletter. 30 April: Glasgow Declaration Secretary, Dr Charles Scerri. The 3 is available in eight languages Maltese strategy is the fifteenth On the European project front, national plan to be launched in there was a big kick-off meeting Europe, but the first to include a for the new project, MIAMI-MD at dementia-friendly version. the end of the month, at which we presented our Communication and At the start of the month, the Dissemination plans, as the work Welsh government announced a package leader for that area. AE new drive to improve the lives of team members have also attended people living with dementia. Wales meetings with the NILVAD, launched its national dementia INTERDEM and EPAD projects in plan in 2011, but this recent which we are involved. development aims to do more still to ensure to ensure the nation is Our friends at Alzheimer’s Disease th dementia-friendly. International (ADI) held their 30 annual conference in Australia, Also on the policy front, the World which we were unfortunately Health Organisation (WHO) unable to attend, but which seems published a new statement on the to have been a big success. The Table of contents public disclosure of clinical trial Chairperson of our European results. Working Group of People Editorial .......................................... 1 (EWGPWD), Helga Rohra, For our own part, we are delighted Alzheimer Europe .......................... 2 however, was in attendance and to announce the creation of our gave a well-received presentation. EU Projects .................................... 3 new Expert Advisory Panel. The aim is to improve the information Alzheimer Europe Networking ..... 4 Other big stories in the media this we provide on scientific month have been around a study EAA ................................................. 5 breakthroughs and to include a linking the immune system and a EU Developments......……………..7 commentary on key nutrient called arginine to developments. We are also Alzheimer's disease and a Members’ News ............................. 6 delighted to say that all abstracts landmark US trial, which raised Policy Watch .................................. 9 for the Alzheimer Europe annual questions around dementia and conference, 25 AEC in Ljubljana in sexual consent. Science Watch ............................. 10 September have been reviewed Lastly, we are delighted that our Dementia in society .................... 12 and we will soon finalise the programme. The reduced “Early readers seem very satisfied with New Publications & Resources . 13 Bird” registration fees are only our newsletter, based on survey AE Calendar 2015 ........................ 14 available until the end of May, so results. We would like to thank don’t forget to register! everyone who responded and we Future Conferences 2015 ........... 15 hope you continue to enjoy We have also been busy with our reading our newsletter! Glasgow Declaration campaign. The declaration itself, along with Jean Georges the sign up system, has this month Executive Director Page 1 of 16 Newsletter: April 2015 We are delighted to say the results say our readers are Alzheimer Europe extremely satisfied with all these areas. 1 April: Alzheimer Europe announces new Expert Your support is much appreciated as are the suggestions Advisory Panel some of you made regarding updating our email and PDF templates. We will certainly take this into consideration Alzheimer Europe (AE) is and may make some slight changes later in the year. pleased to announce the creation of its new Expert We would like to thank you for giving your valuable time to respond and we hope you continue to enjoy reading Advisory Panel (EAP). our newsletter! The EAP was envisaged earlier this year, to improve the information AE provides 19 April: The Irish Times reports on Helen on medical and scientific breakthroughs in its newsletter Rochford Brennan and importance of friendship and magazine and to include a “scientific commentary” on On 19 April, The Irish Times key scientific developments. published a story in its Life The EAP will also be involved in the abstracts process for and Style - People section, AE’s annual conferences and - since AE is more and more about Helen Rochford called upon to take part in scientific projects - will also Brennan, Vice-Chair of provide scientific advice on which research programmes Alzheimer Europe (AE)’s and projects to prioritise. European Working Group of People with Dementia The panel is currently composed of 32 advisors from (EWGPWD) and Chair of the around Europe, appointed by AE for a period of 3 years Alzheimer Society of Ireland’s National Dementia Working (2015-2018). Group. http://alzheimer-europe.org/Alzheimer-Europe/Who-we-are/Expert- Advisory-Panel The story relates the importance of Helen’s friendship with her childhood friend, Aggie Kosikowski. It is written 7 April: Ethics and professional dementia care from the persepctives of the two friends, with particular experts start work on ethical dilemma guidelines emphasis on the support and friendship Ms Kosikowski has brought Helen since she was diagnosed with early onset Alzheimer’s disease (AD) in 2011, at the age of 61. “We are so close, there’s nothing I can’t tell her about: if I’m going through a bad day, I know I can talk to her and when I get off the phone I will be cheered up”, writes Helen. “I’m not surprised that Helen has become a spokesperson for people in Ireland with Alzheimer’s. That’s Helen: she does this because she really wants to help people and put a face on Alzheimer’s at a young age. I am very proud of On 7 April, Alzheimer Europe’s ethics working group met her”, writes Ms Kosikowski. in Luxembourg. This was the first meeting for this year’s ethics project which aims to develop guidelines for http://www.irishtimes.com/life-and-style/people/first-encounters-helen- professional carers of people with dementia. rochford-brennan-and-aggie-kosikowski-1.2177073 th The final report will be a training resource for professional 28 April: 25 Alzheimer Europe conference carers to explore ethical dilemmas they may encounter in abstracts evaluated institutional/residential care or the hospital setting. This Abstracts for the 25th work follows on from last year’s report which focused on Alzheimer Europe Annual ethical dilemmas faced by people with dementia and their Conference – taking place in informal carers. Ljubljana, Slovenia from 2 to Next year’s work will address those encountered by 4 September - have been professional carers of people with dementia living at reviewed during the month home. The group, which is comprised of experts in ethics of April. Evaluations will be sent out shortly and the as well as in the provision of professional care and conference programme will be available soon after. dementia research, will meet again in September in If you wish to register for our conference, the Early Bird Slovenia and the report will be available in December. registration fee is still available until end of May. 14 April: AE thanks you for your positive feedback on our newsletter In the first part of 2015, we ran a survey on our monthly newsletter, to collect feedback on the quality of writing, topic areas, user-friendliness and aesthetics, among others. Page 2 of 16 Newsletter: April 2015 30 April: Glasgow Declaration now available in with dementia and carers in different European countries. several European languages The EWGPWD will also participate in the consultation. During the month of April, Alzheimer’s Europe’s AE’s Project Officer, Ana Diaz represented the campaign, the Glasgow Declaration – calling for the organisation at the meetings. creation of a European Dementia Strategy and national 23-24 April: MIAMI-MD project will create app strategies in every country in Europe – has been translated into several European languages. designed to improve quality of life for people with dementia The declaration and online sign-up form have been available in English on our website since 19 February but now, with the help of our members, we have also made it available in French, Greek, Italian, Portuguese, Slovenian and Spanish. Croatian, Czech and German will be available very soon. You can find the currently available versions on our website: http://alzheimer-europe.org/Policy-in-Practice2/Glasgow-Declaration- 2014/Other-languages Our Finnish member, Muistiliitto has also translated the Glasgow Declaration, which is available for signing via their own website: On 23-24 April, the kick-off meeting for the MIAMI-MD http://muistiliitto.fi/fi/muistiliitto/tietoa-muistiliitosta/ajankohtaista/kohti- project was hosted by project leader Anglia Ruskin eurooppalaista-muistiohjelmaa/ University (ARU) at its Postgraduate Medical Institute in Chelmsford, UK. The four year project will develop an app called Medical Intelligence for Assistive Management Interface - Mild Dementia (MIAMI-MD), designed specifically to help improve the quality of life of people living with mild EU Projects dementia. 9 April: EPAD project team holds meeting on The app will be designed to help people with mild dissemination activities dementia adhere to treatment regimens as well as allowing them to share health-related data with their The members of EPAD’s carers and doctors.
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