NEWSLETTER May 2016 letter to the Dutch Health Minister Highlights in this issue and POLITICO, prior to the Dutch EU Presidency conference, calling 9 May: Dutch Dementia 10 for a collaborative approach from Friends launched at EU Editorial the European Commission, the Presidency conference Welcome! European Commission Group of 10 May: EPAD project recruits 3 Well, it has Government Experts in Dementia first study participant certainly been and all stakeholders to define a 25 May: Slovenia has a 18 European Alzheimer Strategy. National Dementia Strategy another busy month! First off, 23 May: Health ministers There was more good news at the 18 we’ve been call for greater WHO end of the month, with the working through collaboration on dementia announcement on 30 May that a the abstract selection process for 30 May: AE finalises abstract Draft Decision on dementia, backed our 26th annual conference. I selection for 26AEC 3 by 38 Member States and urging would like to thank everyone who the WHO to take action on submitted abstracts and am dementia was adopted at the 139th delighted to report that the Executive Board meeting of the Scientific Committee has approved WHO. Last but not least on the 143 oral presentations and an policy front, I am delighted to be additional 167 poster able to say “čestitke” presentations, from the 357 (congratulations) to our friends at abstracts submitted. If you have Alzheimer Slovenia for all their hard not yet been notified of the status work on the National Dementia of your abstract, you will be shortly. Strategy, which has paid off with Besides our own conference, we the announcement that it has been have been kept busy with a number signed by the Minister of Health of other international conferences Milojka Kolar Celarc and was Table of contents this month, including the Dutch EU presented at a press conference on 25 May. Editorial ................................................... 1 Presidency conference on dementia, which I was delighted to Alzheimer Europe................................... 2 All of this is excellent news for be a part of. During his opening dementia policy in Europe and has EU projects ............................................. 3 speech, Deputy Minister for Health, our wholehearted support! Alzheimer Europe networking 2016...... 5 Welfare and Sport in the Netherlands, Martin van Rijn called May has also been a good month European Alzheimer’s Alliance ............. 6 for a more dementia-friendly for a number of the European EU developments ................................... 7 society and officially launched the projects in which we are involved, Members’ news .................................... 12 Netherlands’ own Dementia most particularly the European Prevention of Alzheimer’s Policy watch ......................................... 16 Friends programme. I was also delighted to join the 69th World Dementia (EPAD) initiative, which Science watch ...................................... 18 Health Assembly of the WHO in was delighted to announce the Science – behind the headlines .......... 22 Geneva, which saw a number of recruitment of its first research participant on 10 May. This news Living with dementia............................ 23 Ministers of Health giving their support for the development of a was enthusiastically welcomed at Dementia in society ............................. 23 resolution on dementia at the next the EPAD General Assembly and Education .............................................. 24 World Health Assembly. Colloquium in Barcelona later in the month. Job opportunities ................................. 24 Our European Alzheimer’s Alliance AE Calendar .......................................... 25 (EAA) members have also been I wish you all a successful June and some better weather than Conferences 2016 ................................ 25 active, with 32 of them signing their support to the European Luxembourg has seen in recent Parliament Written Declaration days! 0027/2016 on the prioritisation of a European Dementia Strategy. Six Jean Georges members of the EAA, along with Executive Director two other MEPs, also sent an open Page 1 of 26 Newsletter: May 2016 25 May: AE presents its work on national care Alzheimer Europe pathways at ICIC 2016 4 May: Alzheimer Europe issues call for EWGPWD The 16th International Conference candidates on Integrated Care (ICIC 2016) took place in Barcelona on 23 - 25 On 4 May Alzheimer Europe May 2016. The conference was (AE) issued a call to all its organised by the International member organisations to Foundation of Integrated Care nominate new members for its European Working Group (IFIC) and was co-hosted by the Catalan Government’s of People with Dementia (EWGPWD). PIAISS, Hospital Clinic Barcelona (HCB), Forum ITESSS, and The EWGPWD, which came into being in October 2012, is the TIC Salut Foundation. composed of up to fifteen people living with dementia The event brought together researchers, clinicians, nominated by AE member organisations. Nominations managers and patient representatives from around the happen once every two years, and members of the group world who are engaged in the design and delivery of are confirmed for a two-year term at a meeting prior to integrated health and social care. More than 1,000 AE’s AGM, this year to be held on 31 October in delegates participated in the event and some additional Copenhagen. 200 people followed it on live stream. The group works to ensure that AE’s activities, projects and The conference addressed the topics of integration across meetings duly reflect the priorities and views of people the care continuum, person-centred and integrated care, with dementia. It operates independently, with its own mental health and the use of mobile and digital health and Board and agenda of activities. The Chairperson of the care solutions. In addition, the final results of some EWGPWD also sits on the Board of AE. relevant EU projects, such as the FP-7 European project The call for nominations will close on 31 July. INTEGRATE and EMPATHiE (Empowering patients in the management of chronic diseases) were presented during http://alzheimer-europe.org/Alzheimer-Europe/Who-we-are/European- the conference. Working-Group-of-People-with-Dementia On 25 May, AE Project Officer Ana Diaz presented 13 May: AE supports Eurodiaconia’s call for EU Alzheimer Europe’s work on national care pathways for action on long-term care people with dementia living at home and participated in Alzheimer Europe the kick-off meeting of the Special Interest Group on Values (AE) was recently and Principles of integrated care. approached by a The 2017 Conference on Integrated Care (ICIC 2017) will coalition of organisations involved in social care and take place in Dublin, Ireland on 8-10 May 2017. integrated care issues - Eurodiaconia - to support a call for EU action on long-term care with special focus on 27 May: AE will continue as a member of the PCWP integrated care. for another three years The promotion of quality, accessible, affordable and On 27 May, adequate long-term care for all EU citizens calls for a joint Alzheimer- Europe commitment from all actors advocating this goal. (AE) was accepted as a continuing member The coalition gathered to discuss the best ways to achieve of the European positive policy change in this area, with special emphasis Medicines Agency's on the progress towards more integrated care. At a recent PCWP - the Working meeting the coalition presented the joint call for EU action Party with Patients' on long-term care with special focus on integrated care to and Consumers' Organisations - for the period 2016-2019. Fritz von Nordheim and Gosia Kozlowska, from the European Commission (EC)’s DG EMPL unit for The PCWP provides recommendations to the European “Modernisation of social protection systems”, who then Medicines Agency and its human scientific committees on discussed the state of play from the EC’s perspective and all matters of interest to patients in relation to medicinal the way ahead on long term care and integrated care products. The working party is composed of policies, as well as opportunities for effective partnerships representatives from patients' and consumers' between the EC and civil society on these issues. organisations that fulfil the eligibility criteria, as well as the Agency's human scientific committees and the Agency Also present at the meeting was Ciara O’Dwyer who spoke secretariat. about the European Network of National Human Rights Institutions (ENNRHI)’s project on “The Human Rights of AE first joined the PCWP in July 2013. Older Persons and Long-term Care”, which looks at a human rights-based approach to long-term care. http://goo.gl/mqOAPj http://www.ennhri.org/A-human-rights-based-approach-to-long-term-care Page 2 of 26 Newsletter: May 2016 30 May: Alzheimer Europe finalises abstract Julie Duffus, the first participant in the EPAD study, said: selection for 26th annual conference “My mum and dad both had Alzheimer’s disease so I’ve seen first-hand the devastating effects it has on patients’ Alzheimer Europe would like to lives and those around them. Both my parents were thank everyone who submitted involved in research themselves so it is important for me to abstracts for its 26th annual play my part too. I hope that my contribution will in some conference (26AEC) in way help scientists to find better ways of diagnosing the Copenhagen from 31 October to 2 disease and potentially, one day, to prevent it.” November 2016. The Scientific Committee