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NEWSLETTER February 2014 NEWSLETTER February 2014 the final step before the official Highlights in this issue Editorial launch of the strategy in late 2014. 1 February: Australians push 12 February was a Our member associations are as for dementia on G20 agenda busy month in active as ever: Portugal has Luxembourg and 11 February: ADI releases 17 opened yet another day care it appears that report on nutrition centre and new campaigns are this pace will 18 February: AE holds lunch 2 running in Denmark and France. continue during Romania held a successful annual debate in the European the whole year. Parliament conference and a dementia We are working seminar took place in the 20 February: Malta begins 12 on the 2014 Conference and also Norwegian Parliament. The Dutch consultation on national our annual publications. We have association is funding new dementia strategy also attended various meetings – research projects and Northern 20 February: Piramal’s 15 and have received an astonishing Ireland will soon see its first florbetaben approved by number of proposals to participate dementia-friendly communities. European Commission in new IMI and Horizon 2020 In the science world, IMI has 26 February: European 8 projects. rd named new experts to head its Parliament approves 3 EU Our first event of the year was a Health Plan Scientific Committee and lunch debate hosted by MEP AstraZeneca and Merck both Françoise Grossetête. The debate announced Phase 3 trials of their focused on the current and future respective BACE inhibitors. activities of IMI, presented by Executive Director Michel February also saw the launch of Goldman. This was followed by issue 16 of the Dementia in Europe two meetings that covered magazine: EC President José corporate and public affairs; we Manuel Barroso discusses the EU’s are very grateful for the high role in helping people with turnout and are pleased that so dementia and a remarkable group many of our partners and member of MEPs speak out on how they associations are willing to are making dementia a priority in participate in AE’s 2014 projects. their work. There is also an evaluation of the third French The next lunch debate will take Alzheimer Plan and an insider’s place in the new European view of the forthcoming national Table of contents Parliament in December 2014. In dementia strategy in Portugal. We the meantime, we invite our look back at World Alzheimer’s Editorial ............................................... 1 readers to encourage their Day and our conference in Malta - Alzheimer Europe ................................ 2 candidate MEPs to sign our including the hugely popular European Dementia Pledge. sessions organised by the AE Projects .......................................... 5 In EU news, the Parliament has European Working Group of European Alzheimer’s Alliance ........... 7 approved the new EU Health Plan People with Dementia. We have already booked a larger room for AE Networking 2013 ............................ 7 and a group of MEPs launched a new Written Declaration for the the Group in Glasgow. EU Developments ................................ 7 rights of people with disabilities. We have also opened the call for Members’ News .................................. 9 Meanwhile, the Council of Europe abstracts for the 2014 Conference continues its quest to guarantee Policy Watch...................................... 12 and this will remain open until the the rights and freedoms of older end of April. The Programme Science Watch ................................... 13 people. Committee is in place and looks Dementia in Society .......................... 16 Following the G8 Dementia forward to receiving numerous Summit, the UK government has proposals that will reflect this New Publications & Resources.......... 16 appointed a World Dementia year’s theme of dignity and AE Calendar 2014 .............................. 18 Envoy and also launched a set of autonomy in dementia. dementia initiatives. In Malta, the Future Conferences ........................... 18 Jean Georges text of the national dementia strategy is out for consultation - Executive Director Page 1 of 19 Newsletter: February 2014 Alzheimer Europe 4 February: Jean Georges attends meeting of EU governmental experts on dementia 30 January: Heike von Lützau-Hohlbein presents On 4-5 February, Jean Georges, Executive Director of the views of people with dementia and their Alzheimer Europe, attended a meeting organised by the carers European Commission in Luxembourg which brought together government experts on dementia. The meeting On 30 January, Heike von Lützau-Hohlbein, Chair of was opened by John F. Ryan, the Commission’s Acting Alzheimer Europe, was a speaker at a debate entitled Director for “Public health” who presented the "Impact of Aging on Mental Health and Well-being" in Commission rationale for the development of its Barcelona. Her presentation focused on the view of European initiative on Alzheimer’s disease and other people with dementia and their carers: dementias which was adopted in 2009. Respect for autonomy and dignity: People with dementia The meeting also served to evaluate the various activities must be able to exercise their right to self-determination. undertaken as part of this European initiative and to Advance statements and directives can effectively discuss the implementation report which the Commission preserve the autonomy of people with dementia and also will have to address to the European Parliament and reflect their human dignity. Council later in 2014. Healthcare and decision making: Informed consent must An initial tour de table provided an opportunity for the be obtained for every decision, not once and for all. invited government experts to present the latest People with dementia must be able to appoint a developments in the development, implementation or healthcare proxy in advance of incapacity and must also evaluation of their national dementia strategies. Updates have the right to be informed of diagnosis. were provided by the representatives of the Czech Guardianship and legal capacity: Guardianship measures Republic, Finland, France, Hungary, Latvia, Luxembourg, should be proportionate to needs and legal capacity Malta, Norway, Portugal, Slovakia, Slovenia, Spain, should not be unnecessarily restricted. People with Switzerland and the UK (England), while Greece and Italy dementia should be involved and kept informed when provided written contributions. decisions are being made on their behalf. Additional presentations on European initiatives were Social support: Support for people with dementia and given by Armelle Leperre-Desplanques and Pierre Krolak- carers is often unavailable or inappropriate. There is a lack Salmon (ALCOVE), Jean Georges, Philippe Amouyel (JPND) of trained professional carers and service providers, along and Eibhilin Manning (European Innovation Partnership with an often inflexible approach to service provision. on Active and Healthy Ageing). These are all barriers that prevent people from accessing the services and support they need. 17 February: Alzheimer Europe holds first 2014 Board meeting End-of-life care: The dignity of people with dementia must always be respected. If needed, palliative care should be Nine Board members attended the Alzheimer Europe provided before the situation becomes unmanageable. Board meeting on 17-18 February in Brussels. Apart from Legislation covering access to palliative care should take financial and administrative matters, the agenda also into account the nature of dementia and the progression covered AE’s activities following the G8 Dementia Summit of the disease. and during the upcoming EU elections. Ms von Lützau-Hohlbein's presentation was particularly In addition, the Board members reviewed preparations th well-received as she was able to share many personal for the 24 Alzheimer Europe Conference, which will take insights; she was the main carer for her mother and her place in October 2014 in Glasgow. The conference will be mother-in-law, who both lived with dementia. preceded by an Annual General Meeting that will include elections for a new Board. This debate was co-organised by B.DEBATE, an initiative of Biocat with support from “la Caixa” Foundation, the Parc The next AE Board meeting will take place in July 2014 in Sanitari Sant Joan de Déu and the Sant Joan de Déu Luxembourg. Research Foundation. 18 February: AE holds a lunch debate on IMI - the Innovative Medicines Initiative Michel Goldman, Executive Director of IMI, was the featured speaker at Alzheimer Europe’s lunch debate on 18 February in the European Parliament. Hosted by French MEP Françoise Grossetête, the debate focused on the current and future activities of IMI - the Innovative Medicines Initiative. Ms Grossetête, who is also the Chair of the European Alzheimer’s Alliance (EAA), welcomed the 60 participants and presented a short outline of IMI. The IMI public-private initiative began in 2008 as a five year partnership between the EU and EFPIA, the European Page 2 of 19 Newsletter: February 2014 Federation of Pharmaceutical Industries and Associations. • The European Working Group of People with By 2013, IMI had funded 44 research projects with EUR 2 Dementia (EWGPWD) will continue to advise AE on billion. The partnership is set to continue, as “IMI 2” is dementia-friendly activities. well on its way to final approval of some EUR 3.4 billion in • AE will increase its participation in IMI and Horizon EU funding. This will allow IMI 2 to award funds to 2020 research projects.
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