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News & Activities

European Working Group of People with Dementia

This page lists the activities of the European Working Group of People with Dementia. The table below shows a summary. For more details, click items on the list in the right margin.


  • June: Raoul Grönqvist leaves the EWGPWD
  • May: Alzheimer Europe issues call for EWGPWD candidates
  • April: In Memoriam Jean-Pierre Frognet, 1951 - 2016
  • March: EWGPWD goes ahead with meeting amidst heightened security measures in Brussels
  • March: Hilary Doxford encourages people living with dementia to join research.
  • February: Helga Rohra gives a keynote speech at the Romanian Alzheimer Conference.
  • February: Helen Rochford Brennan speaks to The about her dementia.


  • December: Bojan Španja leaves the EWGPWD.
  • December: Agnes Houston is awarded an MBE at Buckingham Palace.
  • November: Helga Rohra is elected as Vice-Chair of Dementia Alliance International.
  • October: The EWGPWD waved goodbye to Rozel Snell and welcomed Karin Gustafsson from Sweden as a new member.
  • September: the EWGPWD members met to prepare for Alzheimer Europe’s annual conference. They practiced their speeches and presentations, organised their presence on their stand and decided how best to welcome other people with dementia to the conference.
  • July: Helga Rohra was appointed “Commitment Ambassador” for people with dementia in Germany. She "shall work for a new image of dementia in society and for people who want to lead an active and independent life under the conditions of dementia.”
  • June: Nina Balackova gave a speech about her experience of living with dementia, called “Our voices have to be heard”, at the Palliare conference in Prague.
  • May: The EWGPWD met in Brussels on 14-16 May. They welcomed Alv Orheim, a new member from Norway and discussed the activities of the group during 2015.
  • January: Hilary Doxford was appointed to the World Dementia Council. Ms Doxford, who was diagnosed with early onset Alzheimer’s disease in 2012, is the first council member living with dementia.


  • December: Helga Rohra earned the German “commitment award” for her efforts in national and international campaigning in the field of dementia.
  • December: Dianne Gove and Helga Rohra co-authored an essay on dementia stigma that was published in a compendium called “New perspectives and approaches to understanding dementia and stigma”.
  • October: The group met in Glasgow before the AE Conference. At this meeting they welcomed new members Hilary Doxford and Helen Rochford Brennan, who were also elected as Vice-Chairpersons for the 2014-2016 term along with Agnes Houston. Helga was re-elected as Chairperson.
  • October: Raoul Grönqvist and his wife Milja Ahola sent a report to the group about Finland’s “Memory Activists” - the Finnish working group of people with dementia and their caregivers.
  • June: Helga Rohra appeared in a video from the Dementia Legacy Event in London. She stated that dementia can only be managed if private investors, researchers, people affected and carers work together to identify and to support scientists who can find a cure for the disease.
  • June: EWGPWD’s Daphne Wallace reported on dementia activities in the UK. While the headlines were full of the G8 Summit Meeting and the appointment of a World Dementia Envoy, Daphne also cited the marked difference in rates of diagnosis by GPs between France and the UK. She also mentioned the growing success of the Dementia Friends campaign.
  • June: Alzheimer Europe issued a call for nomination of new EWGPWD members. The first term of the group will expire in October 2014.
  • May: The EWGPWD held a meeting in Luxembourg. The group agreed on their activites during the Alzheimer Europe conference in Glasgow and discussed the coverage of the conference by their national Alzheimer associations.
  • May: EWGPWD Chair Helga Rohra was a panellist at an OECD forum in Paris. She commented that "dementia is like a sponge, it takes out everything you learnt but please focus on what's left".
  • April: EWGPWD Vice Chair Nina Balackova appeared in a US Against Alzheimer’s video that featured people with early onset Alzheimer’s disease from around the world.
  • March: The EWGPWD Executive held a meeting in Luxembourg. Amongst other topics, they discussed feedback from the 2013 AE Conference in Malta and also presentation topics for the 2014 Glasgow Conference.


  • October: the EWGPWD met in Malta to prepare for Alzheimer Europe’s annual conference. The members finalised their presentations for the "Nothing about us without us" symposium and the third plenary session. They also organised the logistics of their dedicated stand.
  • July: the EWGPWD Executive met in Brussels to prepare the group's participation in Alzheimer Europe's 23rd Annual Conference in October 2013. The Executive consists of Helga Rohra, Nina Baláčková, Jean-Pierre Frognet and Agnes Houston.
  • April: the EWGPWD held its third meeting on 12 April in Brussels. The group elected Nina Balackova as Vice Chairperson and prepared activities for the Alzheimer Europe Annual Conference in October.
  • January: Jan Frederik Meijer resigned from the EWGPWD after a second diagnosis concluded that he is not suffering from dementia.


  • December: the EWGPWD held its second meeting on 3 December in Brussels. The members planned various communications activities and appointed representatives to the Alzheimer Europe working groups on ethics and incontinence.
  • October: the EWGPWD held its first official meeting during 3-4 October 2012 in Vienna, Austria. Participants elected a Board, discussed the organisation of the Group and prepared an agenda of activities.
  • April: Alzheimer Europe organised a meeting on 15-17 April 2012 to discuss plans for a “European Working Group of People with Dementia”. Delegates laid the foundations of the EWGPWD and planned its first official meeting.



Last Updated: Tuesday 20 September 2016