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October 2012: first meeting of EWGPWD

News & Activities

European Working Group of People with Dementia meets for first time in Vienna

The European Working Group of People With Dementia (EWGPWD) held its first official meeting during 3-4 October in Vienna.

The group of 11 people with dementia and their carers was welcomed by Jean Georges, Executive Director of Alzheimer Europe. He outlined that the purpose of the group was to advise the organisation and to ensure the activities, projects and meetings of Alzheimer Europe duly reflect the priorities and views of people with dementia.

After a tour de table which allowed all participants to present themselves, the group proceeded to hold elections for the EWGPWD Board and elected the following people:

Chairperson: Helga Rohra (Germany)

Vice Chairperson: Jean-Pierre Frognet (Belgium)

Vice Chairperson: Jan Frederik Meijer (Netherlands)

Vice Chairperson: Agnes Houston (United Kingdom - Alzheimer Scotland)

The other members of the group are: Nina Balackova (Czech Republic), Raoul Grönqvist (Finland), Ingegärd Pousard (Sweden), Dermod Slevin (Ireland), Rozel Snell (Jersey), Bojan Španja (Slovenia) and Daphne Wallace Daphne (United Kingdom - Alzheimer’s Society).

This concluded the activities of the Group on 3 October.

On 4 October, the new Chair opened the meeting and proposed that the aim of the meeting would be to collect ideas that were important for the group. These ideas would be further discussed at the next EWGPWD meeting and then presented to the Alzheimer Europe Board. Ms Rohra stated that it was important to demonstrate that the Group is capable of thinking in a structured manner, saying what it needs and explaining how it can improve the lives of their fellow people with dementia. The following topics emerged as important issues:

- Early diagnosis

- Delays in obtaining a diagnosis

- Loss and gain of talents and skills

- The need for a chain of care and treatment

- Coping

- Understanding each person with dementia

- Raising awareness

- Stereotypes and “the new dementia”

- The need for understanding from others

These issues will be further explored and the findings will be presented to the Alzheimer Europe Board in December 2012. As Chairperson of the EWGPWD, Ms Rohra is also a member of the AE Board with full voting rights.

The group also discussed how members can become involved in Alzheimer Europe activities - one of the main objectives of this working group. As a first step, the group will actively participate in AE’s next lunch debate. This will be entitled “Living with dementia” and will take place in the European Parliament in December 2012. Several members of the group will speak during the debate and they will also meet the MEPs from their home countries.


EWGPWD Vienna October 2012


Last Updated: Friday 16 November 2012