12-14 December 2016: EWGPWD holds its first meeting with the new group - article by AE

Our meeting in Brussels, last December, is described in this article by Alzheimer Europe Article (from December Newsletter).

A nossa reunião em Bruxelas, no último Dezembro, é descrito neste artigo da Alzheimer Europe (Newsletter de Dezembro).

On 12-14 December 2016, the EWGPWD held its first meeting with the newly elected members of the group. The meeting was chaired by Helen Rochford-Brennan with the assistance of Vice Chairs Alv Orheim and Chris Roberts. During the meeting, the group took part in a consultation in the framework of the DEM-2, Joint Action on Dementia project. The focus of the discussion was on the definition of dementia-friendly communities, factors which contribute towards involvement in the community, and positive and negative experiences of being involved in community activities. One of the key issues raised by the EWGPWD was the relevance of education and training for people in the community and for people with dementia themselves (e.g. to know their rights and to speak up for themselves).

The group also provided feedback on research materials which will be used for two projects, namely the Actifcare project and the Smart4MD project. Actifcare is about finding out why people with dementia and carers do not use available services and support. Smart4MD involves developing a computerised platform for people with mild dementia, their carers and healthcare professionals. This was followed by a discussion about the definition of palliative care in the context of the PACE project, which aims to compare the effectiveness of palliative care training in care homes for people with and without dementia at the end of life. The group felt that it was important to emphasise that palliative care is not just about the end of life and was keen contribute towards the PACE user-led forum which Alzheimer Europe will be organising in October during the annual conference in Berlin.

Members of the EWGPWD were very enthusiastic about the projects which Alzheimer Europe is either leading or involved in during the course of 2017, and several volunteered to take an active role in this upcoming work. The next meeting will be in March 2017.