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Helga Rohra writes about her participation in the recentINDUCT Winter School

Tuesday 20 February 2018

Since the EWGPWD exists under the umbrella of Alzheimer Europe (AE), a strong involvement of people with dementia in projects is habitual. After the INDUCT project’s schools in Maastricht and Salamanca, this time Witten in Germany was the location. Participating PhD students were eager to learn more about a very challenging topic: “How to access to the experience of people with dementia”. Over 5 days in January 2018, professors from Sweden and Germany among others gave valuable insights for the young researchers. The highlight for many participants, I am delighted to say, was the lived and live experience that I, Helga Rohra, member of the EWGPWD, was able to share. Together with Prof. Louise Nygård from Karolinska Institutet, Sweden a lively discussion emerged between the PhD students and me. People with dementia were able to show, in an eloquent manner, that dementia is more than a mere diagnosis.

The way people with dementia need to be approached as participants by researchers of in-depth qualitative studies can be summarised thus:

  • See the person - the ME not only my DeMEntia
  • Include us from the very beginning in your projects
  • See us as co- partners !

I myself as a representative of our EWGPWD felt valued to contribute to a topic that is of major importance.

The vivid discussions that were continued in the social communities online definitely showed that AE is a valuable partner and unique globally in including the expertise of people with dementia from its European Working Group.

Helga is a former Chair and current member of the European Working Group of People with Dementia (EWGPWD).