DEMENTIA IN SOCIETY
Living with dementia in Austria – Angela Pototschnigg joins new national dementia working group In May 2021, a national working group of people with dementia was founded in Austria. Angela Pototschnigg, member of the European Working Group of People with Dementia tells us more, with support from Johanna Püringer. I am very pleased to announce that in May 2021 a working group of people with dementia was founded in Austria! Gesundheit Österreich GmbH (GÖG) was commissioned by the Ministry of Social Affairs in 2015 to develop and implement the Austrian Dementia Strategy “Living Well with Dementia”. From the very beginning, Alzheimer Austria was keen to involve people affected by dementia in order to implement the dementia strategy in a realistic and needs-oriented way. Now, the Ministry has requested and commissioned the creation of a working group for self-advocacy of people with cognitive changes. The Scottish Working Group serves as a model. Aims of the new group The aim is to find out what we people with cognitive changes need in order to lead their lives as self-determined and inclusive as possible. It is particularly important to me that the results of our work are passed on to decision-makers (e.g. in ministries, state governments or social security).
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Alzheimer Austria was keen to involve people affected by dementia in order to implement the dementia strategy in a realistic and needs-oriented way. Now, the Ministry has requested and commissioned the creation of a working group.” able to give a little insight into their lives. It was also important to agree on group rules and how we want to work. The aim is to find members from all over Austria, so video conferences seem very practical to save travelling. Each person with dementia can involve a supporter who acts exclusively as our voice and represents our interests.
The group will meet four times a year and we all hope that this will soon be possible on a personal level. However, recent developments concerning the corona pandemic speak against this.... So far there have been two virtual meetings, organised and moderated by Brigitte Juraszovich (GÖG). The group meets for the first time The first meeting in May was primarily for getting to know each other, all participants were
34 Dementia in Europe
Angela and Johanna
Participation in the working group is voluntary, unlimited in time and, unlike the European Working Group of People with Dementia (EWGPWD), not necessarily dependent on a diagnosis. Every member is entitled to bring in his or her concerns. Conversation and exchange are very important to us, contradictions are allowed and should be addressed openly. Before each meeting, a topic is agreed upon and the agenda is sent to the members in advance by email. Minutes are taken after each meeting and sent to us. Then the first concerns were already collected: y We want to work against the stereotypes of dementia. y We want to live self-determined for as long as possible, inclusion and participation are very important. y It is important to emphasise the strengths of each individual person and not the deficits. y For some of the word “dementia” is degrading and stigmatising, we want a sensitive language in how people talk to and about us. y We want to tell people about our lives and share what can make life easier for people with dementia. y We want to maintain our scope in life for a long time, that is why we need support from outside in the form of personal assistance. y We want to get our ideas out there and become political. As a group, we have
