7 minute read
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!
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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).
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 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.
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:
• We want to work against the stereotypes of dementia.
• We want to live self-determined for as long as possible, inclusion and participation are very important.
• It is important to emphasise the strengths of each individual person and not the deficits.
• For some of the word “dementia” is degrading and stigmatising, we want a sensitive language in how people talk to and about us.
• We want to tell people about our lives and share what can make life easier for people with dementia.
• 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.
• We want to get our ideas out there and become political. As a group, we have a better chance of implementing our needs and demands than with individual examples.
• Our commitment should lead to more appreciation of people with dementia and to less stigma.
• We also want to reach people with memory problems who are not organised in self-help groups. How can this be done?
• We should be role models in how we deal with this disease. We want to motivate other people affected to be active again and speak about their concerns.
• For decades, other people have talked about us, now we are speaking! That gives us courage!
Especially in this introductory phase, I am happy to be able to pass on the experience I have gained in the EWGPWD, which is appreciated and perceived as helpful.
Angela Pototschnigg and Johanna Pueringer
Second meeting of the group focuses on autonomy and self-reliance
Our second meeting took place on 30 June. The topic this time was “autonomy and selfreliance”. After a short round of introductions, we discussed the following questions:
“What does it mean for me to be independent? Where is autonomy particularly important to me?” and “What are barriers for me?”
We exchanged views on the supposed ease of use of technical devices in banks, in public transport and when checking in at the airport, problems with key cards in hotels, the pitfalls of coffee machines and drinks dispensers at breakfast buffets. Many vending machines are not self-explanatory, more customer orientation is needed! Banking transactions are often difficult. Sometimes there are also websites of public authorities that are not barrier-free, for example, there are always problems with mobile phone signatures.
In general, the digital world is a barrier. But it’s also about illegible lettering (public transport timetables are often printed far too small), incomprehensible legal texts, misleading pictograms, difficult-to-operate water taps or toilet flushes, poor lighting, missing grab bars and winding corridors. In my opinion, both public service providers and businesses should take better care that the facilities are really for “everyone”.
But also visits to doctors can be a big challenge for us, because often the conversations take place under a lot of time pressure, the doctors are not very trained in communicating with us and sometimes not very empathetic. In this stressful situation, we often forget to ask important questions or do not understand the answers, so we often lose courage.
The descriptions of a member from day care centers for people with dementia left me with the impression that in care institutions more emphasis is placed on the greatest possible security than on supporting us in the things that we can still do well ourselves and that enrich our everyday life. From the point of view of the enormously safety-focused thinking, many things are not possible (e.g. spending time outdoors), one is determined by others through the home rules!
Later, when we discussed what good support means for us to live an independent and selfdetermined life, there were many answers:
• People (even strangers on the street) we can ask and who will help us
• Having someone who makes you feel comfortable and who is devoted to you
• Mental stimulation is important (e.g. preparing for an interview)
• Realising that you can’t control everything feels good sometimes
• User-friendly technical devices
• Children are very important for older people, one should include all age groups
• Feeling at home, being embedded in an understanding environment.
I mentioned how important it is to me to have the possibility of personal assistant for a few hours a week for my everyday life. I would like to be able to choose this person by my own, they should be trained, there should be a good basis of trust, the chemistry between the two of us must be right, and if possible they should not change. Such an offer should have to be created and financially supported.
For the next meeting, which is to take place in autumn, a trialogue is planned, which means that people with dementia, relatives and care persons and a third group, which still has to be selected, will meet. Suggestions for this third group are for example:
• Doctors, nursing staff and health insurance companies
• Politicians
• Representatives of the transport companies.
In any case, I am waiting with great interest for the next meeting of the group!
Looking to the future
When I attend such meetings, I want to know the objectives of these meetings and to make sure that the results do not end up in a drawer but are followed up. Too often in the past I have had the feeling that what we say is heard, but whether it is followed up on remains hidden from me. I have learned from my supporter, Johanna how important it is to ask!
I know that changes take time, but they are absolutely necessary! In dealing with us and in offers for us. I see a need for more individual and tailored support for our needs, even in the area of care. The offers so far are mostly made by people who work in the health care system, but healthy people are not able to understand what life with dementia feels like. That’s why it is important to listen to us and rethink some things. From my point of view, there is still a lot to do!
