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EWGPWD member Angela Pototschnigg is interviewed by Austria’s biggest newspaper

Saturday 17 April 2021

An interview with Angela Pototschnigg, a member of the European Working Group of People with Dementia (EWGPWD), appeared on 17 April 2021, in the Health supplement of the KRONE - Austria's highest-circulation daily newspaper. Many thanks to Angela’s supporter Johanna Pueringer for her help in translating the interview to English, to share with Alzheimer Europe’s readers: "MANY THINGS ARE STILL POSSIBLE IN MY LIFE, but with support I can do even more!" A person affected by dementia talks about her life and her volunteer work for Alzheimer Austria.

Angela POTOTSCHNIGG in an interview with Ingrid Korosec, Member of the Federal Parliament of Vienna and President of the Austrian Seniors' Association (Österreichischer Seniorenbund):

Two years ago, you were diagnosed with dementia. What symptoms did you have at the beginning?

My memory and concentration problems started in 2011, I was diagnosed with burnout and soon after I received my first dementia medication. But it was still a long journey to a valid diagnosis - I didn't get it until 2019.

You did not react to your illness by withdrawing, but you are active in Alzheimer Austria. Why and what exactly do you do?

Alzheimer Austria supported me through counselling and many talks. They didn’t see only my limitations but also those things I was really good at, so that I was able to build on that and find new strategies for my life. Today, I offer peer counselling at Alzheimer Austria, for people who are going through similar experiences to me. In 2018, I was nominated by Alzheimer Austria to join Alzheimer Europe’s European Working Group of People with Dementia (EWGPWD).

How do you organise your everyday life?

I try very hard to keep order and I write a lot of things down. At the end of each day, I meticulously prepare for the next one and my daughters are supportive when it comes to big decisions. In my activities as a self-advocate, I get assistance from Alzheimer Austria.

Dementia is a very upsetting diagnosis. What advice would you give to relatives?

Of course, the diagnosis can come as a shock and can be frightening! I decided to talk about my limitations, but also about what else is still possible in my life - and these are not the sad images that society is often shown. For me, this disease is another way of experiencing old age. My advice to relatives is: inform yourself about the disease, attend self-help groups, and please be respectful and patient with us!

What particularly bothers you about the public discussion around dementia? The people with dementia themselves rarely seem to get a word in, and most of the time the discussion is only about them.

Yes, that's how it is! So-called ‘experts’ often decide on services for us, or decide what would be best for us, but only we know how it feels to live with this disease and what our real worries and needs are. In my mind, the word dementia is stigmatising in itself, and I know that it scares many people - who wants to be called "out of one’s mind" or “away from one’s spirit”?

Dementia is a big topic, in the context of the Taskforce on Care, particularly because populations are ageing. Do you have any specific requests and wishes to express to the politicians involved?

We need support immediately after diagnosis - The type of support where people actively approach us with information and assistance, and accompany us for a while! Post-diagnostic support exists in Scotland, for example. Personal assistance is also an important issue, so that we can be active and involved in society for longer.

 See the PDF, herewith, for the original KRONE article.