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Tomaž Gržinič, member of the EWGPWD is interviewed on national TV in Slovenia

Saturday 12 May 2018

I was diagnosed with dementia two years ago.  When I received the diagnosis my life changed, however, I did not give up any sports and I continue enjoying my many hobbies. My life is still fullfilled and I embrace my life with optimism. I joined the Slovenian Working Group for People with Dementia in 2017 and I was very proud to be elected President of the group. In Autumn 2017, I was nominated by Spominčica  (Alzheimer Slovenia) to join the EWGPWD. In Slovenia, I have been very active at public debates, sharing experiences about living with dementia in the media and at gatherings of the Slovenian working group.

In February 2018, I  participated in an interview, with a famous Slovenian neurologist, Prof. Dr Zvezdan Pirtošek, which was broadcasted on national TV. In the interview I was able to explain and provide examples of  how dementia affects the real life events. I explained my views on decision making and planning the future before dementia is at a more severe stage and how this helps to keep the person's dignity, integrity, hope, self-esteem and autonomy. This is why timely diagnosis is so important, so you still have time to adapt your activities, treatment, accommodation and express your will, about religion and spiritual issues. When the disease progresses, you need more time to finish some tasks, but also encouragement and step by step process, support from caregivers or supporters. Raising awareness about dementia is important, but you have to accept, that dementia will accompany you for the rest of your life. You learn every day. The saddest thing is, you can not predict the future. But at early stage of disease, when you are still able to make reasonable decisions, you should tell your inner wishes to your closest ones, as they may need to decide for you later on . I have fears about the progression of the disease. I am afraid of pain and that perhaps I won't be able to control it. Another fear is that one day I may  not recognise myself anymore in the mirror or recognise family members and friends or may  behave in an inappropriate way in public and not be aware of it. During the interview I also shared  my opinion about medical treatments. I would not like for myself any invasive treatments and heavy medical tubes, injections or drugs at the end of my life . I would rather choose quality of life than prolonging my life just because other people  want me to stay alive. I would like to spend my final breath in a quiet room, with family, holding my hands and saying lovely words to me. I would prefer to die at home, if possible. The videoclip of my interview with Prof. Dr Zvezdan Pirtošek was recorded by the Slovenian National Televison. It will be available in 2019. I will keep you posted once it is available! Tomaž is supported by Alenka Virant, member of staff of Alzheimer Slovenia – Spominica -, to whom we are grateful for her help in translating Tomaž 's words to English.