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Idalina Aguiar writes about her participation in the recent meeting of the EWGPWD

Friday 09 February 2018

Last December, I was in Brussels together with the whole European Working Group of People with Dementia (EWGPWD), of which I am a member. This time we had the chance to be twice at the European Parliament. The first time we attended the AE Lunch Debate on the topic of timely diagnosis of dementia. The second time, we were in the European Parliament for the 4th European Parliament of Persons with Disabilities and to celebrate the 20th anniversary of the European Disability Forum (EDF). It was a historic moment in the European Parliament!  It was great to be there together with some other 600 people with disabilities from all over Europe. The opportunity given to the working group (EWGPWD) to participate in the European Parliament for people with disabilities was a great achievement.

During the meeting we had the chance to contribute to two European projects PACE (palliative care) and ROADMAP (ethical and social implications of the project) and to discuss about the Joint Action on dementia. In this discussion the topic of timely diagnosis was addressed again. This is a topic which I feel strongly about. For me, the correct and timely diagnosis was very important, because I could understand what was happening to me, without having to be medicated for a supposed "depression".

For me (and my family), I think it is extremely important to have a correct and timely diagnosis, and above all about the type of dementia.

For us, the diagnosis brought us together, changed the way we saw things, and above all the way we look at the future. My family and I think that it is important that the whole family is involved in the diagnosis of dementia.

Accepting, facing and learning to live with dementia are important steps to take.

From the time that the person experiences symptoms, it is imperative that family physicians are encouraged to refer the patient to a relevant specialist and that this consultation be as soon as possible so as to have a diagnosis as correct as possible.


During the meeting it was great to meet a new member of the group from Slovenia, Tomaž, who was accompanied by Alenka.

However, it was also a sad moment for me as it was the last meeting of Alv, one of the Vice-Chairs of the working group, together with his fantastic wife Berit. They are a great couple. I will miss them!

We wish everyone a fantastic 2018, hoping it will be a year full of achievements in this unceasing struggle.

Idalina is supported by her daughter Nélida, to whom we are grateful for her help in translating Idalina's words into English.