Lieselotte Klotz, new member of the European Working Group of People with Dementia, gives her insights into the 11th Congress of the German Alzheimer society


The 11th Congress of the German Alzheimer society (Deutsche Alzheimer Gesellschaft - DAlzG) took place in Mülheim an der Ruhr from 29 September to 1 October 2022 under the motto "Dementia: Daring to break new ground?!". The DAlzG is a self-help organisation that works for the well-being of people with dementia and their relatives. See for more information. Within the structure, the Board has two advisory boards, one of which is the Living with Dementia Advisory Board, consisting of six people who themselves have dementia and bring this perspective to the table. The members are proposed by the regional member associations and are appointed by the Board, for two years.
I, Lieselotte Klotz, have been a member of the Living with Dementia Advisory Board, since 2021. The regional and national media appreciate us very much as a competent partner in our own affairs. We are heard at the network conferences of the National Dementia Strategy of Germany. As a participant in various research projects, GeriCoach events, studies, podcasts, TV programmes and for articles (newsletters), we look forward to invitations, interviews, and participation.
The 11th Congress of the DAlzG has been an important topic on the agenda of our advisory board since the end of 2021. In spring 2022, we decided to go to the congress as a team. But not only as guests, no, we wanted to make our own contribution and actively participate!
On 29 September 2022, the day began for all the members of the Living with Dementia Advisory Board, in Berlin, with racing hearts and stage fright. At last, it was time; Congress kick-off in Mülheim an der Ruhr: "Dementia - Daring to break new ground?!" (See photo gallery: From 9:00 a.m. around 600 interested guests streamed into the event hall. Some of us have never been on a public stage and giving a presentation in front of 600 people or taking part in a panel discussion was new territory. Now, we stood together on the stage on the day of the opening event. We shared our experiences of diagnosis and how dementia has changed our lives. Above all, why the work on the Advisory Board is so important to us.
In my presentation "The Challenge of Dementia" I was able to explain how my life has changed since 2017, on behalf of all members of the Advisory Board. Since my diagnosis of Lewy Body Dementia, five years ago, things have changed radically for me, as a formerly successful manager. After a deep vale of tears, I am now open about my illness and volunteer at the DAlzG. My statement at the congress, was: "We can still give a lot - let us be part of it!", which is an expression of my demand for inclusion and participation. Based on my own experiences, it is particularly important to me to draw attention to the stigmatisation in society and also in the professional world.
The other members of the Living with Dementia Advisory Board also shared their experiences. Ingo Zolleck explained: “I work on the advisory board to get involved and to help. I don't want to remain idle any longer." Henrich-Pieter Plump made it clear that "it's about respect for people with dementia. This also includes clarifying grievances in nursing homes.” As much as dementia changes, as Albert Mohr put it: “I am me and I am still here!”, while Bernd Heise, who is also a member of the European Working Group of People with Dementia (EWGPWD) shared his point of view: “Just keep going and try to make the best of the situation.” And Simone Strödicke appealed: “Don't wrap me in cotton wool, please. Challenge me!
What followed next wasn't what we expected. Minutes of applause, people with tears in their eyes, approving faces and gestures. It was overwhelming. We were incredibly proud and happy. We did it, and the DAlzG made it possible for us. In the following two and a half intensive days of exchange and learning from each other, in a group of around 600 participants, we were not - as we often are - in anonymity; We were right in the thick of it, from the beginning to the end of the congress.
Unfortunately, it is not possible for me to mention and appreciate everyone and everything, here. More than 70 lectures were delivered, about support and networking in rural areas, young people with dementia, activation in the in-patient setting, behavioural changes, participation in research projects, and much more. It was the first time that the members of the Advisory Board were so present at a congress in Germany. We were asked, we were heard and were able to have a say, on the same footing as everyone else. They didn't talk about us, they talked to us.
On the last day we sat, a bit exhausted but satisfied, in the front row of the large event hall.  At the end, we heard Prof. Dr. Adelheid Kuhlmey give her lecture, after which we, the members of the Living with Dementia Advisory Board, were invited back onto the stage. Sylvia Kern, Vice-Chairperson of the DAlzG, honoured us: Lieselotte Klotz (Kühlungsborn), Bernd Heise (Munich), Albert Mohr (Trier), Henrich-Pieter Plump (Siegen), Simone Strödicke (Bestensee) and Ingo Zolleck (Syke), with certificates of honour and Mülheim chocolates. She emphasised: “We have often honoured people, here, who do voluntary work for people with dementia and their relatives. Today we honour people who live with dementia themselves and who work with great commitment to ensure that people with dementia are noticed and heard. Their openness in dealing with the disease cannot be taken for granted, they are real ambassadors for dementia!” It was overwhelming! As at the beginning of the congress, we stood together on the stage (pictured, with Lieselotte in the centre and Bernd Heise at the end on the right) and could hardly think or speak for happiness, pride, and joy. We received the "Commitment Award".
During these four days in Mülheim an der Ruhr, our Advisory Board, managed to live the motto "Dementia: Dare to break new ground?!", together. Our conclusion: "We will continue to break new ground together!" We look forward to the 12th Congress of DAlzG, which will take place from 10 to 12 October 2024, in Fürth, with full commitment and joy.