On the morning of 8 October, prior to the 34th Alzheimer Europe Conference (34AEC) in Geneva, the European Working Group of People with Dementia (EWGPWD) and European Dementia Carers Working Group (EDCWG) held their first face-to-face meetings during the current term of office. At the meeting of the EWGPWD, members addressed the topic of independent living and housing which is the focus of the 2024 Alzheimer Europe Yearbook. This was followed by a networking event which was attended by conference delegates with dementia and their supporters. Members of the EDCWG were informed about a brain health campaign for young adults (people in their early twenties) which has been developed in the context of two European projects (ADIS and Pattern-Cog) and discussed how this work, which was initially developed in the Spanish context, could be implemented in other countries.
Members also addressed the topic of independent living and housing from the perspective of informal carers. In the afternoon, the conference was officially opened and the first plenary session was a joint session organised by the members of both working groups, titled "Two voices, one story – navigating dementia together" and focusing on the interrelated topics of living with dementia, relationships and independence. The different presentations provided a balanced overview of what life with dementia can be like, taking into account the very different experiences that people with dementia and carers across Europe may have. This plenary session was chaired by Jean Georges, the Executive Director of Alzheimer Europe. People who look at dementia from the outside may hold the view that living life to the full ends on diagnosis but the reality for many people is far removed from this perception. This plenary session set out to illustrate that many who live with dementia, and their carers, have a fierce and positive determination to enjoy themselves and play an active role in their communities. They seek not pity but support. They want empathy rather than sympathy. They require kindness and encouragement not dismissal or rejection.
Paddy Crosbie, EDCWG member from Ireland, for example, remembered hearing the words ‘It’s young onset Alzheimer's’ and how he did not know how he’d cope, but he was also told to keep his husband doing what he could for as long as he could and this carried him through.
Trevor Salomon, a fellow carer from the UK and Chairperson of the EDCWG, suggested, “It’s easy to see what people living with dementia can no longer do” and encouraged people with dementia and carers/supporters to focus on what is possible, and encourage them to do it. He provided an example of an employer who went to considerable lengths to adapt to the Trevor’s wife’s needs.
Liv Thorsen, EDCWG member from Norway who cares for her husband described their philosophy to living with dementia, emphasising the power of thought and how the way that people think about Alzheimer’s disease affects their daily lives and to some extent their experience of dementia.
Shelagh Robinson, a person with dementia from the UK and member of the EWGPWD, took a close look at relationships that people with dementia have with others and the nature and quality of those relationships (i.e. whether they are abling or disabling, respectful, smothering or inclusive). She emphasised the importance of being kind to oneself and others, and in the context of spirituality, ended on a positive note with a quote from Julian of Norwich, “All shall be well, and all shall be well, and all manner of things shall be well”.
Lieselotte (Lilo) Klotz, who is from Germany and is the Vice-Chairperson of the EWGPWD, shared her first thoughts on hearing her diagnosis, namely, “This can’t be, not me”, explaining that it was not part of her life plan and how she had not been able to accept for the first few years the many changes and losses she was experiencing. She ended, however, with the statement, “an ordinary day is the greatest blessing”.
At the end of the session, there was a short video presentation entitled “I may have Alzheimer’s disease, but it doesn’t have me”, which was recently developed by the European Federation of Pharmaceutical Industries and Associations (EFPIA) and Alzheimer Europe. In this video, Chris Roberts, member and former Chairperson of the EWGPWD, talks about the importance of hope and of the timely detection of Alzheimer’s disease, adding that he is not defined by the disease. Watch the video, here: https://youtu.be/1cW92mf5J0o
Each of the five speakers with lived experience at this first plenary session received rapturous applause from the audience, as did the video. Alzheimer Europe congratulates them all on their fantastic presentations and congratulates both working groups for their vital work and for organising this plenary session. Alzheimer Europe would also like to thank all members of the EWGPWD and the EDCWG for their very active contributions throughout the whole of 34AEC, including presenting, chairing and participating in other conference sessions, as well as disseminating information about the working groups.
