“Are you sure you’ve got the right person?” I asked when I was told that the Danish multinational pharmaceutical company, Novo Nordisk A/S, wanted me to be part of their presenting team at the 2025 AD/PD Conference in Vienna. According to the AD/PD website https://adpd.kenes.com/ the Conference is where the brightest minds gather to explore the latest research, clinical trials, and treatments for Alzheimer's and Parkinson's. This surely couldn’t be for me ? But wrong I was. Novo Nordisk were looking for someone to not only present the reality of a carer’s life but, in the absence of any cure or truly significant treatment for Alzheimer’s disease (monoclonal antibody drugs excepted), also demonstrate that someone with dementia can to a certain extent thrive when even their declining capabilities are maximised. In a huge 2500-seater auditorium (ok it wasn’t full !) and in my capacity as Chair of the European Dementia Carers Working Group, I shared the stage with some very eminent experts in the field of dementia.
I thought I might be overawed by the occasion, by the audience and simply by being a fish out of water but my fears were unfounded. It was clear from the Conference agenda that I was the only lived experience, non-medical/research speaker across the five days of the event but the positive response and reaction of those present in the room made me realize why it was relevant that I spoke. Such relevance probably hinged on two key aspects of my messaging – one real and one implied. In real terms I introduced the audience to the lives of dementia carers and in implied terms I hope I reinforced the need for them to continue and accelerate their work until the same progress is made with this baffling neurological disorder as has been seen with cancer treatments over the past number of decades. I congratulate Novo Nordisk for their innovative thinking when they invited me to be in Vienna. They took a risk but hopefully they, like me, perceive it paid off.
