“What if…?” by Pia Knudsen, former member of the European Working Group of People with Dementia Six years ago, I was diagnosed with Alzheimer’s dementia. It was a life-changing moment, and I truly believed it would define the rest of my life. But the truth is that my life since then has been far more complex, challenging, and fulfilling than I ever imagined. Every year, I meet with my neurologist for a memory test. Every year, I score at the very top. Despite the diagnosis, the disease has not progressed as everyone feared. Aside from a concussion that slightly worsened my short-term memory, I am almost symptom-free. This has given me something quite extraordinary: time, lived knowledge – and a strong, insightful voice. I have chosen to use that voice as much as I can, for as long as I can. Over the years, I have become a spokesperson for people living with dementia. I speak with politicians, media, and share my story with future nurses, teachers, folk high school students, organisations, and many others – both in Denmark and across the EU – to help them understand dementia not only as a clinical diagnosis but as a human experience. It has become my mission, and it gives my life profound purpose. Recently, during my annual memory test, my neurologist suggested a PET scan to confirm the status of my dementia because she had begun to doubt whether I even had dementia. She said: “I have met many people six years into dementia, but they were all far along in the disease – unlike you. Your course is unusual.” After some reflection and a thorough discussion of the pros and cons, I agreed to the scan. And now, as I wait, many unexpected thoughts, emotions, and reflections arise.
On paper, it sounds simple: take the scan and find out the truth. But for me, it is not that simple. My life now, my identity, and my connections are based on a life with the diagnosis. What if the scan casts doubt on it – or even overturns it? What would that mean to me? Would I lose the standpoint and the important role that has given my life meaning for the past six years? This is not about fear of the truth, but about fear of losing the life I know now – and fear of continuing the life I am living. Many of the friends I had before my diagnosis are no longer in my life. Starting over would be difficult. Strangely, dementia has given me a community, a mission, and a voice that I might never have found otherwise. Yet in my life now, the future is very frightening compared to before, when I lived a more carefree life. I am therefore living in a paradox and am grate-ful for my inner strength. I hope it will help me navigate the rest of my life, whatever form it takes. My life today is not only about loss, but also about contribution. Not only about memory, but very much about purpose and I hope it will continue that way. Demen-tia has not taken my life from me, it has reshaped it. And in that transformation, I have discovered the power of being open, honest, and present. Whatever happens from here, this journey is mine, and I will continue to share it and talk about it, not only for my own sake, but for the millions of people living with dementia in all its forms. Especially for those who cannot or dare not tell.
