Pia Knudsen, member of the European Working Group of People with Dementia, tells us about life since her diagnosis with Alzheimer's disease


“I try to embrace my life with dementia every single day and I practice making it as meaningful and fulfilling as possible. Mostly this is possible - especially if part of my day is spent with good people, physical activities, or if I feel that I have made a difference for other people with dementia. Making a difference for myself or people in a similar situation gives me a sense of purpose amid meaninglessness. It brings me happiness and makes me feel valuable that I, despite my dementia, still can contribute to society. Other days are hard. Days that suddenly pass from morning coffee to evening tea without talking to anyone, or days spent on the couch watching pointless TV-series on Netflix. Those days are hard to get through. Evenings grow lonely and sometimes the only social interaction I have is through apps like Wordfeud, where I play against strangers to keep my brain in shape. The feeling of missing something affects my life every day…. I am often happy, and I know that I make a difference for many people with dementia through the many causes in which I am involved. But I truly miss being “a teacher” instead of “someone with dementia”.…

I miss not having to worry so much about my future, like before I had dementia. I miss being able to plan and book a trip to Australia in 2024 with my good friend. I dream myself back to a life where my greatest sorrow was when my students left school and despite my sorrow over our farewell, I was also filled with joy knowing that I would always be a part of their lives - for the rest of their lives. For some of them, because we have maintained contact, and with others in the form of good memories. Today, the sorrow has taken on a completely different character. With my disease I carry a daily grief of losing myself and I am terribly afraid of forgetting something or someone important to me. Oh well, I seem to be going down a rabbit hole. Now, my strategy is to get back in the saddle. The sun is shining today, it is spring, and when the spring sun shines, I am happy. Every day I will put an effort into trying to remember and cherish this beautiful life that I have lived and still am living and to thank all the wonderful people who have enriched and continue to enrich my life.”