My name is Lilo. I am a woman living with Lewy body dementia – and for a long time, I was also a caregiver for a loved one. These two perspectives shape my life in ways I could never have imagined. They have taught me what it means to rely on support but also how much potential and quality of life are still possible with and despite dementia – if the right conditions are in place. When I was diagnosed with dementia, I had already spent years caring for someone else. I knew the challenges, the uncertainties, the worries. But what I didn’t know was how quickly I, as a person living with dementia, would become invisible. Suddenly, people talked about me instead of with me.
Decisions were made without asking for my input. Those around me were unsure whether they should still include me. I was no longer seen as the person I had always been – but rather as someone who "no longer functions properly." Yet, I can still speak, think, feel, and make decisions. I may need more time or assistance to express my thoughts, but I am still here, still present. And this is what many forget: people with dementia are not just their diagnosis. We are individuals with lives, dreams, and wishes – and above all, we have a voice. I have experienced what it means to be responsible for a loved one with dementia. I know how difficult it is to find the balance between protection and self-determination. But I have also experienced how disempowering it can be when well-intentioned decisions are made over a person's head. What I wish for – for myself, for others with dementia, and for future generations – is a change in how society approaches this condition.
A shift toward a world that does not push us out of life but instead supports us in remaining active. A world that provides us with tools to shape our own lives rather than making decisions for us. For me, technology is a great help. Without digital support, I wouldn’t be able to do many things – including writing this article. Artificial intelligence helps me structure my thoughts, correct mistakes, and make my voice heard. Yet, I often encounter prejudice: "That’s not really your own writing!" or "That’s not authentic!" – but what makes it any less real? Is my voice less valuable just because I use assistive tools? I believe the opposite is true. Technology enables me to stay engaged, share my experiences, and remain politically active. It gives me back a sense of self-determination and agency.
I hope that people with dementia will be included in all areas of society – not just as a theoretical target group but as real conversation partners. In research, politics, healthcare, and caregiving, we should not only be the topic of discussion but active participants in shaping the conversation. Providing quality dementia care is a collective responsibility. Doctors, nurses, researchers, policymakers, and society as a whole must work together – but most importantly, people with dementia themselves must be heard. We should not just be objects of care or research but active contributors. I am not only asking for more understanding; I am demanding real participation. Because we are still here. We still have much to contribute. And we deserve to be heard.
Pictured: Lieselotte Klotz (left) was a carer for her late mother, Liesel Krämer (right)
