“I had to journey on a path I did not want” - This is how I opened a digital experience exchange organised by the German Alzheimer Group in Rostock earlier this year. Fifteen people who work in caregiving met at this online event, to talk about their years of experience in the field. I was invited to join, to speak about my personal experiences and my point of view as a person diagnosed with early onset dementia. I am 62 years old, a single mother of three children, and received my diagnosis of dementia five years ago. Back then, in 2017, I was the CEO of an IT company and responsible for upwards of EUR 3 million in profits and in charge of 200 people at the company. But then, more and more mistakes started to creep in - the diagnosis “dementia” that followed forcefully plucked me from my successful career.
The termination of my contract came quickly after: “An allegedly neurologically impaired CEO is not tolerable for the organisation.” I was out! Within weeks, I was deemed ineligible and was expelled. I was no longer a person in tune with the company’s goals or with its philosophy of what was deemed as “functioning”. I, who had always been right at the centre of things, went through the experience of people from my professional and personal life, either deliberately or out of uncertainty, withdrawing from me, as soon as they heard the word “dementia”. Of course, I was angry and disappointed. With increasing frequency, I was overlooked and not heard when at the doctor’s or a government office, or even at support institutions. My conclusion is this: There is hardly any other illness, where people are talked about as much but almost never talked to directly. Our society does not yet hold acceptance for people with dementia. Especially, when it comes to the problems and situations faced by early stage patients, society is still largely under-equipped. There is too little room, in Germany, that would allow early stage dementia patients to share their experiences.
Public and private institutions, unions, organisations, and charitable societies, as well as caregivers and doctors are still only at the beginning in their journey to a better approach to, and better support for, people with early-onset dementia. We are not yet old, we are just at the beginning of our dementia. Our shared online event did strengthen the group and myself. Encouraging each other is helpful. Experiences were exchanged and conveyed about topics such as: How to approach people who have an early stage dementia; How to bridge the gap between autonomy and caregiving; and How do we cope with saying goodbye to members of the group when the condition progresses? It is so important to still have a voice! And to be heard, because this illness will otherwise inevitably lead to an unintended and unwanted isolation of the affected person. The image of dementia in society must change - we all can and must contribute to that. I cannot and do not want to wait. I am still here, I still want to be involved, I want to be an active part of our society and I still have much to give! Now!