Living with Early-Onset Dementia

Kate Swaffer, author of: “What the Hell Happened to My Brain?” was diagnosed with early-onset dementia at the age of 49. She speaks with Alzheimers.net about her diagnosis today and shares an excerpt from her book with us.

Learn more about the author and her experience living with dementia.

Kate Swaffer: Living with Early-Onset Dementia

Kate Swaffer was 49 years old when she was diagnosed with a rare form of early-onset dementia. In “What the Hell Happened to My Brain?“ she explores issues relating to that experience, including:

Giving up employment and driving
Breaking the news to family
Having a reduced social circle
Confronting the stigma surrounding dementia
Inadequacies in care and support.

Swaffer also shares her experiences in dementia activism and advocacy, highlighting the important role of social media in combatting isolation post-diagnosis.

Kate’s empowering words challenge preconceptions of dementia, highlight the issues that impact individuals living with a dementia diagnosis, and act as a source of comfort for them and their loved ones.

Behind Early-Onset Dementia

The reason for writing this book was that for most of the time since being diagnosed with dementia, it has been people without dementia telling me how I feel, what is best for me, and how I should respond to having dementia.

It is also people without dementia who have decided on the language of dementia; what they believe is and isn’t respectful and empowering. They have been wrong as, for example, it is no longer acceptable or respectful to publicly label people with dementia as sufferers or victims. Yes, we suffer some of the time, from things including dementia, but many of us are not living as ‘sufferers’ and find this and other terms like it offensive.

The time is now that the global community of people living with dementia has spoken up, in the same way the disability community did over 40 years ago.

This book is about giving my voice and the voice of others with dementia a valid platform, beyond my blog that has been written almost daily since my diagnosis. I felt it was imperative ‘our’ story was told, and although there are a few people like Richard Taylor living with dementia who have written before me, the personal voice of dementia is predominantly that of the family supporter/carer. It is not our authentic voice. After all, whose story is it? If is a carers story, then it should be about their experience of caring for someone with dementia not ours; no one has the real authority to speak on our behalf. The only people ‘living with dementia’ are those of us diagnosed with it, and as such, it is imperative we tell our stories, no doubt part of the reason Richard Taylor called his book “Alzheimer’s from the Inside Out.”

I can live well with dementia, but so far, very few people are teaching us how and I am hoping this book will teach more people not only that it is possible, but how, and that it will give hope instead of the fear and hopelessness most people experience after a diagnosis of dementia.

We live until we die, and for the most part, I try to live as well as possible, to enjoy the days I am alive and seek to view my world as one with a glass half full.

I am living with dementia, in the best way possible, and I am definitely not ‘suffering from dementia.’ I feel blessed that it has not stolen as much of my soul as I had first anticipated and written about in the following excerpt from my book, and that my experience of living with it is more positive than we were told it would be. Dementia has brought me many gifts, not least, that of deep introspection and the ability to live life as if every day is my last, just in case it is.

Excerpt from: “What… Happened to My Brain?”

Soon after diagnosed, the first formal writing I did about the experience was done for a subject at the University of South Australia. It was meant to be a travel piece, as if I was a travel writer, about visiting a new place. The only ‘place’ I had inside my head was dementia, and with permission I wrote about that instead. It was subsequently published in the LINK Disability Magazine:

“Dementia is an uninvited visitor to my world, an unwelcome early 50th birthday present, one where the old me seems to be rapidly moving away from a new me. I am being dragged along on this journey with no way to get back home as it races along like an express train without brakes. I read then I forget; I read, I take notes, and then I forget; I read, I highlight and take notes, and I still forget. That photographic memory I once had is gone, dead and fully buried. My high functioning mind has slipped away, sometimes showing itself like a ghost, teasing me into believing it will be okay, but just outside of my reach. Words now have no meaning and whole patches of my memory are disappearing.

The mountain I am climbing is finite, but even if I get to the top there will be no grand planting of my flag nor will I have remembered the climb, and when I come down, I won’t remember having been there. Some of my friends inform me I am not aphasic, that I am not remembering any less well than they do, that their world is the same as mine. They say I am getting old and this is what it is like, so get used to it. I ask myself, “What would they know?”

They are wrong. It is different. I regularly do not understand or remember what I read, or what people say to me… Reading has become a pointless exercise, due to the fact that as I read one paragraph, I have already forgotten the last. So taking notes of every single thing I read that I will need to recall has not become an option. Even writing a simple email or card to a friend has become a major task, because if I don’t go slowly, or take the time to edit it over and over, the words come out wrong. Writing is also difficult, as I can forget what I’ve written, and what the words mean.

It is insidiously depriving me of a normal existence, and is very humiliating and awkward to live with, stealing my soul, and threatening my very existence. It makes me nervous to go out. Every day now feels like a brand new one, except that my body feels very old and tired. I realise that writing about my dementia is not an option and that no matter how long it takes to make it legible and worthwhile to read, it is important to the management of this disease. It is possibly the only form of therapy that will ease my stress and tears…

Most days are now an effort not to just sit in a corner and cry, not to just give up or to give in to it. It requires a great amount of emotional effort to live a ‘normal’ existence and is the most demeaning and frightening experience I have had, with a feeling of wretchedness I have not felt before.

This new place is full of hidden and impending madness, full of people already whispering behind closed doors away from my ears, trying to plan for my demise and how I and they will cope. They provide words of comfort and gentle pats on my back, meaning well but never realising it usually makes me feel as like a leper, as if I am to be pitied. They are the ones who will eventually have the challenges of coping, as I will be lost in a world of inhibition and supposed joyfulness, locked out of the reality of the world and its occupants. And so, I keep asking myself am I to be the lucky one in this strange place called dementia. Perhaps so!”