'I was diagnosed with dementia at 49. It felt like my soul was being sucked out.'

There are 50 million people around the world living with dementia, and I am one of them, having been diagnosed aged 49, then a married working mother of two teenage boys.

I started to experience symptoms of acquired dyslexia and other concerning cognitive changes in 2006. Initially, it was relatively easy to compensate, but eventually they started affecting my work. I would experience short- and long-term memory loss, would often get lost while driving the car and would make mistakes with quotes.

In hindsight, I was almost blasé about it, thinking these changes were due to the brain surgery I had in 2005. I mentioned them in passing at a regular neurologist appointment, and some 18 months later, I was diagnosed with a rare temporal lobe dementia.

Being diagnosed with dementia felt like being struck by lightning. Our youngest son said at the time, ‘But mum, isn’t that a funny old person’s disease?’ We laughed, but the gravity of the situation took its toll. I cried for many weeks.

I then read about the late Dr Richard Taylor, an eminent psychologist from Houston, Texas, who went through a similar experience. I took his advice to start writing as a way of healing, which led me to start a blog and to write my first book on the subject, What the hell happened to my brain?: Living beyond dementia.

Writing became the window into my soul, and importantly, my memory bank. My blog also quickly became committed to a meaningful dialogue with a wide range of people about the critical issues impacting a person living with a diagnosis of dementia and their families and close friends. It is an academic resource around the world and tells of the challenges those of us with dementia face. It also speaks of the joy.

Writing has helped me to make meaning of this sometimes hideous, terminal, progressive illness, and to rise above it. Most of the time, I live every day as if it is my last, just in case it is. I have no idea when my ‘lights’ might go off. So rather than stress about it, I work hard to live positively, using rehabilitation and other positive strategies.

We are all born with a death sentence, but why ‘die’ at the time we are diagnosed with dementia? As we’re being diagnosed earlier in the disease process (my patients were in their 70s when I was, ironically, a nurse in a dementia unit), my experience has shown we need to better manage those who are newly diagnosed as early stage today, as many still have much living to do.

At the time of my diagnosis, I was also studying a double undergraduate degree at the University of South Australia. It was there that I discovered the incredible value of disability services and support provided to any student with any disability to help them achieve their personal goals. The education sector supported me to keep living my life, rather than recommending Prescribed Disengagement® (advising someone to go home and prepare to die) that so many people face. It made me realise that, with early interventions, continued learning, pursuit of personal passions and rehabilitation, life with dementia may not be as gruesome as I was told or had thought.

But while there is not a cure, approaching symptoms of dementia as disabilities requiring support can help us function for longer, in the same way it can help someone following a head injury or after a stroke. I self-prescribed rehabilitation and kept studying as my form of neuroplasticity brain training. In a sense, University became my ‘day respite’. I recommend all people diagnosed early in their dementia to seek and keep doing the activities they love; in essence, to reclaim their pre-diagnosis lives. Use as much disability and other support as needed to remain as independent as possible — that’s what every other person living with disability expects and receives.

Living with a diagnosis of dementia, while it initially felt like my soul being sucked out, has become one of the greatest gifts of my life (after my husband and children, and the loss of a partner to suicide). It has given me clarity about what family and friendship really means, and about living life as if there really is no tomorrow. It has taught me to be grateful for what I have, and for those who have stuck by me. It has given me the gift of writing and speaking out, in an effort to change the world and to improve the lives for those already diagnosed and those being diagnosed every three seconds.

Kate Swaffer is an award winning international activist, speaker and author, committed to a meaningful dialogue with a wide range of stakeholders about the critical issues impacting a person living with a diagnosis of dementia and their families.

For more from Kate, visit her blog.

For information and support, visit the website of Dementia Alliance International and Dementia Australia.