There are more than 47 million people diagnosed with dementia and I am one of them. I was diagnosed at age 49, then a mother of two teenage boys.
In 2006, I started to experience symptoms of acquired dyslexia and other concerning cognitive changes, including some long and short term episodic memory loss. Initially it was relatively easy to compensate for the changes. Eventually they started affecting my work, and I would often get lost while driving the car.
I was rather blasé about it, thinking these changes were due to my brain surgery in 2005, and mentioned them in passing at a regular neurologist appointment. Some 18 months later I was diagnosed with a rare temporal lobe dementia.
As a working mother, also studying double undergraduate degrees at university, it was like being struck by lightning. Our youngest son said at the time: "But Mum, isn't that a funny old persons disease?" We laughed, but eventually the gravity of the situation took its toll, and I cried for weeks.
I then read about the late Dr Richard Taylor, an eminent psychologist from Houston, Texas, who went through a similar experience and took his own advice to start writing. I immediately began writing as a way of healing, which led me to start a blog and to write my first book.
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 stakeholders 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, to rise above it and live every day as if it is my last, just in case it is. I have no idea when my 'lights' will go off, so rather than stress about it I work hard to live with dementia.
After all, we are all born with a death sentence.
As we're being diagnosed earlier in the disease process (my patients were in their seventies 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, many still with much living to do.
When I was initially diagnosed I was studying at the University of South Australia. It was here that I discovered the incredible value of disability services and support provided to any student with any disability to achieve their personal goals. The education sector supported me to keep living my life, rather than recommending Prescribed Disengagement that so many people face. It made me realise that with early intervention, continued learning, pursuit of passions and rehabilitation, life with dementia may not be as gruesome as predicted.
While not a cure, approaching symptoms of dementia as disabilities requiring support can help us function, 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 out and keep doing activities they love; in essence, to reclaim their pre-diagnosis lives. Use as much support as needed to remain as independent as possible -- that's what every other person living with disability expects, and receives.
After reading Norman Doidge's book The Brain That Changes Itself, I realised that study was more than my neuroplasticity. It was meaningful activity (to me) that added inherent value to my life. My neurological physiotherapist now believes in the value of rehabilitation for dementia, and teaches it in his Masters of Physiotherapy program at the Flinders University. For many years I have seen a lack of proactive, person-centered, post-diagnostic pathways of support that include rehabilitation. I've been working alongside other members of Dementia Alliance International to put dementia on the global agenda and to lobby for a human-rights-based approach. It is slow, but we are gaining momentum.
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.
It has given me clarity about what family and friendship really means, and about living life as if there really is no tomorrow. Dementia 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 the new diagnosis that occurs every four seconds.
Kate Swaffer will be addressing the BaptistCare 'Stories of Me' Dementia Forum in Sydney on 15th September, 2016.