The story behind the activist and academic
Poet, author, activist and academic, Kate Swaffer reveals how she is living beyond younger onset dementia.
When former nurse Kate Swaffer was diagnosed with younger onset dementia at just 49 years of age, health care professionals and service providers told her to "get her end of life affairs in order, to quit her job, to give up study and live for the time she had left". They also suggested she "get acquainted with aged care sooner rather than later".
Fast-forward eight years and Kate has become an internationally recognised speaker and advocate for the more than 47.5 million people with dementia around the world.
Since her diagnosis, Kate has completed two undergraduate degrees, in psychology and creative writing, in her hometown of Adelaide and a Masters of Science in Dementia Care at UOW. She has since commenced her PhD at UOW, focusing on understanding the lived experience of dementia and improving the lives of those people living with it and those who support them.
The poet, author, activist and academic now sits on many boards, steering committees and scientific panels providing an academic and consumer perspective and helping to set research priorities for dementia, as well running Dementia Alliance International, a global charitable organisation where she is Chair, CEO and co-founder.
Kate was a South Australian Finalist in the Australian Of The Year Awards 2016, and winner of five 2015 National and International Awards.
Notably, she is the only Australian to be a full member of the World Dementia Council, and is the first person with dementia ever to have given a keynote speech at a UN World Health Organisation event.
Kate's first book on dementia, published by Jessica Kingsley Publishers, What The Hell Happened To My Brain?: Living Beyond Dementia, was released in January 2016. Her second book, Diagnosed With Alzheimer's Or Another Dementia, written specifically for an Australian audience and co-authored with Associate Professor Lee-Fay Low, will be released in September 2016.
This is her story.
The rollercoaster takes off
For this article, I was asked what it's like to live and to study with a diagnosis of younger onset dementia. Well, eight years since diagnosis, I can most definitely say it's been one hell of a roller coaster ride, but also the one ride I would never want to give back. Dementia has taught me more than any other experience in my life, even though at the same time, it has taken almost as much away.
I'm originally a country girl, and grew up in a farming community on Eyre Peninsula in South Australia. I have experienced a number of different careers, including my first career as a nurse. Ironically, my first nursing job when I moved to Adelaide after my training was in the city's first secure dementia unit.
Throughout my life I have also volunteered for various organisations, including The Bereaved Through Suicide Support Group, The Big Issue SA, at my children's schools doing tuck shop, reading and fundraising, and as a community visitor to the elderly in a local nursing home. My life was, and yes, even with dementia, still is, interesting, busy and very fulfilling.
Late in 2004, I was diagnosed with a Type 1 Arnold Chiari brain malformation, which required neurosurgery early in 2005, followed in the same year by a cervical discectomy, a fractured hip and a right carpal tunnel operation. That same year, my husband's business partner died of an aneurism, his mother passed away from ovarian cancer, and we also moved house. In 2008, as a working mother of two teenage sons, while studying a double degree, I was diagnosed with a form of younger onset frontotemporal dementia at the age of 49.
It's a rare and debilitating terminal illness that felt like it was trying to steal the very essence of 'me'. It was an unexpected and early 50th birthday gift, and although I'd had an interesting life before dementia, and had thought I had almost seen and done it all, Mr Dementia, otherwise known as Larry in my house, has definitely had the last laugh on that.
I said earlier life has been a roller coaster ride living with dementia, but that was probably an understatement! Thanks to dementia, my life has changed in ways that are sometimes challenging to understand and difficult to live with, and yet I prefer to work hard to use these things to strengthen my resilience to drive me to achieve more of my goals, not less… To live every day as if it is my last, just in case it is. I urge you to 'live with urgency, before the emergency' (which Robyn Moore said at the Alzheimer's Australia national conference, in 2011), and I can guarantee you now I am doing exactly that.
Dementia is simply an umbrella term for a collection of almost 130 conditions (including Alzheimer's Disease) in the same way the terms 'cancer' or 'car' are used. And yet, most people don't see the symptoms of dementia as disabilities but rather as external symptoms of 'suffering'. Many also think dementia is a mental illness which it is not. And so, people with dementia are regularly defined by the symptoms of our disease - forgetful, confused, aggressive, odd behaviour, absconders, mute or refusing to communicate - rather than the people we still are: mothers, fathers, lovers, daughters, wives or husbands, employees or employers, students, grandmothers, aunties.
It is a tragedy that so many only see our deficits.
There are days the feeling that my life is slipping away from me is almost tangible and I do sometimes feel cheated and angry about having dementia. Losing my legs and arms, or my sight or hearing, might be better than this insidious, sometimes hideous disease. When I was first diagnosed, the tears ran down my cheeks, the tang of salt a permanent fixture on the taste buds of my lips. The only solace then was that I would occasionally forget why I'd been crying. I cried, almost nonstop, for about three weeks. I used to think 'if only someone would tell me it is just depression or some bizarre mental illness… anything other than dementia'.
I know the diagnosis is real but it was not initially easy to come to terms with, and for a couple of years it felt as if my soul was being sucked out, little bit by little bit, as my world was slowly disappearing. During the worst moments, it still feels like that, and the Harry Potter movie where the Dementors try to suck out Harry's soul is the best analogy I can find to explain how it occasionally still feels. I called it My Unseen Disappearing World in an Adelaide Fringe production back in 2012, as so many of the symptoms are still so invisible to others.
Taking on a PhD
It's rare now that I write about the more difficult parts of living beyond dementia, but as a current UOW PhD student, it is the symptoms of dementia causing me disabilities that perhaps do need discussing here. In 2008 I wrote an article published in LINK Disability Magazine, and this is one of the things I said back then;
'My high functioning mind has slipped away, sometimes showing itself like a ghost, trying to tease me into believing it will be okay, but now outside of my reach. My thoughts fly around inside my head like helium balloons high inside an auditorium, also out of my reach.'
Speaking and thinking with dementia, and as it progresses, is more difficult; the search for words, the meaning of words, numbers and equations are now a major challenge. I am seeing words in strange ways, not as whole words any more but as if they are split into two. For example 'castle' now appears to my mind as 'cast' and 'lee', 'imperialism' as 'imp' and 'era' leaving out the 'ism' entirely. The acquired dyslexia is changing terms like 'Hamish and Andy' into 'Amish and Handy', and colours like purple into orange, or numbers like 89 into 98.
It is sometimes difficult to hide the symptoms, or to rely on the inner voice I use to help me to think and to find the right words to speak. It is harder to process information, to know how to act and to respond, how to behave appropriately and to know what to do in normal every day situations. There are many more moments where the 'slips of my tongue or mind' are evident to me, and my tongue twists as it struggles with the effort of finding the right words.
Studying and writing has been greatly impacted, as it takes many more hours to not only to understand what it is I am meant to do, but then to actually do it. For example, it can take up to an hour to make a short email legible. My ability to process information or to understand simple words or things is damaged and my photographic memory is dead and buried!
Using the online referencing tool, which does make academic life easier, does however require me to watch the YouTube videos of how to use it, every single time I want to write academically. It is time consuming, and yes, also incredibly frustrating, but that is no reason to go home and simply prepare to die.
When I was diagnosed with dementia, I was Prescribed Disengagement® from my pre-dementia diagnosis life, and most people are still receiving that 'treatment or pathway of care'. I was told to 'Give up work, give up study, to get my end of life affairs in order, and to go home and live for the time I had left." I was also told to 'Get acquainted with aged care' along the way. Remembering I was only 49, this is not only unpalatable, it is, I believe, unethical, and dementia is the only disease I know of where people are told to go home and prepare to die, rather than to fight for their lives.
When I was first nursing, dementia was termed 'senile dementia' and most people were diagnosed at late stage, and hence they did need to be managed that way, with a focus on end of life and aged care. However, as the health sector and researchers have been pushing hard for earlier diagnosis of dementia, they have not changed the way they 'treat or manage us'. Whilst there is no cure in sight, and no disease modifying drugs yet on the market, it is not only illogical that one day I was working and studying full time whilst bringing up a family, and the next day unable to do anything, it does not make medical sense either.
Being a university student at the time of diagnosis was one of two key things that changed my life away from despair and fear, to one of truly living beyond dementia. Every university and school or college has disability support for students; my psychology lecturers simply suggested I see the symptoms of dementia as disabilities requiring support, and keep living my life. In hindsight, this was extraordinarily simple, and absolutely the pathway we should be given if we are diagnosed early in the disease process. It is a more ethical post diagnosistic pathway of supporting us to live with dementia, not only die from it, and we have a basic human right to disability support.
We also have a human right to a more proactive enabling and rehabilitative pathway of care, and thought the Dementia Enabling University Strategy I am involved in, I have hope that the next generation of people in the workforce will see this clearly, and no matter what their discipline, UOW will have graduates who are not only dementia aware, but have an understanding in their particular fields of how they may be able to better support people in with dementia to live more independently in their communities.
Rethinking how dementia is managed
After learning to accept the symptoms as disabilities, which in itself was challenging as it was 'one more negative label' to wear, I decided to work on my wellbeing by focusing on a healthy lifestyle, and then with my nurse's hat on, wondered why I had not been prescribed rehabilitation, in the same way I would have been if I'd had a stroke. So, with much pushing and coercing, I convinced my allied health team to proactively support me with brain injury style rehabilitation, for which today there is emerging evidence to support this post diagnostic pathway.
It may not be a cure, but it has certainly helped me to live as well as humanly possible with dementia. For example, people with dementia who will almost all have language and speech changes, need proactive speech pathology after diagnosis, not just a speech pathologist to attend when we can no longer swallow well nearer to the end of life. This is how I have managed to still speak as well as I do, not because my dementia diagnosis is wrong.
Exercise, neuroplasticity, healthy diet, staying engaged, new learning, reduced alcohol, not smoking, all are clear risk reduction factors for dementia, and evidence is now proving these factors also slow down or perhaps even reverse the disease. Having my drivers licence revoked aged 50 after failing the practical test (rather miserably… I rated at 35%!) in 2009 meant at the time losing my job. I now know that I should have been supported to stay at work with reasonable adjustments, for as long as either I wanted to, or until my symptoms made it too difficult to continue to.
This also is a basic human right, and thank goodness universities see and treat people with disabilities as whole people with dreams and personal goals. Perhaps it is universities that have the most potential to make the greatest change, which is also why I am studying in the field of dementia; what better credentials could I have than living with a diagnosis of dementia to help create real change?
Death, illness and dying have been a big part of my life through my nursing and personal experiences, and my loss of a partner to suicide aged 27, has left me with a very philosophical attitude to living. In saying that, being confronted with the very real prospect of dying more than once perhaps has had the most profound effect. It has also been the most positive. Life is finite, and we were all born with a death sentence, so living today as if it is our last is important, as it may be just that.
When diagnosed with dementia, running helped control the tears and the intense pain and fear. Then I rediscovered writing, and started a private blog called, "What the hell happened to my brain?!", which became the basis of my first book. My public blogs have become a vibrant conversation between the dementia communities globally, and my first blog "Creating Life with words: Inspiration, Love and Truth" has been archived in the SA and National Library PANDORA collection.
My writing has become a mirror into my soul, about love and life brought into sharp focus through loss.
As a society, we must change the way we view and treat people with dementia. The more than 47.5 million people globally with dementia cannot afford for us not to, especially as this is likely to double by 2030 and triple by 2050. There is one new diagnosis somewhere in the world every 3.2 seconds, although there are no treatments are currently available to cure or significantly alter the course of dementia, leaving persons with dementia with co-morbidities in a state of progressive disability that can last for 20 or more years.
Researchers estimate that dementia is the leading cause of dependency and disability among older persons in both Lower and Middle Income and High Income Countries. A recent OECD study concludes, "Dementia receives the worst care in the developed world". First person accounts and reports from care partners, professionals and Alzheimer's Associations worldwide all confirm this.
Not forgetting about the human cost of dementia, governments and the health sector cannot afford not to take a different approach. We also need researchers to stop focusing on the negative aspects of dementia, and do more research that supports people diagnosed to live better lives. And we need more ethical care based on rehabilitation, not on negative labels such as wandering, and for everyone to stop calling us, and seeing us as 'sufferers of dementia' as if that is the sum total of our experience.
I live with it, I do not often suffer from it, but as a family carer, I suffered watching the changes in my family members with dementia, and they said when still alive, far more than they did. It need not be all about the perceived 'suffering' and end stage of care, because people can and do live for many years before symptoms are severe enough to warrant hands-on care.
The first priority expressed by persons with dementia in public opinion surveys is rehabilitation and support to enable them to remain in their own homes, to live independently for as long as possible, follow their interests and remain valued members of their communities. We need researchers, health care professionals and communities to see us as whole human beings not just symptoms or 'behaviours'; real people, many who still have a lot to contribute following a diagnosis of dementia.
This has been my personal approach to dementia; seeing dementia differently, along with using humour! My family and I use humour to deal with dementia, and try to laugh at the 'symptoms' of dementia as they come into our lives. We find our attitude is the one very small thing that can make the biggest difference; if you are not happy, then the best thing you can do is to change something, or take another direction.
Dementia as a gift
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.
Groucho Marx once said; I don't care to belong to a club that accepts people like me as members.
As I have no choice about having a diagnosis of dementia, and even though I'd prefer not to be in this particular club, the best way I can survive and live my life is to laugh as much as possible, to ignore the negatives, and try to see the funny side of things. I wrote in 2008:
"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."
Whilst I do feel I am still climbing that very same mountain, I already believe I've been to the top, at least a few times now. And although I occasionally feel as if I have plagiarised myself, I can go back and read about the tough but also exhilarating climb on the ragged mountain ledges, to the top!
Main image: Kate Swaffer (Image by Meg Hanson Photography, courtesy Aged Care Institute)
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