Kate Swaffer was just 49 years old when she was diagnosed with a form of younger onset dementia. In her book, she offers an all-too-rare first-hand insight into that experience, sounding a clarion call for change in how we ensure a better quality of life for people with dementia. We caught up with her to find out a bit more about the book and the experiences that motivated her to write it.
What made you want to write ‘What the Hell Happened to my Brain?’
Following the diagnosis of dementia, for the first few years whenever I attended something to learn more about dementia, it was always people without dementia telling me how and what I was feeling, what was happening to me, and also what was best for me. At no time, did anyone bother to ask me. I suppose, that is really what started me writing about living with dementia as I was sick of it, and could not believe (still cannot) people without dementia felt they could truly believe what it is like being diagnosed and living with dementia. On top of that, the public narrative and discourse is still almost always about suffering, and although I do suffer some of the time (from dementia and other ailments), it is not the sum total of my experience, so I wanted to share that it is possible to “Live Beyond Dementia.”
My blogging was also a way of cataloguing my daily experiences and thoughts, and very quickly became a communication tool between family and close friends, and then the wider dementia community, as well as a memory bank for me to go back to. So the habit of writing now, almost daily, for more than four and a half years, also gave me the discipline and practice to write a book.
Since your diagnosis, have you experienced a change in society’s attitude towards those with younger onset dementia?
I have noticed, perhaps in the last 6-12 months, a slight change in attitudes and awareness, but still, many people without dementia insist on writing or speaking about ‘our’ experiences of living with dementia, and inflicting their experience of suffering onto us, as if it is our experience. It is ‘our’ story to tell, and I feel even family care partners who speak out, should limit it to their experience of being a care partner, not talk about our experience of living with dementia. After all, whose story is it? It would be like me writing about my sons experience of living with Cerebral Palsy (if he had that) – it would be ok to write how it felt as a mother to have a son with CP, but not ok to write about his experience of living with it. Amongst other things, this, and the stigma and discrimination are what fuel me to keep working on our human rights to full inclusion in civil society.
What would be your best piece of advice for others who are living with dementia?
My advice is to IGNORE the Prescribed Disengagement® you will be given, and reclaim your pre diagnosis life; demand support to continue to live YOUR life independently for as long as possible, with strategies and support for the disabilities that the symptoms of dementia cause. It is a human right to be supported to live, not only to die. Universities automatically support students with disabilities – so why doesn’t the health sector. Dementia is the only disease I know where we are simply told to get our end of life affairs in order, but with no support for it being a terminal illness, then told to get acquainted with aged care, and go home and give up. This is not only unpalatable, it is unethical…
You’re a very active advocate for living beyond dementia – what have you got planned for the coming months?
My next few months and years are already filled with living! I am a first year PhD candidate at the University of Wollongong, as well as the Chair and CEO (and co-founder) of Dementia Alliance International, now the peak body for people with dementia, and the global voice of people with dementia. I will continue to blog when possible, I have at least one more book to write, as well as to continue to write and publish poetry books. My second and third volumes of poetry are being released later this year by Ginninderra Press. Of course, I will always continue to advocate for the human right of all people with dementia to be equally included in everything that is about them. And if my dementia progresses and I cannot achieve my current goals, then there probably is nothing I can do about it, but I will not die without fighting for my life!
Any final thoughts you’d like to share with our readers?
I hope that reading my book illuminates the need for the voice OF people with dementia, the inclusion OF people with dementia, and in particular highlights what can be achieved post diagnosis WITH rehabilitation and real support for disabilities. Through the online support groups that Dementia Alliance International hosts for people with dementia, we meet people who have quite literally been told to go home and give up, as I wasn’t, and who are struggling to find the motivation to get out of bed each day. After being with others who are living beyond dementia, it gives me the most joy in my life to see them wanting to reclaim their lives again. This is the absolute power of peer to peer support groups, and is also why I push so hard to live beyond dementia. For anyone living with a diagnosis of dementia, you can join DAI here: www.joindai.org
For more information or to purchase a copy of ‘What the Hell Happened to my Brain?‘ click here.
Follow Kate on Twitter – @KateSwaffer