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Kate Swaffer speaking in Geneva
The Australian author living with dementia who wrote the book What the hell happened to my brain? has co-authored her second book, Alzheimer’s or another Dementia: a practical guide to what’s next for people living with dementia, their families and care partners.
Written in partnership with leading dementia researcher Dr Lee-fay Low, the author of Live and Laugh with Dementia, the authors hope the book will help many people living with dementia. “We spent many hours on this book including interviewing literally hundreds of people, to get as many voices, and as much information as possible, and hope it is a starting place for how to learn to live with dementia, not only die from it,” Kate explains.
Kate, who lives in Adelaide, Australia, describes herself as an author, advocate, activist, poet, mother, wife, student, retired chef, retired nurse and animal lover. She was diagnosed with younger onset dementia at just 49; at the time, she was a married, working mother of two teenage boys.
“Even though I had worked in a dementia specific unit in the 1970s as a nurse, I had no idea younger people also get dementia,” she said.
“Our youngest son said, ‘But mum, I thought it was a funny old person’s disease?’ We laughed at the time, although we were not laughing on the inside.”
When Kate was diagnosed, she was told the same thing by health care professionals and service providers; to give up work, give up study and go home and live for the time she had left. “On the way, it was also suggested I put my end-of-life affairs in order – even though at no time was I told dementia is a terminal illness – and to get acquainted with aged care, including selecting a respite day care and residential care facility, sooner rather than later, so I could become used to it. My husband was told he would soon have to give up work to become a full-time carer,” she says.
Ms Swaffer says the reality of this treatment is, it takes away all hope of any sense of the future.
“It potentially turns me into a victim, tells carers to take over and further disable me, and in doing so, it can turn them into martyrs,” she says.
As a result, Kate has taken a stand and is campaigning for proactive support. She is advocating against what she calls (and has trademarked) the phrase ‘Prescribed Disengagement®’. “It promotes learned helplessness – it disables and disempowers us to live beyond dementia and to continue being active and healthy,” Kate explains. “If you have a brain injury you’ll have rehabilitation – why can’t the same be done for people living with dementia?”
She believes disability support and rehabilitation is a human right and should be available for people living with dementia to remain as independent and active as possible. If the care provided is to change, Kate believes the media, the dementia service provision sector and academia also need to change the language they use and to stop using negative words such as dementia sufferer or victim.
Kate also believes if people are treated differently, behaviours would change and through the Dementia Alliance International, she is working on claiming the Human Rights for all people with dementia, including being legally entitled to be included, and not just consulted, or represented by others.
She recently wrote in the Huffington Post:
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.
“But seriously, being told you have a terminal illness with a finite time to live, does give you a new perspective on life, and if there are things you want to do like travel, or spend time with family or friends, or things you feel you must do before you die, as is the case in my dementia advocacy, then it is imperative we all make the most of every single day,” says Kate. “After all, we are all born with a death sentence.”
Kate has recently received an Australian Financial Review/Westpac 100 Women of Influence Award in the category of Social enterprise and not-for-profit for her work with Dementia Alliance International.
You can read more about Kate’s work by visiting her website, and buy her books at most Australian bookstores, or online at Amazon or The Book Depository.
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