When Kate found out she had a rare, younger onset dementia at the age of 49 she was told to “give up work” and start aged care respite to get “used to it”. She wants the world to know that dementia doesn’t have to be a death sentence.
Video above: Residents at Uniting Starrett Lodge Hamlyn Terrace take part in the bucket list. Watch Dancing with Dementia here.
In 2008 I wrote a poem called, ‘Losing my mind’, which won a University of South Australia poetry prize. At that time, I was a mature age student studying a double degree, a lifelong dream of mine. I was also working, married and a mother of two teenage sons, so life was extremely busy, and very fulfilling. From the outside it would appear life was good, but the poem was a reflection of the inner turmoil I was experiencing having been diagnosed with a rare, younger onset dementia at the ripe old age of 49. I soon discovered dementia does not discriminate, but people do.
In January 2005 I had brain surgery for an Arnold Chiari Malformation (a condition in which brain tissue extends into the spinal canal). Following that surgery I started noticing changes to my cognitive abilities such as spelling and maths and had noticed an unexplained acquired dyslexia. I’d had a high cognitive capacity and almost photographic memory and to suddenly not be able to recall a phone number, or to mis-spell the word ‘that’ and not understand the meaning of the word ‘psychology’, when one of the degrees I was doing was a Bachelor of Psychology, was more than confusing. Although I thought these changes were side effects of the brain surgery, testing for dementia was done, and after a few years of tests, including repeated MRI’s and neuropsychological testing, I was diagnosed with dementia.
This diagnosis was totally unexpected, as even though I’d been a nurse for the first 25 years of my career, I had no idea young people could get dementia. It was as if a bolt of lightning had hit me and I cried for many weeks, believing my life was over. My youngest son even said, ‘but mum, isn't that a funny old person’s disease?’ At the time we laughed, even though it was not really funny! I was fearful and felt sure our, and my future, had been irrevocably changed, and for the worse. These are the common things that others express when I talk to them about dementia, whether they are diagnosed themselves, or supporting someone who is.
Soon after being diagnosed, my husband and I started to seek information and support. I was advised to ‘give up work, give up my studies, get my end of life affairs in order, and to start going to aged care respite a day a month to get used to it’, which I ultimately termed ‘prescribed disengagement’. My husband was also advised he would soon have to give up work and take over all of my care. Whilst well intended, this advice gives way to a deep sense of despair, and a sense of hopelessness for any future, whilst also increasing the dependence and disabilities of the person with dementia earlier than necessary.
I believe it is not only unhelpful, it is harmful, and a breach of human rights. Dementia is the only condition I know of where people are told to prepare to die, rather than to fight for our lives. This is what started me on my global campaign for human and disability rights, and our right to access equal health care and disability support. If I’d had a stroke aged 49, I know I would have been provided with rehabilitation and other support to go back to work. We desperately need the dementia community, and especially health care professionals, to also support us to live as independently as possible, for as long as possible.
We must all reframe how we view dementia, not only to reduce the stigma and discrimination, but because with appropriate disability support, people will live more independent and meaningful lives. It is not thanks to any support recommended or advised to me, that I am living positively with dementia, but due to my own self-prescribed rehabilitation strategies, and the disability support provided initially to me by my university. The health care system must rethink dementia, and do the same.
Ultimately, dementia has turned out to be the third greatest gift in my life...
While I do struggle with this condition I try to focus on the positives, not on my deficits or what I can't do, or need help with. Me, and the family, often call it our 'denial bubble' which actually helps us stay focused on living. Some days I do need help to get dressed or to make a cup of coffee. I use a lot of laminated notes all over the house, with reminders of how to do things, or for example, what not to do, e.g. I must not cook when home alone as I have almost burnt the house down three times. These are the things most people don't see, as by the time I am 'out', I am well dressed and had support getting there. To try and slow down dementia’s progression, and retain some independence, I have been self prescribing many types of rehab including speech therapy, to support me to continue to speak and communicate.
I spend a lot of time these days working on the global advocacy and support group which I co-founded in 2014. Dementia Alliance International (DAI) aims to empower others with dementia to live more positively, and to demand disability support to do so. Today my life involves running DAI peer to peer support groups for others diagnosed with dementia, all around the world. Pre COVID-19, I spent a lot of time travelling to meetings and events at the UN and WHO, and at conferences, speaking and advocating for the rights of people with dementia, and ensuring representation of the 50 million people living with dementia. I’m also involved in a number of research projects. When I’m not running around I love nothing more than being with my husband and two adult sons and their partners and I still love gardening, and listening to music.
Ultimately, dementia has turned out to be the third greatest gift in my life - after meeting my husband and welcoming my sons into the world - and ironically, it has given me a clarity about life that I have never had before.
Facts about dementia:
- The word dementia is an umbrella term for a group of conditions; Alzheimer’s disease is the most common type of dementia.
- The World Health Organisation states that Dementia is a major cause of disability and dependence in older persons
- There are more than 459,000 people with dementia in Australia, and globally more than 50 million
- 27,800 people in Australia have younger onset dementia, meaning they had symptoms under the age of 65
- Dementia is the second leading cause of death in Australia, and the leading cause of death in women in Australia