Dementia is caused by a multitude of neurodegenerative diseases, the most common of which is Alzheimer’s. Less well-known are dementia-causing diseases that cause blindness, personality changes and the loss of language. These ‘rare dementias’ account for 5 to 15 per cent of all dementias and go far beyond the perception of dementia as memory loss.
My mother was in her 50s when she started showing signs of frontotemporal dementia (FTD), a form of dementia that can occur earlier in life and often manifests itself in profound behaviour and language changes. Her diagnosis was slow (even incorrect, at first) and riddled with ambiguity.
She was a wonderful, witty wordsmith and gradually lost her ability to write and speak alongside a personality shift that sometimes felt like a stranger had taken her body hostage.
My glamorous, sparkling mother developed strange spending habits, lost her inhibitions and was occasionally aggressive. As the disease progressed, the damage to her brain led to incontinence and the total loss of mobility.
I often ask myself how her FTD might have felt. Did she know she was sick? I’ll never know how much she understood, but I hope to answer some of those lingering questions in my research for a book about FTD.
I live with a high risk of developing the same disease. I’m 42, which means I may have just a decade or so of cognitive health left. Running a marathon is a small way to contribute to vital research funds that may change that trajectory.
My family is by no means alone. The Australian Frontotemporal Dementia Association (for which I’m fundraising) estimates that for every 100,000 people, 10-15 of those over age 18 will be diagnosed with FTD. Today, almost half a million Australians have dementia, and it’s estimated that 1.6 million Australians are currently involved in the care of someone living with it. It’s the second leading cause of death for Australians and the leading cause for women.
The problem is massive and growing: More than 55 million people live with dementia. Its biggest risk factor is age and by 2050, the world’s population of people aged 60 and older will double.
We’re reacting – if global dementia care were a country, it would be the 18th largest economy in the world – yet we have so much more to do to understand, destigmatise and eventually end dementia.
A MARATHON A WEEK 
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