theguardian.com
‘It’s the only disease where you’re not supported to fight for your life’: why Kate Swaffer is demanding dementia rights
When Swaffer was diagnosed with younger onset dementia at 49, she was told to prepare for the end. Instead she embarked on a mission
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Kate Swaffer had severe headaches from a young age. She was told she was neurotic, or a hypochondriac. She started researching what sort of psychological condition she might have that gave her neurological symptoms. But it turned out to be Arnold-Chiari malformation, a condition that required brain surgery. So Swaffer didn’t recognise the dementia symptoms when they started to appear. Just a side-effect of the ACM surgery, she thought.
“My first symptom was an acquired dyslexia,” says Swaffer, who had worked as a nurse – including a stint in a dementia unit. “I was getting numbers back to front, and letters back to front. I was suddenly spelling ‘that’ incorrectly.
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