‘It doesn’t define me’: What is it like to live with dementia?

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There are 472,000 people in Australia living with dementia – about 2 per cent of the population – and someone in the world develops a form of it every three seconds

Natalie Ive was in her 40s when she started forgetting the names of children in her kindergarten class. She loved being a teacher and quickly developed workarounds, such as checking the roll or a child’s name on a painting to prompt her memory.

When Mithrani De Abrew Mahadeva was diagnosed in 2015, she was told to prepare for a nursing home. She was 65. “I said, ‘I don’t want to go into a nursing home. This is my own home, something I am familiar with.’” There are more than 200 different diseases that cause dementia, although most are very rare. The most common is Alzheimer’s disease, which accounts for about two-thirds of cases. Other common forms include vascular dementia, Lewy body disease and frontotemporal dementia.Another disease that can cause dementia is chronic traumatic encephalopathy. It is linked to repeated blows to the head and was found post-mortem in former AFL players Polly Farmer, Danny Frawley and Shane Tuck.

Ive, now 49, was diagnosed with younger onset dementia/primary progressive aphasia, a type of dementia that makes it difficult to express thoughts or find words. “I want to really highlight the positives,” she says. “Even on bad days I am still doing things for myself. Yes, aphasia is a part of me, but it doesn’t define me.”

It’s wildly disorienting: the walls rustle like a living creature, furniture rushes at you at distorted angles, and the toilet – a muted blur of shapes in the dark – turns out, too late, to be the washing basket. He began sleeping a lot in the afternoon and behaving in an antisocial way that was out of character. Once he loudly told two people they were too fat to fit in a lift.

She’s had to become “extraordinarily patient”. It takes three attempts to get out the door. “Wallet and hearing aids are often misplaced,” Moyle says. “There’s a real line between hyper-attentiveness that is so controlling it stifles and trying to position Chris to keep his independence.” Family carers often experience a particular kind of grief. “It’s not like an end-of-life grief, where it’s very final, it’s a living grief and it’s an anticipatory grief,” Fairhall says.

“This is not who he is, this is an aberration. I’ve known him long enough to know he loves me, I love him.”

 

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Why does it matter that 'every 3 seconds someone in the world develops a form of dementia'? Every 3 seconds 5 people die. Whatever. Are we surprised that 1 in 5 people go onto to develop dementia? We know already it's a huge problem. You're not getting a Walkley for that.

My mother has got dementia. For that reason, I can only talk to her for a very short time because I have to repeat whatever I say to her about 5 times before she starts to remember what I said to her. It's hard for me because I have got spasticity in my vocal chords. Disability.

Whats the % of people aged 65 and older who have dementia? Aged 80 and older? What foods can we eat to stave it off?

My takeaway here is that Australia is way smaller than I thought.

That poor person!

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