Tully Smyth was 15 when she found out what was happening.
There were signs of it before then, the former Big Brother contestant and blogger says, but that was when "shit really hit the fan".
![Tully Smyth was 15 when her mother's younger onset Alzheimer's was diagnosed.](/web/20161007174447im_/http://www.brisbanetimes.com.au/content/dam/images/g/r/v/d/m/4/image.related.articleLeadwide.620x349.grv3wy.png/1475783704359.jpg)
Smyth's 51-year-old mum, Kay, had become increasingly forgetful and stressed and unable to sleep.
"At first it was a very slow decline," Smyth, now 28, says. "She'd forget her keys or where she parked her car."
![Better times: Kay with Tully, her younger brother and husband.](/web/20161007174447im_/http://www.brisbanetimes.com.au/content/dam/images/g/r/v/d/m/6/image.related.articleLeadwide.620x349.grv3wy.png/1475783704359.jpg)
Some of the changes in Kay – buying multiple bottles of milk or packets of biscuits – seemed innocuous, even fun. Other changes in their once "powerhouse" mum who worked in head hunting, were not innocuous or fun.
"She was always upset about something, always angry about something, always yelling at us," Smyth recalls.
Something was wrong, but none of them could have imagined what it was. In fact, initial brain scans seemed positive.
![Tully holds Kay's hand.](/web/20161007174447im_/http://www.brisbanetimes.com.au/content/dam/images/g/r/v/d/r/5/image.related.articleLeadwide.620x349.grv3wy.png/1475783704359.jpg)
"I remember finding out she didn't have a brain tumour and being really happy, because that was the worst thing there was," says Smyth.
Later scans revealed a lesser known fate; plaque on Kay's brain confirmed younger onset Alzheimer's disease, a diagnosis that can include people as young as 30.
![Tully with her mum Kay.](/web/20161007174447im_/http://www.brisbanetimes.com.au/content/dam/images/g/r/v/d/m/k/image.related.articleLeadNarrow.300x0.grv3wy.png/1475783704359.jpg)
Alzheimer's disease is the most common form of dementia, accounting for about two-thirds of cases and more common among women. It causes a gradual decline in cognitive abilities, often beginning with memory loss.
Dementia is the second-biggest killer in Australia and about 1.2 million of us are involved with caring for someone with dementia.
It is on the rise, and yet it's not a disease we readily discuss.
"It doesn't discriminate. People in their 30s can get early onset. but it's not a trendy disease, it's not a pretty disease," Smyth says, adding flatly, "there is no cure."
By the time they found out what was wrong with her, Kay was "not with it" and deteriorating rapidly before her young family's eyes. There was very little understanding, let alone awareness about what was happening to the mother of three.
"I felt so alone," admits Smyth, who hopes to raise awareness about the disease, adding that if her story makes "one person feel less alone" then it's worth it.
Smyth's father, "an absolute saint", quit his job to become a full-time carer, but Kay's illness took a its toll on the family.
According to Alzheimer's Australia "the hallmark of dementia is the inability to carry out everyday activities as a consequence of diminished cognitive ability". Another hallmark is an inability to control emotions.
Kay would lash out and act "loopy", occasionally aware that she was forgetful but never again experiencing a "moment of lucidity".
When her mother died, they had to tell Kay "over and over again" because she would forget. "That was devastating," Smyth says. As was watching her mental descent accelerate.
"You'd leave her for five minutes in the kitchen and she'd be drinking Draino," she says. "I think that's the cruellest thing – that she got sick when I was so young – most of my memories are of her being ill."
As Smyth finished school and was admitted to university to study journalism, Kay was admitted into full-time care.
Her mum "stopped knowing who I was well before she went into a care home", but Smyth admits she was distraught about the decision.
"I just wanted my mum and I wanted Mum to be home with us," Smyth says shakily.
While she believes "it's too late for my mum" she is hopeful that with increased funding, awareness and "amazing breakthroughs" in science, there is hope for future generations.
Now, Smyth prefers to visit her 65-year-old mother on her own, instead of with her family who she admits all have their own way of dealing with the devastation.
She sits with Kay in silence and gives her hand massages.
"Whether she knows it's me or not, it doesn't matter, she knows someone is there with her."
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