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“Living with dementia is like a bad dream,” Ms Flavin said.
“You’re like who am I, where am I, you have to re-orientate all over again every day.
“It’s actually repulsive to live with your brain not functioning properly.”
The 55-year-old, who used to work for financial watchdog APRA, has been living with dementia for a decade.
She is the face of the new awareness campaign to help people in health and aged care understand the internal struggles.
“Your brain is a bit broken and there’s a disconnect between what you feel and what you express it can come out as anger, frustration, short temper,” Ms Flavin said.
“I might throw something. But I’m not angry at people. I’m angry with me.”
This insight comes after disturbing revelations at the aged care royal commission on the widespread use of chemical restraints such as anti-psychotics and sedatives…to “calm” dementia patients instead of resolving their expressions of pain, discomfort or fear.
“Medication is probably the most cruel thing you can do that person,” Ms Falvin said.
“It makes you feel more frightened because your mind is scrambled, it feels like there’s a flock a seagulls going around your head and someone is saying hey here, let’s pop more seagulls on, let’s make you more confused.
“Sometimes we can’t talk at all, just please be patient and look for clues.”
The grandmother’s story has been posted to the NPS Medicinewise website, a non-for-profit in the health sector.
“I really think the video is a lesson in empathy,” clinical lead Kara Joyce said.
“I honestly don’t think the program would’ve been complete without her. We often don’t get to hear the voice of someone with dementia.”
Educators have already reached out to more than 1,000 aged care facilities.