Michelle Treasure’s mother lived with dementia at home, and in residential aged care, for more than 12 years. She passed away in March.
‘I wish I had known about supported decision-making earlier,’ Michelle said in her written statement to the Senate Inquiry in the Age Care Bill 2024.
‘Once I understood and practiced [it] … I started asking her more questions about routine things that I thought I knew. Although I didn’t always get a verbal answer, nor the answer I expected or liked, Mum seemed happier and more engaged.
‘I learned to read Mum’s body language and change what I was doing dependant on what she was telling me.
‘I had to put my own thoughts and feelings aside and do what Mum wanted and most importantly to stop doing what she didn’t want.’
Michelle, who is a member of OPAN’s National Older Persons Reference Group, identities 2 pivotal points in her mother’s aged care journey: when she received her dementia diagnosis and when she was told she needed 24/7 care.
Unnecessary heartbreak
‘Intervention at these points would have saved much unnecessary heartbreak and trauma and set the scene for Mum retaining control over her life and dignity,’ she wrote in her statement.
‘At every stage, whilst attempting to get appropriate aged care for Mum, our life was full of confusion, lack of understanding, lack of and support, misinformation and often very real trauma. There are horror stories to be told at every step.
‘How much better it could have been for Mum, and easier for me, to have just paused in the process to understand what was happening.
‘We could have made informed decisions and explored options as to what we could do to make sure her wishes were honoured.
Advocates needed at vital stages
‘I believe it is imperative, at these and other vital stages, that mandatory assistance is provided by specialised age care advocates who are trained in all matters of supported decision-making and … every endeavour is made to uphold the person’s wishes.
‘This kind of support would make a world of difference for older people requiring aged care.’
Read what Michelle told the Senate inquiry on the Parliament of Australia website.
View our new Aged Care Act webpage for updates.
