Bobby Redman was still working as a psychologist when she first noticed her symptoms.
"My job was to listen to people, I worked with people with intellectual disabilities and their families," Ms Redman told ABC Radio Melbourne's The Conversation Hour.
"And suddenly, I was finding it really difficult to follow conversations and to hold on to what people were saying."
The 74-year-old said while she also though herself well-organised, she was no longer able to plan.
It prompted her to return home to the UK, where her friends and family were. They noticed changes in her personality.
"They said to me, 'you're just not the person we once knew, you're very different'," Ms Redman said.
At first, Ms Redman said she had shaken off her initial concerns, instead reassuring herself she was just tired, overworked and stressed.
"But then when my friends said it, the psychologist in me said … it's time to get checked," she said.
Known for being a go-with-the-flow person, Ms Redman said she was becoming increasingly more stubborn and argumentative.
"[My friends] said basically, 'you're really rude now'," she said.
Ms Redman then saw a neurologist who suggested she might have frontotemporal dementia and was told to come back in a year.
"That's when they did all the MRIs and I had the neurological testing, and they identified that I had mild cognitive impairment," she said.
The following year, she underwent the same tests. Her cognitive ability had significantly declined.
Concerns about what lies ahead
Ms Redman said she was "petrified" for her future.
"I work hard to try and stay in the present because I don't want to be thinking about it, because otherwise I just freeze up and you can't do anything," she said.
She does not have faith aged care homes can provide the support needed to dementia suffers.
"I'll do anything in my power to stay at home and live alone," she said.
So far Ms Redman has avoided her fears with help from technology.
"My phone is my carer and it tells me minute by minute what to do, and how to get through life."
Ms Redman said the experience of Clare Nowland — who was tasered by NSW police at a Cooma nursing home — was her "greatest fear".
"We know people in aged care don't understand us," she said.
She is calling on additional funding for education programs to aged care workers.
Identify with the person, not the disease
Ms Redman is not alone.
Anne Tudor's wife, Edie Mayhew, was diagnosed with younger onset dementia at 59.
The two of them decided to do whatever they could to raise awareness of the condition.
Ms Mayhew died 10 years later from dementia-related complications, but Ms Tudor continued their work.
In 2021, the Ballarat resident was awarded an Order of Australia for her work campaigning for better awareness and support.
"We need more people involved in care," she said.
"But more than anything, the education of people who work in the area is incredibly important, the right people are those that are open to learning and care.
"It's not that complicated, it's not about doing a job just for the money."
She believes change is happening, but it is slow.
Ms Tudor said she believed people often had troubles understanding and connecting to dementia suffers.
"But when human stories are told, it makes an incredible difference," she said.
"I think they begin to see that we're talking about human beings, human beings that still have capacity, have amazing history and are still there.
"How can you challenge yourself to be able to react and respond to a human being in a loving way, in a compassionate and understanding why, that's really what the message is."
Quality as well as quantity
Executive director of advocacy and research at Dementia Australia Kaele Stokes said more aged care workers were required in the sector but employees also needed to be better equipped to support those living with the condition.
"It's really important that if we have staff that are caring for people living with dementia, that they have the skills and capacity to be able to do that in a quality way," she said.
"It results in a much better outcome not only for the person living with dementia, but also for the staff themselves.
Dr Stokes said reforms such as the National Dementia Action Plan, which is currently being formulated by the federal government, would "frame activity" in the aged care sector.
She also said the sector had reflected on the findings from the royal commission into aged care quality and safety.
"We know about two thirds of people living in residential aged care will have a moderate to severe cognitive impairment, but there's not really been the mechanisms in place to [accommodate that]," she said.
While Dr Stokes said some facilities were delivering "incredible" care, training programs had the best results when undertaken by management staff, not just the carers.
"That's a really important cultural change that we need to see more consistently across the whole sector," she said.
