When Dimity Brassil's father was diagnosed with Lewy body dementia, the family rallied around to support him.
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But when he died 12 years ago, the family of storytellers realised they had lost all of his.
"We didn't capture his story. By the time that we thought we should, it was too late - he was unable to share it anymore," writer and teacher Ms Brassil tells AAP.
"Often we don't really realise how important it is until we can't do it anymore."
Recording memories can help the ageing patient retain a sense of self as they decline, document their stories for the benefit of their families after they have died and help people caring for them see who they were, not just their disease.
A dementia or Alzheimer's disease diagnosis in a loved one can add an extra layer of heartbreak to their death. Their last years or months may be spent as a virtual stranger as their memory fails.
They may not recognise their nearest and dearest. And very often all their treasured memories are lost.
Alzheimer's affects up to one in 10 Australians over 65, and that number triples over the age of 85. Meanwhile, about 400,000 Australians are thought to be living with dementia, with that number set to more than double by 2058.
An ageing population means the impact of these issues is only going to increase in the years to come.
There is a call to arms this Dementia Action Week (September 18-24) and World Alzheimer's Day (Thursday, September 21) to increase awareness about the fear and stigma patients face and the loss experienced by their families.
Moved by her father's lost history, Ms Brassil was determined to capture what she could of her family's past and sat down to interview her mother, Anne, now 90.
In the process of discovering the challenges and successes, trials and triumphs that had shaped her mother's life, Ms Brassil's interview revealed a side to her parents she had not previously been exposed to.
"(My parents) had been married for a long time before I was even born, so I never really knew them as young people who were in love," says Ms Brassil.
"I was so thrilled to hear how in love she was ... I don't think you really know that about your own parents."
The endeavour was so successful that five years ago the mother and daughter set up a business called A Lasting Tale - a service where professional writers interview elderly or terminally ill people about their lives to save their little piece of history.
"We often find that people contact us when there's been a precipitating event - (about a third of the time) it's in light of an Alzheimer's diagnosis," Ms Brassil says.
"The family projects forward to the future and they think 'oh my goodness, we have to capture these stories now'."
As well as resulting in a treasured keepsake for the family, the subject also benefits from the retelling of their past, even if it's just a moment to reflect.
Ms Brassil says doing the interviews seems to ease the depression and anxiety some elderly patients feel about losing their long-term memories.
One very downcast client spoke longingly about their extensive world travels, which prompted the family to book a trip all together to visit some of their favourite locations while there was still time, Ms Brassil says.
Another's son called to tell her he had learned more about his father's life in the first ten minutes of the recording than he had ever known.
The practice of recording these histories also greatly benefits the carers employed to look after Alzheimer's and dementia patients whose ability to bond with their patients is improved by understanding more about their lives before the ravages of the disease stole their stories.
Researchers at the University of Canberra say dementia support has been challenged by a lack of personal knowledge about the person being cared for.
"One highly effective solution to this problem is for people with dementia and their families to record and share their life stories," say the team exploring the benefits of digital storytelling in dementia care.
"Life-story work (which involves collecting memories and moments that are important to the person to assist them to regain their sense of self) has the potential to enhance person-centred care, improve quality of life and benefit the staff delivering care."
Ms Brassil says hopefully when the recordings are seen by carers in the future, it will help them see the real person "not just somebody who is living with Alzheimer's".
Australian Associated Press
