Aussies asked to step up for dementia research

The Advertiser

19-05-2025

This is branded content for StepUp for Dementia Research.
At 64, Bobby Redman was a busy psychologist in Sydney, juggling 60-hour work weeks, clients, interns, travel and a busy social calendar.
Life was full until subtle shifts began to unravel the rhythm of her days.
"I started really struggling to follow conversations, and as a psychologist, that's a pretty important part of the role. I was having to write a lot more notes, and then my actual paperwork was getting behind," said Bobby.
"I was a very organised person, but suddenly I was finding it really difficult to organise myself."
Bobby initially attributed the changes to burnout. But as things worsened post-retirement, close friends back in the UK noticed something deeper was wrong.
"They were saying, 'You're not the Bobby we know'," she said.
After initial pushback from her GP, Bobby persisted with seeing a neurologist, eventually receiving an official diagnosis of frontotemporal dementia in 2015.
The diagnosis understandably came as a shock and has changed Bobby's life dramatically, from struggling with organisation and sequencing, to having trouble following conversations.
But it also set her on a new path.
"I started to think I either give up and sit at home and do nothing, or I'm going to kick myself into gear and give it a purpose and do something about it," she said.
And that's exactly what she did. Bobby, now 76, lives independently on the Central Coast of New South Wales.
She manages many of the day-to-day challenges of dementia with the help of technology and pre-recorded prompts.
Despite the challenges, Bobby has become a powerful voice in dementia advocacy, speaking publicly, advising researchers, and helping to run dementia-friendly initiatives.
Her experience brings a human face to the realities often hidden behind the statistics.
There are more than 433,300 Australians currently living with dementia, and dementia is the second leading cause of death in Australia, the leading cause for women.
Now, a new national survey is aiming to help change the experiences of those living with dementia.
Launched via StepUp for Dementia Research and coordinated by the University of Canberra on behalf of the Australian Institute of Health and Welfare, the Living with Dementia Survey aims to collect insights from more than 2000 people living with dementia, as well as their carers.
It's the first time the Australian Government is asking people with dementia directly about their experiences -how they were diagnosed, the care they've received, challenges they've faced, and what they believe needs to change.
"This survey came from a critical need to hear directly from people living with dementia, and to learn more about their experiences, challenges and unmet needs," said Professor Yun-Hee Jeon, Director of StepUp for Dementia Research.
"When it comes to dementia research, data only tells part of the story. By capturing the firsthand perspectives of people living with dementia, we can uncover more about gaps in care, things like social isolation or accessibility issues, that might otherwise go unnoticed in other studies."
The survey will run from May to November 2025 and involves a confidential 60-minute phone interview. StepUp for Dementia Research is especially keen to hear from people in regional and rural areas, who have historically been underrepresented in dementia research and often face additional barriers to care.
"We encourage anyone living with dementia and their carers to participate, as your voices will shape more person-centred care and services responsive to the needs of people living with dementia," says Yun-Hee.
"Every survey response can help drive policy changes and innovative care models. This isn't just data, it's a roadmap for a more inclusive, supportive future for Australians living with dementia."
For Bobby, participating in the survey is not just an opportunity-it's a responsibility, and a way to provide hope that future generations will see better dementia services and care.
"There's still so much decision-makers get wrong [about dementia]. There are so many different types of dementia, there are different stages. There's the stereotype of what we're supposed to look like, how we're supposed to behave, and what's supposed to be wrong with us. People assume it's just about memory, but it's not for many of us," said Bobby.
"They need to recognise that we're all different, and we present differently. They need to see it as not just a statistic, not just data, that we're individuals, that we're human beings."
And she hopes others will join her.
"If we can get a really wide view from 2,000 people living with dementia on what it's like and what their issues are and how to work with them, it's just going to make such a difference to how things are done," says Bobby.
"It's that information can make the difference, not only to the person that completes the survey, but to the hundreds of thousands of people out there living with dementia. We can make things better for them."
This is branded content for StepUp for Dementia Research.
At 64, Bobby Redman was a busy psychologist in Sydney, juggling 60-hour work weeks, clients, interns, travel and a busy social calendar.
Life was full until subtle shifts began to unravel the rhythm of her days.
"I started really struggling to follow conversations, and as a psychologist, that's a pretty important part of the role. I was having to write a lot more notes, and then my actual paperwork was getting behind," said Bobby.
"I was a very organised person, but suddenly I was finding it really difficult to organise myself."
Bobby initially attributed the changes to burnout. But as things worsened post-retirement, close friends back in the UK noticed something deeper was wrong.
"They were saying, 'You're not the Bobby we know'," she said.
After initial pushback from her GP, Bobby persisted with seeing a neurologist, eventually receiving an official diagnosis of frontotemporal dementia in 2015.
The diagnosis understandably came as a shock and has changed Bobby's life dramatically, from struggling with organisation and sequencing, to having trouble following conversations.
But it also set her on a new path.
"I started to think I either give up and sit at home and do nothing, or I'm going to kick myself into gear and give it a purpose and do something about it," she said.
And that's exactly what she did. Bobby, now 76, lives independently on the Central Coast of New South Wales.
She manages many of the day-to-day challenges of dementia with the help of technology and pre-recorded prompts.
Despite the challenges, Bobby has become a powerful voice in dementia advocacy, speaking publicly, advising researchers, and helping to run dementia-friendly initiatives.
Her experience brings a human face to the realities often hidden behind the statistics.
There are more than 433,300 Australians currently living with dementia, and dementia is the second leading cause of death in Australia, the leading cause for women.
Now, a new national survey is aiming to help change the experiences of those living with dementia.
Launched via StepUp for Dementia Research and coordinated by the University of Canberra on behalf of the Australian Institute of Health and Welfare, the Living with Dementia Survey aims to collect insights from more than 2000 people living with dementia, as well as their carers.
It's the first time the Australian Government is asking people with dementia directly about their experiences -how they were diagnosed, the care they've received, challenges they've faced, and what they believe needs to change.
"This survey came from a critical need to hear directly from people living with dementia, and to learn more about their experiences, challenges and unmet needs," said Professor Yun-Hee Jeon, Director of StepUp for Dementia Research.
"When it comes to dementia research, data only tells part of the story. By capturing the firsthand perspectives of people living with dementia, we can uncover more about gaps in care, things like social isolation or accessibility issues, that might otherwise go unnoticed in other studies."
The survey will run from May to November 2025 and involves a confidential 60-minute phone interview. StepUp for Dementia Research is especially keen to hear from people in regional and rural areas, who have historically been underrepresented in dementia research and often face additional barriers to care.
"We encourage anyone living with dementia and their carers to participate, as your voices will shape more person-centred care and services responsive to the needs of people living with dementia," says Yun-Hee.
"Every survey response can help drive policy changes and innovative care models. This isn't just data, it's a roadmap for a more inclusive, supportive future for Australians living with dementia."
For Bobby, participating in the survey is not just an opportunity-it's a responsibility, and a way to provide hope that future generations will see better dementia services and care.
"There's still so much decision-makers get wrong [about dementia]. There are so many different types of dementia, there are different stages. There's the stereotype of what we're supposed to look like, how we're supposed to behave, and what's supposed to be wrong with us. People assume it's just about memory, but it's not for many of us," said Bobby.
"They need to recognise that we're all different, and we present differently. They need to see it as not just a statistic, not just data, that we're individuals, that we're human beings."
And she hopes others will join her.
"If we can get a really wide view from 2,000 people living with dementia on what it's like and what their issues are and how to work with them, it's just going to make such a difference to how things are done," says Bobby.
"It's that information can make the difference, not only to the person that completes the survey, but to the hundreds of thousands of people out there living with dementia. We can make things better for them."
This is branded content for StepUp for Dementia Research.
At 64, Bobby Redman was a busy psychologist in Sydney, juggling 60-hour work weeks, clients, interns, travel and a busy social calendar.
Life was full until subtle shifts began to unravel the rhythm of her days.
"I started really struggling to follow conversations, and as a psychologist, that's a pretty important part of the role. I was having to write a lot more notes, and then my actual paperwork was getting behind," said Bobby.
"I was a very organised person, but suddenly I was finding it really difficult to organise myself."
Bobby initially attributed the changes to burnout. But as things worsened post-retirement, close friends back in the UK noticed something deeper was wrong.
"They were saying, 'You're not the Bobby we know'," she said.
After initial pushback from her GP, Bobby persisted with seeing a neurologist, eventually receiving an official diagnosis of frontotemporal dementia in 2015.
The diagnosis understandably came as a shock and has changed Bobby's life dramatically, from struggling with organisation and sequencing, to having trouble following conversations.
But it also set her on a new path.
"I started to think I either give up and sit at home and do nothing, or I'm going to kick myself into gear and give it a purpose and do something about it," she said.
And that's exactly what she did. Bobby, now 76, lives independently on the Central Coast of New South Wales.
She manages many of the day-to-day challenges of dementia with the help of technology and pre-recorded prompts.
Despite the challenges, Bobby has become a powerful voice in dementia advocacy, speaking publicly, advising researchers, and helping to run dementia-friendly initiatives.
Her experience brings a human face to the realities often hidden behind the statistics.
There are more than 433,300 Australians currently living with dementia, and dementia is the second leading cause of death in Australia, the leading cause for women.
Now, a new national survey is aiming to help change the experiences of those living with dementia.
Launched via StepUp for Dementia Research and coordinated by the University of Canberra on behalf of the Australian Institute of Health and Welfare, the Living with Dementia Survey aims to collect insights from more than 2000 people living with dementia, as well as their carers.
It's the first time the Australian Government is asking people with dementia directly about their experiences -how they were diagnosed, the care they've received, challenges they've faced, and what they believe needs to change.
"This survey came from a critical need to hear directly from people living with dementia, and to learn more about their experiences, challenges and unmet needs," said Professor Yun-Hee Jeon, Director of StepUp for Dementia Research.
"When it comes to dementia research, data only tells part of the story. By capturing the firsthand perspectives of people living with dementia, we can uncover more about gaps in care, things like social isolation or accessibility issues, that might otherwise go unnoticed in other studies."
The survey will run from May to November 2025 and involves a confidential 60-minute phone interview. StepUp for Dementia Research is especially keen to hear from people in regional and rural areas, who have historically been underrepresented in dementia research and often face additional barriers to care.
"We encourage anyone living with dementia and their carers to participate, as your voices will shape more person-centred care and services responsive to the needs of people living with dementia," says Yun-Hee.
"Every survey response can help drive policy changes and innovative care models. This isn't just data, it's a roadmap for a more inclusive, supportive future for Australians living with dementia."
For Bobby, participating in the survey is not just an opportunity-it's a responsibility, and a way to provide hope that future generations will see better dementia services and care.
"There's still so much decision-makers get wrong [about dementia]. There are so many different types of dementia, there are different stages. There's the stereotype of what we're supposed to look like, how we're supposed to behave, and what's supposed to be wrong with us. People assume it's just about memory, but it's not for many of us," said Bobby.
"They need to recognise that we're all different, and we present differently. They need to see it as not just a statistic, not just data, that we're individuals, that we're human beings."
And she hopes others will join her.
"If we can get a really wide view from 2,000 people living with dementia on what it's like and what their issues are and how to work with them, it's just going to make such a difference to how things are done," says Bobby.
"It's that information can make the difference, not only to the person that completes the survey, but to the hundreds of thousands of people out there living with dementia. We can make things better for them."