How we are tackling dementia and stigma

A language app to improve diagnosis and peer-support dementia coaching are some of the Sydney projects aiming to tackle the obstacles and stigma surrounding dementia.

Our people and projects are part of the global discussion aiming to raise awareness and challenge the stigma that surrounds dementia this September.

Here’s six people and projects worth talking about:

1. Revolutionising how people connect with dementia research 

A new online matching service, StepUp for Dementia, is revolutionising how people with dementia and researchers connect, fast-tracking more inclusive dementia research across Australia. The service is also available via post or phone.

Similar to popular dating apps, the   draws on characteristics such as age, location and diagnosis to match volunteers with researchers carrying out studies in dementia prevention, diagnosis, treatment, care and cure.

"The stigma around dementia means it can be hard to recruit participants, especially those in the early stages likely to benefit most from our research but reluctant to talk about their symptoms or diagnosis," said  Professor Yun-Hee Jeon , Susan and Isaac Wakil Professor of Healthy Ageing who leads the initiative.

Professor Jeon adds that stigma is also within the healthcare sector where health professionals are often reluctant to talk to their patients about dementia research - programs such as StepUp for Dementia Research can generate hope for those affected by dementia, directly and indirectly, and offer them a unique opportunity to contribute to society.

"Our hope is this service will empower people with dementia, their families, carers and the general public to make informed decisions and to have a voice in shaping the future of dementia research."

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2. Advocating for living well with dementia

Associate Professor Lee-Fay Low is using an innovative approach to help people with dementia lead fulfilling and engaged lives. 

"Just like with any other health condition, we believe the right support can help people with dementia, their carers and family manage the impact of dementia and live well," Associate Professor Low.

"But following a dementia diagnosis many people withdraw from their usual activities, friends and family for fear they will be embarrassed. This can lead to isolation, immense grief or depression.

"Giving the right post-diagnostic support, tools and strategies could change this."

Associate Professor Low leads the Dementia Lifestyle Coach pilot* study which aims to do just that. The pilot program is a collaboration between the University’s Faculty of Health Sciences and Brain and Mind Centre. It provides coaching and peer support to help people newly diagnosed with dementia cope with their prognosis and stay active and involved in their lives and community. *Please note recruitment for the trial has now closed.

"We’ve learnt from the Dementia Lifestyle Coach participants how much self-stigma people with dementia have," said Associate Professor Low.

"They lose confidence in their abilities and become anxious because of their diagnosis. Sometimes families take over more than they need to. Through counselling and meeting peers who are living well with dementia, it helps them realise that they can keep living their lives, even though they have trouble with memory, planning or expressing themselves."

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3. Partnering with people living with dementia for better research outcomes

The University is fortunate to have Bobby Redman as a partner on a number of projects. Bobby and others living with dementia are a critical part of our research teams. Their experience is vital for conceptualising and advising on projects, as well as advocating for them.

Bobby was diagnosed with frontotemporal dementia at age 66 after she noticed problems remembering the names of close friends and an inability to find the right words to express herself.

"My story is a bit different because with my psychology background I knew something was definitely wrong - but a dementia diagnosis is still a shock for anyone," said Bobby.

"And what’s probably hardest is that, like in my experience, many people with early dementia are just told to come back when things get worse or to get their things in order.

"But I’ve learnt that there are tools and strategies you can put in place to help manage the impact of dementia.

I want to try and help people see they can fight back. I think that’s the key....you can’t just give into it.

Bobby is a peer-supporter on the Dementia Lifestyle Coach pilot and an advisor for StepUp for Dementia.

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4. Improving our understanding of lesser-known dementia

Frontotemporal dementia (FTD) is Australia’s second most common type of dementia in adults before the age of 65 years. Early symptoms include changes in behaviour and language.

Professor Olivier Piguet is Professor of Clinical Neuropsychology and co-director of FRONTIER , the frontotemporal dementia clinical research group at the University’s Brain and Mind Centre. FRONTIER is dedicated to improving early diagnosis of FTD, understanding the causes and progression of this disease, and developing effective treatment and resources for both patients and their carers.

Less than a decade ago, Professor Piguet’s cousin was diagnosed with FTD at the age of 49 years, which has made his research much more personal.

One of the biggest obstacles in FTD is early diagnosis. Professor Piguet and his team have developed SYDBAT (Sydney Language Battery), an app for clinicians to distinguish different forms and patterns of language impairment.

SYDBAT will launch and be free to download in late September.

5. Promoting dementia risk factors 

Understanding dementia risk factors can promote a greater understanding, earlier diagnosis and better treatment of the medical condition.

Professor Sharon Naismith  is leading a new Centre of Research Excellence to Optimise Sleep in Brain Ageing and Neurodegeneration (CogSleep) which investigates the relationship between sleep disturbances and brain degeneration.

"Sleep as we now know it plays a key role in detoxifying the brain - so our brain is like a plumbing system and sleep facilitates that. It gets rid of all of the toxins and harmful proteins that we know are involved in many types of dementia," said Professor Naismith, Head of the Healthy Brain Ageing program at the University’s  Brain and Mind Centre.

A unique collaboration between the University’s multidisciplinary initiatives and the  Woolcock Institute of Medical Research , the Centre is investigating how sleep-wake disturbance contributes to neurodegeneration, conducts new clinical trials, and tests innovative technology to improve detection and treatment of sleep disturbance.

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6. Bringing people together

The  Sydney Dementia Network  aims to improve communication, collaboration and connection between University of Sydney researchers and the local health districts. Since being established in 2018 it now has more than 100 members.

The Network’s aims to focus on better tools and resources for dementia research, enhancing services for primary care, falls prevention and Aboriginal and Torres Strait Islander communities, improving research into the causes of dementia and facilitating clinical trials to prevent and treat dementia.

The Network is led by Professor Glenda Halliday, Professor Sharon Naismith, Professor Clement Loy and Dr Fiona Kumfor.

The second annual conference is being held on 13 November 2019.

Join the network


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