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October 2022

Contents

Pictured from left to right. Top row: Nora Wong, Henry Brodaty and Yun-Hee Jeon. Bottom row: Lee-Fay Low, Lyn Phillipson, Meredith Gresham and Amy Tan.

Meet the Australian Research Team

Forward with Dementia is brought to you by an international partnership of clinicians, researchers, people with dementia and carers across five countries: Australia, Canada, Netherlands, Poland and the UK. We share a common mission to better support people with dementia and carers after diagnosis.

Websites and resources have been created in each country and can be accessed via the international landing page.

Meet the Australian research team who created the Australian website, campaign, tools and resources:

Scientia Professor Henry Brodaty AO is a researcher, clinician, policy advisor and strong advocate for people with dementia and their carers. At UNSW Sydney, he is Scientia Professor of Ageing and Mental Health and Co-Director of the Centre for Healthy Brain Ageing. Henry has over 700 publications in refereed journals, and he is a senior psychogeriatrician at Prince of Wales Hospital.

Professor Lee-Fay Low is Professor in Ageing and Health, University of Sydney. Lee-Fay is a registered psychologist with a PhD in psychiatric epidemiology and conducts research that she hopes will make a difference in the world. Her main areas of expertise are in rehabilitation and post-diagnostic support for people with dementia, home and residential care for older people, the impact of COVID-19 on people with dementia, stigma and dementia literacy, and people from culturally and linguistically diverse backgrounds.

Professor Yun-Hee Jeon is Susan and Isaac Wakil Professor of Healthy Ageing at the University of Sydney. Yun-Hee is a registered nurse and her research focuses on improving the health and wellbeing of older people with dementia and other chronic illnesses through, for example, models of care for person centred care, reablement and rehabilitation, and clinical leadership in long-term care settings. As Director of StepUp for Dementia Research and StepUp for Ageing Research, she also leads a number of initiatives for public and patient involvement in research and citizen science.

Associate Professor Lyn Phillipson is a Principal Research Fellow in the School of Health and Society at the University of Wollongong. Lyn is an award-winning public health academic engaged in research and action to promote aged and dementia friendly communities. Lyn uses qualitative and participatory methods to work with older people to promote understanding and change in the social, physical and service environments that contribute to their wellbeing.  

Dr Meredith Gresham is a Research Fellow at Centre for Healthy Brain Ageing UNSW Sydney. Meredith is an occupational therapist and the study coordinator for Forward with Dementia. Her research activities include education of care partners of people living with dementia, reablement in dementia, dementia education of aged care staff, modification of the built environment to promote independence and function of people living with dementia and the use of novel bidet assistive technology in personal care of frail older people and those living with dementia.

Research officers and assistants involved in the project include:
  • Ms Nora Wong, University of NSW
  • Dr Danika Hall, University of Wollongong.
  • Dr Amy Tan, University of Sydney
  • Dr Patricia Knight, University of Sydney
  • Mr Jacky Zheng, University of Sydney
  • Ms Issra Allam, University of Sydney
To contact the Australian research team, please email: forwardwithdementia@unsw.edu.au
 

Collaborators

We extend sincere thanks to the people living with dementia, carers and health professionals who have generously given of their time and expertise to contribute to the research and development of Forward with Dementia Australia. We would also like to thank our collaborators:

Background and funding

Forward with Dementia is the result of an international research project, COGNISANCE.

COGNISANCE was awarded by the European Union (EU) Joint Programme – Neurodegenerative Disease Research (JPND), a global research initiative aimed at tackling the challenge of neurodegenerative diseases. JPND aims to increase coordination between participating countries in research aimed at finding causes, developing cures, and identifying appropriate ways to care for those with neurodegenerative diseases. National health and medical funding bodies in each country funded this work.

The world of dementia is changing

 
Over the last few years dementia has been in spotlight with the Aged Care Royal Commission. Horrific stories have played out in the media. COVID-19 highlighted the vulnerability and isolation of older people. The 2022 HammondCare International Dementia Conference ‘Change is in the Air – Brave New World’, provided some balance by highlighting the humanity and innovation that have, and always will be, in this space.
 
The conference, in Sydney from 8-9 September, covered topics from dementia prevention to death and dying. A notable focus was early intervention for both people living with dementia and family supporters. Forward with Dementia researcher Professor Yun-Hee Jeon summarised evidence-based rehabilitation (and prevention) strategies supported by the World Health Organisation.

Dr Meredith Gresham presented the Forward with Dementia program. Ton Gauci and Holly Markwell showcased an evidence-based, intensive residential program for people with dementia and carers ‘Staying at Home’. Supported by the Australian Government for national roll out, this program is designed to give people with dementia, and carers, skills, access to supports and confidence to remain where they want to be – at home.
 
A lively discussion focussed on the way in which small, ‘cottage model’ aged care homes are a true home-away-from-home, where residents with dementia have agency in their daily lives. After the pandemic, these models demonstrated superiority in managing infection control and consequently buoyed quality of life for residents throughout the pandemic.
 
Hope is on the horizon for the future. Keynote address by Prof Craig Ritchie from the University of Edinburgh presented on the mid-life origins of dementia. Risk factors, such as hearing loss, smoking, brain injury and social isolation etc. are modifiable. These can be addressed through individual prevention plans and public health policies.
 
The key message is to be proactive. We must look after ourselves in mid-life to reduce our risk of dementia. All levels of governments need to have public health policies and programs in place to support our ageing population. Importantly, we need to address the fear and stigma of dementia which is a barrier to diagnosis. We must encourage earlier diagnosis and use of the emerging rehabilitation and support programs so that we can positively move forward with dementia.

Becoming a Dementia Advocate

Bobby Redman

I worked as a practicing psychologist up until 2014. In 2015, I started undergoing tests when I noticed changes in my functioning, and that friends were commenting on changes in my personality and behaviour.

Following my initial diagnosis, I started researching everything about dementia and acting on this research. I made the decision that I could either sit back and let dementia take me, or I could fight back and do everything in my power to maintain my functioning and keep living my life to the full.

It was at that time I became a Dementia Advocate with Dementia Australia. I have also continued volunteering with Rotary Australia and the Australian Red Cross.

I began to speak publicly, spreading awareness and knowledge, and giving support to those struggling with the disease. I also co-hosted peer support groups with Dementia Alliance International. I find it therapeutic to share my story, and to encourage others not to give up.

My already busy life became busier, but it was a good busy … a busyness that gave me a purpose, and gave the dementia in my life a purpose. 

Dementia advocacy has increased my social interaction and my will to keep going.  I encourage others living with dementia, or caring for someone with dementia to consider becoming an advocate and undertake the Dementia Advocate Training through Dementia Australia. I now represent and support other dementia advocates as Chair of the Dementia Australia Advisory Committee.

I work with others in my local area to establish a Dementia Alliance, as part of becoming a Dementia Friendly Community. We work together to support people living with dementia to continue engaging in the activities that are important to them. Visit the Dementia Friendly website to check if there is a Dementia Alliance in your area. If there is not, contact Dementia Australia about starting one.

My involvement in dementia research has also given me knowledge and hope. I can keep up with all that is happening, plus it gives me the opportunity to hopefully improve the future for people living with dementia. StepUp for Dementia Research is the first systematic and inclusive way for dementia researchers to recruit participants in Australia. I find it helps to keep me informed about research projects that I may not otherwise hear about. You can sign-up to find out more about different research studies and opportunities to participate.

Becoming a Dementia Advocate

Bill Yeates

After being diagnosed with Younger Onset Alzheimer's Disease in July 2019, I found one of the best ways of adopting a positive mindset and moving forward with my life was to become an advocate.

Whether you are working for an organisation, such as Dementia Alliance International or Dementia Australia, or being a self-advocate, the whole notion of being able to make a difference in the lives of people who are living with dementia, is for me, a very important aspect of the person I want to be.

Becoming an advocate has helped me to create a better life that I value, by

  • having a voice and sharing my experiences, insights and ideas
  • providing help, guidance and support to others who are also living with dementia.
  • working towards reducing the stigma that is attached to receiving a diagnosis of dementia.

Firstly, I joined Dementia Alliance International as a member in February 2020, was appointed a Director in December 2021 and then Vice Chair in 2022.

​Secondly, I joined the Dementia Advocates Program that is run by Dementia Australia, where I have been involved in:

  • reviewing applications for dementia research and working with researchers
  • providing feedback on policy and programs
  • sharing my thoughts, ideas and experience in surveys and workshops
  • joining focus groups for resource and in-service development.

​Thirdly, I became a member of the co-design group that was involved in setting up the Forward with Dementia website.

Fourthly, I became a member of the Focus Group for the Global Dementia Observatory Knowledge Exchange Platform (GDO KEP) which is being developed by the World Health Organisation to highlight good practices in dementia care from around the world. For information, you can go to the website: GDO KEP (globaldementia.org)

​Throughout this time, I’ve had numerous media opportunities (including television and print news as well as podcasts) and I’ve been involved in community initiatives to raise public awareness of dementia in the local community. This includes the Hello Initiative, and the Ocean Rockpool Tour.

More recently I have presented at the 35th Global Conference of Alzheimer’ Disease International in London in June 2022 and the Hammond Care International Conference on Dementia in Sydney in September 2022. My goal in attending each of these conferences was to show how I manage my diagnosis of Younger Onset Alzheimer’s Disease, focusing particularly on lifestyle changes I’ve made, and how they enabled me to lead a better life. 

As time has passed, I am finding new ways of becoming a better advocate. I encourage all people living with dementia to consider becoming an advocate. By sharing our experiences and our stories we help to reduce dementia-related stigma, and we help to inform and empower others. This creates positive change with and for people living with dementia. For more information, visit my website: https://www.awakeningyourpositivity.com

Becoming a Dementia Advocate

Val Fell

Val Fell was the primary carer for her husband, Ian, who lived with dementia from 2006 to 2013. Ian had been a Fairfax journalist for 40 years, retiring as the General Manager of the Illawarra Mercury (a newspaper in the Illawarra region of NSW).

After Ian’s diagnosis, they both became socially isolated due to dementia-related stigma. Val joined a support group for carers of people with dementia and found the social interaction, help, and advice from others with lived experience to be invaluable. After Ian passed away, she wanted to help others as she had been helped.

Val completed the Support Group Facilitator course with Dementia Australia in 2013 and formed the Corrimal Dementia Carers Support Group that same year. She continues to lead the group today as a volunteer and is greatly valued for her empathy, willingness to help, and expert knowledge of the aged care system.

Val has organised the annual Illawarra Public Forum on Dementia since 2012. This accessible event aims to provide information about dementia, dementia research and strategies to assist in the caring role. It also connects people living with dementia and their carers to support and advocacy services locally available. The 10th Annual Forum was held this week in Wollongong, NSW, and, at 93, Val is still active on the volunteer working party and spoke in a panel discussion.

Earlier this year Val was appointed to the new Council of Elders which engages widely on many aspects of aged care from the perspective of the quality and safety of care and the rights and dignity of older people. This year, Val received the Medal of the Order of Australia (OAM), and in 2020 she was awarded Wollongong’s Senior Citizen of the Year. She also works tirelessly as a dementia advocate and ambassador for the Council on the Ageing (COTA) and the Older Persons Advocacy Network (OPAN).

Val believes that education and knowledge have helped her to become a stronger advocate. She is currently studying a Bachelor of Dementia Care, having completed two Massive Open Online Courses in Dementia at the Wicking Dementia Research and Education Centre, University of Tasmania in 2017.

Website resources

We are closing our printing service for paper copies of Forward with Dementia resources. If you would like to order these, please do so using the order form here by 30 November 2022.
We will continue to provide resources online so you can download and print them yourself as needed. For online resources visit either:
People with dementia and carers survey update

A huge THANK YOU to all who participated in the Forward with Dementia evaluation survey. For those who completed the survey as a person with dementia or as a carer, we have offered a prize draw to win one of ten $50 shopping vouchers. We have drawn and contacted the winners via email on 31st August 2022.

Forward with Dementia information

Read About Us or email forwardwithdementia@unsw.edu.au or leave a message on Tel: (02) 9065 7307. Follow us on Facebook, Twitter and YouTube (see links at the bottom of this email).

Forward with Dementia is part of the COGNISANCE project. The project was awarded by the European Union Joint Program on Neurodegenerative Disorders and in Australia is funded by the National Health and Medical Research Council.

This project has been approved by the UNSW Human Research Ethics Committee. Project number HC210560 and HC 210308.

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Centre for Healthy Brain Ageing (CHeBA)
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