A Warm Hello from the StepUp Team
A warm hello to you all. We hope you are well. We have been working hard throughout COVID to make sure that the dementia community are seen and heard. With over 75% of COVID deaths from residential aged care facilities, we know that people with dementia were some of the hardest hit with some of the toughest restrictions. In June to August last year, StepUp ran a survey of, and in-depth interviews, with people living with dementia and care partners about their experience of the pandemic. Thank you to those 137 survey participants and 39 people who generously shared their personal stories with us. Early findings provided timely information for Dementia Australia's Discussion Paper launched at the 2020 Parliamentary Friends of Dementia event, "One day the support was gone". The paper can be accessed here.
The biggest theme to emerge was the need to address the loneliness and isolation experienced that many of you, and the Dementia Australia network, reported. In the paper, we call for a national aged care plan and list several practical recommendations which you can read more about below.
StepUp continues to be the leading place for people to come for dementia research. Last year, Australia saw major breakthroughs in new ways to diagnose dementia early, involved excited talk of the potential for a dementia vaccine, and upped the intensity of advocating for the human rights of people with dementia and their families. The team here at StepUp will continue to work hard to connect researchers with participants so that these important advances carry on into 2021. We have your back – which we can only do with your continued support – thank you.
Best wishes,
Professor Yun-Hee Jeon
on behalf of the StepUp team
Susan Wakil School of Nursing and Midwifery
Faculty of Medicine and Health
The University of Sydney
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Recommendation from Discussion Paper "One day the support was gone"
- Prioritising the mitigation of isolation and loneliness through mental health and aged care support services.
- Integrating essential visits safely back into aged care settings following any lockdown period.
- Extending infection control measures and training to carers so that essential visits could be maintained should emergency measures need to be reinstated again.
- Providing aged care services with alternatives to face-to-face options that promote meaningful participation and connection.
- Enlisting independent checks on aged care facilities to make sure that “lockdowns” are as brief as reasonably possible.
- Providing targeted support and respite services to family carers impacted by the pandemic.
- Profiling the most vulnerable who may require additional support.
- Including Australians living with dementia, families and carers in all future pandemic response planning and communication.
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Please meet our Public Involvement Panel member
Imelda Gilmore is an active dementia advocate and also a Public Involvement Panel member of StepUp for Dementia Research. She is sharing her thought about dementia research study. To hear her full story, please click here.
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Meet our Advisory Board member, Nicki Doyle
 For the last 2 years, I have been an Advisory Board member for StepUp for Dementia Research. I was invited to join the Advisory Board by Professor Yun-Hee Jeon, who started StepUp for Dementia Research in Australia, based on similar projects in the UK and the US. Dementia is an area I have a strong interest in.
As a clinician, prior to working at KPMG, I was very involved with people with dementia in a hospital setting and have also undertaken a number of projects at KPMG related to dementia. My Father-in-Law also had dementia, so I have personally experienced the challenges that come with having a family member with dementia. When Yun-Hee explained about the aims of StepUp for Dementia Research, I felt this was something that was really important and had the potential to positively impact dementia research, and in the future, support new ways to understand, better manage and support people with dementia, and hopefully identify a cure.
My hope is that through StepUp for Dementia Research we can get more Australians to understand the importance of dementia research and ultimately get people enthusiastic about participating in research. Therefore, my goal is to get more people signed up to the platform. If I can accomplish my goal, it will help dementia researchers have the opportunity to really stretch their capability and ensure they are able to explore and deliver different aspects of the disease to better enable supports for those living with dementia and their carers and enhance our understanding of causes, prevention and management. StepUp for Dementia Research has the potential to be a game changer around dementia research, and a lot can be achieved through its platform if we can encourage people to participate in it.
Research about dementia is important to all of us, as we all age, and will get older, despite how hard we try to stay young. Why not contribute to something that can help people now, while also helping to make things better for yourself in the future. This is the perfect way to contribute to supporting better outcomes for older Australians. One of the great aspects of StepUp for Dementia Research is that everyone over the age of 18 can be involved. You don't have to have dementia and you don’t have to be older. StepUp for Dementia Research allows you to put your name forward but doesn’t lock you into being involved in research. The choice is yours as to your level of involvement and what you get involved in. What this does is give you the opportunity to learn more about dementia and if you want, possibly get involved in a trial that might just make a breakthrough in the identification of dementia, in the management of dementia or potentially even in the cure of dementia. The impact on individuals, families and the community would be…immense. Thank you.
Nicki Doyle
Partner
Health, Ageing and Human Services
Management Consulting
KPMG
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Studies currently looking for participants on StepUp
Gait and Cognition study
University of Sydney research team is  exploring the relationship between gait (walking pattern) and thinking. Participation will involve completing some problem solving tasks and walking while wearing some sensors. This study is a one-time visit from the researcher and takes about 90 minutes to complete. Community dwelling adults aged 65 or over with/without walking problems can take part in this study.
Team Approach to Polypharmacy Evaluation and Reduction for General Practice patients with dementia
 People living with dementia often take many medicines. Some of these medicines can cause side effects. In earlier studies, they found some people with dementia continue to take medicines that may no longer benefit them or whether the benefits are less than the risk of side effects. Researchers from University of Western Australia is testing a way pharmacists and GPs can work together to safely reduce the number of medicines a person with dementia takes. They are looking for people live in the Perth community who have a diagnosis of dementia and take five or more medicines.
How can I get involved in studies?
There are more studies looking for participants on StepUp for Dementia Research. If your characteristics are matched to the study's eligibility criteria, then you should automatically be matched to the study. Please login here and check 'My Studies' to find out about all studies that you have been matched to. Please indicate your level of interest in participating in the study you have been matched to. That way the researcher will contact you according to your level of interest.
If you believe that you should be matched to a study but it does not appear in 'My Studies', please review your personal or health information by logging into your account on the StepUp website.
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What's New - recent dementia research
In the everyday busyness of life it is easy to forget things, and when we do it is typically harmless. However, an international research team found that forgetting to pay your bills, specifically credit card bills, could be an early warning sign for declining cognition. Read about the study findings here.
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