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June 2021

Winter Greetings from the StepUp for Dementia Research Team

We hope this letter finds you well and enjoying a newer sense of security as the vaccination program is rolled out more widely. For those in Victoria we hope for a swift resolution and return to increased freedoms as soon as possible.

From Plan to Impact
As we continue to address COVID-19, we must maintain dementia as a priority. A new report released last week by the global peak body, Alzheimer’s Disease International, provides an update on the progress towards the World Health Organization’s (WHO) action plan on the public health response to dementia 2017-2025. The WHO’s target was to have national dementia response plans for 146 countries. Three years on, 40 countries have done so. Australia is mentioned in the report for its advanced planning of a yet-to-be-released dementia strategy, with the recent Australian Government announcement of $229 million investment in dementia care as part of the federal budget (see box below).

A Roadmap towards Better Care

Dementia Australia’s roadmap for care was also highlighted in the report. The roadmap focuses on:
  • Developing specialist and integrated dementia support pathways,
  • Building the dementia capability of the aged care workforce, and
  • Designing and implementing a set of dementia-friendly standards to create physical environments that support people living with dementia to be as independent as possible.  
It is hoped that with your continued support, StepUp for Dementia Research will be able to contribute to fast-tracking research and evaluation of this much needed investment and strategy plan. And in turn, the hopeful positive impact that it may have on the lives of the half a million Australians living with dementia, and the almost 1.6 million people involved in their care.
 
Please also look out for a survey that we will be circulating shortly to obtain your perspectives on impact of the COVID-19 pandemic on the life and wellbeing of people living with dementia and care partners and their access to support and services in Australia.

Best wishes,
Professor Yun-Hee Jeon
Susan and Isaac Wakil Professor of Healthy Ageing  
Faculty of Medicine and Health
The University of Sydney
 

A Significant Package
 
Key measures related to the Government’s pledge of $229.4 million to improving the quality of life and care for people living with dementia include:
  • Dementia training for an additional 1,000 GPs per year, plus 3,200 personal care workers to operate as leaders in dementia care in their organisations
  • An expansion of the National Dementia Support Program, expected to provide around 30,000 people with timely access to counselling, education, support groups and peer mentoring
  • An additional outreach capability for the National Dementia Helpline
  • More support at diagnosis for people to access the services they need
  • A specific focus on dementia in aged care assessments and care planning
  • An increase in the number of care minutes provided to people in residential aged care to support person-centres practices
  • Increased availability of respite places
  • Improvements in aged care regulation such as enhanced transparency about provider performance, clearer guidelines on the use of restraint, and the adoption of dementia friendly building practices

Why do we need StepUp for Dementia Research? 

 
Dennis Frost is an active dementia advocate and also a co-chair of Public Involvement Panel member of StepUp for Dementia Research. Since his diagnosis with frontotemporal dementia in 2013, he has been actively involved in dementia related research. He shared his journey and challenges he found as well as the importance of StepUp for Dementia Research. Please click here to read his full story.

Making Dementia Research More Accessible

Having been a professor of ageing and mental health for over 30 years, I know intimately how costly it is to find and screen research participants.

A lack of participants can result in drug trials being shut down. As a researcher, my passion is to find treatments for Alzheimer’s disease, a type of dementia and better ways to help people with dementia and their families. Without appropriate participants, or a large enough sample of the population, we run the risk of failing.

As an Advisory Board member of StepUp for Dementia Research I am invested in seeing this project succeed as it has in the UK and US, where thousands of volunteers have the opportunity to join studies and researchers can spend their time and research funds honing the science rather than on recruitment strategies. StepUp for Dementia Research will revolutionise the way researchers find volunteers while bringing the public closer to the research and science behind medical breakthroughs and scientific inquiry. To read more, please click here

By Scientia Professor Henry Brodaty AO
Co-Director Centre for Healthy Brain Ageing (CHeBA), UNSW Sydney
Director Dementia Centre for Research Collaboration

Studies currently looking for participants on StepUp

The EXCEL Study (EXercise for Cognitive hEaLth)

This study is running by University of Melbourne. The aim of the EXCEL Study is to trial a home-based physical activity program to help middle and older aged people who experience memory concerns and troubles with low mood, anxiety or stress to meet physical activity guidelines. The study is delivered using information and communication technology (ICT), using online, email and video chat platforms.

Online training and support group for people with early stage dementia and e-learning course for care partners
University of New South Wales is looking for people living with dementia and care partners. The group will run once a week for 10 weeks and each session will last up to 2 hours. Each group member will be given a ‘SHAPE iPad’, where they will be able to join the group online at the touch of a button! Participants will be supported to develop skills in areas including decision-making, symptom management, social interaction, healthy habits, adapting and coping.

 

SENSE-cog Montreal Cognitive Assessment validation study

Macquarie University research team is looking for NSW residents aged over 60 with hearing or vision difficulties to develop new versions of a widely used assessment of memory – the Montreal Cognitive Assessment (MoCA). The MoCA is the most widely used memory assessment in the world. Unfortunately, the MoCA relies on people having good hearing and vision. Someone might fail the MoCA (suggesting possible dementia) when they have a hearing or vision problem. The team has developed new versions of the MoCA to help improve assessment of memory.

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

What's New - recent dementia research

The leading hypothesis on the cause of Alzheimer’s is looking shaky, following a new paper that pooled data from several studies to find that strategies to reduce amyloid levels in the brain do not improve cognition. Read about the study findings here.

Evaluation of StepUp for Dementia Research 

The director of StepUp for Dementia Research, Professor Yun-Hee Jeon, talks about how StepUp for Dementia Research works and the findings from the volunteer evaluation surveys. Please watch her presentation here.
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Our mailing address is:
Susan Wakil School of Nursing and Midwifery
University of Sydney
Level 1, Rm234, RC Mills Building (A26), Camperdown, NSW 2050

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