Greetings from Yun-Hee, Director of StepUp

Happy New Year to you all!
Our thoughts are with those affected by the recent bushfires and hope that you are keeping safe during these challenging times. Thank you for your continued involvement with StepUp for Dementia Research.

In the launch year of 2019, an encouraging number of more than 800 Australians signed up for dementia research. In 2020 my inspiration is to build on, and even make registrations reach five times more, numbering 4000 Australians, as I believe your inspiration would support this too!

In order to do this we would appreciate your help with continuing to spread the word. A great way to do this is by telling your family and friends that research opportunities are available, through enrolments with StepUp for Dementia Research. The more people who get involved, the greater the chance we have to improve dementia diagnosis, treatment, quality of care and even one day find a cure.

Best wishes for 2020, and thank you again for joining us on this journey to power the next dementia breakthrough!

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

Are you fully registered?

📢 Please complete the full registration process. Without completing these steps you will not be matched to studies.

📢 If you are a caregiver of people living with dementia, you can sign up on behalf of them under your account as well as sign up yourself. If the volunteer under your account is matched to studies, the researchers will contact you to explain the study.

📢 If you signed up on behalf of someone else, you might be asked to upload photo identification and/or a proxy documen

t such as a power of attorney. Your profile information will indicate which items are needed. Please note that the volunteer will not be matched to studies until you upload the relevant documents.

Boost your brain health with these three New Year's resolution tips

Research shows that a third of dementia cases could be avoided or delayed by adopting a healthier lifestyle^{^[i]}. Here are some brain-healthy ideas for the New Year.

Get Active

Physical exercise encourages blood flow to the brain and new brain cells to grow. It also lowers your risk for conditions such as heart disease, obesity, and depression which can impact brain health. Australia’s national guidelines recommend at least 30 minutes of daily activity^{^[ii]}.

Try Something New

What is something you have always wanted to do or try? Learning a new hobby, language or skill can build new brain cells and strengthen the connections between them.

Socialise

For maximum impact, can you combine the above two with other people? Socialising stimulates large parts of the brain and may help build a brain reserve or “backup” that copes better with ageing.

[i] https://www.thelancet.com/commissions/dementia2017
[ii] https://www1.health.gov.au/internet/main/publishing.nsf/content/3244D38BBBEBD284CA257BF0001FA1A7/$File/choosehealth-brochure.pdf

A Call to Action

The average drug that comes to market typically has 20-30 years of research behind it. A recent study suggested that it would likely take thousands of participants and a 3-4 year wait before we could see if a drug delays or prevents the onset of dementia symptoms. Read More

Graeme Samuel, the Head of Dementia Australia, and an ambassador for StepUp for Dementia Research, urges,

“If I can in any way at all … influence, persuade, encourage, exhort people who are concerned about dementia, to become volunteers, then that would be a very satisfying outcome. What we want is a very large cohort. Not of a few hundred. Not even of a few thousand, but of ten thousand or twenty thousand people in Australia who are saying, we are prepared to assist the half a million people who are currently living with dementia.”

If you haven’t already done so, the link to register for StepUp for Dementia Research is here.

Dementia News

Professor Nikolai Petrovsky of Flinders University has shown a vaccine he developed to waylay dementia to work with mice. Human trials are anticipated to commence within a couple of years. Read more about it here.

StepUp for Dementia Research in numbers

Current studies on the StepUp for Dementia Research Website

STUDY SNAPSHOT - Changed behaviours associated with memory and cognitive decline (UNIVERSITY OF NEW SOUTH WALES)

What is it about?

The study wants to understand how people with dementia would like others to react to the behaviour changes they have experienced, or anticipate experiencing, since developing the condition. These changes might include getting more upset, angry, worried or sad than usual, seeing or thinking things that aren’t real, difficulties sleeping, wandering, shouting or repetitive behaviours. Often these changes are termed Behavioural and Psychological Symptoms of Dementia (BPSD), which some people feel is inappropriate. The research team hope to use the study findings to update clinical procedures and guidelines for healthcare workers.

Who is the study suited to?
The study is looking to interview duos of people, one with a formal diagnosis of dementia and the other being a family member or carer. Both participants would need to be able to provide individual consent. Recruitment is nationwide with the option for interstate participants to complete the interview over the phone.

STUDY SNAPSHOT - Caregivers’ experiences of medication management advice for people with dementia at hospital discharge (UNIVERSITY OF SYDNEY)

What is it about?
The study wants to understand more about the guidance carers receive upon hospital discharge of their family member with dementia, regarding their safe use of medication.

Who is the study suited to?
The study is looking to interview the carers of people living with dementia who have been discharged from hospital within the last 12 months. Recruitment is nationwide with the option for interstate participants to complete the one-hour interviews over the phone. Participants will receive a $50 gift card for their time.

Other studies currently looking for volunteers through StepUp for Dementia Research

Brain Training Trial: Balance, Resistance, or Interval Training Trial: A Randomised Controlled Trial of Three Exercise Modalities in Mild Cognitive Impairment
Studying the volunteers' motivation, needs, wellbeing and experiences in StepUp for Dementia Research online platform
The Auditory Ageing and Cognitive Impairment (AUDACIOUS) Study
Gait and Cognition Study
Habits Study: What role do habits play in maintaining physical activity in older people?
INSPIRED-II – Younger Onset Dementia

How can I get involved in studies?

You should be automatically matched to studies. Please login to 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 study but it does not appear in 'My Studies', please review your personal or health information by logging into StepUp website.

Making our service better

Thank you to everyone who completed our survey evaluating our service. It was great to see so much positive feedback, and also some helpful suggestions on ways we can make StepUp for Dementia Research better. Here are a just few highlights from what you said:

Out of the over 300 of you who participated in our evaluation survey,

"88% of you would recommend StepUp to others"

"Most of you registered to benefit mankind and improve dementia prevention, diagnosis, care and treatment."

68% of you had a positive experience with StepUp as only a quarter of you have been matched to a study through StepUp for Dementia Research. We are working to improve this figure. Please don’t be disheartened if you haven’t been matched with any research yet. New studies are being added to StepUp for Dementia Research all the time. When you are matched to a study, the researchers will contact you.

Networking

If you would like some promotional material to distribute among your networks, please contact the StepUp team by email stepup.research@sydney.edu.au or call us at 1800-7837-123.

Thank you for your support from the StepUp for Dementia Research team