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February 2022

A Warm Hello from the StepUp for Dementia Research Team

As always, we hope this newsletter finds you well. The year 2022 brings StepUp for Dementia Research into its third year. Last year, we were most proud of our evaluation outcomes and publication (see below). This year, our resolution is to boost our volunteer numbers to 3000 and expand our service to ageing and aged care related research. Watch this space! 
For a few, the resurgence of COVID sadly meant more time in isolation over the festive break. However, hopefully, for many, it was a patiently awaited reunion with family and friends. 
Noticing dementia during the holiday season
The festive period is a common time of year for noticing signs of dementia in relatives. If it was the first time you saw your family in a while – especially after an extended separation due to COVID – you might have been confronted with quite a stark change or deterioration. Reductions in essential care and support during COVID have exacerbated things for people living with cognitive decline. Moreover, Christmas can be stressful, and if we are out of routine, this is when dementia can show up. Christmas dinner is quite the exercise in preparation, logistics and timing. While burning the turkey is by no means a symptom of dementia on its own, if this is accompanied by a change in personality, such as not being able to keep up with the banter like one would have in previous years, or struggling with names or repeating oneself, then these could be red flags to look out for.
A paper published at the end of last year, reviewed the current research on giving and receiving a diagnosis of dementia. For people with dementia, carers and practitioners, the process was generally described as a negative one. A summary of this paper can be read on our news page. As many of our StepUp for Dementia Research advocates have urged, it is important to seek support on this journey. A reminder that some helpful organisations to connect with are – National Dementia Helpline 1800 100 500 and Dementia Support Australia 1800 699 799. There is also a new website Forward with Dementia launched late 2021 (see below), of which I am a member of the research team. Forward with Dementia has a wide range of information especially for those who have recently been diagnosed with dementia. It seeks to change the common misconception of ‘there is nothing that can be done’ after a diagnosis of dementia.
StepUp continues to be the leading place for people to come for dementia research. The team here at StepUp will continue to work hard to connect researchers with volunteers so that important advances in dementia research carry on into 2022. We can only do with your continued support and thank you as always.
Best wishes,

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

Living with dementia is like “my good days and my bad days”

Eileen Taylor is a wife of fifty years, a mother to two sons and a toy poodle, and a grandmother to five. Eileen was a counsellor before she retired shortly after learning, at age 59 years, that she has the gene for Alzheimer’s disease. Eileen describes living with dementia as having “my good days and my bad days”. She says it is like hearing or seeing something for the first time, “My husband will talk to things we have done in our lives, places we’ve been, movies we’ve seen, and I’ll say, “oh, really?”.

Stepping back from the diagnosis
Eileen shares that one thing that has helped her and her husband, Doug, is to “externalise” the dementia. “We call it a dark fog, and when the fog is thick, it is not easy”, she says. “Having dementia is horrible, but you have to learn to live with it.  Every day is a new day”, she adds.

We’re not just participants, we are people
Eileen explains that after receiving her diagnosis, the doctors advised that she participate in a medical research trial in order to receive the very best care. Eileen talks about feeling very cared for during the trial, “they saw me as an individual. I didn’t feel like just a participant. Researchers need to know that we all have previous lives, they need to get to know the person”.

A negative surprise
However, Eileen was careful to temper expectations that not every trial is successful. She describes shock and disappointment, as well as a grief process, when after five years of being on a clinical trial from which she felt her cognition was benefiting, it was stopped abruptly because the researchers were not getting significant results. “It has not stopped me from going on another trial though”, she says.

Paying it forward
Eileen thinks that the concept of StepUp for Dementia Research is fantastic, because she does not know of any other place where you can sign up for research. For Eileen, she participates in research, “for my kids, and my grandkids, because I have the familial type of dementia”. She says, “I give as much as I can now living with dementia, to make it easier for our future generations living with dementia. Research is helping to find a cure, but also to help with a better quality of life. Dementia is not all end stage – there is a lot of living to be had before then.”  

Both Eileen and Dubhglas (her husband) are members of StepUp for Dementia Research Public Involvement Panel.

Interview with Professor Donna Waters

Professor Donna Waters is a registered nurse with 30 years of experience in nursing education, research, teaching, and the management of nursing, medical and health services research. Professor Waters has been the chair of the advisory committee for StepUp for Dementia Research since its inception when she was the Dean of the Susan Wakil School of Nursing and Midwifery, the home for the StepUp team.  
Professor Waters believes in striving for excellence in knowledge translation and finding new and better ways of approaching dementia research in Australia. She has been instrumental in supporting StepUp to become a nurturing environment both for people living with dementia, their family, and others affected by dementia, and for researchers dedicated to building new evidence for dementia care, diagnosis, treatment, and prevention. To see her interview, please click here.

Professor Donna Waters

Deputy Executive Dean (Projects) | Acting Head of School and Dean, Susan Wakil School of Nursing and Midwifery
Faculty of Medicine and Health | University of Sydney

All About StepUp for Dementia Research

If you would like to see our statistics by states/territories, please visit this webpage.  

Call to Action!

We kindly ask you to update your account details to ensure that we can match you to studies efficiently and accurately. Please log in to your account and check that your personal information is up to date by clicking on "here". 

Updating your profile information is important for you or your loved one to be matched to studies correctly. If you have a difficulty to update your information on StepUp for Dementia Research website, please email us at or call us at 1800-7387-123.

Upcoming study - Forward with Dementia

Your diagnosis is the first step in moving forward with dementia. 

Forward with Dementia is a new, dynamic, international partnership of clinicians, researchers, people with dementia and carers across Australia, Canada, Netherlands, Poland and the UK who share a common mission to better support people with dementia and carers after diagnosis. The website provides up-to-date, evidence-based information, practical suggestions and stories from people with dementia and carers, and tools to help people manage living with dementia.

Forward with Dementia is grounded in the knowledge that many people live full and meaningful lives after a dementia diagnosis. It was co-designed by people living with dementia, carers, international research academics and healthcare professionals. It provides information and resources people with dementia said they wanted and needed in the early stages but struggled to find.
You will be notified by StepUp for Dementia Research shortly if you are eligible for this study. In the meantime, visit the website to access information and resources.

New Studies currently looking for participants on StepUp

Preferences for care and support services for people with young-onset dementia and their support persons
Flinders University team is looking for people living with young-onset dementia and carers for an interview study. They would like to know which aspects of care and support services for people with young-onset dementia are important. This will help them to understand how services for people with young-onset dementia should be provided, from the perspective of the people who use them.
Preferences for deprescribing antihypertensive medicines in people living with dementia
This online survey study is being run by the University of Sydney. The aim of the study is to understand stakeholder preferences for possible benefits and harms of stopping antihypertensives (medicines for high blood pressure) for people living with dementia. They are looking for people living with dementia and carers.
Balance on the Brain
This project is running by the research team from Curtin University. The project is testing a new balance and walking program for people with mild cognitive impairment living in Western Australia to try and improve health, quality of life and reduce cognitive decline and falls. If you are assigned to intervention group, a physiotherapist will visit you 4 times and speak on the phone 6 times over a 6-month period. 

How can I get involved in studies?  

There are more studies looking for participants at StepUp for Dementia Research. If your characteristics match 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 the studies that you are eligible for. Please then indicate your level of interest in participating in the study. 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

Learning you have dementia - How can it be done better?

You may have a sense of something not being quite right. Your family and friends may suspect something too. Is it simply old age and a bit of forgetfulness – or is it something more? The decision to get checked out is a big one. A research team from the UK, recently published a review investigating the experience of receiving, and delivering, a diagnosis of dementia. Please click here for more about this study.

"Early Implementation and Evaluation of StepUp for Dementia Research: An Australia-Wide Dementia Research Participation and Public Engagement Platform"

StepUp for Dementia Research team published its first paper. This paper reports on StepUp’s development and early implementation. It showed that most of StepUp’s users are satisfied with the program, and that it is efficient in facilitating recruitment for studies. Some ideas are discussed to improve the diversity of participants. We thank our Public Involvement Panel and Project Advisory Board members for their support.

Please click here to access the full-text.
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Susan Wakil School of Nursing and Midwifery
University of Sydney
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