The role of research and community in improving dementia care

Did you know that every piece of progress we make in dementia care, from understanding risk factors to improving support for families, is shaped by research, and often by people living with dementia and the community?

In this episode of Voices in DREAM, Yashi speaks with Distinguished Professor Emeritus James Vickers, recent past Director of the Wicking Dementia Research and Education Centre (2018-2025), about how research and community participation improves dementia care and outcomes.

Tune in to learn about:

·         Why dementia research matters 

·         The type of research going on at the Wicking Dementia Research and Education Centre 

·         How community involvement shapes knowledge and care

·         How research translates into better, person-centred dementia support

If you work in aged care, research, or support someone living with dementia, this episode is a must-listen.

Transcript

SPEAKER_02 0:02

Did you know that every piece of progress we make in dementia care, from understanding risk factors to improving support for families, is shaped by research and often by the people living with dementia and people from the communities. Hello and welcome to Voices in Dream. This podcast is by the Dream Team, a collaboration between the Weeking Dementia Research and Education Centre and the Dementia Support Australia. Whether you're a support worker, a nurse, a volunteer, or someone who cares, then you are in the right place. Voices in Dream connects you to a community of HK workers to support you to support people living with dementia. I'm your host, Yashi, and each episode we share real stories, practical insights, and support for anyone involved in dementia care, especially those in respite settings. So let's learn together, one shift at a time. In this episode, I'm joined by uh distinguished Professor James Vickers again to explore how research helps us better understand dementia and improve the care we provide. Welcome back, James.

SPEAKER_00 1:07

Thank you, Yashi.

SPEAKER_02 1:08

James, I want to start with a very broad question today. Why is dementia research, research in particular, um, really important?

SPEAKER_00 1:16

No, that's an excellent question, and one that obviously drives a lot of the work that we do in the in the Wiking Centre. Um, it's important that we have the right evidence. There are all sorts of things that we could dream of coming up with, for example, in in uh in the provision of care, and we might rely on anecdotes or something we read in the paper or or whatever, but we don't really know often whether that's actually going to produce the outcomes that are best best for that person with dementia. Um I always say there's a bit there's a real difference between evidence-based practice and what you might call marketing-based practice. Trevor Burrus, Jr.

SPEAKER_02 1:55

Yeah. And what's the difference?

SPEAKER_00 1:56

Well, the difference is marketing often starts with just an idea, and people might think, well, my organization is now doing this particular activity, and that that looks good, and it's something we can put in a brochure or an ad, but you don't really know whether it's actually provided any real benefit. Whereas evidence-based practices is a little bit harder, and it often involves organizations committing to that process, but it's really doing something more systematic to evaluate whether any particular intervention or practice makes a real difference. And not every organization has to come up with that evidence themselves. Out there in the in the sort of the academic world, there are lots of people who tend to be working on similar issues, and they'll publish in hopefully reputable journals. And so sometimes it's enough to make sure that you've had a look at some of those examples in those journals, evaluate um their applicability to to the area that you're working in, and then see if you can translate some of that research that's been done somewhere else into hopefully again something useful in the context of where you work.

SPEAKER_02 3:09

Yep, so putting it into your practice. That's right, yeah.

SPEAKER_00 3:12

And then having a reasonable, I guess, reasonable confidence is likely to produce a good outcome.

SPEAKER_02 3:18

James, uh you were uh the director of the Weeking Dementia Research and Education Center. And you do a lot of work um in neurodegenerative, you know, research areas. Um and I really wanted to understand what are the main areas uh the weaking dementia research and education center currently focusing on?

SPEAKER_00 3:37

Yeah, so we have three broad areas of of research in in the center. There are a few things that sit outside some of those areas, but mostly of what we do fits into either um research on the care side, research into prevention, which is really dementia risk reduction, and then the third area, which is mostly laboratory-based research, is trying to understand the cause of dementia. And your listeners would likely be aware that there are dozens and dozens of different diseases and conditions that will lead to dementia. And even now, despite quite a lot of research, we don't have a particularly um uh high degree of consensus on what what causes those conditions and those changes in the brain. So that still is really important work to do.

SPEAKER_02 4:26

You mentioned looking at what causes it, and we've got educations, that's about prevention. I guess PDMOC, understanding more, all of this comes in there as well. And Keraside, which is our dream project.

SPEAKER_00 4:37

Absolutely. That that's why research is such an important part of the whole dream uh initiative. So that we can say, well, there's a number of things that we did as part of DREAM, let let's evaluate them again in a systematic way, and we'll work out which which which aspects were the most useful.

SPEAKER_02 4:55

What are some of the major studies or discoveries from Weeking that have expanded our understanding of dementia or influenced the care practices out there?

SPEAKER_00 5:03

Well, I think uh early on, a lot of our research uh into the brain changes that are associated with with Alzheimer's disease or lead up to Alzheimer's disease, they were quite important. And even at at one level, which was to show that, you know, whatever, I guess, mm-hmm cognitive or personality or behavioural changes that were associated with this this a particular form of dementia was actually due to very specific pathological or abnormal changes in the brain. It wasn't that people were trying to make anyone's life difficult or or it was something to do with aging that was a disease process. And I always say that's good news because like other diseases, then we should be able to do something to um, if not prevent that disease, at least lessen the impacts. So I think that was that was important work that we were involved with. Then also I think that um the research into care was was really vital. And as you mentioned, a big part of that is to for us to evaluate how effective some of our teaching programs have been. Um, particularly, there's been quite a lot of research around our MOOCs or massive open online courses. And that's really helped to refine that approach and to make sure, again, it was evidence-based as possible. But there are also really great research on models of care early on that was about how can we um help to develop residential facilities into like teaching hospitals where we would have placements of of all kinds of health professional students, and how can we maximize the positive impacts for that student as well as the facility. That was really super, super important research, and that led to um I think quite a few changes.

SPEAKER_02 6:42

Community involvement in research is a huge part of you know what we can do.

SPEAKER_00 6:47

Yes, yeah, absolutely, yeah.

SPEAKER_02 6:49

Community involvement is a big part of what we do at the wiking, but people out there they they're not really sure about how they can contribute to the research. Um, can you tell us how the community, the people living with dementia, their carers, or general population out there can contribute to the research that we do at Wiking?

SPEAKER_00 7:06

Thank you. Yes. So at one level, we we um also run a clinic as part of the Wiking Center, which is has been a diagnostic clinic, but more recently has got involved in um clinical trials. So these are new drugs and new diagnostic approaches towards dementia. So people with particular forms of dementia um would be eligible to be part of those trials. And so that might be useful for that individual, but also helps to add to an evidence base as to whether those new drugs or new diagnostic approaches are actually going to be worthwhile or not. Another way of getting involved is actually through our educational programs, particularly our MOOCs. We're often running research um through the MOOCs. These are surveys which um have historically included, I guess, questions around the experience of carers and and things that might improve um on in terms of supporting carers as well, too. So we we we've also got those MOOCs that people from around the world do, and we get a yeah, we get a really good idea of of of that experience of care. And then um, of course, then the other area that we're busy in is just around dementia risk reduction. And in Tasmania, we've got the island study linking aging and neurodegenerative disease, otherwise known as ILAN, where we're getting um people involved in um building their ex own expertise in understanding dementia risk, so sort of health self-efficacy, and um providing them with tools and ideas at how they might address that risk. And we've been following that group um over time to see if that's effective. But also in the meantime, there's many thousands of people who have been part of that research, and we're very grateful for their involvement because they give have to give a lot of time. They've also helped us with work that we've been doing on blood biomarkers for um determining whether people might be in the very early stages of, say, something like Alzheimer's disease. Also, new diagnostic approaches that involve AI, where people um might do um hand movements in front of their mobile phone camera. And again, we use AI to analyse those again to see for any early indications of neurodegeneration. So having that cohort um involved in that study has allowed us to do some very big and useful studies just generally on how we might diagnose and reduce risk of dementia.

SPEAKER_02 9:24

And people can get in touch by just clicking on the website and read it through, and if they're interested, then they can sign up for it, I guess.

SPEAKER_00 9:31

Yes, no, absolutely, yeah. So I think probably the if you're uh fresh to the area, then probably getting involved with the MOOCs is is um probably the easiest way being involved. Of course, in Tasmania we have these specific programs, but the program that we've developed around dementia risk reduction called Ireland is something we would love to be able to um extend to the rest of Australia as well, too. So I guess it's kind of watch watch this space. We hope to be able to bring that to people um in uh in other states and territories.

SPEAKER_02 9:58

Thanks, James. That's great. Do you have any take-home messages for um SK workers out there?

SPEAKER_00 10:04

Yeah, I think it you just really to as much as you've got time and and um capacity is to pay attention to the research side. Um, I think again, there's lots of places that do it, but for us it's the MOOCs in particular, which helps to summarize some of that research. So you may not need to go out and look at all the individual research papers, but if you can do the MOOC, then they'll give you a an idea of where the the evidence base is directing. Be a little bit skeptical, because you'll hear hear all sorts of things about dementia, you know, risks and causes through to approaches to care. And just be a little bit skeptical and you know, ask the question whether any of that is based on research and and the evidence. And I guess lastly, look for those opportunities to get involved in research. We we we clearly do research, but there's lots of research organizations around Australia who are doing various kinds of research um on dementia. Dementia Australia has some information also on their on their website. And um, as again, as much as you're available in interest, so you can you can become involved in that those research work.

SPEAKER_02 11:12

Thanks, so it's for your time today.

SPEAKER_00 11:13

Thank you, Yeshi.

SPEAKER_02 11:14

Before we wrap up, here's something for you to reflect on. What role could you or your community play in advancing dementia research, awareness, or education, and how might that contribute to better care for everyone living with dementia? Do let us know. Thanks for listening to Voices in Dream today, connecting you to the community of age care workers to support you to support people living with dementia. If you found this episode helpful, share it with a co-worker or even mention during your handover. Let's keep building a strong connected care team. Follow the Weeking Center on Facebook and LinkedIn for more episodes and free resources. And also to keep learning and growing, check out our free courses like Dream Program, equip learning and understanding and preventing dementia. Take care of yourself and those you support. And see you next week on Voices in Dream. Bye.