Program: Chair yoga: as good as the real thing?

Norman Swan: So Tegan, are you into this sort of thing where you watch your yoga on a screen and you contort yourself in front of a screen?

Tegan Taylor: Oh, I have done this before, especially during Covid, because I do love yoga as well. I couldn't go to my normal yoga classes during lockdowns, and I did do a bit of Yoga with Adriene I think actually was who I was following along, me and millions of other people around the planet during the pandemic. How about you?

Norman Swan: Well, I've tried to do it with one of my children, and it damn near killed me. I mean, downward dog is probably the best I can do.

Tegan Taylor: You should try child's pose. 

Norman Swan: Okay, I'll work on it. 

Tegan Taylor: That's what you want. Why are you talking to me about yoga right now?

Norman Swan: Because yoga from a screen can be good for your back pain. 

Tegan Taylor: Does it have to come through a screen? 

Norman Swan: It doesn't. But getting to a trainer and dealing with the expense can be hard. 

Tegan Taylor: Cool, it's flexible in more than one sense of the word. 

Norman Swan: Yeah, we're going to have all sorts of postures on today's Health Report. I'm Norman Swan on Wurundjeri land.

Tegan Taylor: And I'm Tegan Taylor on Jagera and Turrbal land.

Norman Swan: Also ahead, there have been many changes to the National Disability Insurance Scheme in recent months, with more to come. You'll be hearing from two women who rely on the scheme for support, and they've been coming into the studio here to challenge Minister Bill Shorten on the barriers they've faced.

Tegan Taylor: And we don't usually get to play much music on the Health Report, but later you'll be hearing a couple of really special songs that have helped people with young onset dementia and their families. 

But first, Norman, let us talk, as we always do, about some health news. And I got a really interesting email over the last week from Jonathan Shaw…

Norman Swan: One of our regular guests whenever we talk about diabetes. 

Tegan Taylor: Yeah, exactly. He's one of the top bods at the Baker Heart and Diabetes Institute, and he was getting in touch because he sent me the link to a Facebook video of himself seemingly endorsing a supplement. And it wasn't him, it was a deep fake video. It purported to show him talking with Karl Stefanovic, and it was a complete fake. And actually, just to give you a bit of a flavour of it, have a listen to this:

Deep fake video audio:

A scandal has broken out online after a statement from well-known Dr Jonathan Shaw. He called everyone treating type 2 diabetes with traditional methods 'idiots', and fiercely criticised modern approaches to tackling the disease.

Yeah, I did call those who still treat type 2 diabetes with metformin in 2024 idiots. Do you honestly think metformin is the answer? By now it's just not enough to manage diabetes effectively. I've developed a new formula that stabilises blood sugar levels in just 24 hours and starts working from the inside out to restore your metabolism.

Tegan Taylor: I'm really interested to get your take on this, Norman, because there's so many layers to this story. 

Norman Swan: There are, and in fact (we'll come to it later) I've been the victim of something like this in the past as well. This is a product called Glyco Balance. It's a dietary supplement. It says it contains cinnamon stick, barberry berries, bitter melon, white mulberry leaf, juniper berry, ginger, biotin and chromium. It makes all sorts of claims. But here you've got very impressive likenesses of Karl Stefanovic and Jonathan Shaw.

Tegan Taylor: And that's, I think, part of the thing, is that you actually have to be coming in super, super sceptical to anything you encounter online to be able to see it. Jonathan Shaw, with respect, isn't a particularly famous person, but he's a really important person in the field in Australia, and so it's even more credible, in a sense, that he would be the voice of this because it's not out of the question that he would be speaking with authority about something like this. 

Norman Swan: They have chosen the right person, in a sense, to promote this product with high credibility, even though he might not be well known. 

Tegan Taylor: Well, speaking of people with high credibility who are well known, you were the victim of this similar sort of scam. 

Norman Swan: Yeah, from memory it was a blood pressure medication. And we've actually had some feedback that maybe for this product as well…it gets very confusing, and I've stopped chasing it, but when it first started we were getting emails from listeners saying, 'Are you really promoting this product?' And I actually had to put out on social: if you see me promoting any product at all on any medium, it ain't me, that's not what I do. 

Tegan Taylor: The law doesn't neatly cover this. Depending on what the deep fake is about, there's potentially defamation if you're bringing someone into disrepute, as you say. If you're selling a product, there's probably the Australian Consumer Law under misleading and deceptive conduct. But there isn't really a recourse for individuals, unless it's something like bullying or sexually explicit content.

Norman Swan: There actually is recourse through the Therapeutic Goods Administration, should the Therapeutic Goods Administration wish to take action.

Tegan Taylor: Yeah, but that's for the supplement, not for you as an individual. 

Norman Swan: No, no, no, you're not allowed, under the TGA's rules, to use an opinion leader like a doctor or a healthcare professional or a researcher to promote your product. That is actually illegal and actually has fines attached to it. They're not allowed to use doctors, nurses or others to promote it. You're allowed to have disease awareness campaigns, but you're not allowed to use influential people to promote the product. So that's illegal and has fines attached, if you can find out who's at fault. There's just one big caveat; we've got no proof one way or the other of who actually did this. It could have been the manufacturer. It could have been an independent party. It could be an independent person. In other words, the manufacturer could have been scammed themselves. We just don't know. The point about all this is, though, that the consumer has been scammed by this. And I would assume that, in a reverse sense, if you're a manufacturer and you've been scammed, I'm not sure what your recourse is because you could be fined for something that might not be your fault, but you'd have to prove that you didn't do it. I mean, it's a very difficult area.

Tegan Taylor: Yeah, it's really, really thorny. So we reported the ad when we saw it, and we would continue to do so, and we also got in touch with Meta to see what they had to say, and a Meta spokesperson did respond to us saying that they had removed the content for violating its policies. They say 'Meta does not want scams on our platforms', and they're continuing to invest in tools and technology to prevent them. They say 'The safety of our users is of utmost importance', and that they will continue to work with industry, the government and law enforcement to protect Australians from scams. So that's the end of their statement there. 

But I think part of this is that it's such an emerging field. The technology is gaining sophistication really, really quickly, and it's hard for the platforms to keep up from…well, from a technological point of view because the sorts of tools that they're trying to develop to detect these scams are harder to create, but also from a regulatory point of view, it's hard to regulate in a space where there's so much change happening so quickly.

Norman Swan: And all we can say in the end is buyer beware. But if you see this sort of thing in the future, complain to the TGA.

Tegan Taylor: And if it seems too good to be true, it probably is. And I think there's a fairly strong argument that the platforms where these sorts of things appear have a responsibility, which, as we said, Meta has responded, saying that they take it seriously. I expect we'll see more regulation in this space. 

Norman Swan: And another story which actually hasn't had much coverage in the news, I think it's very much worth our talking about, is a really important and interesting paper on hormone replacement therapy for women who are peri and menopausal.

Tegan Taylor: Yeah, and some pretty gnarly sounding side effects. I'm quite keen for you to put this into context for us, Norman.

Norman Swan: So the context here is hormone replacement therapy has been around for a long time, estrogen only, estrogen plus progesterone, a drug called tibolone, and, more recently, transdermal patches for hormone replacement therapy. So, there's been controversy. The early studies, which were observational, not clinical trials, suggested it protected against heart disease, dementia, breast cancer. And then they say, well, we need to do clinical trials to find out whether this is true. And two clinical trials have shown an increased risk of coronary heart disease, stroke, heart attacks and thrombosis, risking pulmonary embolism, a clot in the lung. 

One of those trials was heavily criticised because it had older women, not the typical population of women who are on hormone replacement therapy. So now, to try and answer these questions, a massive study out of Sweden where they've looked at 900,000-odd women, where they know what drugs they've taken and they know what diseases or problems they've got down the line. And what they've done is called an emulator trial, so they weren't actually on a clinical trial, but they organised this population of women because they knew they weren't on hormone replacement therapy, then they went on various kinds, so you could have a group that weren't on treatment versus treatment and various types of treatment, and then follow them through over the years to see what happened to them in terms of their cardiovascular system. 

Long story short, tibolone increased the risk of coronary heart disease, heart attacks, stroke, not necessarily of clots. Oral (and I say this; oral) combined estrogen and progesterone increased the risk of coronary heart disease, and estrogen alone orally probably did too. But for the reassurance of a lot of women, transdermal (in other words, skin patches) did not seem to increase the risk of coronary heart disease, and luckily over the last few years that's where the market has gone. Most women who start hormone replacement therapy these days are on the transdermal patches and probably don't need to worry about heart disease, apart from the usual risk factors.

Tegan Taylor: So for someone listening to this, what kind of questions should they be asking their doctor? You know, you hear hormone replacement therapy, increased risk of coronary heart disease, even with all of the context you've just given us, what should they be asking about?

Norman Swan: Well, if the doctor is recommending an oral version of hormone replacement therapy, give them the link to the show, we've got the link to the British Medical Journal paper, and say, 'Why can't I have a skin patch?' Because it looks as though skin patches are fine. 

Tegan Taylor: A good chat to have with your doctor, put them on the spot, tell them Norman sent ya. 

On Radio National, you're with the Health Report. 

Norman, welcome to my yoga studio. I'm here to talk you through some chair yoga today. 

Norman Swan: Okay, well, I'm sitting on a chair.

Tegan Taylor: Great start, well done.

Norman Swan: What do I do now?

Tegan Taylor: All right, take your left leg and lift it up so that you can cross left ankle over right knee. 

Norman Swan: I thought you were going to…so it's not behind my right ear? It's actually just…okay…

Tegan Taylor: We're starting slow this morning. 

Norman Swan: Okay, yeah, okay, I'm kind of there.

Tegan Taylor: And now you're going to sit tall from your hip bones, let the top of your head rise up towards the ceiling, and then just lean forward slightly, and you'll feel a very deep stretch in your left glute. How does that feel for you?

Norman Swan: Yeah, I've got left buttock stretch, big time. What do I do next, because I'm stuck now. Can somebody come to the studio and help me out here? 

Tegan Taylor: Un-pretzel-ify yourself. I'll let you do your right leg in your own time, so that we're not wasting people's time listening. But I think the point of this is that chair yoga sounds gentle and actually can be quite intense, and that's why it can actually be a really useful intervention for lower back pain. 

Norman Swan: Yeah, and the study that we're going to talk about in a minute is a study of people with chronic low back pain, so they've had it for a long time, and yoga face-to-face has been shown to improve low back pain outcomes. The thing is that not everybody can get to a class. Is it scalable? Not every yoga teacher has been trained therapeutically. If you did it on a screen with almost unlimited people tuning in, could you get the same sort of benefit? And that's the study that this particular group have looked at. And the researcher I spoke to was Dr Hallie Tankha who is a clinical pain psychologist at the Cleveland Clinic in the United States.

Hallie Tankha: We have conducted multiple studies on yoga for chronic low back pain, and what we know is that it is highly effective for back pain, it improves the experience of pain, it improves function, improves sleep. And this is all when people attend in-person yoga classes.

Norman Swan: And just before we go on, when you say chronic low back pain, how long did people have their back pain? Just give us a sense of what people were experiencing before they went into the study. 

Hallie Tankha: It's anywhere from people that have back pain from anywhere from three to six months, all the way up to 15 and 20 years. 

Norman Swan: And there are lots of different flavours of yoga. What yoga were they getting in the face-to-face?

Hallie Tankha: Hatha Yoga.

Norman Swan: And where does that fit in the yoga spectrum? Is it upside down with 40-degree temperatures, or just fairly straightforward?

Hallie Tankha: Sometimes participants or patients get confused, they think they're going to be getting hot yoga, or the kind of yoga that you would normally get at a gym. This is very different. So our yoga instructors are yoga therapists, and so it's very therapeutic. So Hatha Yoga is modified, so a lot of it is sitting in chairs, a lot of chair poses, things that are very safe, calming, relaxing, gentle stretching and gentle movement that builds in intensity over the course of the 12 weeks.

Norman Swan: So what you did in this study was you did it…rather than face-to-face, it was live streamed, wasn't it.

Hallie Tankha: Exactly, and the participants could all see each other and could see the yoga instructor. 

Norman Swan: So there was an interaction here. What sort of dose did they have of the yoga over time? 

Hallie Tankha: Each live class was 60 minutes and it was over 12 weeks. 

Norman Swan: What were the findings?

Hallie Tankha: People that engaged in the yoga, their pain was almost cut in half. We measured their pain at three months, and then again at six months. And people started, on average, at a six out of 10 pain rating scale. And at three months, directly after the yoga intervention, they reported about a four out of 10. And then three months later after that, they reported a three out of 10 pain. So their pain was cut in half. 

They also improved in functioning, so their ability to climb stairs, carry groceries, things that their low back pain would normally interfere with on a day-to-day basis, they improved their functioning. And they also improved sleep. And we saw that yoga potentially reduced the reliance on pain medication, because people in the yoga condition were using 30% less pain medications at 12 weeks. 

Norman Swan: There are lots of elements to this. There's the yoga, there's the love and attention from an online instructor, and there's a sense of group and group identity about this. How much of it is actually the yoga? 

Hallie Tankha: That's a wonderful question. And as you know, I'm a clinical pain psychologist by training, so I'm very interested in the psychological effects of yoga, and also of social support and being with other people with your same condition, so with low back pain, who understand what you're going through and know how challenging the condition is. And so there's an element of that social support, of the psychological effects of yoga, of the breath work, of sitting with hard things, both emotionally and physically, and yoga gives an opportunity to touch on all of that, in addition to physical strengthening and stretching. 

Norman Swan: And you got involved in the chair yoga because you wanted to tone yourself up as an office worker.

Hallie Tankha: Absolutely. So, as a researcher, I'm constantly sitting in my office chair. I have a standing desk, but I often feel like I get stuck in my chair a lot. So these poses are just so accessible and so easy and so simple to do, just even when I'm sitting and even in meetings and on a call, to do some gentle stretching. 

Norman Swan: Was there any harm? 

Hallie Tankha: We did not find any harm. The instructors and the therapists were giving people modifications. So, for example, if they were in a downward dog position, or if they were doing a pose on one leg and someone did not feel safe or sturdy enough to do so, the yoga instructor would say, hey, grab a chair, balance yourself, you could do this modified pose, and that was a way to really prevent any sort of harm, and also wanting to keep people's confidence in their yoga abilities if they can't do some certain positions that the therapist was asking them to do.

Norman Swan: There are lots of people with chronic low back pain. How practical is this to scale up, and how safe is it to scale up, given that there's lots of virtual yoga online, not live?

Hallie Tankha: We really believe that this is scalable, and the barriers that we have seen in the United States is a lack of providers and patients knowing about yoga for low back pain and knowing about the evidence for low back pain. And so what we're hoping is that yoga can really be added to these primary care providers' list, like a menu. And so that is our goal, to get some insurance on board and to get our providers on board, to really give more patients access.

Norman Swan: And just finally, somebody listening to this might go out into the marketplace and Google 'therapeutic yoga', so are there any risks in just trying out an app?

Hallie Tankha: It all depends on your condition, and so the recommendation we always give is really talking to your primary care provider if this is a safe treatment for you.

Norman Swan: Thank you very much for joining us.

Hallie Tankha: Thank you so much for having me. 

Norman Swan: And that was Dr Hallie Tankha, who's a clinical pain psychologist at the Cleveland Clinic.

Tegan Taylor: On Radio National, you're with the Health Report.

Norman Swan: And coming up, Tegan, you've got a story one how music is helping people with early onset dementia.

Tegan Taylor: Yeah. And so that's people who are diagnosed when they're under 65, which can be a massive shock to them and their families, which songwriting might help them process. 

But first, Norman, there's been a lot of changes to the National Disability Insurance Scheme over the last few months, and that's come off the back of an independent review that was delivered last year. 

Norman Swan: Yeah, they changed legislation this year. I mean, this is a world leading program. There are very few parts of the world which have got anything like the NDIS, and it went off the tracks and was becoming unaffordable, and people were not necessarily getting therapy or help that they needed, or probably getting misled by some providers about what they should have, even though they had choice in the matter. But it's a relatively recent program, it was only launched in 2013.

Tegan Taylor: Yeah, it's sort of surprising it's become such a stalwart, and it's so important to so many families that you forget how young it is.

Norman Swan: But we've been working with two women who've had very different experiences with the NDIS. 

Tegan Taylor: Yeah, so Kylie Betts had a stroke 20 years ago when she was in her 30s, before the NDIS existed. And Gillian Coutts had a stroke about two years ago, and had NDIS support from her first day back home from hospital. But before any of this happened, they were friends. 

Norman Swan: Oh, really?

Tegan Taylor: Yeah, yeah. And then they properly reconnected after Gillian's stroke, and really found a lot of support with one another.

Norman Swan: So, they've been working with us at the Health Report, particularly Shelby Traynor our producer, to tell their stories, and you'll hear more from them on the show next year.

Tegan Taylor: But first they got a chance to chat with NDIS Minister Bill Shorten this week, to talk through the new changes to the scheme and what they're trying to achieve.

Norman Swan: And first with the questions is Kylie.

Kylie Betts: Welcome Bill. The NDIS has been transformative but complex to navigate for many people like ourselves with disabilities. I had the unfortunate experience of 12 months waiting time on my application, my case timing out, and then having to ring your office twice in tears and frustration. Given my experience of long waiting times and complex bureaucracy, what reforms should be made to make this process easier?

Bill Shorten: Yeah, I'm sorry that you had that difficult experience.

Kylie Betts: Thank you.

Bill Shorten: When I became the minister nearly three years ago, the organisation only had 4,000 people working for it to serve the needs of over half a million people. Now I can say the first reform we've got is that we have more staff. It's more like 7,000 people, but it's taken us a while to on-board, to get the money. We're talking literally about thousands of extra people. 

The second thing is that because we want to make the scheme true to purpose, we've been inundated by a lot of extra claims and inquiries, by some people who are worried they're going to lose benefits or budgets, by others who are just…frankly, some providers who are just manipulative and are going for one last round of free drinks out of the scheme before they no longer can just rort the scheme. But we must treat every proposition, every application as legitimate until proven otherwise. So that has led to a congestion in handling matters. I now get the waiting times every couple of weeks. The trend is our friend, but that is perhaps not a great consolation for you who was making a claim in the middle of all of these matters.

Gillian Coutts: Interesting, from a stroke perspective, recovery from a stroke often requires ongoing, tailored rehab. I know that I could reduce my care requirements in the future by directing more of my care packages now to rehab, but since the NDIS changes came into effect in October, I couldn't use any of my core funding to fund additional therapies. Have you considered that this might actually limit people's progress? 

Bill Shorten: Some parts of the package have extreme value to you, and, frankly, others have less value. Yeah, the laws that I just got through the parliament in August give us the legal authority now to create more flexible packages where we do a top-down assessment of you, your total needs, but then give you more choice and control, rather than micromanaging each aspect of your package.

Kylie Betts: A lot of people came to my aid; the local Brotherhood of St Lawrence, and another participant in the NDIS gave me the details of his support coordinator. Other people have to pay advocates because it is such an overwhelming process. How can the NDIS assist potential participants to navigate a process that forces you confront your disabilities and be vulnerable as a necessary part of the process?

Bill Shorten: Part of the reason why there are so many disability intermediaries, you mentioned the Brotherhood of St Lawrence, local area coordinators or random support coordinators you meet, they've sprung up because, one, the organisation was understaffed and underfunded, and, two, there's been a culture in the scheme of you get your package, it gets micromanaged each unit, and you just fight to keep your package. So it's created an adversarial approach. Not only do we want to do the assessments top-down so we can have budget planning tools, that'll take about 12 to 18 months to develop, what we also want to do is introduce navigators, people commissioned by the agency who give assistant advice, how to get the best out of your package, how to liaise with the agency and how to get the best out of the community supports that are around.

Gillian Coutts: Technology plays an important role in stroke rehab and disability support. How is the NDIS keeping up with those technological advances?

Bill Shorten: I think that's an issue of innovation, which is more than just for the NDIA, that's for the marketplace. We invest probably closer to $1.3 billion annually on assistive technology. I think there's a lot of opportunity to invest more in AT and give people more control and dignity. So we're open to people coming forward with innovative propositions around tech which means they don't need so many disability care hours and they have more independence. 

Gillian Coutts: I've had my application for a wheelchair accepted after eight months of waiting, and I'm curious whether this interview had anything to do with it finally being accepted after having such a long wait. And I guess I bring this up because you often hear that people say you've just got to contact Bill Shorten's office to move things along if they're lagging.

Bill Shorten: Yeah, well, I'm sure my office is very helpful.

Gillian Coutts: They are.

Kylie Betts: They are, I'll agree with that. 

Bill Shorten: But this is the largest personal budget scheme of its nature in the world. Every package is individual, but what that means is mistakes get made. No one in the world has ever endeavoured to hand out 680,000 individual packages, so sometimes mistakes do happen. And yes, I want to create systems where you don't need my office, we're working on that. But in the meantime, if there's a problem, we just do our very best. 

Kylie Betts: What is the reasonable time to wait for a plan review, given the participants service guarantee states that the reviews must be completed within 60 days from the day when we ask for the review?

Bill Shorten: The participant service guarantee is the goal. We're increasingly accomplishing that. The reality is that the volume of requests has in the last 12 months been, whoa, doubled. And that's for good and bad reasons. So I know that we're getting close to the service guarantee numbers, I think the agency has been improving, but I understand if you're waiting for a decision and it's taking too long, then that's a bad experience for you. So we've just got to keep playing Whack-a-Mole until the system is working seamlessly. 

For example, July to September, the agency completed 24,000 first plan approvals, and that was up 70% from the June quarter. They've done 30,000 access decisions, that's up more than 50% from the previous quarter. And we did 72,000 plan re-assessments, that's up 16% from the previous quarter. So yeah, it's got a way to go, but I know that I'm seeing the consequences of the extra investment. And when we can have top-down plans and better internal and consistent assessment, and when people are clear what they can spend their money on, and we've got a better standard of navigator, the problems will get ironed out.

Kylie Betts: How does the government plan to engage and collaborate with people with lived experience to improve the NDIS? I mean, Gill and I would gladly participate in a scheme like this. 

Bill Shorten: There are measures, but I will pass on your kind offer. First of all, I've introduced a rule that half of the board of the National Disability Insurance Agency have to be people with lived experience. Two of the top seven leaders of the agency are people with lived experience. The agency now employs 17% of its staff are people with lived experience. The new call centre that we have has 40%. We also have an independent expert advisory council, which is all about lived experience. We now have 23 co-design groups. 

The old NDIA, before I came there, was like a castle with the drawbridge up, and you would sit on the other side of the moat, you would just ping arrows at the brick walls. Now the drawbridge is down. Now it's got to be a scheme for and by people with disability. In the Safeguards Commission I've now made the most senior appointment ever of a person with lived experience, Associate Commissioner Nat Wade, who's a human rights lawyer, who's also a person with disability. Disability is no longer invisible in this organisation, and the experience is welcome. I mean, Kurt Fearnley is the chair of the board. And we can do better, and I want to make sure that people in the stroke category, that their particular experiences are understood and respected. 

Kylie Betts: Yes, because even though we come across as not speaking well, we still are smart and…

Bill Shorten: Please, understand how I see you; parts of your body mightn't work to the utility that you would like them to work, but that doesn't mean that you don't have a brain. It just means that we've got to work around parts of your ability to communicate, but that doesn't make you stupid, it just means that you've had a stroke.

Gillian Coutts: So what message would you give to share with stroke survivors and their families who may feel uncertain or may be overwhelmed by the process of seeking support through the NDIS?

Bill Shorten: Ask for help. I understand there's lots of stages, and I'm not going to tell you about your life, you are the PhD, you are the [unclear] of your lives, but I can imagine there's some shock to work through. You're going along one path, all of a sudden it's another path, and it's a road less taken. And your family have got to work out what it means, you've got to work out what it means. You've got to focus on your recovery, and what I want to do is just make sure that the NDIA can give you and your family some comfort that you're not making this journey on your own. 

The reason why I am so committed and why I fought so hard to set up the NDIS is that experiences such as yours are what one American poet once called a shaft of fate, and it could be any of us or anyone we love. I just want to make sure that you're not on your own. I want you to worry about loving your kids and your family, I want you to work on your recovery, all the things that are important to your quality of life. And what I want to work on is making sure that we've got some interventions and a personal budget which gives you some extra supports so this journey can be fulfilling. 

Gillian Coutts: Thank you. 

Kylie Betts: Thank you. 

Bill Shorten: My pleasure.

Tegan Taylor: So that was NDIS Minister Bill Shorten speaking with Kylie Betts and Gillian Coutts. And, as we said earlier, you will be hearing more from Kylie and Gillian next year. They have been working on a project called Stroke of Luck about their experiences.

Norman Swan: On Radio National, you're with the Health Report.

Tegan Taylor: So Norman, we do a lot of stories about dementia on the Health Report. Most of them are about understanding how it works in the brain, with the long view to maybe developing drugs that prevent it or treat it better. But for people who are living with it now and their family members who are often also their carers, they need help too. And so I have been looking at a small pilot study that aimed to make life easier for people with dementia and their carers using the power of songwriting.

Singing: Forgetfulness, frustration, clouding in over me. Confusion and anxiety, not knowing what to do…

Tegan Taylor: The singer you're hearing there is Phoebe Stretton-Smith. She's a music therapist, and the song she's singing was actually written by a group of people with younger onset dementia, where people develop dementia when they're younger than 65.

Singing: …doing the best we can…

Tegan Taylor: It's part of a music therapy pilot program led by Samantha Loi, a neuropsychiatrist and researcher with Royal Melbourne Hospital and the University of Melbourne. 

Samantha Loi: So, as you know, I've been doing quite a lot of work on young onset dementia, and as I worked clinically with these people I realised there wasn't much to offer them in terms of interventions, particularly for their spouses, who were also then to become their carers. And so this got me thinking about, well, what is it about young onset dementia and having to do something which both the people with dementia and their carers can both participate in, in thinking about how difficult and challenging it can be when given a diagnosis.

Tegan Taylor: The program combines cognitive behavioural therapy along with something called therapeutic songwriting, where participants use the themes that have come up in the talking part of the therapy to create song lyrics.

Samantha Loi: And we thought that this would be an interesting combination, because CBT has been seen in the literature and known to be very good for helping to provide support, also to help try and change people's maladaptive thoughts into something more realistic, but then also combine with something a little bit more novel and perhaps a little bit creative.

Singing: Finding ways to get through this unknown pathway…

Tegan Taylor: Paul Wheelton's wife Angela was part of the program. She was diagnosed with dementia as a 63-year-old in 2022 after an earlier misdiagnosis, and they were looking for all the help they could get. Paul applied for four different medical trials, but kept getting knocked back. 

Paul Wheelton: We failed on four because she was a bit too advanced. They want people at the very start so that they can actually easily see progression. If you're already up to a certain level of cognitive decline, they're not interested. We were grasping at straws and would try anything. Music actually just resonated with Angela and really triggered some things deep, deep, deep in her memory.

Tegan Taylor: Paul said Angela really benefited from the program, but it wasn't just for her.

Singing: Life is very different now, shook up and changed completely…

Tegan Taylor: Paul and the other partners of people with dementia who were in the program also worked with music therapist Phoebe to write their own song,

Singing: Watching and checking, thinking, planning, looking for missing things, wondering how long is the piece of string?

Paul Wheelton: And what you did is you put some of your experiences into those songs. Because I'm an accountant, there's not too many musical parts of my body. It was challenging, I've got to say, for me. But then, you know, when you analyse what you're trying to do with it, I think it's a very good process. I did surprise myself.

Singing: But for better or for worse, we're making the most of our time now…

Paul Wheelton: What we've really got out of it is this love of music.

Singing: What does the future hold, what lies ahead…?

Tegan Taylor: The program was a small pilot study with just five couples over six weeks. They met remotely via video chat for therapy sessions. Researcher Samantha Loi hopes the format of the pilot being based entirely online means it could be replicated to help more couples.

Samantha Loi: The tricky thing of young onset dementia, it is a rare dementia, so it's definitely not as common as older onset dementia, it's probably only 5% to 10% of all dementias. And people with young onset dementia are quite geographically spread out. So trying to come together in a group face to face can be quite challenging. 

Singing: There's no book, there's no guide. Life is real and life is hard, but for better or for worse, we're making the most of our time now…

Tegan Taylor: Paul says that even though Angela's dementia has progressed since the pilot program, being part of it has given them more tools to enjoy their time together.

Paul Wheelton: There is no cure for this. It is a one-way street. So music therapy, as I look at it, is giving you some extra skills as you go through this journey, to bring some enjoyment to it, to actually make you aware of…there are some great things still in that mind; how do you get them out?

Singing: We're traveling on a long and winding road, at different points and learning as we go. There's no book, there's no guide. Life is real and life is hard, but for better or for worse, we're making the most of our time now…

Samantha Loi: I'm very used to listening and hearing people's stories in a clinical perspective, but I must admit that when I came to listening to the songs which were actually created by these groups of people, when I still listen to it now, it is very emotional, and it comes from their hearts.

Singing: But for better or for worse, we're making the most of our time now...

Tegan Taylor: Associate Professor Samantha Loi is a neuropsychiatrist at Royal Melbourne Hospital and the University of Melbourne, and you also heard there from Paul Wheelton, who's now a carer for his wife, Angela, and the singing voice of music therapist Phoebe Stretton-Smith. 

Norman Swan: And, just bouncing off the earlier item on the NDIS with Bill Shorten, there was some publicity over the last few days about music therapy and the NDIS, having to prove benefits for funding for music therapy to continue.

Tegan Taylor: The ABC has done some great reporting on it, and the NDIS has put out a statement, and we'll put links to those on our website. Not directly relevant to the program that you just heard about, but definitely relevant to anyone who relies on music therapy.

Norman Swan: You're with the Health Report, here on Radio National.

Tegan Taylor: So it is mailbag time, Norman, and there's literally only one topic in the mailbag this week.

Norman Swan: I should have looked this up before I went to air with it, I was very lazy. 

Tegan Taylor: We need to give some context here. We're talking about…oh, it was genetic testing for breeding couples, so people who are planning on having a baby. 

Norman Swan: And it was Australian research, that's right, that you could go and have genetic testing. We'll have a link to this story, it's a really interesting story, about whether or not it's worth having your genes tested. And I asked the researcher, I said, you know, in Hollywood movies in the '30s and '40s, people getting married in a romcom, they had to go and have a test first before they got married. Do you know what that test was? And he didn't know. I didn't know. I should have actually gone and looked up…

Tegan Taylor: Everyone who listened to the Health Report knew…

Norman Swan: Exactly. Go on, give it away. 

Tegan Taylor: Well, syphilis, in a word. Basically…I won't list off all the names of the people who wrote in to us because it would take up all of our time, but a lot of people mentioned that there was a syphilis test that was developed called the Wassermann Test that came through in about the 1930s, Mark says, by US Surgeon General Thomas Parran, and basically you had to have a blood test prior to marriage. As John says, pretty much every US state required testing through a large part of the mid 20th century, although, John says, some only required the male to be tested.

Norman Swan: And at least in one state, in Montana, they had a mandatory rubella test, German measles test for women, because rubella, like syphilis, is associated with congenital problems. 

Tegan Taylor: So, controversial. Why don't we still have syphilis testing before marriage? And why is it not in movies anymore? That's just the part that really gets me, it's so funny. 

Norman Swan: So I've got a question for you; sex before marriage? I won't embarrass you by getting you to answer that question, but there you have your answer I suspect. So before you bonk in your life, you should have a syphilis test, rubella test, and God knows what else.

Tegan Taylor: I mean, for real, yes, get STI tested, people, be responsible to the people that you're enjoying the company of. But yes, fair enough, Norman.

Norman Swan: And just to that point, you should have a full STI screen, including HIV, before you start with a new partner, and both partners should have it.

Tegan Taylor: Exactly. Thank you so much to Mark, John, and the dozens of other people who wrote in so excited to share their knowledge of sexually transmitted infections that we didn't know. And I really appreciate that about the Health Report audience.

Norman Swan: So whatever you want to say to us, whether it's nice or not, why don't you email us at healthreport@abc.net.au.

Tegan Taylor: And don't forget that we also have another podcast called What's That Rash? (yes, there's a theme here) where we answer the health questions everyone's asking. This week a lot of you are asking about collagen supplements and whether they work. So head to the ABC Listen app to find out. 

Norman Swan: So you get that from the ABC Listen app, or wherever you get your podcasts. Do subscribe, and you can also watch it on YouTube. So you go to ABC Science's YouTube channel and What's That Rash? is on there, in all our glory.

Tegan Taylor: You can guess by looking at our faces whether or not we use collagen supplements to keep us looking young. 

Norman Swan: See you next time.

Tegan Taylor: See you then.