Captions were made with the support of NZ On Air. www.able.co.nz Copyright Able 2024 - Tonight on Sunday ` another brain damage case, a death, is this the game-changer for New Zealand rugby? - How many knocks do you think Billy took? - Lots, hundreds. - I'm either going crazy, or I'm going very mad. - I had no idea I was leading my little boy to an early death. - Clear and compelling evidence... - It broke him. It absolutely broke him. - ...that can no longer be kicked to touch... - We've gotta do something about it. We've gotta be better at it. - If there's not something done now, there's gonna be more. - ...and an aged care paradise... - What is it like here? - CHUCKLES: Fabulous. - ...that gives new meaning to the words 'last resort'. (ALL LAUGH) - You call the people here guests. - Mm-hm. - Why? - They're our guests at the resort, and that's how we treat them. This is how it's meant to be. This is how our elders should be cared for. - Kia ora. I'm Miriama Kamo. Billy Guyton's All Black dream ended after a series of concussions forced him to quit the game at just 28. Five years later, he was dead. Billy will be remembered as New Zealand's first professional rugby player diagnosed with CTE, a brain disease linked to repeated head knocks. Billy gave everything to the game, but where was New Zealand Rugby when he needed it most? Tonight, a confronting story with strong themes. Here's Mark Crysell. (MESSAGE ALERTS CHIME) - MARK CRYSELL: Billy Guyton can no longer speak for himself... - I'll be back in a minute. I need to go get my pills. Kia ora. - ...but these are his words. - So, it's 8 o'clock. This is the medication I have to take every night. So, it's got the magic pink pills, the beauty wee white ones. - A Facebook Live in 2018. - I'll be all right. I'll be right for half an hour, eh? - COMMENTATOR: Guyton to the short side. - He'd just retired from rugby after too many concussions. - So, you know, the thoughts of constant suicide, the planning of how it's gonna happen, how you're gonna do it, those things were so easy to think. You know, the plan was easy, the plan was there, I had the plan. - In five years, Billy Guyton would be dead. The first professional New Zealand rugby player to be diagnosed with chronic traumatic encephalopathy, or CTE, a degenerative brain disease linked to head knocks. - So you always want to try and get the best advice you possibly can, OK, and that's by telling the truth, the honest truth, man. - For the past five years, Sunday has told the story of CTE and rugby. We've spoken to broken former All Blacks... - Sorry, guys, can we just have a... - Yeah. - ...a break, please? - ...devastated families. - It's going to go to help others. - We've travelled to the world's largest sports brain bank in Boston, USA. And now we're here, in Waimate, South Canterbury... another casualty of CTE... another devastated family asking... why? - We're broken, we're shattered. (SIGHS) It's... disbelief, kind of. but I believe` I mean, I know he's not coming back. - And if there's not something done now, there's gonna be more like Bill, there's gonna be more families go through what we're going through. - I'm back. (INHALES SHARPLY) So, I grew up in Waimate ` small town, um, a lot of farmers, you're known a tough country guy. So you're not supposed to talk about your feelings or emotions. You're supposed to hold them in because you're a country guy, and you're tough. - Billy Guyton's family have deep roots in Waimate. His dad, John, still lives here. - Ah, this is Nana Stell. She washed the Waimate rugby jerseys for 35 years. - Six generations of the family have played rugby at Waimate's Manchester Park. So do you play here? - Yeah. Yeah, this is where I first started my rugby, um, down on the little fields. That's where us little midgets used to play, yeah. - So your family's blood and bone is in this ground soil? - Yeah. I can go right back to my great-grandfather, and then we moved down into the Chamberlain family. My grandfather, I'm pretty sure he was a life member too. My grandmother's a life member. - There was no way Billy wasn't going to be a rugby player. Yeah, that's why I had Billy down here at 4. Like, I couldn't wait to get him here. - He was a natural, loved the game. What was it like the first time you saw Billy go out on the Waimate rugby ground? - Huge, and such a proud father, yeah. That day was incredible, but in saying that, I had no idea I was leading a little boy to an early death. (PLAYERS SHOUT INDISTINCTLY) Oh, good run, good run. - He played the game the way they still do in Waimate. (WHISTLE TRILLS) - Well, we're country kids. We got a go-hard attitude ` go hard or go home. The more you put your body on the line, the better rugby player you'll be. That was the mentality of it. - Waimate might be a small town, but it doesn't stop young boys dreaming big. - Yeah, this is his goals that he had, that he wanted to try and tick off. - Goals he wrote down in a school book and showed to his mum, Stacey Dunn. READS: Blues starting halfback. - Tick. Resign Blues? - Yeah. Maori All Black. - Tick. Tasman Makos ` 50 caps. - Tick. - All Black. - Not quite tick. Just about. (CHUCKLES) He was just a kid that could do everything and gave everything a go. A lot of people call him 'the golden child', because he was a child that everyone just looked up to. - Was he your golden boy? - I have to admit, Mark. Yes, he was my golden boy. Yeah. - Judith Guyton is Billy's grandmother. He gave you everything... - Yes. - ...all his trophies, all his jerseys. - Yeah, he did. He gave them to me because he knew that I would look after them for him and keep them safe. Yeah. - What does this mean to you? - Oh, everything. - Rugby is a contact sport... - Yes, Bill! - Yeah! - ...but you only ever understand the power of those collisions when you slow it down. - Every time I'm watching the game on the TV now, it's like every time I see somebody get a head knock, I'm like, 'Ooh, more CTE.' - Billy Guyton took his fair share of those big hits. - He had got a few different knocks to the head. - How many knocks do you think Billy took? - Knocks? Lots, hundreds. - What's it like as a mum to see your son get hurt on the rugby field? - Oh, it's horrible. It's... pff. You've butterflies, the... the whole... (SIGHS) I don't know, but you never think your kid's gonna get hurt. - But as time went by, family and friends started to notice Billy's personality was changing. - Um, thoughts are running. My head's going all over the place. Um, I learned to walk at night. So I'd be walking 11 o'clock at night because I knew I couldn't sleep, you know. So I was like, 'I need to walk.' - He was really confused about what was going on for him in his head, and he didn't understand a lot of things. - A lot of headaches, a lot of... bright lights, his mood, his whole... aura, his whole everything would just go from this happy person to you could see a frustration come over his face. - (SNIFFS) So I rang my doctor. I tell her that I think I'm bipolar, and I'm either going crazy, or I'm going very mad, because I can't stop my thoughts. - COMMENTATOR: And Billy Guyton hammers it into touch. - His paranoia came to a head playing for the Auckland Blues in 2016 and 2017. - I was in a very negative state about the... about why they were being negative towards me. I was making up stories in my own head ` what was I doing? - Becoming more irrational and volatile, Billy says he went seeking help and was called in to speak with some of the Blues' leadership team. - They're like, 'Bill, you just got to leave your shit at home, OK?' You think, 'Well, if you knew what was going on in my head, 'you'd (BLEEP) know you wouldn't be able to leave it at home, mate.' Jesus! - The Blues say since Billy's video, the management involved have left. Allegations can't be proved or disproved. Their focus is making sure all players are supported, both mentally and physically. But the question no one was asking while Billy was playing was were the number of serious head knocks he took affecting his mental health? Billy's medical records talk of 17 concussions. - That's a lot. That is a lot of concussions for someone to have. I think many people would, uh, probably call it quits after five or six concussions ` and even that would be a large number. 17's an enormous number of concussions. - Prof Maurice Curtis is the director of the Neurological Foundation's Brain Bank. - I guess he had all of the subconcussive injuries from playing sport for such a long time. That's` That's significant. - Neuroscientists say subconcussive blows elongate and twist the brain, leading to the build-up of tau, the abnormal protein which causes CTE. - But we know head knocks alone are enough to cause major problems. There is no brain disease that is made better by having a head knock. In fact, the brain's better not to have the head knocks ` full stop. - Many CTE sufferers go through major personality changes, depression, anxiety and eventually dementia. But it can only be diagnosed in death. Instead, while still alive, Billy was diagnosed with a mental illness. Billy also believed he had bipolar disorder. How did the symptoms match up with CTE? - It's quite possible that he had both CTE and bipolar disorder, but certainly the symptoms of CTE ` depression, anxiety, mood swings, those sorts of things ` are absolutely common in CTE. - And for Billy, the big hits just kept on coming. - Guyton to the short side. - JOHN: He got a big head knock, concussed. - 2017 ` one of his last games for Tasman Makos. Look carefully, and Billy appears to be struggling after another head knock. - They took him to A&E, and that doctor told him then, like, 'You need to stop playing rugby, you need to have a break.' So Bill being Bill took his six weeks off, and he went back out, and he got another head knock. That was the last game of rugby he played. - He did not want to give up ` even just being told, um... that you had to retire, like, it broke him, it absolutely broke him. - Billy Guyton was now adrift from the game he loved. - As soon as he retired, there was... nothing. He was left on his own. There was no help, no guidance, no... (EXHALES DEEPLY) - When we come back ` - You know, it's pretty tough to think about... things when` when you're in a manic. - Billy Guyton's cry for help. - He tried so hard... to tell people he wasn't right. And, you know, for them to dismiss him like that, it just broke him. - Did they fulfil that duty of care? We got a new car you have to plug in. It goes for two wee stops. (DOG BARKS) One masterpiece. And four unlucky possums! Five! VOICEOVER: Fast charge on the road and pay like you're at home. With Genesis at charge net stations. (PULSATING ELECTRONIC MUSIC) - Nelson's Trafalgar Park was Billy Guyton's happy place. His mum, Stacey, knew that. - Tasman Makos, he loved the Tasman Makos. It was his everything. - COMMENTATOR: Billy Guyton! (WHISTLE TRILLS) - The Markos were one of those Cinderella teams. Billy played over 50 times for them. - Billy Guyton, an experienced man... - There's a culture with all the former players, wherever they're playing, they'll put their fins up, and you see that, um, throughout the world, so, yeah, it's very special. - Lawyer and former Tasman Rugby Union director Craig Morris met Billy after concussions had forced him to retire... - Did he get it down initially? - ...but it also made him eligible for a payout from New Zealand Rugby. - Billy at that time wasn't healthy. There's no way he could have navigated that process by himself. - So Craig took on Billy's case pro bono. He's speaking to Sunday with the full permission of the Guyton family. How much support was he getting from New Zealand Rugby and the Players' Association? - It's my opinion that Billy wasn't getting sufficient support from those organisations. If he was, I'd like to think that there'd be no need for someone like me to assist him. - You know, it's` it's pretty tough to think about... things when` when you're in a manic, you know. You can't make good decisions, so you make any decision you want, and you think it's cool, but it's not. It's not cool ` trust me. You lose a lot of money. I've lost a lot of money. - His family say Billy's video from the time is an accurate reflection of his state of mind. - I was taking those pills for about three or four days, and then next thing, bang! I was in a mad, mad, real bad low, like. But it was` it was low, and then it was high. - Billy's erratic behaviour and anxiety was something that, um, seemed to... to correlate with what you s` what you read about with people with CTE. - Craig Morris has been involved in rugby as a player, an administrator and a ref. When he drew up Billy's will, he made a suggestion. - So I discussed with Billy whether he wanted to consider giving the ultimate gift, which was donating his brain to the brain bank. And Billy was conscious that he... he didn't want other former players to have to go through what he was going through. - His brain injury wasn't serving him well at all; he struggled to keep jobs down. A lot of` You know, a lot of the time people were thinking he was crazy. - Former Black Fern Mel Bosman gave him a job... - So if you're a back... - ...helping to coach the women's Mako team in Nelson. - He lived with constant migraines. You know, he was knocked right at the back, and he had a growth from all the knocks that he he'd had. You know, where we worked in the office, we had to rip the lights out of our office and work in the dark so Billy could work. - His main mission, she says, was player welfare. - To give the players the opportunity to learn and be educated, like he wasn't. And, you know, he knew he had a serious brain injury. And, you know, for the` for the... Sorry, I'm just going to stop that there, I think. (SNIFFLES) - It's still hard, eh? - (SIGHS) Every day has been a nightmare. (SNIFFLES) Still in the game for me, right? That was our space. - One day, Billy took me aside and told her what he thought was going on inside his head. - He was adamant he had CTE. And so he says, 'I've donated my brain to the brain bank, and I want to do good with it.' You know, how many doors he tried to kick down to bring this to light and just was slammed in his face? - Yeah, at times when he was screaming for help. - Billy's father, John Guyton. - He'd seen five different doctors... one of them was a concussion doctor, telling them all of his symptoms... and nothing was even suggested that there's a possibility of CTE. - I'd always ring up mum, you know, to help me out. - 'Can you please come and look after me?' - Billy was not coping, and he needed his mum. - Once he'd left rugby, that was it. You're on your own. There's no more. Nothing. - He had a wall cavity in the, um... in his wardrobe. He had a hole cut out of the wall. (INHALES DEEPLY) And he'd sit in there ` it was about 3ft by 4ft. He'd spend hours in there, just couldn't handle the light, couldn't handle life, and just used to sit in there until he could try and pull himself together to come out. - Billy Guyton's life came to an end in May last year... a suspected suicide He was 33 years old. - He should be still here today. And that's the hardest thing ` to try and... understand why. Why isn't he still here? - ALL CHANT: ...ka ora, ka ora! Ka mate, ka mate, ka ora! - We took Billy home to his house... and he lay in state there so everybody could, you know... (INHALES) grieve. EMOTIONALLY: And like a rainbow, you'll be in the sky forever watching over all of us. - Billy Guyton was farewelled publicly at his beloved Trafalgar Park... - I love you. I love you heaps, Bill. - ...and then at his hometown, Waimate. But this wouldn't be the end of his story. - ALL: Hi! - So we aim to have the brain, uh, in the brain bank ` or preserved in some way ` within 24 hours. - When Prof Morris Curtis saw the results of the autopsy into Billy Guyton's brain, he was shocked to find that he had stage two CTE. - Stage two is significant ` really, in anybody ` but in a young person, of course, we know that that's going to progress to stage three, stage four and eventually dementia. - Worryingly, all the blows he'd taken had altered the shape of his brain. - What we found was that the brain ` which would normally be the two hemispheres would be fused together ` because of the repeated head knocks, had actually separated. - Hi, Maurice. How you doing? - John. - For the family, a diagnosis of CTE gave them answers... - Can it be diagnosed, probable CTE, in New Zealand? - ...but it also left them with hard questions. - Yeah. So it's becoming more, uh... more common these days. - I... didn't probably believe the enormity of it... until I sort of started looking into this CTE thing. - The worst thing is knowing that my son had died to be diagnosed. Like, it's the only way of knowing. - The darkness, him hiding in a cupboard just... And when you look at Billy now with CTE, all those symptoms, it's, to me, sticking out like a sore thumb. - Symptoms neuroscientists also believe are caused by CTE. - There are a lot of studies that have been done internationally that look at how common it is to get depression or anxiety, or some of the other symptoms associated with CTE. - Sunday has repeatedly asked New Zealand Rugby if they accept the link between head knocks and CTE. - It's simply too early, and we need to do more research. - New Zealand Rugby says it's doing everything it can to make sure... - But the day after Billy Guyton's CTE diagnosis became public, New Zealand Rugby CEO Mark Robinson said this. - We feel a huge amount of sympathy to` um, to the family. We acknowledge there's an association. - That's new, but what hasn't changed is New Zealand Rugby refusing to accept that CTE causes symptoms such as depression, anxiety and dementia. - But there's a lot more work to be done to... to prove there's any stronger connection than that at this time. - What was New Zealand Rugby's duty of care to Billy? - Billy's employer had a duty to ensure that an employee wouldn't, um, leave the workplace with a long-term brain injury. - Did they fulfil their duty of care? - Now that the CTE diagnosis is in... possibly not. - New Zealand Rugby says it takes its obligations to all players extremely seriously and is continually working to reduce the risks of head impacts. - I know of at least half a dozen former professional players ` Super and All Blacks; World Cup-winning All Blacks ` who are presenting problems. - It's not about, you know, trying to get compensation or anything like that, trying to point the finger. Billy was not about that. He Is about player welfare ` and we've got to do something about it. We've got to be better at it as a sport. We've got to be better at it. - Uncomfortable truths from rugby people who don't want Billy Guyton's sacrifice to be ignored. - Do you feel like you've done justice to your mate? - I don't think I could ever do Billy justice, um... but he wanted his story told. So I'm here telling it... as best as I can. Yeah. (WAVES CRASH SOFTLY) (REFLECTIVE MUSIC) - He wanted the world to know or for New Zealand Rugby to know that... it wasn't just in his head, you know, um, these symptoms that are happening to him. He wanted to prove them wrong. - Billy's family still come together to watch rugby... - Oh, he's over. - ...but it feels different now. - I haven't let Billy rest yet, not until his mission's over. And his mission is for these boys to get help, for it to come out in the open. So as Billy's dead, I'll keep battling until we achieve his goal. How many each? - Um, seven? - Six generations of this family have played rugby in Waimate. That run may be coming to an end. You've got a 9-year-old. - Yeah, young Blayne, yeah. - Would you let him play rugby? - No, no. I already lost one son, I'm not losing another one to the game. - Well, as you heard, CTE can only be diagnosed post-mortem, but Billy Guyton might change that. Researchers say Billy's decision to donate his brain will help in their work towards developing a blood test to detect CTE. This will enable wraparound care while sufferers are still alive. E whai ake nei ` the parallel tragedy of degenerative brain disease in the elderly... - So much of who they are is literally gone. - You feel like a widower, but you still have a wife. - ...and a groundbreaking approach to aged care. - You're living the dream. (LAUGHS) - I'm living the dream too, yes, absolutely, yes. - Cheers to that. - Cheers. - Hoki mai ano. Fantastic food, spectacular weather, a gorgeous pool and rooms with all the mod cons ` at Thailand's Vivobene Resort, pampering is the priority, but this is no ordinary holiday paradise. The guests are elderly, and most have dementia. Treatment here isn't dominated by medication; it focuses on love, laughter and providing guests with the time and respect they deserve. So, asks Dimity Clancey, why aren't more aged care facilities like this? - DIMITY CLANCEY: Every day is another day in paradise for the guests staying at this lavish resort in Northern Thailand... - Winter in Thailand. - Cheers to that. - Cheers. - ...from morning meditation... - Relax your body and your mind... and your soul. - ...to mocktail-making at happy hour. (BOTH CHUCKLE) - What is it like here? - Fab. CHUCKLES: Fabulous. - It looks and feels like they're on holidays, but they're not. - Come on, you lazy boys. Come on. - They live here, at Vivobene, because they have dementia... - (LAUGHS) - ...and this is where their families believe they'll get the best care in the world. - (CHUCKLES) I know that Teresa has someone with her from 6 in the morning until 10 at night. And in the future, if I needed to make that 24 hours, I can. We'll go for a walk, and then we'll go to the market. Come on. - It's a level of care James Wise couldn't find for his wife, Teresa, back home in Australia. - Very good. - They moved here from Canberra in November 2022, when her dementia rapidly progressed. - We'll go for a walk, huh? - And they're not the only ones; Chiang Mai is full of resorts like this. - Our staff have the time to spend with her` with the guest. - It's also a big part of the reason why Nurse Brad Roberts came to Chiang Mai. - You're living the dream. (LAUGHS) - I'm living the dream too, yes, yes, absolutely, yes, yes. - The nursing homes he managed in Australia feel like a world away from the round-the-clock life of luxury here in Thailand. - This is how it's meant to be. This is how our elders... should be cared for. This is what they deserve. - Brad says the real beauty here is that there is more staff, and therefore more time, to properly look after people. - So, in Australia, typically, you'll have one care worker, um, to maybe eight to 10 or even more, uh, residents. The care can be compromised because... um, there's just not enough hands on deck. - And here, how many do they have to look after? - Anywhere from one staff member to three guests, right up to one staff member for one guest, 24 hours a day. - You call the people here 'guests'. - Mm-hm. - Why? - They're our guests at the resort, and that's how we treat them. - Between her husband and her carer, Teresa always has someone by her side. A lot of the time, she has both. The couple has had brekkie together almost every day of their 44-year marriage; only now, it's missing the most important ingredient ` conversation. What breaks your heart the most about this journey? - The thing is that there's just nothing else you can do. You feel like a widower, but you still have a wife. That's` And that's the best way I can describe it. - Do you feel like you've been grieving... - Mm-hm. - ...for years already? - Yeah, but the person's still there. - It's a feeling I know all too well. Hello. How are you? You good? 'My mum, Lorraine, has had dementia for more than a decade and now lives in a nursing home in Sydney.' I missed you. I missed you. - Did you? - Yeah. We've had to watch Mum, who always looked after us, slowly surrender to her fading mind. WHISPERS: Mama. - What? - I love you. - I love you. - I love you. - I love you. - I love you too. - I love you. - I love you, Mama. I love you. I know with my mum, you` you're constantly getting used to a new normal... - Mm, yes. - ...so what does that look like for you? - Um... it's... Well, you go through different stages, but the thing that you think most about is... how is this all going to end? And if I could... could change, you know, what might happen in the future, it would be... that... it ends without pain, without discomfort. - Would you like coffee? - Yes, please. 'No matter where you are in the world, the cruel reality of dementia is the same.' - Nice? - Nice. - Nice. How good's a coffee? You love your coffee, don't you? (CHUCKLES) You love your coffee. You've got no idea how long the road is going to be. The only certainty is that there is no getting better. One of the biggest questions I've always had is ` what is actually happening inside my mum's brain? - Yeah. Look over here, this is a healthy brain; and over here, we're looking at a brain that's got quite advanced dementia. - It's a question Prof Bryce Vissel is asked all the time. - We're trying to work out how to rescue the nerve cell connections, where memories are stored. - He's the head of Neuroscience and Regenerative Medicine at St Vincent's Hospital in Sydney... - So no one's done this. - No. - Are you serious? - ...and he's now able to show us exactly how the disease eats away at your memory. - If you look at the brain of someone who's got advanced dementia, you can see that there's quite a lot of brain tissue that has been lost. You can see the opening up here of the ventricles because we lost a lot of brain tissue around here. We are losing where we store our memories and memory function. And we go from a structure that looks like this, over to here, where you can see that it's been profoundly shrunk. - So in essence, your brain shrinks when you have dementia. - That's correct. And of course, because the brain is the seat of who we are, where we think and how we feel, how we communicate, how we talk, you must understand that the person is no longer who they were. So much of who they are is literally gone. - With no cure and only two medications approved for trial, it all comes down to care... - How am I going? Am I going all right? - Yeah, you're doing a fine job. - Happy days, mate. - ...for the person with dementia and for their family, and that's where Chiang Mai is leading the world. - Well, you need a break from the responsibility of constantly caring. - James doesn't have to worry about leaving Teresa behind at the resort to get some critical respite. - It's one of the real attractions of being up here, is that I can have a life in... and be confident that Teresa is being looked after. For the whole time I'm away, she has someone taking care of her. - Let your arm outside your armchair. - It's a level of devotion, Brad Roberts says, carers in Australian nursing homes want to give but can't. - 'They need to do something yesterday. 'What's the problem?' The industry has been crying out for decades, 'Fix the problem, fix it. 'We need more people, and then you can have good-quality care.' - Yeah. So what happens when that good-quality care is hard to find? - These pictures are confronting to look. - E haere ake nei ` the nursing homes failing the most vulnerable. - I mean, she was quite frail, um, at that point. She looks like she's been battered. (R & B MUSIC) (PHONE CHIMES) OK, OK! My Uber One membership savings don't disappoint. (MUSIC STOPS) You know what is disappointing? I was in one of the most iconic girl groups and no-one recognises me. (SCOFFS) MAN: Michelle! (R & B MUSIC) Michelle, you spit that out! Hmm? Naughty Michelle! Michelle, naughty! (MUTTERS) Who calls their dog Michelle? Sorry, but are you Michelle Williams? Yes! (CHUCKLES) Yeah. (R & B MUSIC) Dropped your wallet. (MUSIC STOPS) At least my Uber One savings don't disappoint. (R & B MUSIC) Can't take you anywhere, Michelle! (ADVENTUROUS MUSIC) - DIMITY CLANCEY: From hearty homemade food to fresh fruit and veges, there are many reasons to come to the night markets in Chiang Mai... Was Teresa a good cook? - She was a very good cook. - ...but James and Teresa Wise are here for so much more than that. - (SPEAKS THAI) - It's precious time together, even though Teresa won't remember it. She has dementia. What were the points of deterioration that have really stuck with you? - Just not being able to discuss anything, not being able to have conversations, um, that you used to have. She used to be curious about the world, about what's happening in the world. There's some prawns, huh? You're shocked by it. But then after a while, you realise that this is a one-way street. You have to think entirely for her because she can no longer think for herself. - It's been 16 months since James made the difficult decision to move from Canberra to this care resort in Northern Thailand. Vivobene can look after Teresa one on one, 24 hours a day. - The beauty of this place for someone with Alzheimer's is the luxury and the monotony. It's` Everything's the same. Her day, every day is the same, ad it keeps her calm, keeps her happier than she otherwise would be. - It's what Pia Schindler wanted for her mum, Lucy, who died from dementia last year. - It's a very long goodbye with dementia. A very long goodbye. - Pia thought an aged care facility would be the safest place for her mum, and says the first few months went smoothly. (ELVIS' 'JAILHOUSE ROCK' PLAYS) But as Lucy's dementia worsened, she became aggressive and violent, and the staff had no idea how to handle her. - There was one occasion I was called in there at 3am in the morning, and Mum was on a rampage. The staff on that occasion were inside the closet, linen closet. - Hiding? - Hiding, yeah. - When you saw your mum, what did you say to her? 'Mama, it's me, it's Pia. It's me.' Um, that's all I just kept saying. I mean, she was quite frail, um, at that point. - It's no wonder Lucy was scared. After each episode, she'd be left covered in bruises from the staff and emergency services trying to restrain her. - She looks like she's been battered. It's not OK, because I feel like there were steps that were missed prior to this, um, steps missed in terms of her medication, um, behavioural changes, um, types of care that might have been required at different stages for her, and this was just, you know, one of the occasions where this happened to her. - The awful truth is this happens every day in aged care homes. - Beep the horn, huh? (BEEP! BEEP!) - It's why nurse Brad Roberts moved to Thailand. - Tight squeeze coming through here. Breathe in. - (BREATHES IN DEEPLY) - Otherwise, we're gonna get stuck, mate. Oh, jeez. - He runs the resort where James and Teresa live and says he's never had to physically restrain any of the people now in his care. - What are you going to do today? - In fact, they're so calm, Brad says they really need to be medicated. - I've got guests, have been on medications, antipsychotics, for, you know, a number of years, and they've come here, and we've slowly weaned them off, and now they're loving life without that antipsychotic on board, and it's perfect. - Perfect, though, doesn't come cheap. James pays a little over $5000 a month for Teresa's care. It's a lot of money, but he says what you get in return is priceless. - If you go to an aged care facility, most of them, you have to stump up hundreds of thousands of dollars to buy the space to the room or the villa or whatever it is you decide to take; here, you don't have to do that, so you just pay the monthly fee. - When they're considering the move to come over here, I suggest to them, don't sell your home, rent it out, and the income that you'll get from that rent will cover the cost here at the resort. - I really want to see change. We need to find a cure. You know, we need to find a drug and solutions that really profoundly change the outcome of this disease. - For Prof Bryce Vissel, it's personal. - You know, seeing my own father's journey with dementia was... deeply confronting and very, very difficult. I still can't really face it. I mean, it's something I still find extremely difficult to deal with. - The good news is Bryce thinks he's getting close. How long will it be before people will have an option for a treatment? - Look, I think we're looking five to seven years for something that can help slow this terrible disease. And from there, we'll move on to get better and better drugs. - Scientists have long thought a build-up of protein in the brain is what causes dementia, but his team at St Vincent's Hospital in Sydney now says there's more to it. They believe the cause of the disease could be the breakdown of connections between nerve cells in the brain, and rebuilding those connections could be the key to restoring memory. It's a theory they've already got strong evidence for using mice. - This mechanism which regulates these nerve cell connections, it's like a switch on the wall. This so-called switch, this molecule, is turned down in the human brain. We know that from looking at the brains of people who passed away with dementia. And so when we then go to the mouse model, and we turn the switch back on, and we get rescue of the nerve cell connections, we get to rescue their memory. We're very, very hopeful that this may be the right` at least a way forward towards the right answer. (IT'S NATHAN LAY'S 'IT'S A LONG WAY TO TIPPERARY' PLAYS) Hope is everything in what can often feel like a helpless world. - BOTH: # It's a long way # to Tipperary. - My mum, Lorraine, has had dementia for more than 10 years. She can't say much anymore, but music still makes her heart sing. - # ...but my heart's right there. # - Whoo! - Whoo-hoo! - You've got to understand that their brain is not the brain that they had, that they have lost a lot of brain function, but they are still fundamentally the person that you love, and you've got to try and do everything you can to be there for them. They still must have and be treated with dignity and respect. - Two values Mum always taught me. And like so many families on the same journey, we sit by her side, clinging to every smile that lets us know she's still there. WHISPERS: I love you. If you could tell Teresa one thing today that she could understand with clarity, what would it be? - The message would be that, you know, she has, you know, a husband, a family, uh, lots of friends... uh... who... um, wish the best for her... uh... and, uh... if they could, uh, would` would somehow... uh, make this (VOICE BREAKS) go away. - We all wish that, don't we? - Yeah. - Ah yeah, it's heartbreaking. And when it comes to dementia in Aotearoa, there's a lot of work ahead. Alzheimer's New Zealand estimates that by 2050, 170,000 people, or 3% of the population, will be living with dementia, and aged care advocates say not enough is being done to prepare. Well, stay with us. We visit Kaikoura and its iconic seal population and find an emergency in the water. - Nau mai ano. Kaikoura's coastline is majestic. Its stunning landscapes and wildlife pull in tourists by the boatload. But right now, along that coastline, something is very wrong ` the seal population is starving, and no one's entirely sure why. A tera wiki, next week ` an ecological catastrophe in the making, we meet those raising the alarm. - We need the fur seals. They are important to the ecosystem. They are what we would call, like, a top predator. 4. - Wow, light. - 4 KG's, yeah, that's really light. I was counting, like, 20 to 40 dead animals in that same stretch. Another dead pup. I would say by the condition, it probably passed away this morning. - Have you ever seen anything like that before? - No, I've never seen anything like that here. (DRAMATIC MUSIC) - So much is special about these birds. (CHICK CHIRPS) - Kaikoura's the only place these birds live... You need to grab the top of his beak. - Fill up your puku. - ...so they are very, very vulnerable. - Is it a question of overfishing, or is it a question of climate change? - I think we already know enough to be able to act. - Yeah, warning signs we have to take seriously. We'll bring you that story next week. That is our show for this evening. We'd love for you to join us on social media or contact us via email ` sunday@tvnz.co.nz, and of course, you can find our stories on the Sunday page at TVNZ+. Thanks for watching. Nga mihi nui, hei kona.