Holding on to your sanity
Navigating the health care system as a carer.
Transcript
[BEGINNING of recorded material]
Speakers: Hamish Macdonald, Phone Line Operator, Kaele Stokes, Kevyn, Jim Rogers, Nick Smith
Kevyn: Hello. My name is Kevyn. I am a First Nations Advocate with Dementia Australia. For more than 50,000 years, we have come together to trade knowledge, to learn and to teach. Today, we join to keep up that tradition. So with that in mind, we now pay our respects to the traditional owners, to Elders past and present, to those First Nations people joining us here today.
Phone line operator: Your call is important to us. You are now 22nd in the queue.
Hamish: Now, I'm sure you're familiar with that sound, whenever you've had to book an appointment, talk to a government agency or even just change your mobile phone plan, you've probably spent enough time on hold to know that you never want to hear it again.
Jim: But if you're caring for someone living with dementia, unfortunately, you just can't escape calls like this. In fact, it could become the background noise of your entire caring journey.
Hamish: Hey there, I'm Hamish Macdonald. I'm a journalist and I recently helped manage the care for my dad, who was diagnosed with Lewy body dementia and Parkinson's.
Jim: And I'm Jim Rogers. I'm living with younger onset Alzheimer's. This is Hold the Moment — a podcast from Dementia Australia — and this episode helps you to navigate the healthcare system, and access support as a carer.
[music plays]
Hamish: So Jim, is it you waiting on hold, on the phone? Or is it your husband Ty? Or is it the kids?
Jim: It's definitely not me; it'll be Ty. He does all the nitty-gritty of that sort of stuff and it drives him mad.
Hamish: Do you know how much of it there is?
Jim: I know that he spends a lot of time, you know, getting on to these things, and it can be quite frustrating. Takes a lot of patience. Fortunately, he has that: I don't. So if it was me, I’d just hang up.
Hamish: Sounds like he's the man for the job. I mean, you can get caught up between aged care, myGov, My Aged Care. You can be dealing with geriatricians, GPs. I mean, there's a kind of whole ecosystem of numbers that you might need to be calling.
Jim: Yeah, it's a total minefield. You need to be very organised and somebody's got to do it. So you need to know who's going to do that for you. What sort of systems did you have in place Ham for this sort of thing?
Hamish: We actually downsized Dad's life as much as possible.
Jim: That’s smart.
Hamish: Which was a lot of admin at first, but we kind of culled the additional bank accounts that he didn't need, so that was all in one place. We obviously moved Dad into residential care, which meant that we could get rid of all the bills, for example, that were attached to the house. We had mail redirected. We just did anything we could to simplify the arrangements. I mean, there was still a heck of a — I was forever paying bills or dealing with people.
Jim: That is great advice for people.
Hamish: But it was actually really worthwhile. I mean, even still, you know, I'd need to call Dad and say: “I've got to log into this thing. They're going to send a one-time passcode to your phone. Can you read the PIN from your phone?” And that was always a nightmare. I'd always have to go and get a carer to go into his room. And you know, these systems are not set up for these sorts of situations, but you do find workarounds, and simplification is key.
Jim: Yeah, sounds smart.
[music plays]
Nick: “Experience vlog.” So mum had to get — we had to inquire about getting a reassessment for ACAT.
Hamish: This is Nick. He's caring for his mum, who's living with Alzheimer's. He spent so much time navigating the healthcare and dementia support system that he started tracking his own journey with it.
Nick: “Haven't heard anything so called yesterday, on the 20th of March.”
Hamish: What you're hearing now are snippets of the video diaries that Nick's recorded since taking on carer duties.
Nick: “Yeah, again, just another one of those frustrations where you hear about this when you're sort of like: ‘look, I thought we're following the process.’ You got to get on the phone again, talk to more people and work out how —. There is so much information like that was an absolute —. It was really valuable, but it was just like a landslide of information. And I can just see...”
Jim: Nick's in his early 30s and he's pretty young compared to most carers. And as an engineer, he's about as tech-savvy as they come. But even still, Nick's been struggling to access support for his mum since moving home to look after her.
Nick: I suppose Mum's condition was manageable and it was really about: start ticking the boxes you know, going through My Aged Care, getting assessed, working out what support-at-home services might look like, and from that, it just sort of kept evolving. And I think, the more I reflect on it is, there wasn't a single part of it where it was like I was a carer, or all of a sudden, you're helping with getting dressed, or you're helping with personal care. It's just little things over time, when all of a sudden you're like, “oh my God, look at all the things that I'm doing.” And it was like, “okay, well, what do we need to do now?” I can't fix the problem with my mum, but as an engineer, I can problem-solve. I can take control of all the other bits and pieces, and I can start trying to get things moving and start advocating for her and giving her a voice when she couldn't, necessarily, you know, convey her thoughts or know how to navigate part of the system.
Hamish: When my dad first started to be diagnosed and even prior to that, when we knew something was wrong, it seems like there's this kind of avalanche of information and systems and processes that is quite hard to get your head around, even if you're not suffering from some kind of neurological disease. What was it like suddenly being thrust into the complexity of the healthcare system?
Nick: It feels like such a blur, like the way I sort of put it, I feel like I've lived 100 lives in the past 18 months, but definitely at the beginning, our specialist geriatrician, was sort of fantastic in those initial steps. She was like, get assessed. She sort of gave us tips because she was like, it's painful. Like, I'm going to just sort of lay it out there. It's hard. You're going to be waiting nine to 12 months to get services. So having a little bit of certainty in the fact that this isn't going to be a quick thing, helped me at least have an appreciation for what the road ahead looks like. And then I also just started doing my own research about what the assessment process looks like, what the things I might be asking for. And one other thing that has been an underlying trend of that is whenever I ask people for anything or I, you know, do a bit of research, have all these questions a lot of the time. I reckon 50 per cent of time, they'll say, “I actually don't know the answer to that. No one's ever asked me that before.” I remember starting to research at the time when it was the ACAT, or whatever the assessment is, like, what are they going to ask about? What am I going to need to know about my mum and her current condition to make sure that we're giving an accurate picture to them? But also knowing in the future that nine to 12 months could be ‘til you start getting those services, because you have to wait for a provider to become available and a whole lot of things. We also needed to make sure that by the time that comes, we're going to have either enough funding or the right services coming in.
Hamish: How easy would it be to navigate all this if you weren't particularly digitally literate?
Nick: I don't know how people do it and they're the stories I hear. I go to support groups, and you get this referral code, and they don't realise it's on them to go find a provider, and then they lapse, and then all of a sudden they're going, “but I thought you guys were going to contact the home care provider” and then you get put on wait lists, because if you do fully-managed packages, then they need to have their own carers, and they're all understaffed. There isn't enough services, especially in rural and regional Australia. I went down the self-managed route, which saves me a certain percentage of fee, but I take on all the responsibility.
Jim: A lot of people struggle to handle that, you know, and put in that effort, and it must've took a lot of your time. Fortunately, you're that sort of very organised individual that could do it, but a lot of people can't.
Nick: I know and I think that's the real challenging thing that we're going to have to — as a government, as a nation — solve, is how do we make this easier for people to get those services? And I did a presentation to one of my support groups on ‘self-managed’ and at the end of it, I put this sort of slide. I said, these are all the digital skills and skills that I've used. And everyone just said, like, “We can't.”
Hamish: Not possible.
Nick: Not possible. And you know, there's, I just think there's a there's a really big divide and a big gap we're going to have to somehow solve to get people to be able to do this with little or no — or have choice in how they navigate the system.
[music plays]
Hamish: Do all of the different parts of the system talk to each other well?
Nick: No. And I think it's sort of in the design of it, unfortunately. There's a new aged care data and digital strategy and one of the things that came out of that was ‘tell your story once’. That was a big theme. I experienced it recently at the hospital when I told my story 10 times in three days. They just don't have it, like, where is that information? And the question, I sort of thought to myself when we went to hospital, I'm like, “Where is my mum's story?” Like, it's piecemeal. The assessment was done 18 months ago. Specialist was done six months ago. You know, it lives in my head. There is no cohesive story that sort of follows you through this journey. It is different pieces of the puzzle.
Hamish: Do you know though, I saw a geriatrician with Dad earlier this year, and he had a new AI tool, and it was a voice-to-text thing, but the AI tool actually generated a document version of Dad's story. It was quite incredible and I actually found, as the person supporting him, it was very useful, because I could then share that with my siblings.
Jim: And a reference to....
Hamish: Yeah, and say, “Look, this is where things are at. This is what the geriatrician’s saying about, you know, the near future. You know, maybe familiarise yourself with this. And if you have questions, now's the time to, to kind of dive into that.” It was a really good and valuable thing to have.
Jim: Because, not only in your position, going to all those appointments, but for yourself to relay it to siblings and other people, it's draining. You know, you've got to keep going over and it's very hard to remember everything and pull the whole thing together.
Nick: Well, I definitely feel that even this — my recounting of the story — changes depending on how I'm feeling on the day.
Jim: Of course.
Nick: What's going on in your life. And those tools, they're really powerful, like I remember — and definitely one of the other things is, is getting copies of reports — and keeping, like that bible as live as you can, and keeping hard copies of things. Obviously, I do it digitally, but if all of a sudden, when there is a crisis, you don't have any of the information, and you've got to start remembering. It just adds to the stress and the overall turbulence of going through that experience, because you just can't get it.
Hamish: One of the first things that has to happen when you're in the carer or support role is that you have to do the legal stuff that enables you to do that. There's enduring power of guardianship, enduring power of attorney. What is that? How does that happen? And how complex is that?
Nick: We were a little bit lucky, I suppose you could say. My mum, before her diagnosis, had just happened to set up the enduring guardianship and enduring power of attorney. And the way I sort of put it, is the enduring guardianship is about decisions about life and power of attorney, about financial decisions. On that, I recently had an experience where it turns out our power of attorney, which we've had for two years, wasn't operational because one of the clauses — and I got told that from the bank, I was just, I was gobsmacked. I was like, I've had this document. I've given it to people. No one's told me this.
Jim: That's crazy.
Nick: I had to get, you know, then another GP appointment, another letter that's got to get written. The other thing, just on, you know, being an authorised representative, I think, is such an undervalued piece of the puzzle. It's sort of the one thing I learnt was, any system, government organisation — just become an authorised representative on it. Like, I myself, have a My Aged Care number, and I have direct access to my mum's account as a support network. And that, to me, means I can go in and see that obviously helps having like a login on the myGov, but instead of doing two factor authentication, and then my mum having to be on the phone, and the confusion all around that.
Jim: I mean, I don't do any of that now. Ty does all of it — and when we started this process, I was learning about all of it like yourself, but it's just drained away now, and I can't remember. I can't even remember the terminology that you just recited.
Hamish: But I mean, when you sit and hear Nick explaining all of this, you know, you're aware that your husband and your daughter are doing all of these things for you. How does that feel? How does it sound to you when you're hearing the level of detail and complexity that's involved?
Jim: I think now I've come to terms with it more. I've struggled at first, because I'm so independent. I don't like the idea of any of that now, but I've sort of become at peace with it and I just accept that I just can't store that information anymore, and I struggle with looking at any of that stuff on the screen — something you would do easily. For me, it's just too overwhelming. The more I haven't done it, the less I'm interested in doing it. In fact, I can't even tell you the last time I ever looked at a bank or an account, or ever — I wouldn't even withdraw money from an ATM. I have no idea with that. I just pay as you go.
Hamish: And what's — I mean at the core of that is trust, right?
Jim: Hundred per cent.
Hamish: Yeah. So can you describe what it's like to sort of give that trust to someone that's in your life? Because that's so total, you know, what you're doing.
Jim: I'm so fortunate that I would trust them with my life, anyway. I have no qualms at all. A hundred per cent, I know they have my best interests at heart, so I'm very at peace with that. But it would be awful if you had a tumultuous type of relationship where you weren't so relaxed with the person that was going to be in charge of you. So I'm very, very grateful that I don't have that worry. You know, bigger fish to fry. I don't worry about it. I couldn’t borrow it from you if I run out.
[music plays]
Hamish: So Nick, it sounds like you're trying to come at this as an engineer. You're very sensible and thoughtful, obviously, about processes and timelines, but this is also your mum that we're talking about. It's an emotional experience. How do you balance the emotion with the responsibility-side of caring.
Nick: It took me a while to go from being an organiser, just the day-to-day things, to actually saying, I identify as a carer, and I did look after myself, so I reached out through the Carer Gateway to seek counselling services through them. And you know, I thought they were going to sit down. I was like, “I don't want strategies. I don't want to sit down and you tell me I will do these things.” And I remember this one counsellor sat down and said, “These are all the things I can do.” And one of them was, “I can just sit here and listen.” And, you know, every fortnight, or whenever we had the appointments — no matter how much could be going on, and I'm so busy with organising and caring — those sessions were so important. Just to sit down and unload on an impartial party, and have some of my thoughts reflected back, and help me process some of what I was going through.
Hamish: And Dementia Australia also offers counselling services, so we will put links to both of those resources in our episode notes. But Nick, what was the impact of that counselling for you? How did it help? People listening might be in your situation, might have so much on their plate that they don't necessarily feel like it's an immediate priority.
Nick: I feel like it just freed up the mental and emotional state to keep going. Really for me, just having that person there, having that hour that was just for me. I'd always leave like I'd released a burden and then I could reset, and I could get back on with whatever disaster you're trying to solve for that day, that day, week, month.
Jim: And Nick, you're also very young as a carer. You're in your 30s. How does being a carer impact your social life?
Nick: When I was sort of going through this and I was getting counselling, and I was going to support groups — that was my life, that was — so much was having these conversations and getting support from people in similar situations where I’d been through it, and I would obviously keep my friends up to date when I saw them, but for me personally, I almost sort of said, “I'll give you the update, but I just want us to be friends. I want me to be 30 again.”
Jim: Yeah.
Nick: I don't need to be reliving it every time I saw them and I was just trying to find other avenues, and other areas for me to get that emotional support.
Jim: What top tips would you recommend were put in place to help people in your position who've got to take control and help somebody who's now diagnosed?
Nick: So many.
[laughter]
Nick: I think there's probably a few key ones. I think, always ask questions. Always be thinking ahead — and you're the expert in the care of your loved one, or the person you're caring for. And a lot of the time, from my experience, you'll have someone come in and they'll do an assessment that takes half an hour, and that might not necessarily capture some of the things that you might want — or you might not understand what services they can offer. So always asking the question about, you know, “what else? What else can we get? What else can we get in the home?” to really sort of tease out — they might not capture some of the things that have been discussed in that little, half-an-hour assessment. The other big one is, again — different for everyone, but try and keep a record of who you're talking to and the dates and the people.
Jim: Yeah that’s key. A dedicated book just for this.
Nick: Yeah. And I call my mum's file ‘the bible’ and everything goes...
Jim: Yeah.
Hamish: You've got one too?
Jim: I've got one. High five, yeah.
Nick: And that's what I call — like everything goes into that, because you just so quickly get overwhelmed with the numbers you're calling, the people you're talking to.
Jim: And everybody changes as well. You get a different person who doesn't know the back story and you've gotta — you're constantly reviewing everything that's happened.
Hamish: How do you articulate what that function is and what that role is, when you're helping your mum interact with the health system?
Nick: I don't really know how I'd term it, but what I used to sort of say to my mum, I was like: “Mum, you just focus on living — and I’ll sort all the administrative burden. Obviously, communicated a lot during our sessions with our specialist and they helped us, maybe identify future needs. And you know, when things were getting more difficult at home, there were just times I had to have those conversations with my mum, and I was like, you know, “this is about helping you, but it's also about helping me. Because, you know, what we're really trying to do is keep you here at home as long as possible.” So sometimes I had to sort of just almost ask her, “can you please accept more help, because it's going to help me and we can keep in this situation.”
Hamish: If you look back on the whole experience now, what have you learned about caring?
Nick: That it's hard. Every time I look back on it that I go, “oh yeah, God, I forgot about that. That was silly, or that was — I can't believe that that thing happened.” But I don't think there's any — nothing necessarily that, that I've learned from it, apart from one reflection that I always do have when I read back through the report, is you grow up and you get into a career, and it's about, for me, you know, the promotion, and it's, you're trying to create a sense of accomplishment in everything you're doing. And I found that when I went to a caring role, and I'm trying to do all these things, but you never had that sense of accomplishment, because it's just the next thing. It's this never-ending list of things that you have to go through. And to me, that was, at the time, quite — it was so disheartening. And it's something, whenever I look back on it, I just remember thinking, you get to the thing, and you almost want someone to call you and go, “hey, good job. You got your package!” You know?
Jim: And also a little bit of that is that, you know, that's usually the role of your mum, you know, that would be there for you to go, "hey Mum, this is where I'm at." And but instead, sadly, that's taken away from you, and that role, as we discussed, has been reversed now. And so, you sort of, you miss out on that a little bit.
Nick: Definitely. You know, when I when I was working, my mum would be like, “how's the boss going? How's the project going?” You know, you would have those conversations. And then all of a sudden, it's almost that part of life we're conditioned to, sort of just evaporates, and you just get stuck in this big mess of things you need to do with no end point, with what is really diminishing returns at the end of the day, sadly, with my mum, with her quite quick decline.
[music plays]
Hamish: So some pretty big changes recently for your mum and I guess consequently for you. What's happened? What's changed?
Nick: So my mum had COVID a couple of months ago — and that made her really quite unwell, as it did all of us. She hadn't had COVID at all and went to the GP. Ended up going to emergency. Everything was clear. And then over the course of about three days following, her recovering from COVID, the decline was unbelievably rapid. I mean multitudes, than the previous day: the mobility, the paranoia, the confusion. My mum can sleep through a storm, now she's getting up at night asking, “what are we doing? What's going on? Where am I?” One minute, you know, I can't leave her because I give her security. The next minute, I'm enemy number one.
[music plays]
Nick: I mean, over the course of three days, we were sort of waiting to talk to a specialist or a GP about permanent care, and I had a chat to a really good family friend, and she just said, “look, this is an acute decline. You need to go to hospital. That's what it is.” It was just so surprising that I needed someone to tell me that. It was like, I wasn't going to make that decision myself. Luckily, a speech therapist was there that day as well, and she just said, “I can see how scared and frightened you are, like in your facial expressions. It must be horrifying being in your mind and body right now.” And had a chat to Mum. She was happy to take an ambulance and now we are looking at placing her in permanent care. She was very adamant she never wanted to go into care. And she was always, you know, that was in the back of her mind, “just don't put me in a home. Don't put me in a home.” But after discussing with the specialist, my sister and I just made the proactive decision to just start looking at places to get a feel for what they are. So when the time comes, we can have that discussion with my mum. And thankfully, or luckily, you know, we have looked at a few places, but for me personally, to sort of desensitise myself, I actually volunteered for the aged care volunteer visitors’ scheme. And you go into a nursing home and or someone at home and you just visit them for an hour.
Jim: That's fantastic. That gave you a genuine insight as well.
Nick: Yeah, and also insight into the homes in the area. Getting people's opinion, I think, is important. There's never going to be a right or a wrong answer, but I just find, for me, the more information I can get, the more informed decision I can make.
Hamish: Now that the time has come for this. How are you feeling about your mum going to permanent residential care?
Nick: I feel a large part of me wants to take her home, and try and care for her at home just a little bit longer, because she's currently having to transfer to respite before we potentially get a bed. And I have to keep telling myself, like no, like, “I can't provide that support”, but Mum, my mum, is also aware enough that she realises that she does need that round-the-clock care, and that's something that can't be provided at home. She's obviously upset about it, but I'm trying to look at the glass half full, and I think that she will have a fuller life in a home that is designed to stimulate and to…
Jim: To support her. Completely.
Nick: Instead of her just being at home and not being active and me not being able to give her what she needs.
Hamish: What do you remember most fondly about your mum?
Nick: Isn't it strange? I knew this question would come up. And do you know what's really hard and I think it's probably the hardest thing to process, is the last 18 months. It's probably the longest I've spent with my mum since I was a child. And that's so much all I can remember of her. And I find it so hard to think back to what she was before. That question of what my mum was like. I get a lot of it through her friends. And you know, one of my really good mates came over and he was like, “oh, your mum was so quick-witted and funny,” and that helps me remember, that helps remind me of who she was, because I do just have this real visceral feeling of the person she is now, because that is what I've lived — for what feels like forever.
Hamish: I think, obviously, well done, Nick. You've looked after your mum beautifully, by the sound of things.
Nick: Thank you.
[music plays]
Hamish: As Nick pointed out, he's about as digitally literate as it gets. But if you're not an engineer or a technology whiz, what do you do? Kaele Stokes is the Executive Director of Services, Advocacy and Research at Dementia Australia. She's worked with countless families, trying to access care and support, and she's worked with the agencies that offer that care and support. So, she knows how tough it is for new carers.
Kaele: I think Nick's story really does reflect the challenges that lots of family carers have when it comes to supporting a person living with dementia. We've spoken to thousands of carers over the last few years and the fundamental challenges that they experience tend to be the same: which is not knowing what they should even be looking for, not knowing what services are out there that are available for people that are living with dementia, not knowing whether services are general or more specific to people living with dementia. We hear all these sorts of stories and unfortunately, we've still got a long way to go before we have a really integrated system that allows people to move through healthcare, disability, aged care in a seamless way. It's sort of the holy grail of service provision, but we've got a long way to go.
Hamish: It strikes me though that the reason why someone might have reached a point of diagnosis is that they're struggling with things, and so, suddenly, someone that is finding it hard to make decisions or hard to plan or is having difficulty processing things in front of them, is being presented with the biggest wave of decisions and new information that they might have experienced in some time. Is there any way around that?
Kaele: You're absolutely right, Hamish. We do tend to hear from people, particularly when there's a point of crisis and a lot of the work that Dementia Australia is doing is trying to work with people to pre-empt those — well, or avoid those — crises altogether. So having a much more planned conversation around what's going to happen — the sorts of conversations that Jim, you've been talking about in previous episodes — where it's around understanding the trajectory of dementia, what sort of challenges might come up, but also knowing who to talk to at the times where things do escalate or change in a more sudden way, because we know that that does happen as part of a dementia trajectory. It's not a steady trajectory. It's got spikes and changes that can occur pretty quickly.
Jim: That's so right. I think it's really difficult when you come to terms with somebody becoming a carer, or even to look at yourself as a carer. Even Ty said on the way here today, you know, he still doesn't consider himself to be my carer. And I said, “well, you do care for me and it's care and support.” So it's a segue in, isn't it?
Kaele: It is. Yeah, it is. And I think you know, it does take people a little while to adjust to that, and you know that can also be reflected in the way that people engage with each other as well. So there's that shift in dynamic, or shift in communication that that can be really awkward at the beginning and challenging to have that sort of conversation, where you're ultimately responsible for somebody else.
Hamish: Not to be too boring about it, but what's the shopping list of platforms and gateways and services that you're going to hear about if you're going through this now and you're maybe at the start of the journey?
Kaele: Probably the first port of call is talking to your healthcare professional, so your GP — around the changes that you're experiencing. They may or may not refer you to a specialist, and that could be a neurologist, a geriatrician, a psychogeriatrician; some kind of specialist that has dementia in their specialisation. And that can be part of a hospital system. It might be a private practice. So, getting a formal diagnosis through those means can be really important. And then often we do hear that people can live pretty well at home before they need any formal support services. So it might be the accessing post-diagnostic support programs, like the ones that Dementia Australia has, can be useful for planning and thinking about the future, but often there is a sustained period of time where people can live independently and continue to do the things that they've been doing. Where care needs do start to change — depending on the age of the person, and I hate the phrase ‘care recipient’, but depending on the age of the person — it might be that someone has to apply for supports through the National Disability Insurance Scheme. So there is an assessment process that they go through to access those supports. If they're over the age of 65, then they would be directed to My Aged Care, which is the federal government platform for all aged care services, whether they're delivered in the home or in a residential care setting. All of those services, irrespective of whether it's the National Disability Insurance Scheme or My Aged Care, require an assessment from independent staff that will look at the care needs of the individual, and then, you know, plan from there.
Hamish: So when we went through this, I was told, “you need to get your codes.” You're sort of smirking at that question. What does that mean?
Kaele: Unfortunately, people who work in the system tend to forget that the system is completely incomprehensible to anybody not working in the system. So, understanding the different components of an aged care assessment and understanding, you know, the results and how that translates into care, should be supported by the aged care system or the disability system to help people understand it, but it can be really complicated, and people often do speak another language, so that can be really challenging, and that's where organisations like Dementia Australia can be helpful. Because whilst we are not directly involved in doing assessments through the aged care system, et cetera, we do have the ability to support people to go through the assessment process and help them understand what it actually means in lay people's terms.
Jim: So what sort of progress do you think is happening to make those services more cohesive for people? Can you see steps of progression?
Kaele: I think there is steps. And I have been around the sector for longer than I care to think about, and it's slow. And, you know, often people talk to me about the fact that, you know, they've been trying to see change for a long time, and their time is running out, right? And they want to see change, and it is really slow, because we're talking about legislative systems that have to talk to each other. The Department of Health and Aged Care does have a reform branch that's looking at all of the different aged care reforms, including how legislation ‘harmonises’ I think, is the word they use, with other parts of the system, including healthcare, hospitals, disability. But you know, it's slow going.
Jim: Just from a personal point, from my experience, it is so lonely. You're so isolated once you get that diagnosis, because you just don't know where to begin. I think what Dementia Australia provides, I think you're in it, so you forget how amazing it is. And from what I've seen, like it is just such a fantastic crutch for people to lean on — even to be advised to come and be soothed by our podcast, which gives you so many tidbits and so much info.
Kaele: Yeah.
Jim: Like, those things are so invaluable to anybody who's moving into that care situation.
Kaele: Yeah.
Jim: You know, it feels very lonely.
Kaele: Yeah and Nick and other carers talked about, you know, just the amount of information…
Jim: It was amazing.
Kaele: …they try to absorb in understanding their caring role and what they need to do. And he was fortunate that his geriatrician was well-informed about the system and able to provide some initial guidance. But lots of people don't necessarily have that, or they have conversations where it's like, “well, got a diagnosis of dementia. You know, we'll see you when you when you need formal care and good luck.”
Jim: Exactly.
Kaele: And there's so much more that can be done in that, you know, in that intervening period.
Hamish: On that, when I get approached and asked questions about it, I'm always encouraging people to sort of get help and guidance, and assistance early, but a lot of the feedback is, well, we'll cross that bridge when we come to it. There's a kind of feeling that unless we're right in the worst of it, we're just kind of ‘hands off’ for now. Is there a time that's right to start seeking some of this assistance?
Kaele: Having conversations as early as possible — even if they are uncomfortable and a bit, you know, squirmy — is important, because it can take the heat off at times where there are decisions to be made. And you know, family carers will often talk about their reassurance in having conversations earlier, because even if care needs change and a person with dementia can't be part of the conversation in the way that they used to, the family members feel that they've got a good sense of what that person wanted, because they've spoken to them about it. As opposed to guessing and thinking, “I hope that's what, you know, they would have wanted if they were able to talk about it.”
Hamish: Kaele, thank you very much.
Kaele: Thank you.
Jim: That’s such great advice. Thanks for coming in.
Kaele: Thank you.
[music plays]
Hamish: If you do want some really nitty-gritty, practical advice, make sure you listen to our companion helpline episode.
Jim: You'll hear from Kristin. She's one of the advisors on Dementia Australia's free helpline. And the helpline is available 24/7 so if you need somebody to talk to...
Hamish: You can find the bonus helpline episode wherever you listen to podcasts or on the Dementia Australia website. You can also call the helpline directly for tips and advice. It's 1800 100 500.
Jim: Hold the Moment is a podcast from Dementia Australia, produced by Deadset Studios. You can find more episodes and resources on Dementia Australia's website, dementia.org.au. The show is hosted by me, Jim Rogers.
Hamish: And by me, Hamish Macdonald. The executive producers are Kellie Riordan and Gia Moylan. The producers are Madeleine Hawcroft and Liam Riordan. Production manager is Ann Chesterman. Sound design by Ryan Pemberton. A special thanks to the whole team at Dementia Australia and to everyone who shared their stories on this podcast.
[END of recorded material]
About the episode
At 30 years old, Nick moved back home to care for his mum when she was diagnosed with dementia, hoping that being with her in person would make things easier. But Nick spent much of his time online, navigating a complex healthcare system of agencies that don’t seem to speak to each other. Here’s how he made it work
Watch the interview
In this video we go one on one with our podcast guests
Transcript
[BEGINNING OF RECORDED MATERIAL]
Nick: Mum's condition was manageable. It was really about ticking the boxes and then it was like, and that was when, I dunno, I, probably me trying to problem solve, I can't fix the problem with my mum, but as an engineer, I can problem solve, take...
Jim: Control of this.
Nick: I can take control of all the other bits and pieces and I can start trying to get things moving and start advocating for her and giving her a voice when she couldn't necessarily, you know, convey her thoughts or know how to navigate part of the system.
Hamish: I know when my dad first started to be diagnosed and even prior to that, when we knew something was wrong, it seems like there's this kind of avalanche of information and systems and processes that is quite hard to get your head around, even if you're not suffering from some kind of neurological disease. What was it like suddenly being thrust into the complexity of the healthcare system?
Nick: It feels like such a blur. Like the way I sort of put it, I feel like I've lived a hundred lives in the past 18 months. But definitely at the beginning, our specialist geriatrician was sort of fantastic in those initial steps. She was like, get assessed, make sure that you're… She sort of gave us tips because she was like, it's painful. Like, I'm going to just sort of lay it out there. It's hard. You're going to be waiting nine to twelve months to get services. So, having a little bit of certainty in the fact that this isn't going to be a quick thing, helped me at least have an appreciation for what's going, what the road ahead looks like. And then I also just started doing my own research about what the assessment process looks like, what the things I might be asking for. I remember starting to research at the time when it was the 'ACAT' or whatever the assessment is. Like, what are they going to ask about? What am I going to need to know about my mum and her current condition to make sure that we're giving an accurate picture to them. But also knowing, in the future, that nine to 12 months could be until you start getting those services because you have to wait for a provider to become available and a whole lot of things. We also needed to make sure that by the time that comes, we're going to have either enough funding or the right services coming into the house.
Jim: So, it's been one step ahead, literally.
Nick: Yes, all the time.
Hamish: How easy would it be to navigate all of this if you weren't particularly digitally literate?
Nick: I don’t know how people do it, and they're the stories I hear. I go to support groups and people like you said, you get this referral code and they don't realise it's on them to go find a provider and then they lapse and then all of a sudden, they're going, “But I thought you guys were going to contact the home-care provider?” And then you get put on wait lists because if you do fully managed packages, then they need to have their own carers and they're all understaffed. There isn't enough services, especially in rural and regional Australia. I went down the self-managed route, which saves me a certain percentage of fee, but I take on all the responsibility.
Jim: But a lot of people can't.
Nick: I know, and I think that's the real challenging thing that we're going to have to, as a government, as a nation, solve, is how do we make this easier for people to get those services. And I did a presentation to one of my support groups on self-managed, and at the end of it, I put this sort of slide, I said, “These are all the digital skills and skills that I've used” and everyone just said like, "Well, we can't..."
Hamish: Not possible.
Nick: Not possible. And you know, there's, I just think there's a, there's a really big divide and a big gap we're going to have to somehow solve to get people to be able to do this with little or no, or have choice in how they navigate the system.
Hamish: Do all of the different parts of the system talk to each other well?
Nick: No, and I think it's sort of in the design of it, unfortunately, as a new aged care data and digital strategy. And one of the things that came out of that was 'tell your story once.' That was a big theme, and I experienced it recently at the hospital when I told my story 10 days and in, you know, 10 days, 10 times in three days because…
Jim: Repetitively.
Nick: … they just don't have all that. Where is that information? And the question I sort of thought to myself when we went to hospital, I'm like, “Where is my mum's story?” Like it's, it's piecemeal. The assessment was done 18 months ago. Specialist was done six months ago. You know, it lives in my head. There is no cohesive story that sort of follows you through this journey. It is different pieces of the puzzle.
Hamish: Do you know though, I saw a geriatrician with dad earlier this year and he had a new AI tool, which he asked us at the beginning, were we comfortable with him using?
Jim: Wow.
Hamish: And it was a, a voice to text thing. But the AI tool actually generated a document version of dad's story. It was quite incredible and I actually found as the person supporting him, it was very useful because I could then share that with my siblings.
Jim: And a reference too.
Hamish: Yeah, and say, “Look, this is where things are at; this is what the geriatrician is saying, about you know, the near future, you know, maybe familiarise yourself with this and if you have questions, now's the time to kind of dive into that.” It was a really good…
Jim: Because not only in your position going to all those appointments, but for yourself to relay it to siblings and other people, it's draining. You know, you've got to keep going over it and it's very hard to remember everything and pull the whole thing together.
Nick: Well, I definitely feel that this, even this, my recounting of the story changes depending on how I'm feeling on the day.
Jim: Of course.
Nick: What's going on in your life and those tools, they're really powerful. Like, I remember, and definitely one of the other things is getting copies of reports and keeping like that ‘Bible’ as live as you can and keeping hard copies of things. Obviously, I do it digitally. But, it, all of a sudden when there is a crisis, you don't have any of the information and you've got to start remembering, you know, it just adds to the stress and the overall turbulence of going through that experience because you just can't get it.
Hamish: One of the first things that has to happen, when you are in the carer, or support role, is that you have to do the legal stuff that enables you to do that. There's 'enduring power of guardianship', 'enduring power of attorney'. What is that? How does that happen? And how complex is that?
Nick: We were a little bit lucky I suppose you could say. My mum, before her diagnosis, had just happened to set up the enduring guardianship and enduring power of attorney. And I, the way I sort of put it is, in the enduring guardianship is about decisions, about life, and power of attorney, about financial decisions. But on that, I recently had an experience where it turns out, our power of attorney, which we've had for two years, wasn't operational because of one of the clauses. And I got told that from the bank and I said, I was just, I was gobsmacked. I was like, “I've had this document, I've given it to people, no one's told me this”.
Jim: That's crazy.
Nick: Yeah. I had to get, you know then, another GP appointment, another letter that's got to get written. The other thing just on, you know, being an authorised representative, I think, is such an undervalued piece of the puzzle. It's sort of the one thing I learned was, any system, government organization, just become an authorised representative on it. Like, I myself have a 'My Aged Care' number and I have direct access to my mum's account as a support network. And that to me, means I can go in...
Jim: Log in at any time and look.
Nick: … and see that obviously it helps helping, I can log-in on the 'myGov' but instead of doing two-factor authentication and then my mum having to be on the phone and the confusion all around that.
Hamish: Yeah. When my dad first went into care, you know, one of the things that became very difficult for him was using the phone and I was obviously taking over a lot of the administration of his life, but the two-factor authentication was still set up with his phone. So, I had these insane phone calls where I'd ring him and be like, “Can you check the text and read me the number.”
Jim: Oh my God.
Hamish: And they'd be like 25-minute phone calls that would end up with just getting the carer to go in and the, it was just a nightmare.
Nick: I know, you know, sometimes you're sitting there on two phones. I'm trying to log in onto two different platforms and…
Jim: Yeah, I mean, I don't do any of that now, Tye does all of it. And when we started this process, I was learning about all it, like yourself, but it's just drained away now and I can't remember, I can't even remember the terminology that you just recited.
Hamish: But I mean, when you sit and hear Nick explaining all of this, you know, you're aware that your husband and your daughter are doing all of these things for you. How does that feel? How does it sound to you when you are hearing the level of detail and complexity that's involved?
Jim: I think now, I've come to terms with it more. I've struggled at first, because, I'm so independent, I don't like the idea of any of that now, but I've sort of become at peace with it, and I just accept that I just can't store that information anymore and I struggle with looking at any of that stuff on the screen. Something you would do easily, for me, I just, it's just too overwhelming. The more, the more I haven't done it, the less I'm interested in doing it. In fact, I can't even tell you the last time I ever looked at a bank or an account or ever, we couldn't, wouldn't even withdraw money from an ATM. I have no idea with that now. I just pay as you go.
Hamish: And what's a, I mean at the core of that is trust, right?
Jim: Hundred percent.
Hamish: Yeah, so can you describe what it's like to sort of give that trust to someone that's in your life? Because that's so total, you know, what you're doing.
Jim: I'm so fortunate that I would trust them with my life anyway. So, I have that full, I'll have no qualms at all, a hundred percent. I know they have my best interest at heart, so I'm very at peace with that. But it would be awful if you had a tumultuous type of relationship where you weren't so relaxed with the person that was going to be in charge of you. So, I'm very, very grateful that I don't have that worry.
Hamish: Mm.
Jim: So, I feel quite at peace with it. It doesn't bother me anymore. I'm like, you know, bigger fish to fry. I don't worry about it. I could borrow it from you if I run out.
Hamish: If you're lucky.
Nick: Until it stops tapping right?
Hamish: This is a podcast, so listeners can't see that you're a big burly bloke. How has it been for you to navigate the complexity of that situation where you have very deep feelings and emotions about the situation and what your mum's going through. You have a relationship that matters to you. You've got your kind of outward projection of yourself, but then you've also got a role to play for her as support. Talk me through that.
Nick: It took me a while to go from being an organiser, just the day-to-day things, to actually saying, “I identify as a carer and I need to look after myself.” So, I reached out through the Carer Gateway to seek counselling services through them. And you know, I thought they were going to sit down. I was like, “I don't want strategies, I don't want to sit down and you tell me or do these things.” And I remember this one counsellor sat down and said, "These are all the things I can do." And one of them was, “I can just sit here and listen.” And, you know, every fortnight or whenever we had the appointments, no matter how much could be going on and I'm so busy with organising and caring, those sessions were so important just to sit down, unload on, on an impartial party and have some of my thoughts reflected back and helped me process some of what I was going through. I feel like it just freed up the mental and emotional state to keep going. Really, for me, just having that person there, having that hour, that was just for me.
Jim: Yeah.
Nick: I'd always leave, like I've released a burden and then I could reset and I could get back on with whatever disaster you're trying to solve for that day, that day, week, month. When I was sort of going through this and I was getting counselling and I was going to support groups, that was my life. That was so much, was having these conversations and getting support from people in similar situations where I've been through it. And, I would obviously keep my friends up to date when I'd saw them. But for me personally, I almost sort of said, “I'll give you the update, but I just want us to be friends. I want me to be 30 again and let's just have fun.”
Jim: You needed release with them.
Nick: Yeah, I don't need to be reliving it every time I saw them, and I was just trying to find other avenues and other areas for me to get that emotional support.
Jim: What top tips would you recommend were put in place to help people in your position who've got to take control and help somebody who's now diagnosed?
Nick: Oh, there's so many. I think there's probably a few key ones. I think always ask questions, always be thinking ahead and you're the expert in the care of your loved one or the person you're caring for. And a lot of the time, from my experience, you'll have someone come in and they'll do an assessment that takes half an hour, and that might not necessarily capture some of the things that you might want, or you might not understand what services they can offer. So always asking the question about, you know, what else, what else can we get? What else can we get in the home to really sort of tease out, they might not capture some of the things that have been discussed in that little half an hour assessment. The other big one is, again, different for everyone, but, try and keep a record of who you're talking to and the dates.
Jim: Yeh, that's key.
Nick: And the people and I...
Jim: A dedicated book just for this.
Nick: Yeah, and I call my mum; I call my mum's file the 'Bible' and everything goes…
Jim: That's, we...
Nick: You've got one too?
Jim: I've got one. High five. Yeah.
Nick: And that's what I call it, like everything goes into that because you just so quickly get overwhelmed with it, the numbers you're calling, the people you're talking to.
Jim: And everybody changes as well. You get a different person who doesn't know the backstory. You've got to, you're constantly reviewing everything that's happened.
Hamish: How do you articulate what that function is and what that role is when you, when you're helping your mum interact with the health system?
Nick: Oh, I don't really know how I’d term it, but what I used to sort of say to my mum, I was like, "Mum, you just focus on living, and I'll sort out all the...
Jim: I'll take care of the rest.
Nick: …I'll sort out all the administrative burden." Obviously communicated a lot during our sessions with our specialist and they helped us maybe identify future needs. And you know, when things were getting more difficult at home, there were just times I had to have those conversations with my mum, and I was like, you know, “this is about helping you, but it's also about helping me because you know, what we're really trying to do is keep you here at home as long as possible.” So sometimes I had to sort of just almost ask her, “Can you please accept more help because it's going to help me in keeping this situation.”
Hamish: Do, have you, like, if you look back on it now, can you say what you've learned?
Nick: That it's hard, every time I look back on it that I go, “Oh yeah, God, I forgot about that, that was silly,” or that was, “I can't believe that that thing happened.” But I don't think there's any, nothing necessarily that I've learned from it. Apart from one reflection that I always do have when I read back through the report is, I came, you come from a, you grow up and you get into a career and it's about, for me, you know, the promotion and it's, you're trying to create a sense of accomplishment in everything you're doing. And I found that when I went to a caring role, and I'm trying to do all these things, but you never had that sense of accomplishment because it's just the next thing. It's this never-ending list of things that you have to go through. and to me that was, at the time, quite, it was so disheartening, and it's something whenever I look back on it, I just remember thinking, you get to the thing and you almost want someone to call you and go, "Hey, well, good job, well done." "You've got, you've got your package," you know?
Jim: And also, a little bit of that is that, you know, that's usually the role of your mum, you know, that would be there for you to go, "Hey mum, this is where I'm at." But instead, sadly, that's taken away from you and that role as we discussed has been reversed now and so, you sort of, you miss out on that a little bit.
Nick: Yeah, yeah, definitely. Like, you know, when I, when I was working, my mum would be like, "How's the boss going?" "How's the project going?" You know? You would have those conversations and then all of a sudden it's almost that part of life we're conditioned to, sort of just evaporates, and you just get stuck in this big mess of things you need to do with no end point with what is really diminishing returns at the end of the day, sadly with my mum, with her quite, quick decline.
Hamish: So, some pretty big changes recently for your mum and I guess consequently for you. What's happened? What's changed?
Nick: So, my mum had COVID a couple of months ago and that made her really quite unwell, as it did all of us. She hadn't had COVID at all and went to the GP, ended up going to emergency, everything was clear. And then over the course of about three days following the following her recovering from COVID, it, the decline was unbelievably rapid. I mean multitudes, what, the day than the previous day, the mobility, the paranoia, the confusion, not that she, my mum could sleep, could sleep through...
Jim: A storm.
Nick: Could sleep, could sleep through a storm, now she's getting up at night asking "What are we doing?" "What's going on?", "Where am I?" One minute, you know, I can't leave her because I...
Jim: So sad.
Nick: ...give her the security. The next minute, I'm enemy number one. And then over the course of three days, we were sort of waiting to talk to a specialist or a GP about permanent care and had a chat to a really good family friend and she just said, "Look, this is an acute decline, you need to go to hospital." That's, that's what it is. And it was just so surprising that I needed someone to tell me that. It was like I wasn't going to make that decision myself. And yeah, luckily, a speech therapist was there that day as well, and she just said, “I can see how scared and frightened you are, like in your facial expressions. It must be horrifying being in your mind and body right now.” And, had a chat to mum and she was happy to take an ambulance and now we are looking at placing her in permanent care. My mum, she was very adamant, she never wanted to go into care and she was always, you know, that was in the back of her mind, just don't put me in a home, don't put me in a home. But after discussing with the specialist, my sister and I just made the proactive decision to just start looking at places to get a feel for what they are so when the time comes, we can have that discussion.
Jim: With what you're dealing with.
Nick: With my mum and thankfully, or luckily, you know, we had looked at a few places, but for me personally to sort of desensitise myself, I actually volunteered through the 'Aged Care Volunteer Visitors Scheme' and you go into a nursing home and or someone at a home and you just visit them for an hour.
Jim: That's fantastic. That gave you a genuine insight as well.
Nick: Yep, yep, and also insight into the homes in the area.
Jim: Yeah, and how it all works.
Nick: Yeah, because he was able to tell me, well, you know, it's just getting, it's getting people's opinion I think is important. There's, there's never going to be a right or a wrong, right or a wrong answer but I just find for me, the more information I can get, the more informed decisions I can make.
Hamish: Now that the time has come for this, how are you feeling about your mum going into permanent residential care?
Nick: I feel, this, a large part of me wants to take her home and try and care for at home just a little bit longer because she's currently having to transfer to respite before we potentially get a bed and I have to keep telling myself like, "No, like I can't provide that support”. But mum, my mum is also aware enough that she realises that she does need that round-the-clock care and that's something that can't be provided at home. She's obviously upset about it, but I'm trying to look at the glass half full, and I think that she will have a fuller life in a home that is designed to, to stimulate and to keep...
Jim: And support her completely.
Nick: Instead of her just being at home and not being active and me not being able to give her what she needs.
Hamish: What do you remember most fondly about your mum?
Nick: Isn't it strange? I knew this question would come up and do you know what's really hard? And I think it's probably the hardest in the process, is the last 18 months. It's probably the longest I've spent with my mum since I was a child and that's so much of all I can remember of her and I find it so hard to think back to what she was before. That question of “Well, what, what my mum was like”, I get a lot of it through her friends and, you know, one of my really good mates came over and he was like, "Oh, your mum was so quick, you know, quick-witted and funny" and that helps me remember, you know. Her friends that she worked with for 20 years, you know, and that helps remind me of who she was because I do just have this real visceral feeling of the person she is now because that is what I've lived for, what it feels like forever.
Hamish: Well done, Nick. You've looked after your mum beautifully by the sounds of things.
Jim: Amazing.
Nick: Thank you.
Hamish: Thanks for this.
Jim: Hold The Moment is a podcast from Dementia Australia produced by Deadset Studios.
[Title Card: Hold the Moment
Call our National Dementia Helpline
For 24/7 support
1800 100 500
End of Title Card]
[END OF RECORDED MATERIAL]
Bonus episode
Transcript
[BEGINNING of recorded material]
Speakers: Helpline Kristin, Jim Rogers
Jim: Figuring out the healthcare system and accessing care for your loved one with dementia can sometimes feel like you've been dropped into a maze without a map. You're trying to understand mygov, Carer Gateway, residential care, geriatricians and GPs, who all speak a language you quickly need to become fluent in. Hi, I'm Jim Rogers, and this is Hold the Moment. This is Australia's only podcast just about dementia. It is brilliant, so listen to it. It really helps. If you're feeling lost, you're not alone, and there are things you can do to try and streamline and simplify your caring responsibilities. We have a full episode available for you, which helps you navigate the healthcare system. And in this bonus episode, there's more help from Kristin, an advisor on the National Dementia Helpline.
Kristin: I'm Kristin. When you reach out to the helpline, you'll connect to an advisor like me on the telephone, by webchat or email.
Jim: Advisors like Kristin are available 24 hours a day, every day of the year, and they have all kinds of tips and resources to help you through the maze.
Kristin: One of the things you might find in your role as a carer is that there are so many things that need to be done. If you're starting to feel that bubble of overwhelm, we can talk to you about prioritising what sorts of things might be helpful first, and what can wait for a little bit. Sometimes the complexity of the medical system feels like too much to do alone. Sometimes it's just helpful to give us a call and practice saying what you're going to say at your next appointment, to get across the points you're hoping to get across.
One of the things that carers and family members of people living with dementia mention is that they need to tell their story or their loved one's story over and over to different support systems or medical professionals. Some carers find it helpful to write out a timeline or a story, so that when they're telling it over again, they don't have to worry about missing a piece. One tip that people also find helpful is asking for the support person or the medical professional to write out what they've talked about in the session and the next steps to take.
One of the times that you might reach out for support is when you're considering residential care for your loved one who's living with dementia. If you're interested, we offer a workshop specifically called ‘considering residential care’, so that carers can talk about and consider what sorts of questions they might want to ask and what sorts of things are important to them and their loved one when they're looking at care options. You might be feeling all sorts of different things when you're considering the next step. One of the things that you might be feeling is guilt or that somehow you failed your loved one. You might find that it is unrealistic to look after yourself and someone else 24 hours a day, every day of the year. As that happens, you might want to talk through your feelings as you support your loved one as they move into residential care and you navigate the new role that you have in their lives. Sometimes, carers aren't quite sure who to call, if you're looking for something like care at home. Are you supposed to reach out to My Aged Care? Are you supposed to reach out to Carer Gateway? If you're ever confused about which organisation might be providing the support that's most helpful to you, you can give us a call on the National Dementia Helpline, and we can help talk that through with you.
Jim: If you want to talk more about anything you've heard on this episode, you can contact the National Dementia Helpline on 1800 100 500. The free helpline is available 24 hours a day, every day of the year. Make sure you don't miss an episode of Hold the Moment. This series is designed to help you look after your loved one with dementia: whether it's balancing work, coming to terms with relationships changing, or just dealing with burnout. And there's plenty more episodes of Hold the Moment’s podcast available right now, either in your favourite podcast app or on the Dementia Australia website.
[END of recorded material]
Your guide to accessing dementia support services
Tips and resources to help you navigate the care systems surrounding your loved one’s dementia diagnosis.
Subscribe to the podcast
You can subscribe to the Hold the Moment Podcast on your favourite platforms, including:
- Apple Podcast
Subscribe to Hold the Moment on Apple Podcasts.
https://podcasts.apple.com/au/podcast/hold-the-moment/id1761945729 - Spotify
Subscribe to Hold the Moment on Spotify.
https://open.spotify.com/show/2flVINrLfqr23P3V6XwBLS - YouTube
Subscribe to Hold the Moment on YouTube.
https://www.youtube.com/playlist?list=PLAwhBH-4GO5jz9QVtKcOwCWZs6i39o5Ya
The National Dementia Helpline
Free and confidential, the National Dementia Helpline, 1800 100 500, provides expert information, advice and support, 24 hours a day, seven days a week, 365 days a year. No issue too big, no question too small.