- Hello, my name is Kevin. 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 joined 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.
- Ladies and gentlemen, we have started our descent... (aeroplane landing) - So, we are just checking in at the hotel, it's quite crazy in Bangkok airport and the traffic was crazy, but now we're here, and just waiting to go to our room.
I just noticed that when I was trying to pack all the cases, it was like they just looked chaotic like it was just, normally, I would be very organised, and have a system of some kind, but everything was just sort of stuffed in everywhere, and when I looked at it at the end, I was just sort of like, you finish it, Ty, because it looks, I don't really know what I was doing, just shoving everything in. I've always loved travelling.
I love seeing new places, and having the chance to switch off and unwind. I'm so grateful to be able to see the world, and I've only added more destinations to my bucket list since being diagnosed with younger-onset Alzheimer's. But that doesn't mean navigating airports or packing a suitcase is easy for people with dementia. And if you lose your licence, it makes it even harder to get around town.
I'm Jim Rogers, and this is Hold the Moment, a podcast from Dementia Australia about life after diagnosis My co-host for this series is journalist, Hamish MacDonald, and his father has Lewy body dementia, so he knows a lot about this as well. As you've heard, I've just returned from a holiday overseas with my husband, Tyler. So I'm catching up with my friend, Hamish, to share some of my holiday stories about the trip, and to talk about how I manage my travel now I've got dementia.
- Good day, Mate. - Good day, Hamish, so good to see you. - I mean that was half a tried an Australian accent. I don't know. - No, there's definitely no Australian accent there, It's very British, I cannot lose this accent, but... - How was the trip? - It was fantastic. Yeah, we had a really good time, a lot of fun things, and very hot, it was very hot there. - As hot as here? - Hotter. - So tell me who you went to Thailand with?
- I went with my husband, Tyler, and our very close friends, Caroline and Nat, who are from Perth. - Tell me about the accent, where's it from? - That's beautiful, isn't it? This accent. You can't get much worse. I'm from a town called Redditch, which nobody would really know unless you're British, but it's just outside Stratford-upon-Avon, which is much nicer. - Is that part of the appetite for travel, the fact that you are from overseas, you obviously live on the other side of the world?
- Well, I've always travelled a lot, always, ever since I was, I always travelled a lot with my parents, and then travelled a lot as a teen. And then, you know, I've always enjoyed travelling, and there's a very British thing that you want to get out of the country to have a holiday.
So when you do come to Australia, the vastness of the country, we've seen quite a lot of it, you know, the various cities, et cetera, but we still have this ideology that you leave the country to have a complete break, and so, there's so many places that are out there to see. - And mentally, what's the thing for you about being elsewhere?
- Well, I suppose when you leave and you go somewhere else, it's quite a switch off, it's as though you just really, totally go into holiday mode and you leave everything behind, so you sort of try to put it out of your head a little bit, and have a break, read and relax. - Was travelling this time any different for you? - It's not hugely different, but I'm very reliant on Ty for travel now. I used to be very much at the forefront to go and check in, and check-in online, all those stuff.
Those things now just, I just can't seem to do, and I don't feel confident to do now. So I'm more of a puppy that's just behind him, also going through chaotic airports, I don't feel uncomfortable if I'm with him, because I just, literally, I'm following him.
- When they were in Thailand, Jim relied on his husband, Ty, plus his friends, Caroline and Nat to navigate all sorts of things, making sure he had his passport, that his medications were packed, but also, simple things like ordering food and booking a taxi. - I'm more of a follower now, I'm just happy to just follow. Even when we go anywhere, you may not even notice, but I generally am following where you are going. - I'm doing that on the trip.
- Yeah. (laughs) - No, I am - Rather than trying to lead the way, I just prefer to step back and follow where we're going, and let you pick the table, let you pick the drinks, even on the menu, I prefer for Tyler to pick the food. I don't want to think, and sometimes, I keep looking at the menu, looking, and looking, and looking, and looking, and I still can't make a decision or decide, or work out what I actually want.
So as soon as he chooses something, I jump on it and go, "Ooh, that sounds nice!" And I just copy, really. - What you were describing about you're not doing the online check-in anymore really, and you're hanging back, that sounds quite familiar to me with my dad because, not that he's doing overseas travel, but there's technical stuff that I know he can do, but he seems to be opting not to unless I'm there helping him with it. - A hundred percent.
- Can you just explain what an earth is going on there, because I find it so frustrating. I'm like, "I know you can do this." - Yeah, I fully understand how he feels and what's happening with him. I can't explain it. I can only say that, you know, what I know, really familiar with, it's fine, but anything new or slightly different, or something I've got to learn, it's like I can't retain it or store it, and it's fearful, it's fearful to me. So... - Is it that you can't problem solve?
- It's almost as though someone's squeezing your head because you just can't absorb this new stuff that you've got to do, it's too hard, and it sounds dramatic or ridiculous, but it's just too much. - Tell me about familiarity of environment though, because even though you've been to Thailand before, and you're with people that you know, just explain what it's like being in a really unfamiliar environment, living with what you are.
- The worst things are, with this, comes a lot of sleepless nights and very poor sleep. So in the night, when you wake up, there is a startling 30-seconds of "where am I?" Like I want to nip to the loo, how do I get to the loo? So there's a panic for a minute, so almost sort of wake and sit on the side of the bed for about 30 seconds to really check where I am. Ty always make sure there is some form of light in the room, so it's never pitch black.
If you said to me, "Nip to the room and get your stuff," that would probably be a bit overwhelming to think, "Okay, what's the room number? No idea. What is the floor of the hotel? No idea. I know there's 60 floors there, but I can't remember what floor we were on," but it's like if you, you know, there was on one occasion where I was somewhere and they asked for the room number, I just had no idea what it was.
Well, that just literally leads to you just feeling thick and stupid, because that's how I feel. I just, because like, how hard is it to remember, you know, but you, those things just don't, the information goes in, and then it just drips out, and you can put it back in again, and it drips back out, and it's just frustrating. - If I were to say, "Go home and pack your bags, you're going on a holiday," how would you go with that?
- Ty would really be the one who would take a lead in packing, normally. So I do those things, but I do find I'm going to him a lot saying, "What else do we need?" Or sometimes, getting a bit confused about what's going in, and then what I've packed, I've forgotten what's in there. So definitely, he's got to oversee, to double check. Truth be told, he probably needs to empty out, and start again and check.
So I think I've done this amazing job, and I go, "It's all done, done!" You know, and then he's literally like, "There's no socks," you know, so he'll go through an overview thing. So I think... - It's Thailand, why do you need socks? - I don't know, I don't know. Even inside, if you wear trainers, you're still going to need some socks. Hidden ones. It's so relaxing. I love Koh Samui. We've had such a nice time, haven't we, so far?
We're just at a little beach bar just outside the hotel, right on the waters edge. We are very blessed to be on this island, and that view is just to die for, turquoise water, white sand. And this is so relaxing and therapeutic for the mind, when you do get these moments, makes you feel so grateful. So cheers to our holiday so far. (glasses clinking) - It's not just trips overseas that are more challenging with dementia. Just getting around town can be a logistical nightmare.
Especially if, like Jim, one of the consequences of your diagnosis is losing your driver's licence. - I think I was just speechless, and I challenged it and felt very, I was so shocked and just couldn't understand why couldn't I drive?
And apparently, with the form of Alzheimer's that I've got, it can affect your decision making during your driving, so I suppose to cut a long story short, you can take a left when you should go right, you could go through a green light and believe it's a red light, or vice versa, whichever way round that is. - Where are you at on the whole idea of being driven around and being reliant on other people just to do basic things?
- Hate it. I absolutely hate it, and my kids say you can get Ubers, you know, you can get a taxi, there's no problem. Which I can, it's very nice to be picked up and stuff, but it's not like you getting behind the wheel and being in charge of your own journey. You know, if you want to nip into this coffee shop, or pop into Woolies, or wherever it might be, you just, you're reliant always on someone else. - Hi, thanks for calling 13CABS. This is your first call with us, so please listen closely.
To get a taxi now, press one. To schedule a pre-booking, press two. - I put my bag in the middle so it's not on my feet. - This is Juanita, she's travelling to the studio by taxi. Juanita lives alone and like most of us with dementia, she had to give up her driver's license when she was diagnosed with frontotemporal dementia back in 2019. - I don't mind being on my own a bit, but I don't like it when I'm on my own for a whole week and only ever see someone online.
That's a little bit too much alone time. I'm not a outside, going out sort of person like my oldest son who's just, a person he's just met is his friend, he's that type of person. I'm the opposite but I still need some people. I really only got my license in my forties, so yeah, I drove for about 10 years before I had to give it up. Even though I didn't drive for that long, I miss it. When I moved here with bad knees, you know, it got more and more difficult for me to get to public transport.
When it actually came, it was a shock because I knew I could drive. I had been driving, and I had been safely driving because I'd limited my driving to safe conditions, safe distances. But it gave me, I could go to the shops, I could go to the local things and gave me independence. And just to have that suddenly ripped out away from you is really hard, when you're used to just being able, if you feel like going to Macca's for a coffee at three in the morning, well you can, that type of thing.
But now, you've got to have your weeks planned when I'm going to do something, when I've actually got wheels to get there. Yeah, so it is hard. - Without your license, those day-to-day activities can become a real chore. - When I do my groceries, I either order them online or I go with a support worker, because that's the only way I can do it. There is buses in the area, but with my bad knees, walking to the buses is an issue.
So I can walk up to the Inala shopping centres, but I'll have to get a taxi back, I can't do both ways. You go back, as far as I can remember back, there was someone in the family with dementia. It goes back to my great-grandfather, who I met very briefly as a 15-month-old. My absolute first memory. - Wow - Is of dementia. - Wow. - Yeah, so we didn't find about the genetic link until dad had already lost three siblings to it. - When did you start to experience your own symptoms of dementia?
When did you start to notice them yourself? How long ago? - I found out in 2018 that I had the mutation. At the time, I was being tested, I was pseudo-thinking that it may be happening. It was just sort of like, is it or is it not? It was that was that sort of thing. - Yeah. - Enough that I'd actually told the genetic counsellor, I think I might be having symptoms.
Yeah. So it was very, I was very close to it, and I read just about every scientific article I could find on the dementia or the mutation. And funnily, I came across the diagnostic criterias for the type of dementia I've got. - Okay. - What the doctor is actually looking for. So as soon as I saw that in myself, - You recognised it. - I recognised it. It's worth having it checked out. Yeah, and at the time, the doctor said to me, "I've never diagnosed anyone that early."
Just because I was proactive. - Yeah. What are some of the symptoms that you would say are from frontotemporal dementia, the dementia that you've got, what are the sort of things that you're experiencing now? - Well, the thing that I first noticed, and I think it's probably one of my bigger things now is ultra distractibility. Not that I can't concentrate on the task, but if anything breaks my concentration, I'll never get back to that task.
- Yeah, I fully understand that because you go to something, for example, you think, "I'm going to water that plant." You go and get a watering can, and then you notice something else that you are thinking about, and suddenly, you go off and do that, and you get in a whole new world of whatever it is you've gone to do. - I've had days when I'd get to the end of the day and had nothing started, let alone completed because of that. Yeah. But you've got a choice of laughing or crying.
- A hundred percent - And I've just got to the stage where, "Oh, I've done it again." You know, you just laugh at yourself. - Yeah, I think so. I think you just got to go with it. - Because when you realise what you're doing, then what can you do? You can't undo what's happened in your brain, you've just got to laugh at what's happening. - Sometimes, it is just really hard to find the lighter side of things. How did you feel, Juanita, when you had to hand your driver's licence over?
- Oh, it is, you lose your independence. Instead of being able to do things when you want to do them, you've got to plan it a week ahead or two weeks ahead, not when you need it. That's so much different. - And there's also that feeling of spontaneity, and when you want to just do something, when you want to do it, where you want to go on your own, just as and when. And it is just, it's a very controlled thing where you need to have somebody pick you up or somebody be with you.
It's just, it changes the whole dynamic of the way you feel about yourself. It knocks your confidence a little bit, do you find that? - Look, I don't think it knocks my confidence. My confidence is in myself. - Yeah. - But it does knock my independence. I don't have the choice to do it when I need to do it. I have to choose to go when I've got somebody else's wheels. - And how about the actual journey itself?
Do you have to pre-plan quite a bit to try and make sure you've got everything arranged? Or do you get any sort of confusion with where you're going if you don't pre-plan? - If I've got, I'm going to be taking a taxi by myself, I have to pre-plan when I'm going to book it and that sort of thing. I have to work out time to get the taxi there, you know, that type of thing. - Yeah. - Of course.
Yeah, it's, there's all, there's little things like that you've got to do, pre-plan, but I think it's more the one-off things that you've got to remember, what am I going to need today when I'm going out, and what times am I going out for, and that sort of thing. - So, you do quite a bit of advocacy work. When you do travel for your various things that you are attending to, is there anything you particularly notice with airports that could be quite difficult?
Or is there anything you find that helps you during that travel? - Yeah, well look, until I found out about this Hidden Disability lanyard, it was a big issue, because of not just the dementia, but the arthritis. You get to the airport, you've got to go through screening, and you're on your feet for, seems like hours before you get to where you're going. - Yeah. - With this lanyard, it makes such a difference. The scheme actually came from Europe.
There, it's very widespread, but in Australia, it's mostly the airports. But the staff in the airports, the airline staff know about it. And what this lanyard says to them, to those who are trained, this person has a hidden disability. It doesn't say what it is, it doesn't shout it to anybody else. But for those who need to help you, they need to know that you have a disability. - Okay. - That may not be visible. - Yeah. I had no idea about that.
So that's particularly helpful, particularly for those people that, you know, can get lost, or confused, or any disability, really. - It's any disability that might not be visible to someone. - Yeah. - At a glance. - That's amazing. - And the good thing about it, you can wear it like this, but it's also got the back wear. You can say what my disability is, what I need, who my support person you need to contact, how to contact them. - Yeah. - So when I've got this, I go to the screening.
They'll see I've got a lanyard. So, one of the staff will come to me, "What do you need? Is there something we can help?" And I just, I'd explain what my needs are. They'll take you around so you don't have to stand in the line forever. - Oh, really? So they'll almost fast track you through a little bit to help you, you know, not be waiting around. - Yeah, - And get fatigued - It's that sort of thing. Yeah.
So, but also, I often, although I'm not wheelchair-bound, I get a wheelchair just in case I've got to go a long way. - Yeah. - And having this lanyard actually sort of gives that, makes it such that people don't look at you and say, "why do you need a wheelchair?" You know? - Yeah, and this is the problem, a lot of people don't really, unless it's visible that disability instantly, unless there's some particular thing that they can see.
Often, people don't really understand that, you know, there can be more complex issues behind what that person's experiencing. So that is a fantastic idea. - I think that anybody who has dementia that is travelling really needs to have it. It's very useful. - That Sunflower lanyard is a pretty great tool. Have you tried one out yet, Jim? - No, not yet, but I think it's a great idea, and it's ideal for people who are looking to travel.
- We're going to put some more information on how to get ahold of one in the show notes. If you're after more specialised tips for travel, you can also call the National Dementia Helpline, and talk to an advisor like Kristen. - If air travel is something that you're used to and familiar with, it might be quite easy to consider planning the trip. If this is your first time travelling by air, it might be helpful to have a travel companion come along with you.
Some things to consider when you're travelling in an airport is the time of day that you travel. You might have a time of day that's better for you, where you're feeling more confident in navigating new situations. It might also be that the airport you're going to has a time of day that's a little quieter, it might make it easier for you to navigate. Many airlines and some airports do offer services such as greeting you, even at the door, to be able to help you navigate through the airport.
If that's something you think would be helpful for you, reach out to the airline or the airport to find out if that's something they offer. It's really important that you're still able to get out into the community. And one of those ways might be using public transport. If using public transport is something that you do regularly, you may have already built a relationship with the bus driver, or you may regularly ask for the same taxi driver to help you get around.
Those are great strategies for being able to give you confidence in navigating public transport. If you're going to be going someplace new, it might be helpful to try the route a couple of times with a friend or family member that you trust. It might be helpful to print off a map or a list of the stops. At Dementia Australia, we've got a webinar that talks about the impact of not being able to drive anymore.
And that's something that you could check out on our website and get some further ideas for ways to get where you want to go, and do the things that you want to do, even if you are not the one that's able to drive yourself there. If you've got any questions or you'd like support in making plans for travelling, you can contact the National Dementia Helpline on 1800 100 500. We're here 24-hours a day, every day of the year. - Hold the Moment is a podcast from Dementia Australia.
It's produced by Deadset Studios. You can find more episodes and resources through the Dementia Australia website, dementia.org au. Now, don't forget to follow Hold the Moment on your podcast app so you don't miss an episode. The show is hosted by me, Jim Rogers, - And by me, Hamish MacDonald. The executive producers are Kelly Ridden and Grace Pashley. The producer is Liam Ridden, sound design by Sean Holden.
A special thanks to the whole team at Dementia Australia, and to all the advocates who shared their stories on this podcast.