Episode: It takes a village

Why no one can do it alone

When Kath found herself confused inside a public toilet, her husband Bob realised something had to change. What began as one simple fix in a small coastal town has since grown into a nationwide movement for dementia-friendly communities.

It takes a village - why no one can do it alone

Transcript

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SPEAKERS: Kevin, Jim, Bob, Belinda

Kevin: Hello. My name is Kevin. I am a First Nations advocate with Dementia Australia. These lands on which we are meeting are many countries filled with languages similar and different. 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. Welcome and thank you.

Bob: You get your teeth into something you don't let go, and that was determined on this occasion. I had the dog by the tail, and I wouldn't get in the way.

Jim: Sometimes the smallest moments can spark the biggest change.

Bob: It's hard to believe that a little plastic sign on a toilet door could create news all over Australia. It's like a bloody earthquake. It just went everywhere.

Jim: Bob Heath lives in a small town in South Australia, and like me, Bob's wife Kath is living with dementia.

The pair were out for lunch one day, and Kath needed to use the bathroom.

A confusing moment in a public toilet block followed, but this moment ended up inspiring change right across Australia.

Bob: I just couldn't believe that it spread so wide in a matter of 48 hours sort of stuff. It had gone from Tumby Bay to Perth and over to Sydney and the fact that people were taking notice and actually interested in what was happening.

Jim: Hi, I'm Jim Rogers and this is Hold the Moment. And as part of Dementia Action Week 2025, we're celebrating the power of connection. Because dementia doesn't just affect one person. It impacts so many - family, friends, workmates. In fact, it takes a whole community to navigate dementia.

Bob: Tumby Bay is on the eastern side of Eyre Peninsula, about 50km north of Port Lincoln. It's a little rural town, farming district, very easy-going little town, two hotels, fantastic bakery. It's got everything you really want. It's a great little spot to live. We've retired there about 20 years ago, been married to Kath for 60 years. Kath’s always been an outdoor girl. Loves her gardens, loves being outside. When Kath was first diagnosed with dementia, she wouldn't accept the fact, and she tried to hide it from everybody. So, I used to pick up pamphlets about dementia from places and leave them around the home so that people could see it and perhaps open the subject. And Kath used to go and hide them. So, I took her around all the business people that we deal with in the town, explained the situation to them, just in case anything happened where she might suddenly pick up something and walk out without paying for it or whatever. It actually worked magic. She accepted the fact after that and never bothered to hide it again. But it made it easier for her, for me and for the business people to understand the situation.

Jim: Life with dementia is full of moments you just don't see coming. For Kath and Bob, one of those moments arrived on what seemed like just an ordinary day out.

Bob: It was a nice day. Went for a drive down to Port Lincoln and gonna have lunch down there somewhere. And Kath decided she wanted to go to the toilet. So, I took her to the public toilets, and she walked in the door and just walked out again. And I said to her, “You okay?” She said, “I want to go to the toilet.” I said, “We've just been to the toilet.” And she said, “Well, there's no toilets in there.” And that threw me a bit because there was no signs on the outside to say it was out of action or under repairs or anything else. So, I took her around to the disabled toilet and went with her there and sorted things out. But it stuck with me for a long time about that and through talking to other people, I found out that the doors and walls were all painted the same colour. So, I just assumed, and I'm still assuming, that Kath just seen a blank wall and thought there was nothing in there.

Belinda: It's highly likely Kath felt stress and anxious and probably primarily though confusion.

Jim: Belinda Curtis is the National Manager of Dementia-Friendly Communities at Dementia Australia.

Belinda: People living with dementia can often experience feelings of being overwhelmed and also confused when they go into spaces and particularly for Kath on that day, where she's walked into a toilet and the walls are all white, the doors are all white. So there's nothing there for her to decipher what the environment contains. It just looks like a blank canvas. And so, walking into a place that you expect to be a bathroom and expect to see the familiar things of a toilet seat and not seeing those things, it would have been incredibly confusing, probably even a little bit alarming.

Bob: I don't know who was confused, her or me. For a start, I just couldn't comprehend what she was at about at all.

Jim: Bob was left with a lasting realisation. If Kath couldn't see the toilets, others could be facing the same challenges and struggles. Something had to change. So, Bob started to think about the solutions.

Bob: I kept going to our own public toilets and so forth and looking at them, and I thought what can I do here? I came up with the idea of approaching our local council to see if I could just get a picture of a toilet put on each cubicle door to help people in that situation. If they walk in, they can see a toilet, and maybe, hopefully open the door.

Belinda: I thought Bob's idea was amazing. At the Dementia-Friendly Communities program, we encourage people to talk to their councils and even to just to look around their local area and see what can be done to improve the dementia-friendly elements. And so, when Bob approached us and said he wanted to put some signage up at the toilets, we jumped on it because this is exactly what a dementia-friendly community is all about. It's about individuals seeing an issue and working with others in their community to find a solution. And the beautiful thing about what Bob has done with the council is, it was a really simple solution. It's not a very expensive solution either. Putting some signage up in a toilet doesn't cost a lot of money, but the impact that it has on individuals who are living with dementia and their carers is huge.

Jim: So, what began as a moment of confusion soon became Bob's mission - a mission that would reshape his entire community. With support from Dementia Australia, Bob carried on. He would not give up.

Bob: One visit to the mayor, two visits to the local council office, and two letters. One nice little letter for a start and then a very pointed one. In the end, the council did place the signs on the toilet doors. They're a bright yellow sign with the black letters on them. They stand out well, and the council done a fantastic job.

Belinda: So, the colours that they've used on the signage for the bathrooms is black writing and black pictures on yellow. And yellow is a great colour, because it's often the last colour in the colour spectrum that people living with dementia can see. And in fact, anyone that's experiencing sight issues, again, that's a colour that people will see all the way through to loss of, complete loss of sight, so it's a great colour and also having contrast. So, what's really important about creating dementia-friendly spaces is making sure that there's a lot of contrast in colours. So really, what Bob has done in his community has really kick-started the conversation and is enabling the whole community to be part of the solution, to provide that support, to connect to others.

Jim: Once the council backed his idea, Bob could hardly believe it. What began with one public toilet block soon spread far and beyond Tumby Bay.

Bob: Couldn’t believe it was actually going to happen in the finish. Really impressed with the way they went about it. I took some photos. A couple of days later, I get a message, a phone call from the local newspaper. They were on to it, and they want to come and do an interview and get some photos of the signs and everything else, and that's where it just went from there. It just went everywhere. Sitting home having a glass of wine one evening and I get a phone call from Perth. She introduced herself as the secretary of the family building business and said she didn't believe that such small things would mean so much to so many people. She said, “And then guess what we're going to do next time we build a public building in Perth?” I just couldn't believe this happened. Just couldn't believe that it spread so wide in a matter of 48 hours sort of stuff. It had gone from Tumby Bay to Perth and over to Sydney. It was just unbelievable. And the fact that people were taking notice and actually interested in what was happening. They often say how good it was, but no one bought me a beer! And like, I keep getting back to the great thing is people are talking about it. It's opened everyone's eyes and ears to dementia in more ways than one. Who would have thought that little plastic sign on a toilet door was going to get all of Australia talking about it. It's unbelievable.

Belinda: It's not just about the physical change that's been made. It is about the conversation that Bob and Kath have started in the community. So really, what Bob has done in his community has really kick-started the conversation and is enabling the whole community to be part of the solution, to provide that support, to connect to others. That's what a dementia-friendly community is all about. It's about people not being alone, because nobody can do it alone. We all need help and when you're living with dementia or caring for someone with dementia, just a little bit of awareness in your community and a little bit of support here and there can make all of the difference.

Jim: Since then, Bob hasn't stopped finding new ways to make a difference, including starting a simple coffee catch-up that's become a lifeline for local carers.

Bob: We are sitting home getting bored, doing nothing, and decided to have a coffee. And I rang up a friend whose partner is in care, living with dementia, and asked them to come down the street and have a coffee. And he said, Why should we? I just thought we’re just going, you know. It’s only half a dozen of us that meet there, but we meet once a fortnight now, and no rules and regulations. The only rule we've got is we've got five minutes to talk about your situation with dementia or whatever it might be, okay something that has come up, and you might have noticed, you want to talk about. After that, you paint the house, go fishing and do a bit of gardening, whatever. Tell as many lies as you can, and then we go home again. It's just to get out of the house, socialise and do something.

Belinda: It doesn't matter who you are in your community. If you're experiencing isolation or if people have dropped away because, well, they're a little bit confronted by dementia so they've stopped connecting with the person living with dementia and the carer, because they don't know what to say, or, you know, they think that somehow, because of this diagnosis, the person is going to be radically different. Social isolation can have damaging effects on people, and so communities that are wanting to be dementia-friendly, that is probably one of the first places that I would recommend they start. Is making sure that there is opportunity for people to have that social connection. And as Bob has shown, it doesn't have to be complicated.

Bob: Well, I certainly didn't do all this for any accolades or any pat on the back or anything else. The best advice I was ever given was don't be proud, seek help. And I found out that you can't do it on your own, no matter who you and what you are. You just can't do it. It's too much. It's a 24/7 job.

Belinda: I think Bob and Kath’s story demonstrates that even those in the community who are reluctant heroes, it's your everyday person who can change or change their community, really. A single voice can be really powerful and with a little bit of support from organisations like Dementia Australia and their local council and others, you can see how quickly it snowballs. And so just having that one person who's brave enough to tell their story and to basically do what Bob did, which was not take no for an answer, advocacy is really powerful.

Bob: It has given me a great sense of purpose, for sure. You've got to, just got to get out, front up and do your bit. And they spread that word around with their friends, and so it goes, and the whole town's talking dementia.

Jim: Dementia doesn't just affect one person. It touches families, friends and whole communities. Kath and Bob's story shows us what can happen when a community comes together, and as Dementia Action Week reminds us, nobody can do it alone. If you'd like to learn more or find resources for carers and communities, you’ll find links in our show notes. You can also call Dementia Australia's free 24/7 Helpline on 1800 100 500 for tips, advice and support. Make sure you follow Hold the Moment wherever you get your podcasts. We have so many episodes now that help you and your family navigate life with a dementia diagnosis. I'm Jim Rogers. Hold the Moment is a podcast from Dementia Australia, produced by Deadset Studios. You can find more episodes and resources at dementia.org.au

Jim: Executive Producers are Kellie Riordan and Sarah Dabro. This episode was produced by Amelia Navascues with Sound Design by Slade Gibson. Special thanks to Bob and Kath for sharing their story.

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