Real stories about dementia-friendly communities
Find out how communities across Australia are making a difference alongside people living with dementia.
Transcript
[Beginning of recorded material]
[Title card: Dementia-Friendly Communities. Making a difference.]
Phil: My name's Phil. I was diagnosed with younger onset dementia about seven years ago. Working at the time, I was just getting confused, couldn't find my way around appointments. I couldn't retain the information I needed when I was talking to someone. You get stressed and that's when the dementia hits in. I tend to be very outgoing about my dementia.
[Visual: Phil walks down the stairs at the airport]
Phil: So, if I'm confused, I'm at the airport travelling, for instance, I'll go and ask someone. 99% of people just help you.
[Visual: Phil gets in a taxi with his assistance dog]
Phil: I've had some discrimination with my assistance dog, but it is getting better.
[Visual: Phil’s dog, Margot]
Well, Margot is my second dog, so she really makes the whole job a lot easier in terms of even getting out the door. She finds keys, wallet, phone, those sorts of items, because if you can't find them, you get stressed, and then you get confused, and it just goes on and on.
[Visual: Phil walks with his assistance dog, Margot]
Phil: The biggest difficulty people have when they're diagnosed with dementia, not just men, and I think it happens to a lot of people, is they lose their friends. Their friends just can't deal with it or they don't understand it, or a lot of the time, they don't believe it.
[Visual: Phil’s hat with the words “Powered by Margot. Assistance Dog In Training.]
Phil: So, I think if you can get your friends to accept some information from the Dementia Australia website and get some understanding, it will make a big difference.
[Title card: No matter how you are impacted by dementia or who you are, we are here for you.]
[Title card: Dementia Australia. National Dementia Helpline 1800 100 500. Dementia.org.au.]
[END of recorded material]
Transcript
[Beginning of recorded material]
[Visual: Bruce walks down through hallway with artwork on the right]
Bruce: My name is Bruce. When I first got diagnosed with dementia, I was giving up, I was lost. I had to do something and then I went along to programs like Skylight, and they brought people in to help with teaching us how to use textures and different pens and paints and things like that.
[Visual: Bruce's artwork on wall]
Bruce: Dementia is not a thing to be locked away with. We need centres for people to go. I go along to Murray Bridge Community Centre and do programs there, and it’s very important to have these places.
[Visual: Bruce walks up staircase to Murray Bridge Community Centre]
Bruce: These doors got changed for dementia-friendly, and they painted them for different people to know exactly where to go. Because sometimes dementia people don't know which doors to go.
[Visual: Bruce standing at brightly coloured door]
Bruce: This is part of the community garden out here; they grow all types of fruit and vegetables out here. The people with dementia can come here and spend time out here and have a look at this wonderful garden, and we can explain what is growing here.
[Visual: Bruce walking through Murray Bridge Community Centre’s garden]
Bruce: This is my friendly gardener Mr. Curtis.
[Visual: Bruce stands next to Curtis in community garden]
Curtis: How are you going, mate?
[Visual: Murray Bridge Community Centre garden plants]
Bruce: He looks after this garden with a lot of volunteers, and they do a lot of volunteering here, and they try to keep this garden as good as possible. Picture perfect! We need more of these programmes to come together and help people to reach out in the community. It's very important, yeah.
[Title card]
Bruce: Act now for a dementia friendly future
[End of Title card]
[Title card]
Dementia Action Week 18-24 September 2023
dementia.org.au/DementiaActionWeek
[End of Title card]
[Title card]
Dementia Australia logo
dementia.org.au/DementiaActionWeek
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[END of recorded material]
Listen to more personal stories from people living with dementia
Dementia expert webinar: engaging in community
In this video, Dementia Australia Community Development Officer Anthony Parker, Dementia Australia advocate Russell Martin and Amy Rake from Tamworth Library, talk about how we can all be involved in creating dementia-friendly and inclusive communities in collaboration with people living with dementia, their carers and families.
Transcript
[Beginning of recorded material]
[Title card: Engaging in community]
Anthony: Hello, my name is Anthony Parker. I am the New South Wales and ACT Community Development Officer for dementia-friendly communities at Dementia Australia. In this webinar, I will be speaking about how we can engage communities to be dementia friendly and inclusive for people living with dementia, their carers and families. It's important to say right from the beginning that a dementia-friendly community starts with each of us at the grassroots level, and is made up of the collective actions and decisions that we each make every day. Before we begin, I would like to make an acknowledgement of country. On behalf of Dementia Australia, I wish to acknowledge the traditional custodians of the lands on which we are all living on, and pay our respects to their Elders past, present, and emerging. We also pay our respects to any Aboriginal and Torres Strait Islander people who may be viewing this webinar.
In today's session, we will discuss the impact of dementia and how to live well with dementia. We'll discuss what a dementia friendly community is, and look at what some communities are doing to be more inclusive. And finally, we will discuss the next steps for taking action and getting started. First of all, let's look at the impact of dementia. We have here some statistics from Dementia Australia's Dementia Action Week discrimination survey in 2019, which received almost 6,000 valid responses from people living with dementia, carers, family members, volunteers, health and aged care professionals, and people not directly impacted by dementia.
So, three out of four people living with dementia said people don't keep in touch with them since their diagnosis. 65% said people they know have been avoiding them. 71% of family members, friends, or carers say they have not been included in family activities. And 81% said people in shops, cafes, and restaurants treat people with dementia differently. What these statistics clearly demonstrate are that the impact of dementia is not limited to the physical symptoms of the disease process. The psychosocial and emotional needs of people living with dementia are clearly being disregarded, even if not always intentionally. And people living with dementia are being discriminated against. But on a positive note, as a community, we can create positive change, and that's why we are here today.
Now, looking at the impact of dementia from a personal reflection, here are a couple of quotes from people living with dementia about the impact on their lives. So, the hardest part was not the diagnosis of dementia, it was losing friends. It's very uncomfortable or even humiliating when something goes wrong, and people don't recognise that it's not your fault. So, we can see that losing social connections and the sense of loss, about not being able to do things they previously could are some of the toughest things that people living with dementia experience on a daily basis It's important to state that it is possible to live well with dementia. While there is currently no cure, a diagnosis of dementia is not the end of the story. We can partner with people living with dementia and their carers to create a more inclusive community, so that everyone can be involved and live well in their community. And this is the goal of the Dementia-Friendly Communities Programme.
I think now is a good time to pause and ask the question, what do you think makes a community dementia friendly? What words come to mind when you think of a dementia-friendly community? I invite you to think about this question for a few moments as it relates to your own community. And while you were thinking about this, we have some responses from people living with dementia who are asked this question. Here are some of the things that people living with dementia said. "A community where any type of vulnerability is included", "Where you belong and won't be judged", and "where people living with dementia feel included and comfortable in their surroundings." If you think about it, people living with dementia are not asking for much. These are things we can all help with.
Now, we have here a definition of a dementia-friendly community. There are actually many definitions of a dementia-friendly community. This is just one that we particularly like. So, a dementia-friendly community is a place where people living with dementia can live a life of purpose, meaning, and value. People living with dementia are included and can make their own choices. Okay, so now, we are going to see a few examples of what communities are doing to create more inclusive, enabling, and supportive communities.
In March 2021, Australian-Filipino Community Services opened a new dementia-friendly reminiscing garden in Doveton, Victoria. Staff of Australian-Filipino Community Services worked in collaboration with people living with dementia and carers to create a space for culturally and linguistically diverse seniors to celebrate and share memories, and to talk about the challenges of dementia. Here is a video about the project.
Norminda: My mother lives with dementia, but she's never forgotten the memories of her garden. Growing up in the Philippines, this planted a seed for me, and that's why we started The Reminiscing Garden. It's filled with traditional plants like Taro, and it literally takes older people from our Filipino and Samoan communities back to their roots. People living with dementia don't always remember yesterday, but this garden gives them a happy place where they can relax and remember their younger days. It's great how a garden can help people with dementia grow happy memories. A little support makes a big difference.
Anthony: Now, dementia advocate, Russell Martin, who is living with dementia was instrumental in establishing the Orange Dementia Friendly Community Alliance in 2023. The Alliance is a collaboration between people with a lived experience of dementia, including Russell, as well as Orange City Council, the Western New South Wales local Health District, and several service providers. Russell will now speak on his involvement in the alliance, and the positive impact it has had on his wellbeing. Welcome, Russell.
Russell: I guess the real challenge with a diagnosis of dementia is how you actually still engage in the community. And I guess everybody's different, and so, my story is my story only, I guess. I was diagnosed at the age of 62 with a lesser known form of dementia called posterior cortical atrophy. And it really means that I'm going blind, and I'm losing my vision at the same time. A diagnosis like that, when you've got a lot of living to do is quite hard, but I guess the most important thing that I've learnt out of this is two things: One is that the person with dementia has so many opportunities to make their life much better. The second phase or part is that it's really important that you engage in your community.
I think the biggest plus that I've found is that you can stay in a community, and the community can work with you, and it really makes you feel like you actually are worthwhile, and because you are worthwhile, but just, sometimes, it's really hard to realise that you still can make it a positive contribution to a community, even if you've got a diagnosis of dementia. And so, the idea of actually having a dementia-friendly community is really important, but it's also really important that those people with dementia actually tell the community that they have got dementia when they need the help.
For my diagnosis, it was pretty obvious to my friends and in the community there was something wrong, because I had to give up driving, and so, I couldn't hide from the fact that there was something wrong. And so, to me, it was clearly to say, "Look, I've got a diagnosis of dementia, a form of dementia that stops me from driving, but I want to be still engaged in the community that I've been in for the last 20, 25 years." And so, to me, it was a no brainer to go, just work out and say, "Well, look, I've got dementia, but I'm going to do all these things that I normally do," and I'm so busy these days, I think my wife says, "You're never home, you're always out doing something, or you are going away."
Just a week ago, my friends, we went for a motorbike ride for a couple of days, and I didn't get in a motorbike, of course, but they've got a backup van and there's a guy that drives that, and we go around with all the bikies, and we have coffees, and dinners, and meals, and all that sort of stuff, and we see the countryside, and that sort of thing. And it really makes you feel like you still got an ability to engage with people outside of those who are with dementia.
Most of the guys that I go with the bike ride, it's all about just having great fun. There's no talk about dementia and what you can do, and what you can't do, it's all about this is Russell, and he does all these things. And so, I think it's a very positive way of looking at it, but it is really important that the community engage with that. In fact, I always say to people, I don't have a disability. You know, I mightn't drive, I can't see, but there's a lot of things I still can do. And so, to me, it's all about focusing on all those things that you can do and deal with those, and not, I guess, bog yourself down with all the negative.
One of the real features I've found being engaged with Dementia Australia is the dementia-friendly community, we never had a dementia-friendly community, formally, in town. And I was really surprised, and I made some comments with the council, and they've come on board with guns blazing. It's been really impressive as what they've done and beyond that, it went from the council, to the health sector, to other people in the community that are providing the group with support, and we've really just been growing. And I think, having that community programme is really good because it allows people with dementia some leverage in the community that there is support that's out there. And we're punching along pretty good. In fact, the group has just started a dementia support group for people with dementia, so they'd sit down and just have a cup of coffee and a chat. And so, it's been really good to get the energy of people with dementia and the community together, that really brings the whole programme together. And I think by not being linked into each other, I think there's some big gaps in the system, but if you engage with the people with dementia, and you engage with the community that understands, and is aware of dementia, I think that's the best outcome that you can have.
Anthony: Tamworth Library was recognised as a dementia-friendly organisation by Dementia Australia in 2023. As part of their dementia-friendly action plan, they conducted a walkthrough and a focus group to capture and incorporate the views and suggestions of people living with dementia. They're demonstrating a commitment to improving staff awareness, and understanding of dementia through a staff member becoming a dementia friends host, and running dementia friends’ sessions. They conducted an environmental assessment and identified changes to improve the accessibility, wayfinding, orientation, and safety of people living with dementia when they visit the library. They made changes to customer facing documentation, the website, and business processes and protocols to update them with inclusive language.
Tamworth Library Children's Services Officer, Amy Rake, is a founding member of the recently formed Dementia Alliance, Dementia Friendly Communities Northwest, and meetings are being held in the library. Here is a photo of me presenting Amy with the library's dementia friendly recognition certificate in September, 2023. Amy will now speak about what the library has been doing to be more inclusive. Welcome, Amy.
Amy: Hi, I'm Amy Rake, and I'm the Children's Services Officer at Tamworth Regional Library here in Tamworth, New South Wales. Now, we have become a dementia-friendly organisation in 2023. That all came about is because we saw that there was a need in our community, to us, to have a better understanding and more knowledge around dementia, and what that means for our clientele. We noticed we have a large clientele that do have dementia, so we wanted to make sure that we were being inclusive to all of them.
So, in the beginning, all our staff have completed the Dementia Australia Dementia Friendly training, and that was into becoming a dementia friend. We had a local dementia group come to the library for a walkthrough and tell us what was good, and some things that we needed to change. We prepared our action plan with these aspects in mind, and we are continuing to work through our action plan. So, some of the things that were brought to our attention were the signs, we had different lettering for different signs, they were small, in some case, or they were too big, they weren't very clear, and our toilet signs, we didn't have toilet signs downstairs, which made it difficult for people with dementia to understand where the toilets were.
All of these things, we are slowly improving. So, we have improved our accessibility for our dementia friends. Our signs have been made clear, and we are definitely more accessible and more inclusive to our dementia friends.
Our website and documentation are in the process of being changed to have better dementia-friendly language as well. So, we have regular consultation with our dementia community where they're involved in our community hub, which host a weekly get together where they have a meal, watch a movie, and have access to community services. We have a dementia friend involved in Story Time. He regularly comes and reads a story to the children. This has been a highlight for both the children and the parents, and it's been an excellent inclusion activity for all involved.
We're in the process of holding activities for our dementia friends in the library starting soon. So, some of those activities will be cards, games, and basically just getting community members into the library, and making some friendship groups. We also host the newly formed Dementia Friendly Communities Northwest Alliance Group, and we hold that in the library as well. So that group has been formed because we saw a need within the community to be more dementia friendly, and to be an advocate for our dementia friends.
Anthony: So how do you get started in making your community a more inclusive place for people living with dementia? Well, it's important to involve people living with dementia right from the start. Otherwise, we are doing for rather than doing with. As Dementia Alliance International, an organisation made up solely of people living with dementia says, "Working together, we will improve the lives of people living with dementia and our families. It is not acceptable to continue to do anything about us without us."
So, what can we do, as individuals, to help make our community dementia friendly and more inclusive? Well, a good place to start is to become a dementia friend. You can do that online. It takes 20 minutes, and gives you a base-level awareness of dementia, and how to be inclusive of people living with dementia. You can also become a Dementia Friends host, so you can deliver Dementia Friends sessions, either face-to-face or online, to increase the awareness of being dementia-friendly in the community.
You can join a local dementia inclusive group, like a support group, or an art group, a dance group, or a choir. You can join with others to be part of a Dementia-friendly Community Alliance, to advocate for an inclusive, enabling, and supportive community for people living with dementia, for carers and families. And you can become a dementia advocate if you have a lived experience of dementia, and a desire to share your experience with the community.
Now, in summary, we can see that dementia impacts people in many ways, including physically, emotionally, psychologically, and socially. However, it is possible to live well with dementia in an inclusive community that supports people to live a life they choose. We have seen what some communities have been able to achieve and how rewarding and meaningful it is to be part of a more inclusive community. It really does start with all of us, individually.
For next steps, I invite you to visit dementiafriendly.org.au to learn more, and where you can become a dementia friend. You can contact the Dementia Friendly Communities team via email at dementiafriendly@dementia.org au. Thank you for viewing this webinar. We hope you enjoyed it and found it inspiring.
[Title card: No matter how you are impacted by dementia or who you are, we are here for you.]
[Title card: Dementia Australia. National Dementia Helpline 1800 100 500. Dementia.org.au]
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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.