In this week’s episode, Geoff is talking to Juanita Hughes who was a Finalist in the 2021 Queensland Community Achievement Awards.
Juanita Hughes was diagnosed with younger onset early-stage behavioural variant frontotemporal dementia in mid-2019 at the age of 54. She has since dedicated herself to advocacy.
Juanita is a Dementia Australia Dementia Advocate, a Dementia Australia Advisory Committee member, and National Older Persons Reference Group member. She is creating dementia-friendly communities and is leading the development of the Western Brisbane Dementia Alliance with great community support, including all 3 levels of government representatives.
In this episode:
- We hear how Juanita is a perpetual student and about neuroplasticity and keeping your brain active
- Juanita tells us to focus on what you can do, and not what you can’t do.
- Her advice to carers is to look at what is most important if you are struggling or overwhelmed and get as much support as you can
Links
Connect with Juanita on LinkedIn
Connect with Juanita on Facebook
Contact Juanita if you are in Western Brisbane if you would like to help or get involved with the Alliance through their Facebook page
To find out about Dementia friendly organisations, visit the Dementia Australia web site
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Transcript
[00:00:05] Annette
Welcome to the Inspirational Australians podcast, where we check the people Making a difference in their communities and in the lives of others. And here is your host for today. Geoff Griffin
[00:00:21] Geoff
Welcome to the Inspirational Australians podcast stories of inspiring achievements and community contribution. Every week we celebrate an award program category. Winner or finalist. We hope you’ll be inspired and encouraged to know that Australia is in good hands, together with our corporate partners and not for profit partners, Awards, Australia, showcase ordinary people from right across Australia. Doing extraordinary things. If you enjoy hearing the stories of our Inspirational Australians, please subscribe. Write us any reviews, we’d really appreciate it. This week’s Inspirational Australian podcast guest was diagnosed with younger onset early stage behavioural variant frontotemporal Dementia in mid-2019, the age of just 54. When Eddie Hughes has since dedicated herself to Dementia advocacy. Well, Anita, welcome to the podcast.
[00:01:23] Juanita
Yes, Thank you Geoff. I’m. It’s great to be able to talk to you
[00:01:27] Geoff
and really, really terrific to talk with you as we were talking off air a second ago. My mum has Dementia and it’s such a terrible thing and you feel helpless as you know, a loved one, a son or a family member in terms of how and what to do. So I think this would be fantastic for our listeners. Anybody that knows someone with Dementia and I think it would be very informative. You’re an amazing woman, a wonderful, lovely person, and you do so much. So it’s going to be great to talk with you and for our guests as well. I know the last five or six years must’ve been really difficult and quite traumatic for you as well as those around you in the lead up to and since you’ve faced diagnosis.
[00:02:15] Juanita
Yeah. Look, it has been go out a few more years to when dad was losing a number of his siblings to this disease. And then about five years ago, dad found out that he actually had the disease. He found out what they, what it was called. We knew it was Dementia, but what type of Dementia risk and the mutation we found out that the particular mutation we have a 50 50 chance of actually inheriting which isn’t that self is a big thing to deal with. But as soon as I was eligible to be tested, I got myself tested and found that I was still, I was also carrying the mutation which was a little bit hard to take. But I have a science background and I’d already been reading the literature. And I was recognizing very early signs in myself, and I’m thinking if this isn’t the Dementia, what’s going on with my brain? So the fine that I had, the mutation wasn’t a surprise, but it wasn’t good. You don’t want to know that you’re going to get Dementia. It was only nine months after that that I was actually diagnosed. I’d gone to my GP and asked to be sent to a neurologist because I had not. I noticed certain things happening in my brain and yeah,
[00:03:46] Geoff
what, what are some of the signs that led you to realize that, you know, the Dementia had started to set in?
[00:03:55] Juanita
Well, the type of things that you’re looking for in to Temple Dementia. It’s like, it’s the frontal, our type is the frontal lobe that’s being affected, so it can be a lot of depression like symptoms that can Often be misdiagnosed as depression. Now the psychology type issue rather than a neurological issue. So yeah, that’s the biggest for our type of Dementia is that’s the biggest issue is actually getting a formal diagnosis. I was fortunate. I was diagnosed within a year of my first symptoms. Whereas most people are five, six years down the track. Going to multiple doctors before by phone at diagnosis. So that’s a traumatic thing for me is going, what is,
[00:04:49] Geoff
I know it must be quite fearful. So how do they actually diagnose it as a specialist that understands that are there are tests they do.
[00:04:59] Juanita
Basically it’s through the neurologist, you’ve got to go theoretically a GP could diagnose, but must you have very little training in Dementia. And they wonder what they’ll send you through to specialists and it’s hard to find a specialist that understands the rare talks of Dementia and top off. It’s not if you’re counting down the numbers, we’re about the top in the top four or five different talks. But when you think that alzheimer’s is at least 75 per cent of all cases, the rest of them start getting vanishingly different, rarer very quickly. So finding someone who knows a bit about that type of Dementia is not always easy. I actually was sent first to a movement specialist rather than a brain specialist. Wow. Oh,
[00:05:57] Geoff
I mean, I thought you weren’t sporty enough
[00:06:01] Juanita
But like, the type of the actual mutation I have can also lead to motor neurone disease. Oh Jane. So it can be Dementia or motor neurone disease or anywhere in between. It’s a Spectrum.
[00:06:18] Geoff
Right. So is that why you went to the movement?
[00:06:21] Juanita
Well no. It wasn’t why I went there. That was to my GP sent me to Yes. But he understood a little bit about it because of that, because it is a Spectrum, that’s what they call it. You could be anywhere from full Dementia to full motor neuron if you’re in the middle get at the same time, which is a bad, bad combination.
[00:06:47] Geoff
Yeah, that’s not good. No, I’m on set. I didn’t realize there were multiple types of Dementia all with varying rates of decline. I imagine.
[00:07:00] Juanita
Yeah, we’ll see that’s I think the something was well over 100 named Dementia.Well, well over 100 and they all start in different parts of the brain. So the early symptoms can be different. But the light of symptoms as more and more of the brain cells are affected. Stop merging into each other. Yeah, yes I’d like to make sure is very similar, but early Dementia can be quite different.
[00:07:32] Geoff
And I’m presuming that science has come so far that there are some medications available for some forms of Dementia that can slow the decline or was that not? Not the case.
[00:07:52] Juanita
I think there is one that has been approved in the States by the FDA,which is showing some disease modifying factors for alzheimer’s. That’s the first time any Dementia and it’s only happened in the last six
[00:08:12] Geoff
months. OK, so it’s a long way off until
[00:08:15] Juanita
it has been approved by the FDA. Yeah. But on it, I think it’s almost on the emergency approval. Right? Yes. So it’s only very early stages. When you’ve got the type of mutation I’ve got I wouldn’t want to be a scientist trying to find out something. To be honest. It’s not, not easy. Most of the time that can only look at symptoms and try and use medications from other diseases. To make the symptoms less. Yeah. And it’s Often more for the carers and the care care staff if you end up in aged care rather than the person involved because a lot of those medications actually make your life as a person with Dementia. Worse,
[00:09:06] Geoff
It must be terribly confronting for you to when you realize that your father had had it, it’s hereditary and a very high chance of also getting the frontotemporal Dementia.
[00:09:22] Juanita
Oh yeah, it was eight. We’d seen a high rate in the family. But when we found out what it was and explained it, Yeah, yeah, it’s, it’s still bring, it brings it down to a very strong impact on you because yes, it’s, it can be just very unlucky or could be genetics, you know. Yeah. And if it’s unlucky, well, it hasn’t increased your chances, but if it’s genetics well, too bad, not much you can do about it once you’re bored,
[00:09:59] Geoff
you must be tough for loved ones as well. How do you kind of people deal with supporting their loved ones with Dementia? What are the best tips for how people can manage and work around and with their loved ones who might have Dementia? And I know there are varying levels of that to mention of stages.
[00:10:22] Juanita
Yeah, we’ll look for it for me and my family. The hardest thing was for my mum because she was the full time carer of my dad with more advanced Dementia at the same time as getting a daughter diagnosed, who would need some help. So she was like both sides.
[00:10:44] Geoff
Yeah, poor man. Yeah, it’s tough, tough, tough, tough
[00:10:48] Juanita
for me being diagnosed as early as I was. I’ve been able to get indie artists support. And with that, I’ve been able to release them a lot. Yes.
[00:11:00] Geoff
They’re perfect and that’s, that’s fantastic. Early diagnosis clearly seems to be a key if you can get the right the right referral from your GP and get it diagnosedearly. Yeah. But
[00:11:14] Juanita
yeah, the top five, most people get it in the age range where it can get the it’s more likely diagnosed before 65.
[00:11:25] Geoff
Want to delve a little bit into some of your advocacy work before I do. I’m intrigued. You mentioned you had a bit of a science background, so I want to ask you if you don’t mind what your career entitled or entails, particularly prior to all of the advocacy work you do after diagnosis.
[00:11:46] Juanita
In some ways, I could call myself a perpetual student. I’ve done a little bit of work, but I started a Ph.D. but had to pull out about three or four years before my diagnosis and I was looking for work all that time and Apart from working security at the commonwealth games in the gold coast, I pretty much haven’t done any real work since. Yeah. So that was it actually a bit of a sideways leap from science, but all of us doing a Ph.D in, in chemistry at the time when I had a
[00:12:29] Geoff
lab. So what was your study focused on?
[00:12:32] Juanita
Yeah, it was a patchy looking in prostate cancer. Oh okay.
[00:12:39] Geoff
Yeah. Well, Sam, you didn’t finish, you might have found an answer for us.
[00:12:44] Juanita
Well, it was what they call that out. There are not six, which is a coined word that says therapy and diagnosis in the one molecule.
[00:12:56] Geoff
Yeah, well, we’ve learned something today.
[00:13:00] Juanita
So it was actually a very interesting area, but I had to pull out of it. Part of it was that my, one of my supervisors who had the money retired totally. Somebody went with her, you can’t do research for that money. But one of those things. So yeah, but we had a few other things that happened, but that was one of the major issues about having to pull out from. But yeah,
[00:13:29] Geoff
but you became a finalist in the Australia Pacific LNG local hero award in 2021 for your advocacy work for Dementia. And you had quite an involvement with or you have quite an involved with Dementia, Australia. Can you tell us about what your role or what you do with them?
[00:13:54] Juanita
Well, I was within a couple of weeks of my diagnosis. I well the day I was diagnosed I was told by the neurologist to look get in touch with Dementia, Australia that was the best of the best and only good advice I’ve gotten from him. Essentially by far the best. Because I spent the rest of the day on the computer looking it got pretty much looks at every page on the website and came across their advocacy programme. I hadn’t heard of it before that because it’s only relevant if you have a direct contact with Dementia. Either someone who has it or is a carer or former carer. So I would have struggled to put the case for to be an advocate last organized. Once I was diagnosed yet No worries. But I pretty much applied for advocacy within a week of that. And when I was, when I was told about the first thing that they had available for me in Brisbane, I had to contact them back and say, sorry, I’m going to be sitting in Sydney at that time. And I contact him back or we’ve got another session happening the day after you arrive in Sydney. Can you make that? So I said, yeah, I was lucky. So I went and that was, that’s the end of the story. Virtually because I met the people in person. I met my local coordinator for the program because she looks after Queensland and New South Wales. She was there, but I met her boss who looks after the entire nations program. So they got to know me that day. So they knew I was staying in Sydney. I knew I was house sitting, so I was relatively free. And I was able to do things at a moment’s Notice Virtually
[00:16:03] Geoff
still involved with them.
[00:16:05] Juanita
Oh yeah. Heavily involved. Yeah. So I was going and then it was only things about three months after diagnosis that I was told about there was some diagnoses that they’re trying to fill in the advisory committee and I applied for it and then started in October of that year I was diagnosed in May, and in October I became a member of that advisory committee. So that was a very quick journey for me. Yeah. But in that time I had done a lot of advocacy because I was available. So I knew that if I called me to do something like they wanted an extra person for their fill me for Dementia action week, they had photographers lined up. They realized that they had a gap that they wanted to fill. I had less than 24 hours. Notice of that and they had interviewed me the same day as I asked you what I need. I could do that. Yeah. Just
[00:17:17] Geoff
spent a lot of time talking with people or supporting people, helping people and providing advice I guess as well.
[00:17:25] Juanita
Oh yeah, I’ll do that, I’ll do what I can. Just this year we’ve added up different groups. I keep on forgetting what my actual role is because I’ve only seen it once or twice. As soon as I’m told, I’ll know what it is, but I can never remember. But they decided that we, we would actually ask that had a list of things and we could say what we were interested in. And my, I think my role is related to, I’m working with New staff, make sure that they understand what’s what Dementia is. If they’re going to work for Dementia, Australia, they need to have some sort of induction and things like that. Let’s
[00:18:08] Geoff
say you’re involved in training as well.
[00:18:11] Juanita
Yeah, the advisory committee has the ear of the CEO and the board. We actually advise the board on things. Yes. We have a member of the board that sits on our meetings and all of us. And he always reports back from that. When we have face to face meetings, we Often see the CEO or the board, or both. I’ve only been to one of them because of the cutting that’s got in the way. But some will probably we, we want to have a meeting with the entire board. That’s what one of our things that’s going to happen. So we are involved quite, quite highly in the organisation. We are also involved in all the different plans they come to us now and say, well look, we want to do something about that. We need to have a chat about it. Yeah. And yet it’s, it’s a very, very high level influence we’ve got, which is really good,
[00:19:17] Geoff
brilliant. But it is good to know for our listeners to understand a bit more about actually what’s involved, what you do and bit more about Dementia, Australia. And I’m really excited that a board member sits on your advisory committee and getting not involved at grassroots level, doesn’t always happen and all boards. So that’s to me, really exciting.
[00:19:38] Juanita
And yeah, it’s been a major and it’s only happened in the last six, seven months. What’s happened, people that have been on, on the, in the committee for longer have been trying to get an ear and a voice in that in the board for longer than that. But this is a good compromise. So yeah,
[00:19:58] Geoff
yes. Well also I’m in South Australia before they merged or under the one banner of the Australia were a sponsor of the community achievement Awards in South Australia. Well, because they understood the importance of advocacy, but the value of what people who are working with those who have Dementia bring to those people, whether it be care advocacy or volunteering, whatever it was. So that was really fabulous and good. And that was stopped when they did each of the States merged and together with Dementia, Australia. So I have some understanding of Dementia, Australia and what it is and it really is so invaluable. And our role is really critical as well. Thank you for that. You do, you’re also a national older persons reference group member. So what’s the purpose of the group?
[00:20:58] Juanita
I think it was only just over 12 months ago, a little bit longer. The older people’s advocacy group decided they needed a group of people who were consumers who could actually inform and make the similar idea as the advisory committee first for Dementia, Australia. Okay. They had gotten people, but then they have caught, then they contacted the major star and said, we want people with Dementia or carers from Dementia. Also part of the group because it’s part of the importance of the older people, some advocacy network. Basically that’s when I applied to go on because although I like to sing, I’m not exactly an older person. I do have a father who is very much in their system now because I’m in March this year we have to go into aged care because of the deterioration it’s going through. Yes. Yeah. That, that’s a fairly inevitable milestone.
[00:22:14] Geoff
But the horrible thing isn’t it?
[00:22:16] Juanita
It’s a horrible milestone, but you have to do it for Saturday. In his case, it was, it was a safety issue. He could not be safe to live in the community. Now he’d lost the ability to know when to look and how dangerous a road could be. Yes. So you have to put him where he doesn’t have the opportunity to kill himself.
[00:22:41] Geoff
And it would be increasingly more difficult for your mum to. Yeah, for him.
[00:22:48] Juanita
Yeah, those sort of things are really hard. So we, he had to go into aged care. So yeah, look, I wanted to be involved with that because I knew that was on the cards. And I wanted to make sure that I understood everything. I came in and I’ve always wondered with, what is my contribution to this group? It’s not nearly as clear. But I think the group in some ways are learning or learning from each other because we’re all working in very different areas and have very different backgrounds. And between us as a group, we’re stronger than individuals.
[00:23:32] Geoff
Same can be said for every single business, whatever it may be, every community group is the collaboration of ideas all coming together. Bring strength and unity and information and knowledge and knowledge is power. Yeah, I think what you’re doing is fantastic and the fact that you’re all learning from each other is what it’s all about. Now I know you’re really passionate about the Western Brisbane Dementia alliance. And you’re Heavily involved in leading the development of the alliance. And you’re getting great community support, I believe. So, including from government. How did the idea for the alliance come about? Tell us about the progress.
[00:24:13] Juanita
Well, I first heard about the alliance is because most of the people who are on the Dementia, Australia advisory committee, are running alliances in their own community. So I learnt that I became involved with the group that is in Bayside Brisbane. With one of the other members of the committee, she also lives in Brisbane. And so I got a little bit of a taste of what could happen with an alliance. And I realised when I started looking at it, there was nothing in the Western part of respect. There’s nothing. There’s a large, a large, untouched, and tapped area where this lot could be and would be many needs.Yeah. So that’s why I became passionately a fair while to get this organized because we started about June 2020 and then everything. How that sort of got in the way. And it wasn’t until April 21 that we’re able to launch it. I was putting out advertisment, I heard a Notice on the TV or radio that they were going to close. Everything was going to be shut down. Had that off that evening and I was racing around to try and put it up advertising and we were hoping that they would unlock. So we could actually have the meeting. So it was really literally in between lockdowns that we got this thing going. We used up the small window that we had available to get it going because of the way things were we couldn’t go out and do a lot of the things we planned in advertising just wasn’t able to happen because we’re all at home. You can’t do a lot of advertising when you can’t leave the house. Yes, so we had a very small launch, but they were all very enthusiastic.
[00:26:21] Geoff
I have many people have been involved with activities to undertake for the Western Brisbane Dementia alliance for activities. How many people there have been involved since you launched and certainly covid is such a nightmare for so many people and it just destroys so many plans and lives with How’s it gone about
[00:26:47] Juanita
at the meeting we talked about, I basically talked about some of the things I was interested in doing that I thought would would meet the needs of probably much communities anyway, and I thought it would be good for our community and the and the groups. We’re all positive about going ahead with them. So our initial aim was to set up a inclusive cafe where a carer could bring a person with Dementia that could sit down with the carers and have an unofficial support in some way where they could feel comfortable. Talk about what’s going on with other people without them saying Yeah,
[00:27:32] Geoff
yeah, very tough it’s. It’s a wonderful thing that you’re doing very, very difficult for people to understand Dementia because it’s not something that you can physically see.
[00:27:45] Juanita
Yeah, you can see what’s happening in another person that you know well
[00:27:50] Geoff
exactly, and it is frustrating. It’s very frustrating when someone asks you the same question 10 times in 10 minutes and you have to be strong and fully understand that that person doesn’t remember. I’m talking about my own personal experience with that person just doesn’t remember what you talked about. 30 seconds ago, and I remember my dad saying to me, the hardest thing for me being him was that I would share a special occasion I would share having seen one of their children and grandchildren, great grandchildren. And of course you would talk about that. But mum hadn’t remembered that was the hardest thing for my dad to, to deal with not being able to share those treasured memories. So it is very tough. So what are some of how many people have been involved so far? And I know it’s still a very New well,
[00:28:50] Juanita
I’m pretty much the group as far as the membership does, I’m in the process of writing an email to the people who came first and see if anybody else wants to join me as part of the group. Because I really need extra help. I can only do so much myself. Yes,
[00:29:10] Geoff
yes.
[00:29:12] Juanita
And I am very busy with all sorts of things, but I want to do the things locally as well. The editor of the local news, monthly news magazine. She has been Ultra supportive but I didn’t even know why. Apart from just who she was, because one of the first couples that came to the cafe were her parents and their mothers living hillsong’s.
[00:29:43] Geoff
Yes, yes.
[00:29:44] Juanita
What I realised who they were and their connection to the editor. I thought, Oh, you know, they’re Virtually of course, she’s got to be interested in something happening with Dementia because she’s got a family connection. And that makes a difference.
[00:30:04] Geoff
Yeah, sure does.
[00:30:06] Juanita
But yeah, I’ve, I’ve had a lot of support from my local city councillor as well. He helped us a lot with the launch.
[00:30:17] Geoff
Oh, that’s good.
[00:30:18] Juanita
Yeah. So he basically organised a free, fair use of the whole and put up cash for refreshments. So you couldn’t ask for more, we go back to him. After about two months, it took me to get appointment with him because I wanted to give him a formal Thank you. Yes. In person rather than an email. We spent the time with him and his main staffer brainstorming about what we can do for the group. You know, it’s like you can’t ask for better support than that. He’s very, very good.
[00:30:58] Geoff
What are some of your plans for the, for the alliance?
[00:31:03] Juanita
Well, my biggest plan at the moment is to take the Dementia friends program to every organization I can in the district. I’ve already got the local over50s group. I’ve got both the scouts and the girl guide and the local meals on wheels is also going to allow me to go and talk to all the volunteers and present Dementia, friends program to them. And it’s quite a, I don’t know if you know anything about Dementia, friends. No. But it’s a program that if you go on to the Dementia friendly organization, web page which is run by Dementia, Australia, Dementia, friends is the lowest level of that of that group. Is a part of it and also Dementia friendly organisations and businesses. But the Dementia friends is the basic thing. And it’s essentially watching a 15 minute video. Not terribly difficult to do. But it’s people living with Dementia talking about What Dementia is to them, how it affects their daily life, what, how Dementia friendly community would impact their life and why they really would love to have the community more Dementia friendly. You know, it’s, it’s very powerful for someone who’s never had any contact with Dementia. And even for those who are carers of someone with the Dementia to secede from the other side, it
[00:32:47] Geoff
sounds great, very informative and highly recommended by the sounds for anybody who wants to know about more about Dementia.
[00:32:56] Juanita
Yeah, well, I’ve already presented the program once to the local rotary group. Awesome. Yeah. One of the, I think he was the treasurer of the local group came to our launch and he said at the launch, I want you to present this to the whole group. So I’ve already done that. Yeah. And it was very well received.
[00:33:18] Geoff
Yeah, well the more people who understand Dementia, the better
[00:33:23] Juanita
and the other places that I’m looking at doing it is in all the local churches. I’ve already got the local Anglican church and the salvos on board for me to come and present it to their senior management in this so that I understand Dementia.
[00:33:42] Geoff
Yeah, that’s a great idea because there are a lot of older people with no offense at the churches, there are 10 churches so it would be very good for them to understand as well.
[00:33:53] Juanita
Yeah, well I thought, you know, my aim for that is that a lot of people have attended a church for many years. I’ve got a lot of their support networks. So within the church group, when someone gets to make sure there’s nobody in the church that understands what’s going on, it can have very negative results.
[00:34:15] Geoff
Yeah, absolutely.
[00:34:16] Juanita
If
[00:34:16] Geoff
works, what are some of the issues and difficulties people with Dementia face that we might not realise or think about when people get Dementia?
[00:34:24] Juanita
And if they’re struggling with memorial, struggling to do what they used to be able to do or whatever their particular problem is. Well firstly, it’s a lot of extra burden that goes on the immediate family. They’ve got to look after them, keep them safe. That’s the first issue, but a lot of Family friends and family members will also restore. It’s not only the person with Dementia, but their carers, they will be left isolated from their normal support network. Yeah. And that is a very hard thing to do to live with. Yes.
[00:35:13] Geoff
Yes it sure is. And it’s a sad thing, but you’re 100 percent right? Probably because we don’t know how to deal with it or it’s just too tough too hard.
[00:35:23] Juanita
It’s. It’s a hard thing to deal with. Yeah. But there are resources available to DementiaA australia’s got some great resources. The DAC itself, which we call a adviser committee. It’s a little acronym has been working with Dementia, Australia to make a little brief, brief booklet called let’s talk. Yeah. And it’s basically how do you talk with someone with Dementia? It’s very powerful because everyone that’s worked on it has got Dementia themselves. Between us we probably take up most of the common Dementia. One of them, one of us is Scott. So yeah, we can understand where the problems are in our particular side of Dementia. So
[00:36:19] Geoff
yes, I’m always conscious of not asking my mum what she did that day. Was something that’s passed because she doesn’t remember. So I try to talk to our what’s current, what’s in the very moment, if you talk to her about things. So I’ve been doing and my family’s been doing that. She doesn’t have to have any knowledge of herself because that’s the hardest thing you sort of want to talk to people and still on the same level, but you can ask them why mum. Her memories are to the point where she can’t remember your previous sentence. So yeah, I can only talk about my family what I’m doing.
[00:37:08] Juanita
I’ve encountered people with Dementia to that level in my advocacy work. So yeah, I know, I know what you’re talking about. It’s
[00:37:19] Geoff
very, very difficult. How do you personally manage living with Dementia yourself? What are some of the tips that you might provide
[00:37:29] Juanita
for myself? I’m actually, as I said, I’m a perpetual student. I’ve just graduated. I’m just graduating in January from a course that I completed a few weeks ago. Yeah. It was work that I, I actually started the masters. I was in my first semester when I was diagnosed with Dementia. How that got in the way. And it’s all the things that were happening. I actually pulled out of that and I read writing from the bed, so that’s part of it. So I’ve done that entire degree at a graduate level with Dementia, so it’s doable. Not everybody with Dementia will be able to do that. I can at this stage and I think that leads into know what you can do. You focus on what you can do, not what you can’t do, because whatever it is you can do. It’s positive. You’ve got to look as not just to the positive positives, it’s possible for carers. I would like to say is if you’re feeling overwhelmed, look at what is most important to you to have happen. If you’re struggling to get them to do a person with Dementia to do five different types of tasks, which is the most important for you and focus on that and can consider it an achievement rather than overwhelming yourself. Don’t burden yourself with what can’t be done. Thank you as much support as you can get it, whether it’s paid supporters or people that want to help. And there are people who want to help, even with the fact you do lose a lot of Family and friends, but there will be other people that will be willing to help. And I think are going for carers to help rescue it. Yeah, it might sound horrible to say, I don’t want him going somewhere else or her going someone else, but it’s important for your mental health and it’s important for your caring role. You can’t be a proper care if you don’t get the rest that you need.
[00:39:50] Geoff
And I guess where it matters in that we just don’t feel we should leave our loved one, but decide it’s really critical that we take that time for ourselves as a carer, valuable words. And I think your words of doing what you can do and do well to focus on the positives is really valuable advice for everybody in every circumstance.
[00:40:15] Juanita
Of course, yes, it does not just Dementia. Everyone should focus on what they can do. If you feel, if you focus on what you can do, you’ve got better mental health,
[00:40:25] Geoff
you know, be positive. I think that’s such a key and I think yes, but with all that, I ask my family members we my mum has a big, large print calendar with every whole day, every day of the month on a page. And when someone visits her, we write in the diary that we visited. Because of course, mom doesn’t remember and feels that no one ever comes to visit her. So we thought look, have look at your diary here, mum. So-And-So came and so yesterday and so on. So the day before that and Oh yes, that’s
[00:41:08] Juanita
lovely. Yeah. And it’s possible Photos would be good
[00:41:11] Geoff
too. Yeah, that’s such a great idea. Photos everywhere of the loved ones.
[00:41:17] Juanita
Yeah. And people would come because always so that might be a memory joke. It’s a good idea, you never know. And for something that the state archives here, they are actually Dementia friendly organization and what they used to do before covid they had, they’ve got out there where people can come in and they’ve got old Photos from the archives. But they use them as men as conversation status for people with Dementia because it’s things that they may have encountered in their childhood, which people who have memory issues with Dementia usually have children storing memory issues rather than they’ve still got the early memories. So if you can somehow get into those early memories, people at home could do the same, bring out the photo books if they have got them or when the kids were young, talk about pictures of the house. But they’re living in when it was before it was renovated last, you know, the, the earlier stages of their lives. Yes. Yeah. So that’s, that’s the sort of thing that can help. And they say that music therapy is also very good because particularly if it’s music of the childhood of the teen years, the young adult years. Yes. It can bring back. It can help. Nonverbal people with Dementia start talking again. Yeah.
[00:42:58] Geoff
Oh, very, very good tip. Hey, we need to restore your work voluntary.
[00:43:06] Juanita
Pretty much all. Yeah, yeah. Some of the things that I do, they give a small gift voucher for a second like that, but
[00:43:14] Geoff
yeah, so basically voluntary. Yeah. They do that from time to time. Which is the early onset Dementia that really is devastating and impacts people very quickly in terms of their life expectancy. Well,
[00:43:34] Juanita
I would think it can be pretty much any of them depending on what other things are going wrong. Okay, talk one, I’ve got with that particular mutation. If you get it with motor neuron disease, you can be dead in three years or two years. So you go downhill very, very quickly, but it’s driven by the motor neurone disease line, okay? If you get it as a as a combo, it’s not a very, very good to
[00:44:07] Geoff
have, not something that you want. Because you hear about people with the early onset who, you know, just die very quickly thereafter. It’s tragic.
[00:44:18] Juanita
Yeah, well some people do, part of the problem with its diagnosis is sort of like if the disease is going to last 10 years and you’re diagnosed six years down the track the actual from when you’re diagnosed until when is so sick that you don’t know anything about it is only a few years.
[00:44:37] Geoff
Yeah. Good point
[00:44:38] Juanita
if, if you like, million dogs in the first year and you’ve got 10 years ahead. Well you’ve got 10, you’ve got at least eight years of good Don. Yeah. So yeah, makes a huge diagnosis. Early diagnosis is the best thing and Apart from the fact that you’ve got more years where you can do things, if get disease, if they find a medication that is disease, modifying, modifying. Most of them will stop it where it is now. You don’t want to be stopped at them in a end of life care. You want to be stopped at the very early stages where you’ve still got life left. Yes. If I was, had to leave the rest of my life, what the stage I’m at would be I could do it. But I wouldn’t want to be leaving, living the lesson of my life when I had to be fully cared for in aged care. Yeah,
[00:45:38] Geoff
no, it’s very, very good point. What do you think the major challenges of organizing events and group meetings to picture people with Dementia?
[00:45:48] Juanita
It can be a big, big challenge for families to do it. Often the person with Dementia doesn’t feel like that, that they feel like they’ve lost all control of their life. And so there may be a bit considered to be a bit recalcitrant. But it’s really like nobody likes to feel like somebody else is dominating them. So even if you ask them, do you want to do something with such and such? Do you want to organize? Do we do? Do we want to do it? Include them in the actual planning. Now be the biggest benefit that you can actually I feel like even if they, if not I said look, I don’t feel like planning it. Lisa may not give them the opportunity to, I know,
[00:46:40] Geoff
Yes. You’re right because they’re still human beings. That just a memory may not be perfect, but it’s the most fulfilling experience you’ve had through your Dementia volunteering, advocate, journey so far.
[00:46:55] Juanita
Oh, it’s very hard to know. I’ve had some really good ones. I think probably this year and Dementia action week, I was involved in the videos that went all over Australia that was very fulfilling. But during that action week, I was interviewed by an AP journalist. And that article was used in a hundred and seventeen different public occasions. Both TV and print and with an audience of well over three million people. That was, it was mind blowing. How one little interview can go where it can go.
[00:47:46] Geoff
So impactful.
[00:47:48] Juanita
Yeah. To me that was prop, that was one of them. And the other one that I really happen as a high point was very early 2020 when I was involved with a program with the metro Australia where they had a group of the medical students and they were talking about Dementia with them and to be able to talk with these two future doctors and help them to understand. Dementia was so important.
[00:48:21] Geoff
Yeah, it would be 100 percent important.
[00:48:24] Juanita
So to me that was a big highlight as well. Yeah,
[00:48:28] Geoff
good. I mean, it must have been a real thrill to and such validation of your, your work, but also the work of Dementia, Australia and all the associated arms and legs of the Dementia Australia to have been chosen as a finalist for the 2021, Australia, Pacific LNG community hero Awards I mentioned, which of course is part of the community achievement Awards. Must have been such a thrill for you to have reached that stage.
[00:48:56] Juanita
Oh, it was a thrill for me to me, actually, the biggest part of that was to be nominated by the major Australia themselves to feel as if what I’m doing is appreciated by them.Yes.
[00:49:14] Geoff
Yeah. And I think
[00:49:16] Juanita
everything after that was a bonus.
[00:49:19] Geoff
I think you nailed it there too to be nominated by someone is so special. And I think for any of our listeners who know someone that’s doing something really valuable in the community, no matter what industry or what, whether it’s volunteering or whatever it is to nominate someone is such a thrill for the person that you’re nominating. And if people don’t have time, they can call our office and we can actually do the nomination or contact the individual to get more information. Yeah, I like to nominate our selves, but to be nominated is such a privilege and an honour.
[00:49:52] Juanita
Yeah, it’s validating. That’s the thing you feel like what you’re doing is actuallyappreciated.
[00:50:01] Geoff
What something that you might remember that was Inspirational, about the community achievement award night presentation at the roll on the park.
[00:50:11] Juanita
Well, when I looked at all of the finalists for the community hero award, I think I wouldn’t have wanted to be a judge. They were all would have been there would be no blinking if anyone had been chosen, everyone was doing something. And to me, evil wasn’t just in that award. It was all across the board. When, when I heard about all the finalists and all the different categories, you just don’t realize how much people are doing in our community until you go to something like that. Because a lot of these people are doing it without following their own tablets. They’re just getting on and doing jobs that they say need to be happening. Yeah,
[00:51:06] Geoff
I think you’re right. It’s so important to actually acknowledge people. People don’t do what they do to be acknowledged, but the fact that someone does take the time to say, you know what, we appreciate, what you’re doing is immensely rewarding for that individual because it hasn’t been look for and because they’re appreciated. And that’s what these Awards do, and we’re really proud of our ability to bring people together to inspire people and to empower people like yourself to be able to go on and do even more with the recognition and the kudos and acknowledgement they get. And it’s not just about individual, it’s a great recognition for the organizations that people like you. When they do work with light to make sure Australia, they can get further kudos and acknowledgement of what they do then that is so powerful. So you really are amazing and we are very thankful for people like yourself that do so much. But you encourage our listeners to nominate someone for the Awards and why would you do that?
[00:52:17] Juanita
Yeah, look, if you’re not someone that is actually doing something tirelessly in their community and are doing it without thinking about it because I see a need and fill it to the best of their abilities. They’re the sort of people we want to acknowledge. We want them to realize that they are appreciated by nominating people that are doing something really great. We’re also encouraging others to follow their example.
[00:52:47] Geoff
So I try, I try. Well, like all of us, you must feel that day to day press pressure build up from time to time as well. You go a lot on your plate, you helping others, which is always very tiring. How do you stay motivated and re-energize yourself when you’re feeling a bit low?
[00:53:04] Juanita
Going back to when I was an undergraduate student, which I started studying in my forties. Again, I used to use my crafting as a stress relief, and I still using it now. Making pots. One of my achievements this year was to be invited to our local end of year program. That was sponsored by the three levels of government. My local state, the city council, my local leader for Queensland and our federal leader, the local leader for Queensland just happened to be in a stage of so we were doing a bit of interest. It was an interesting night, but I’ve actually got a good, almost first name or first name relationship with her ahead of her electoral
[00:54:00] Geoff
contests. Well, it doesn’t get much higher than you know, than the me. It’s
[00:54:06] Juanita
like I was able to be invited to that and at there I said to a Abbasi place, when I was going around the room, I said look, I’ve got some Christmas cards that are sitting at home and looking for a home. I want to look for a charity to help donate them to, to do some Christmas parcels. And so some was able to make more cards to go with and help support the Anglican church this year with their parcels that they were sending out. They were, but I had my Christmas card in the process.
[00:54:40] Geoff
I don’t know why work.
[00:54:43] Juanita
I love doing it because that’s, that’s my creative outlet. That’s but to actually see it go somewhere where it can help somebody else.
[00:54:54] Geoff
It joy.
[00:54:55] Juanita
It gives me a lot of joy, a lot of pain, a lot of things, and I’ll show you one other thing. All
[00:55:03] Geoff
right, for our listeners who can’t say when
[00:55:06] Juanita
is
[00:55:07] Geoff
raging in,
[00:55:09] Juanita
we can say these calls that are made when I, when I heard that all the you know, like all the problems that people were having in retail stores during the pandemic. Workers being abused and everything. I said I can make cards, and I started Making Thank you cards to give out to the Workers. Well, that’s lovely. Oh boy, it’s great just to see the change in face. Oh, I bet. Dave boyles. Yeah, yeah. It was, it was worth it to go to a lot of effort to make something, even though it was a little bit of effort to make it beautiful so that they knew that I appreciate
[00:55:55] Geoff
that that is awesome. Good on you. I want you to watch something that we might not know about. We who
[00:56:03] Juanita
have told you quite a bit, but
[00:56:05] Geoff
actually
[00:56:06] Juanita
I’ve actually spent 44 years in South Korea teaching English as well.
[00:56:11] Geoff
That’s. That’s quite fascinating. You really have packed a lot in, haven’t you?
[00:56:15] Juanita
Oh yeah, and it was like, the interesting thing was that the first year I spent over there was 1987 and people who know about the Olympics noted. So had the Olympics in eight Hmm. And all the Australians in Korea well, and I’m not sure how many there were, but Australians and New Zealanders combined, including the embassy staff and their partners and Children were about 100 people. So we weren’t that many on the ground. So when the chef de mission came to Seoul, to look at the facilities and put in australia’s bid to go to the Seoul Olympics, the embassy put on a cocktail party for that. Had all Australians in the country were invited to it.Fantastic. That’s chef de mission. Now is vice chairman of the IOC and I’ve met him. Well,
[00:57:22] Geoff
Can we get your autograph?
[00:57:24] Juanita
It’s like when you’re willing to go outside the comfort zone, you don’t know where you’re going to end up.
[00:57:33] Geoff
I think there’s a lesson in that for all of us. Well, that’s awesome. Speaking of packing in stuff and what’s next for Juanita? When they do use
[00:57:43] Juanita
I’m. I’ve applied to continue studying next
[00:57:46] Geoff
year. Good on you. What are you going to be doing?
[00:57:50] Juanita
I want to do a graduate graduate certificate in business. Philanthropy and non-profit.
[00:57:56] Geoff
Fantastic.
[00:57:58] Juanita
Yeah. Because I believe that as part of my work on the alliance for Dementia, Australia, the advisory committee, I’m having someone with a little bit of business background, even even if it’s honestly not practical, would be invaluable.
[00:58:18] Geoff
And I say starting keeping in mind, active is really good to help slow down the onset of Dementia.
[00:58:28] Juanita
And not only the onset, the progress, yes, that the scientists have found out about what they call neuroplasticity. Your brain is not constant. You can actually change your brain by using it. Yeah. What you are doing when you were studying and using your brain in any way you’re using it. Is to create New connections between the cells. Yes. Which means that your future proofing your brain to some extent. Where
[00:59:03] Geoff
you go, everybody get out there and start studying that learning, but no seriousness.
[00:59:09] Juanita
Yeah, well it’s, it doesn’t have to be formal study, be doing crosswords. It can be doing creative activities. If somebody’s doing, thinking about how you got a plan, you got Anything that’s using your brain. Yes. Yeah. Whatever interest you, of course don’t do it because you don’t want it. Because you have to do it.
[00:59:33] Geoff
What do you think the world needs more of right now?
[00:59:37] Juanita
I think the world probably needs more compassion. We, we want, we need more of a willingness to understand each other to go the second mile to try and understand each other. Because a lot of us are living very difficult lives in there, but doesn’t. In so many different ways we can be living different, difficult lives, all of the time. We don’t talk about it. Yes. And I think if we can support each other, the journey is so much easier.
[01:00:16] Geoff
We don’t know what the person that we’re talking to has gone through what their days been like. So we shouldn’t judge people and we should make allowances and be kind because we just don’t know. I think you’re right. We need a way, can our listeners connect with you online and find out more about the West Western Brisbane Dementia alliance. And of course the other organisations within Dementia, Australia or the other arms or components of Dementia, Australia that you’re involved with.
[01:00:52] Juanita
Well, the alliance actually has a Facebook page, which obviously posts all the activities that we are doing or I am doing actually beyond even the alliance. But usually if you’re in the Western Brisbane area, whenever we going to have a cafe meeting together, I usually put it up remembrance this in two days time or something like that. That type of thing. You want to keep? Yeah. Yeah. It’s I think it’s Basically a full line of the group Western Brisbane alliance.
[01:01:30] Geoff
Okay. So people should go on to
[01:01:33] Juanita
Brisbane Dementia alliance. I think if you look up that you will find it.
[01:01:38] Geoff
Yeah. I thought so if you know someone with Dementia, particularly a loved one or a friend or you want to help out help when need to get things cracking.
[01:01:49] Juanita
Definitely if you’re in the, in the greater West of Brisbane area, we’d love to see you
[01:01:56] Geoff
was like, you need some help and we need to get things moving there to be able to help more people.
[01:02:02] Juanita
Oh yeah. Look, I can do so much myself and I am passionate about doing things myself. But a team is so much better.
[01:02:10] Geoff
Yeah, you can’t do everything yourself. So I agree. Are you on LinkedIn when ADA?
[01:02:15] Juanita
I’m on LinkedIn
[01:02:18] Geoff
Contact Juanita. We need to let her know that you appreciate what she’s doing and if you want to help get involved because it’s, it’s a fantastic programs. Fantastic work to make sure Australia does as well. Alright, well I hope everybody’s enjoyed my chat with when needed today. It’s been really terrific. Thank you so much for your time. When they there I hope our listeners have learnt a little bit more about Dementia and how to work with their loved ones to get the best possible results before we close. Big thanks to all the businesses and individuals that have come on board, the New Awards, Australia, Making a difference, annual membership program. We started this not long ago. We’ve got a whole lot of members already involved. It’s $50 to join. It’s an annual subscription fee helps provide grant funding for our award winners. So get involved in the big thanks to all of those already have shout out to Annette. Who is my wife? She produces the Inspirational guide Australians podcast. Our son Josh, is my co-host and does the alternate weeks for our podcast chats, along with our amazing team and Awards, Australia help us to empower others to continue their dreams, of Making a difference just like win maker does in the community. Thank you to our team and when they do, it’s been wonderful talking to you personally and for the community. You take care now. Thank you until next week. Stay safe, please be kind and keep inspiring. I hope you enjoyed today’s interview as much as I had. We would love for you to subscribe to our podcast, that you won’t miss an episode, join us each week as we talk with ordinary Australians. Achieving extraordinary things. Did you know that Awards Australia is a family owned business that proudly makes a difference in the lives of those make a difference for others? And we Thank our corporate not-for-profit partners to Making award programs possible to you know, someone that’s Making a difference or maybe your business might like to sponsor an award. Contact us throughout Instagram page. Inspirational thought Australians will head to our website. Awards, Australia dot com would be great if you could share the site with your network. Because who doesn’t like to click news story, and please write and review us. We would really love to hear your thoughts until next week. Stay safe. And remember, together we make a difference
[01:05:05] Annette
Thanks for joining us today on Inspirational Australians podcast. We hope you enjoyed listening and have been inspired by ordinary Australians. Achieving extraordinary things, so it’s goodbye for another week. Remember together we make a difference.
