Keep Able Reablement Podcasts
Keep Able is your go to authority on Wellness and Reablement. Our various podcasts cover discussions on real world issues and examples from people in the at home aged care support sector, specifically for CHSP providers.
Keep Able Reablement Podcasts
Reablement Benefits for People with Dementia (P1)
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With Nell Hawe - Nell is a client living with dementia. Through this episode, you’ll learn how to look at different ways of doing things for a person with dementia, the importance of empathy and active listening, and what you can do to make sure they have a voice in their care.
Discover more reablement resources at keepable.com.au
Hello and welcome to this episode of the Reablement Podcast, where Keep Able are talking to a range of people who have experience using reablement and we'll discuss how it all comes together and why it works. I'm Alison Bella from Keep Able. In this episode, I'm excited to be talking to the lovely Nell Hall. Nell has extensive experience in the aged care and disability sectors, starting out as a support worker and then as a trainer. Nell was diagnosed with younger onset Alzheimer's in 2020 and now receives care at home that we're going to be talking about today. Nell, welcome. Thank you so much for being here.
SPEAKER_00Thank you for having me, Alison.
SPEAKER_01I'm really excited for this conversation today and for you to share your thoughts with us. You've been working tirelessly as an advocate for people living with dementia, and you aim to live well with dementia every day, which I have seen now for the last few years. I'm really looking forward to talking to you about the important things for you when it comes to the support that you receive. Would you like to begin by telling us firstly about your diagnosis?
SPEAKER_00So I was finally diagnosed in February 2020 after a four-year, quite harrowing journey for a diagnosis. It was put down to stress for four years after me seeking a diagnosis. Went to several doctors, and all of them said because I was so young that it couldn't possibly be dementia. And as you so kindly said, I was a trainer prior to diagnosis and a trainer of certificate three and four in aged care and disability. And my favorite subject to teach, ironically, was dementia. So I knew the signs and symptoms of dementia, and I clearly had those, and knew that I was on the pathway to dementia. And finally, after scans, I was diagnosed with Alzheimer's, but it took four years for diagnosis. So one of the very important things for me is advocating for early diagnosis for people.
SPEAKER_01It's such a huge issue, isn't it? And I guess thinking back, it probably happens to a lot of people, doesn't it? I mean, I know how busy you were. We were working together sort of at that time. It was high stress, it was very busy, a lot of responsibilities. But yeah, how frustrating for you to be expressing something's not right here. I believe it's more than stress.
SPEAKER_00Absolutely. I couldn't remember what I was teaching out of the out of and training, out of the books. Um, I couldn't remember where I was where I was going, where I was driving to when I was working with with um with clients. So there were a lot of things apart from memory, because as we know, dementia just isn't all about memory. I think we know our bodies.
SPEAKER_01So you've been working as an advocate now for several years to support as many people as you can, and that support is both for people living with dementia but also for their carers and those in the industry supporting clients who live with dementia. Is that correct?
SPEAKER_00That's correct, yes.
SPEAKER_01What are some of the most important things for you about the support you receive at home and in the community?
SPEAKER_00I guess for me, the most important thing is getting the right workers, the right workers in the right jobs is I guess the most important thing, and having workers that understand dementia so they can understand me. And for anybody, I guess for who has dementia, whether it be vascular dementia, Alzheimer's, Lewy bodies, frontotemporo, whatever your dementia type is, it's getting workers that understand your type of dementia and what your needs are. Because if they don't understand dementia and don't understand you, they can't work and best support you. So I have a wonderful group of workers who um have all done the MOOC by the University of Tasmania, which is a wonderful training, and they've all done that training, and they all claim it to be a wonderful resource. It just helps them to understand the brain and how the brain works, and and then they've just adapted that to help me and understand me and uh what my deficits are what my losses are, you know, as I lose capacity. And I was only talking with my music therapist this week, and she was talking about grief and grieving, and I said that I don't actually call it grief. I said, because for me, grief is death, and I said, I actually talk about loss, I said about the loss of things, as I lose capacity and I lose things. So the loss of my driver's license, the loss of my friends, um, rather than grieving them. So I I think of them as a, you know, I lose them. And so as I lose capacity, I lose the capacity of something, but I look at how I can change and make alterations and how I'm gonna do it differently to, you know, so now I can no longer drink from a cup and I have to use a straw. So I've lost the capacity to drink from a cup, but I now use a straw. So I might have lost that capacity, but I can now do it a different way.
SPEAKER_01Yes, great approach. I love the way that you sort of, you know, think bigger picture and work out the alternative.
SPEAKER_00Yes. But if you grieve something, then you're sad about it. So I'm actually not sad about it. You know, I look at the positive about, okay, well, I might have lost the ability to do that, but you know, I need to take a positive look about, well, how then how else can I do it? And and I think if we we are positive about our losses, then we don't need to be sad. You know, we we do have this insidious disease, there's nothing we can do about it, but we have to live our best life, and and I think that's the most important thing.
SPEAKER_01Exactly. Couldn't agree with you anymore. I love that you mentioned the University of Tasmania MOOC courses as well. I have done both of those, and I found they changed everything for me in the way I approached working with with clients, uh, going out to see people doing assessments. It gave me that insight and information. I still needed to get to know that individual person, but I had some ideas behind me on what might be actually happening for that person. Very powerful.
SPEAKER_00Absolutely. And I think that's what's important. You have the knowledge, and I think knowledge is power, and what you do with the knowledge is what is most important.
SPEAKER_01So people can do something as simple as that. I think from memory, they're about 10 hours or something commitment over a few months, so it's not huge. But planting that knowledge, yes, can make somebody a much more informed and empathic worker.
SPEAKER_00Absolutely, and I might just add that enrolments are now open. Perfect. As we speak.
SPEAKER_01Perfect. What qualities do you need staff to have to be able to support and empower you?
SPEAKER_00Wow. Well, I do have a few. So I guess one, I like, oh, I like I like people to be empathetic but not compassionate. So empathetic is for me the most important. You have to be an active listener. Active listening is is key. I always remember being taught we have two ears, two eyes, and one mouth for a reason. And I've always, always remembered that. And I guess always remembering to put the person at the center of their care. It's not about you, it is about them. The other quality I think that is really special for me is kindness to always be kind, to never ever take anything personal. And one big example of that is I'm now beginning to lose my words. So my executive level functioning is pretty much gone now. So I use pretty simple words when I talk. Sometimes I will use the wrong words when I'm trying to say something. So it may come out wrong. And it's it's really important that if you have baggage, you leave it at the door. But it's also in saying that if you've got baggage and I say something, it triggers something in you, don't take it personally that I'm having a go at you because I'm actually probably not having a go at you. It's just I've said it because that's the words I have right now. But if there's something going on for you in your life that I've triggered, you have to kind of catch yourself and go, oh, she didn't actually mean it that way. I've just taken it that way because it's something going on for me. So I think that's really something that's really important. Because I actually had a worker who who did take things personally, and I just said to her, I think you're taking things personally, because I actually didn't mean it like that. So it that that's really difficult when that happens because I I'm not a vindictive person, and I don't mean I'm not nasty, but sometimes, you know, when words do come out wrong, like I I then feel really bad. And saying, Do you remember to someone with Alzheimer's? Yeah. So I guess you're you know, your language that you're using, talking really fast, you know, all of those, all of those things. There's there's so many things, you know, when you work with someone with Alzheimer's that you that your qualities have to be. You know, I don't like busy, fast, loud people anymore. For me, that's just something I can't cope with anymore. But I used to be a very busy, fast person. But now that just isn't what I cope with. So I I tend to go for calm, calm people.
SPEAKER_01Great tips and insights for us. Thanks for those. I remember the last time I heard you actually speaking in person. Your message, I'll never forget this, was always be kind because dementia is not. That's it.
SPEAKER_00Absolutely.
SPEAKER_01Very simple but very powerful. How can people support you best?
SPEAKER_00Always being kind. Um, I I guess it it comes down to having an understanding of dementia. I guess that really is what it boils down to. Understanding dementia, understanding, having that understanding. And that's one of my big things when I engage support workers is that they have an understanding of dementia, that they've had some form of dementia training. Because if they don't have an understanding of dementia and the brain, they're not going to understand me. They're not going to understand why I do the things I do or why I say the things I do. I use a lot of visual cues in my home. I have a lot of assistive technology. My workers have to be aware that they've got to be comfortable using all of those things in my home. And my dogs, my poodles, are my world. So if you come into my home, you love me, you love my poodles.
SPEAKER_01You're a package deal.
SPEAKER_00I'm a package deal. And it's really important that they realize that as much as it's their workspace, this is my home, that they respect that. And they all know that, especially in my home, that they don't move anything. And especially for someone with dementia, if if you move something, I don't know where it is. So I know where all my things are throughout the house. But the moment somebody moves something, I can't find it. So my things in the kitchen are just where they always are in my bathroom, you know, in my lounge room. And then if I they're not there, it's just utter confusion for me. And then it's just like stress and anxiety, and and uh I just can't find anything, and it's uh we have this um like you see it but you can't see it. I I I can't explain it. People with dementia will totally understand what I'm saying, but it's there, but we can't see it. It's it's just this really frightening feeling that when you go to get something that you know should be there and it's not. So, you know, those little tiny things are just so important.
SPEAKER_01Really great point that you've made there, and something that I think any support worker, whether it's an allied health professional, somebody coming in to help you with things in the house, personal care, it doesn't matter what it is, but something that straightforward, very important.
SPEAKER_00And you know, people I think do it without realizing. They think, oh, uh, I might just change this. You know, just to make it look different or um I I I don't think they do it with any ill intent, but I I just think they just kind of, you know, do it. And but it's just really important that if you use something, you put it, put it back exactly where you've yeah, where you where you got it from.
SPEAKER_01So that's yeah, a really good strategy for just your basic care. Are there any particular strategies or methods that people can use to ensure you are empowered?
SPEAKER_00I'm a bit of somebody who who always makes sure that I have a voice. So, you know, if someone tries to take my voice away, I always kind of say, Well, actually, this is what I think. Or actually, I actually didn't have a say in that. And I think we should always, if we don't feel that we have had a voice, we should always step up and say, Hang on a moment, what about me? This is about me. I I have a voice. I need to tell you what I think, what I want, and don't be afraid. Just because we have dementia doesn't mean we don't have a voice, and doesn't mean we can't have a say in our care or in any decision making. So I just think we need to step up, and I think we just need to say, hang on a moment, what about me?
SPEAKER_01So for workers that come into your home, not just presuming or taking over, but involve you and talk to you.
SPEAKER_00Absolutely. And I mean, that's what I said before. It might be their workplace, but at the end of the day, this is your home, you know, and don't be scared, you know, don't be scared. You know, I I've sucked many a worker, you know, I've done it very nicely, and you know, and many workers I've also who who aren't doing something correctly or the right way, or how I like it. You know, I explain to them, could you please do it this way? You know, in my home, this is the way I have it done.
SPEAKER_01That's great examples of sort of how you then feel understood and respected as well.
SPEAKER_00Absolutely. And I think we feel often that we have to accept the service that's being provided for us. But we have to remember we're actually paying for the service. So we're actually paying for that service to be provided to us. They're not doing us a favor. So we have to be empowered to actually say, or if it's not us, our caregiver or our person responsible or or whoever's our voice for us to actually say, actually, dad or mum prefers, you know, everything to go in the dishwasher, or they prefer it to be this way. It's so important. It's called person-centered care, and we all deserve it.
SPEAKER_01And I love that. I heard you speak several years ago now on that exact topic at a dementia symposium, and of course, now it's coming more into the Aged Care Act, the quality standards, everything. So, how do you feel about that sort of being more common and more required moving forward?
SPEAKER_00Person-centred care should be and has always been a part of everything that I have done in my whole 30 plus years of working in the industry. And it should just be a given. And it should be the way that we we just work naturally. The person should always be at the center of the care. And I can't believe it's never always been that way.
SPEAKER_01Exactly. It's it seems like a huge shift that we shouldn't have to have waited for.
SPEAKER_00No, not at all. And you know, to think that I've worked that way for 30 odd years, and now they're having this enlightening moment, and it's been talked about for 30 odd years. Uh I I just uh I just find it just incredible. So uh it's it's not it's not rocket science. Of course, your client should always be at the center. You know, it is all about them, it is what they want, it is how they would like it. It's not about the support worker and what the support worker wants. Because how does the support worker know what the client needs? They don't. They don't know how the client is feeling, they don't know what has happened to the client before they came on shift, they don't live and walk in the client's shoes. So, person-centered care is the only way to care for us.
SPEAKER_01Well said. So, when you are seeking a new support worker, how important is it that they work with that reablement approach? So, in other words, they keep encouraging you and support you to do things for yourself.
SPEAKER_00So important. Independence and maintaining independence is so important, and reablement is so important, otherwise, you're gonna be a blob. To keep our brain active. I mean, it has so many benefits, so many benefits if we don't keep our brain active, and we all know that the brain is the most important part of our body because our brain controls everything, it controls all our body systems. So if our brain isn't working, nothing works.
SPEAKER_01Thank you so much for joining me and sharing all of your experiences and your thoughts on this fabulous topic, Nell. We would like to encourage our listeners to log on to our website at keepable.com.au to access all our free resources and information on reablement.
