The Dementia Podcast

Talking First Nations: transitioning into aged care

Professor Colm Cunningham Season 2 Episode 1

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In this episode of The Dementia Podcast, Colm introduces an expert panel as they explore the care considerations for First Nations peoples with a particular focus on dementia care. Members of this panel include; Professor Dawn Bessarab, a Bard/Yindijibarndi woman, Director of the Centre for Aboriginal Medical and Dental Health at the University of Western Australia,  Stephanie Charlesworth, a Dementia Consultant from SA  who has worked with First Nations communities and organisations in the NT, and Meghan Heatrick a Dementia Consultant who’s  worked in greater Sydney, Alice Springs and other communities and is currently studying a master's in Indigenous Health. 

Together this group, discusses the current environment of care of First Nations peoples, what quality of life and care means for First Nations peoples and how this can be different from the general Australian population. 

DSA has free downloadable resources for use when caring for a First Nations person living with dementia. These resources have been co-designed in consultation with DSA Aboriginal and Torres Strait Islander expert review panel and champions group.

You can access here the ‘Good Sprit Good Life’ assessment tool developed by Dawn and the team at ‘Aboriginal Ageing Well Research’ as well as information on how to be involved in their research and further validation of this tool. 

The 'Little Red Yellow Black Book' is a suggested resource by the panel as a guide to the rich cultures and histories of Australia’s First Peoples.

Colm Cunningham:

Hello to you and welcome back to the Dementia Podcast. In today's episode we are focused on the history, culture and achievements of Aboriginal and Torres Strait Islanders peoples. So I'm delighted to now introduce my panel of Stephanie Charlesworth and Meghan Heatrick. They're both Dementia Consultants in the team with extensive experience in working with Indigenous communities and working with people who have dementia. Welcome to you both. We're also joined in Perth, Australia by Professor Dawn Bessarab and she is the Director of the Centre for Aboriginal Medical and Dental Health at the University of Western Australia and we're going to hear about some of her work but firstly, Dawn, I'd appreciate if you would provide an acknowledgement to country for his.

Dawn Bessarab:

Okay, I'd like to acknowledge the Nyoongar Whadjuk people of the land that I'm on today and talking from Perth and Western Australia. But I'd also like to acknowledge my own elders, who are Bard and Yindijibarndi descent and their elders past and present.

Colm Cunningham:

Dawn, why it's so important that we think and approach First Nation people's health in a different way to other Australians?

Dawn Bessarab:

Okay, well, when we're talking about Indigenous Australians, and in the definition includes Aboriginal and Torres Strait Islander people. We know that access to Aged Care Services, which would include dementia is available from the age of 50 years for Aboriginal people compared to 65 years for non Aboriginal Australians. But due to higher rates, and earlier onset of age related diseases and disabilities. Despite this 88% of Aboriginal Torres Strait Islander people over the age of 55 years, experience chronic health issues, and their, which means that their access to aged care should actually be quite high. But for Aboriginal people, it's vastly lower and disproportionate to the levels of identified need. So at the moment, the current system of Australian Aged Care Services is not meeting the needs of Aboriginal, older Aboriginal and Torres Strait Islander people. And also, it's not addressing the identified disadvantage that we know is being experienced in the Aboriginal community. And this is backed up by a major finding of the Australian, the recent Australian Royal Commission into aged care, which identified that that the current system does not provide culturally safe care for Aboriginal Torres Strait Islander people. Thus, it's an imperative for change and we need to see reform in relation to services to older Aboriginal people. So and it's not just the services for aged care for older Aboriginal people, but also that the services need to be trauma informed. Because we also know that Aboriginal people, you know, we have a high contingent of stolen generation intergenerational trauma. So we need to ensure that any service delivery to Aboriginal people needs to be Aboriginal led, and organisations providing aged care services need to be culturally informed, and also culturally safe.

Colm Cunningham:

Steph, a large part of nurturing the care needs of the First Nation person is supporting their connection to country. I'm sure you've had experience of this in your work in the Northern Territories and beyond.

Stephanie Charlesworth:

Oh, absolutely. Yes. And I think sometimes we get caught up in all the medical stuff and things like that. And what is important to that person is, you know, their country staying on their country, how do we support that person to stay on on the country, you know, those those aspects of care, you know, can sometimes not be in our standard assessment. So, what Dawn's talking about and from what I've experienced, it's very relevant.

Colm Cunningham:

Meghan, you're nodding your head that's ringing a bell very clearly with you as well.

Meghan Heatrick:

It is especially from a metro area. There's such a loss of connection to country when someone moves into a mainstream aged care facility in in Metro Sydney. I'm not sure about the others, but I remember seeing a gentleman who was 86 and I got the first thing I did when I got to the care home, they were like, oh, you know he's a high risk of falls and, you know, he's always locking himself in his room. And he was missing that connection to country because of his story. And because of. So when I walked into his room, he was sitting on the floor and the care staff are like, oh, he's had another fall again. And I was like, well actually no he's not distressed, he's actually quite like he's quite calm and engaging in an activity. And all he was doing was he was trying to clean one of the skirting boards, and trying to get his room in order the way he wanted it to. So definitely that understanding, and especially what Dawn was saying, in terms of looking at how they actually connect to their environment, is a really important aspect of how we actually support and provide care to someone who is Indigenous.

Colm Cunningham:

And clearly, you're also all talking about and Dawn, you flagged with us as being culturally aware. Are there common things that you for want of a better description, have to roll your eyes at as consistently seeing people not being aware of and not leading the conversation with?

Dawn Bessarab:

Well, I think Steph said it quite well is that, you know, normally the biomedical model very much focuses on you know, the medical or the disease component, the medications, all of that. And one of the the, the advantages of The Good Spirit Good Life Tool is that it's very holistic. And so even if you're you don't have an awareness or an understanding of Aboriginal culture, the factors in themselves, highlight that these are things you need to think about. So why is family and relationships important? Why is country important? And as an aged care worker, if you don't understand that, then it's a roadmap, like maybe I need to find out, maybe, and for an organisation who may not have introduced into their service delivery and their programs, cultural awareness or cultural orientation, then that's already starting to roadmap that, you know, maybe we need to actually find out why is the Good Spirit Good Life pointing to these factors as being important as part of a holistic assessment of an Aboriginal person? And so it's not just looking at, you know, are they on their medication regime, we need to consider falls. Well, physical, you know, the age care, the Royal Commission identified the importance of older people having access to exercise and physical activities. And so, you know, taking someone outside into country, because country isn't just about being in a remote community or a regional community, you know, we're living on country. And sometimes we forget that because of the colonising impact and the build up of urban communities. But urban communities, cities are built on country. They're built on Aboriginal country. And so there are still places within the city, which have significant stories for the local Aboriginal people. You know, where I'm based in Perth at the University of Western Australia, which is right on the banks of the Swan River, or as the Nyoongar people call it the Derbarl Yerrigan. And right where we are was a significant meeting place for Nyoongar people. This is story in that. So country isn't a remote concept. It's right there. So you know, service providers could look at how can they have excursions or enabling an older Aboriginal person who may be taken from their remote country, out into the urban environment where they can go to a park or a place that's significant for the local Aboriginal or even having a welcome to country? You know, for the local Aboriginal people to welcome older Aboriginal people who from somewhere else into their country to make them feel spiritually, emotionally and psychologically safe.

Colm Cunningham:

Steph, one of the things we're focusing on is how we provide culturally aware care. How do you assist or engage a First Nation person with dementia, when the word or diagnosis of dementia is inherently Western?

Stephanie Charlesworth:

My experience with this is sitting within the Aboriginal Interpreter Service in Darwin. And there was a whole lot of people from a whole lot of different areas whole lot of different languages, and we're trying to together come up with a term for dementia and what to what it actually is and what it means. It's a sort of better just to sort of go in and sort of ask the people when you're going, you know, and going to speak to people in a different language and then try and just to sort of work out, you know, okay, this is this is why this person is presenting in this way, because they've got this disease called Dementia. And this is what's happening, you know, and helping give the family some tips in how they can help that person. But particularly because we focus on behaviour. So looking at what sort of things, you know, the family might find useful and practical, rather than the term dementia.

Dawn Bessarab:

But I think what's really important is that sometimes, and this is my being has been my experience, particularly in in some of the regional remote is that when people who have dementia start to behave in certain ways, or they're forgetting things, sometimes the Aboriginal community has put it down to something that they've done wrong, it's a spiritual, it's a spiritual thing. And their behaviour is because they going and what's called a in Nyoongar, they say, "kaart warra" a little bit crazy. But when you start to talk about dementia as a disease, and I think that was really important, what Steph said is educating people that this is actually a disease. And it's not because someone's done something wrong spiritually, or culturally, it's part of a progression, it helps the community and the family to start to actually understand that this is not a cultural behaviour, or they've done something wrong, but this is part of part of a disease that we can now this is what we need to do, to be able to work with our elder. And because we know that dementia also takes away the memories, and our elders are responsible for handing on cultural knowledge, and teaching that it is really important to look at how you can work with dementia to start to capture some of the memories and the knowledge that are important for young people in communities going forward.

Colm Cunningham:

Meghan, can I ask what's changed in your practice over the years as your awareness so you know, if you think about somebody who's not worked in this area, what what I guess tips or things that have changed about your approach?

Meghan Heatrick:

That acute awareness of the historical events in this country, and how it's actually impacted on someone that's elderly, First Nations background and has a dementia diagnosis. And as Steph was talking, I have recently seen a woman who is Aboriginal, she was a part of the First Nations and we did get a referral for her. And the referral was purely because she was locking herself in a room, she was screaming at night, she wasn't engaging in any interactions with the care staff. So when we came out, I got the referral. And I was just like, Okay, I'll call the family first, because this is I'm going to need them, I'm definitely going to need them if she because she was Aboriginal. And and that was, that's always been a part of my practice is, once you engage in a family to help sort of communicate and understand where they've come from, you're able to support them in a much more heightened way, rather than you would if you did just approach it from a medical model. So for me, it was about sitting the care staff down and actually explaining what the stolen generation was, Health's role in that stolen generation, because we were as nurses, doctors, social workers, we had a huge, very messy part in the stolen generation in that the health providers were the ones that forcibly took those kids away. So we do actually have to acknowledge that before we can even turn around and say, This is what we're going to do to provide you with good quality care. But we need to acknowledge the fact that as health providers, we did have a bit of a part to play and that is traumatic for them. So if you come knocking on their door in the morning and say, I'm the nurse, I'm here to shower you, good luck, because that's not going to happen could be a real trigger. It is it's a it's a massive trigger. And they it's just about explaining that and taking the time. And I think that's what I've learned with my experience over the last couple of years. Is that really just sort of sitting down and calmly being able to tell someone what trauma base behaviour really looks like.

Colm Cunningham:

There's so many things, about the individual and awareness of the space and the environment that are so key, but Dawn you're sorry, we're about to come in there.

Dawn Bessarab:

Yeah, no, I think there are a couple of things to be mindful of. And I mean, this is very relevant, you know, to our international audience, particularly our Native Americans who had the, you know, the Indian School where their children were removed. So, you know, The Stolen Generation, I think is a term that we use in Australia. But I don't think it's just specific to Australia. However, when we're talking about dementia, you know, you might have in an aged care home, and older Aboriginal people who was part of the stolen generation, but you may also have a non Aboriginal person who was from around that same time period. And so they're going on, you know, they're remembering when Aboriginal people weren't allowed to come into towns weren't allowed to participate in white society. So you know, their dementia could be triggered, and their experience of Aboriginal people could be triggered, which was not a good experience, because Aboriginal people were seen to be less than human. So if you get an older Aboriginal person and a non Aboriginal person, older, non Aboriginal person who are from that same period, but both coming from very different worldviews and experiences, you see what I'm saying? Both experiences could be triggered where the Aboriginal person is then discriminated against by the older and non Aboriginal person who's back in that time period and saying, What is this black person been doing? And I've actually had someone tell me a story where that did happen to one of their, their, their members who was in aged care being discriminated against by an older Aboriginal, non Aboriginal lady who said, What are you doing here? You shouldn't be allowed to be here. And you know, your Aboriginal people are dirty, and you shouldn't What are you doing in this in this service? Which traumatise the Aboriginal person from a racist perspective. So I think we do need to be mindful that these things could happen if you've got people who are coming from different time periods where they experience something different, and that's something else to think about. But the other thing, just thinking about, you know, aged care services, you know, there's, creating Happy Places, you know, creating a happy place in the organisation where an Aboriginal person or a non Aboriginal person could go where they're happy, because the clinical environment is very dominant. And so the, you know, so you know, these are just things about to think about maybe how do we do things differently? And how do we create happy space for non Aboriginal people or Aboriginal people, and I had a service organisation say to me that they had an old man from the lands, and that he was always wanting to go outside and lay down in the garden. And they were horrified. And I said, Well, what's the problem in that? Oh, well, you know, we have duty of care and we've got to think about this. And I suggest, but that's where he's the happiest as he's connecting with the earth. So maybe if you're, if you've got duty of care issues, and you're worried about that, why don't you create a garden space, where older Aboriginal people who want to sit on the ground or want to lay down and connect with the earth can do it, and it's not, it's not putting your service in a situation where people think you're not providing proper duty

Meghan Heatrick:

It's, it's certainly one of the main issues of care. that I have come across, or challenges I've come across, definitely, in urban areas is where, because it's so built up, and the environment is the hotel like, and they're all designed and marketed to be these amazing hotel like facilities, but there's never a space for anyone, you know, First Nations or non First Nations to even engage in the outside area. And if it is, it's all patio based, and it's sunsets and cocktails by the pool. And it's not that it's just the design of a care home is not, it's not home, like and it doesn't feel like home. So, you know, you ask someone who is Indigenous, you know, let's go out for a walk or let's go out to the garden. I've, I've had on two occasions, they're just like, that's not a garden, like, I don't want to sit on concrete, like I want to do. I want to engage in other things. So it's really hard when you are in a care home and they do look beautiful, and the walls are all the same colours. And, you know, it's really hard to engage someone in in that sort of outside environment space.

Colm Cunningham:

Dawn, the tool, the Good Spirit, Good Life assessment tool. How do we get access to that and how? I assume, given that a lot of the conversation from all of you, has been about awareness and taking the time. I'm assuming there's some wonderful support materials that may help those listening.

Dawn Bessarab:

Definitely, if you go on to the you can download it from the www.aboriginalageingwellresearch.com So the tool is able to be downloaded from that for people who are interested in having a look at the tool. It's, it's free. And the tool comes with a package that tells you how to use it and provides instructions on if someone in terms of the assessment might score low, what you can do to actually address that particular factor. So if someone scores low on, they're not accessing country, and they're quite depressed about that. What can you do to what are some of the little strategies and activities that you can do to enable them to have access to country so it provides some direction to service providers on how they might put some strategies in place.

Colm Cunningham:

And we'll certainly be linking that useful resource in the podcast link below. Because it's so important to be accessing these tools, Steph, and Meghan, are there other resources that you think are important or that you've really valued in your learning?

Stephanie Charlesworth:

Yeah, I think I think it's a book I found particularly useful was the Little Red, Yellow Black Book. YDon't know if you've heard of it. But have you heard of it, Dawn? Yeah, it's it. Yeah. It's a book which explains things really well about language about approach about, about the history and everything all in a little book and it's really good just to have a read. Particularly for non Indigenous Australians because it's quite insightful and easy to follow.

Colm Cunningham:

And, again, we will make sure these resources are linked in our podcast show notes. Thank you, Dawn, Steph, and Meghan, so much for taking part in this Dementia Podcast. It's been so valuable to get your insights. And I guess ultimately, to hear your heart for the work that you do. So I'm so grateful for that. I want to thank you all on behalf of all our listeners.