In National Reconciliation Week: Be Brave Make Change, we wanted to reshare one of our episodes of ‘The Dementia Podcast’ from last year celebrating the history, culture and achievements of First Nations peoples.
Joining Colm in this episode, HammondCare CEO Mike Baird shares what reconciliation means to HammondCare and why it is important to embark on the journey of reconciliation, acknowledging their role in caring for all people, including First Nations people living with dementia, and the development of a Reconciliation Action Plan.
Colm then 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.
For all feedback please email firstname.lastname@example.org
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. It's also important to use this time to consider what we need to do to support our First Nations people. And dementia in particular is much higher in our First Nations Australians than it is in non-indigenous Australians. So it's particularly important that we focus on the needs of people with dementia from our First Nations. And that's what our panel are going to discuss today. Now before I introduce our expert panel, I'm joined by CEO of HammondCare, Mike Baird. Welcome, Mike. Mike, I'll be introducing our panel next, who will be talking about our first nation, Australians and the issue of dementia. But what is your message?Mike Baird:
Well, thanks, Colm. It's a pleasure to be here. And whenever we meet, that actually, we should acknowledge the traditional custodians of the land on which we're speaking from and we are on. I do want to acknowledge the Gadigal people of the Eora Nation and pay respects to elder's past, present and emerging, and for wherever anyone is listeningColm Cunningham:
What was great to have your wishes, and Mike in from. June of 2021, HammondCare began its journey in contributing to Australia's reconciliation movement when we registered for a Reconciliation Action Plan. So it's really great to be talking about it. Why was it important to begin that journey?Mike Baird:
Well, importantly, it was staff led, there were a lot of staff that have sort of suggested we really should be part of this. And we do have sort of First Nation, residents, clients, but also staff members. And there's an acknowledgement of that. And as we've listened to their voices, and the debate that is going on, and the opportunity to play a role. I think we've taken the first step, and to me, it's it's quite simple, we we are given the opportunity with our mission to care for people from everywhere, many, many different sort of countries and cultures and backgrounds. But, you know, for us, the person in front of us, what we're about is deep relationship based care. And that is who is before us. Who are they? You know, what's the history? What's their background? What is it they love? What's a culture? What are their beliefs? And obviously, our First Nations, clients and residents, well they have, and deep heard, from the history that they have lived and their ancestors that lived in their elders have lived. And I think we've got a role and responsibility to help them more broadly, in their community, in the various states in the country, we have a role to play in in reconciliation. So I think it made a lot of sense. And I'm really proud of our team and staff that have brought this forward.Colm Cunningham:
And Mike I'll have a panel are going to be talking about some of the ways we support people with dementia who are from our First Nations. And as people listen, what do you hope the panel will be thinking about in terms of how we support First Nation people with dementia?Mike Baird:
Yeah, most importantly, you know, how, as a provider, and can we ensure that those First Nations people that are living with dementia, how can we engage them in the way that is respectful and loving, and gives them every opportunity to live the best quality of life they can. And you know, that, for us is what drives us. I hope across the organisation, this is a week that's very important as part of our reconciliation journey. We stop for a week and, and obviously reflect on what we can do. But it shouldn't just be the week, you know, this is a long, ongoing journey and one we're very committed to. Thanks. Thanks, Colm.Colm Cunningham:
So I'm delighted to now introduce my panel of Stephanie Charlesworth, and Megan 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 gonna hear about some of her work but firstly, Dawn, I'd appreciate if you would provide an acknowledgement to country for us.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 Nations 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 hard. 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 higher 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. The Good Spirit Good Life tool, why that's really significant is because it's a tool. It's the first validated tool in Australia, and as far as we know, internationally, which actually looks at assessing the quality of life for older Aboriginal people in care, and the way that the tool came about. And I'd like to thank and acknowledge the valuable contribution in the co-design of the tool because it was a co-design process by all of the Aboriginal research participants, community groups, and in particular, the elders group.Colm Cunningham:
What do you think the difference would be in using this tool in your engagement with an Aboriginal person?Dawn Bessarab:
Well, I think the differences that tool enables service providers to ensure that they they're able to sit down with an Aboriginal person and their family to make a cultural assessment, which is relevant to Aboriginal people. So the tool covers 12 interconnecting factors that can be used to enhance and to ask questions around whether an older Aboriginal person in care, is quality of life is good, or are there some areas which need a little bit of attention, because the person's quality of life is not going so well, in these areas. Some of the factors in the tool, look at family and friends, your relationships, the community, country was a particularly important factor, culture, health and the elder role, respect spirituality supports and services safety and security future planning. I mean, one of the surprises in the tool around future planning was where elders were concerned that and, you know, their end of life plans, did they have a funeral fund, like how, who was going to pay for that? And they were really concerned that their families would not be able to do that. But you know, a service provider would not have thought to ask that question. We certainly didn't. So that was interesting when the elders identified that as part of ensuring that quality of life is not just about present but also future planning, basic needs. So have, you know all of the factors looks at areas look at areas that elders identified as being important and integral to an older person's social and emotional well being. And so it provides a way in which service providers can start to engage more realistically and culturally stuck in a safe cultural way with older people and their families,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, you know, would have been, you know, as a consultant to have that tool on hand when I was working up there to actually, you know, help with those cultural assessments, 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 stain on their country, how do we support that person to stay on on their 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:
And 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 looking 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 were like he's had another fall again. And I was like well not actually know 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 as it being culturally aware? Are there common things that you for want of a better description have to roll your eyes 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 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 programmes 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 our 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 a 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 the 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 what it actually is and what it means. It's 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 go on 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:
Steph, can I ask when you are planning in a rural setting to go out on country, are there important things in the planning and the time that is needed that might be different?Stephanie Charlesworth:
Oh, absolutely. Like, you always need to check in. Particularly if there's any, like Sorry, business or anything like that happening on the day that you actually going out?Colm Cunningham:
Sorry, can I just ask a quick question for our international listeners sorry business Dawn, what is sorry, business?Dawn Bessarab:
Sorry business is when the community or the family going through a loss or bereavement someone has passed away. And so the families and sorry business they're grieving, and depending on the community and Steph's talking about, you know, her work in the Northern Territory and in in the more traditional communities. You know, there is a sorry business that has to be attended to so can be attending funerals, or people have to move into sorry camps where families don't move for a week but they're all out in country in a sorry camp and going through particular rituals and in terms of um, the loss of the person. And so you know, when someone's in a sorry camp, you wouldn't be asking them to leave that sorry camp to attend. Because that's a priority. And, and it's around how do you work with someone who may need treatment, or trying to organise a treatment, when you know that the community is in mourning, or in sorry, time,Colm Cunningham:
it's not about I've got this job to do in this time frame, I need to first engage with where's the community at and ensure that I'm actually working to their time and needs.Stephanie Charlesworth:
And also making sure you got someone with you who speaks language, somebody who so these are four things which you need to check off. Make sure if you need a permit, or not to go on to the go onto the land. Also making sure you have someone with you who has that vouched relationship, because otherwise you're gonna scare people off. You can't just rock up sort of by yourself and go, Yeah, I'm here to do this and help you with dementia, because that really doesn't work. And also having an understanding and done your own research and education about the trauma in which a lot of people have experienced. So I think having that in mind, does change your approach quite a bit to the people you're actually going in to see.Dawn Bessarab:
And can I also add to that, and I'd Steph I don't know whether you found this in your work or Meghan even in your work with when the urban community, but when we have older Aboriginal people who have dementia, and the communities in Sorry, sorry, time, sometimes the older person because they've got dementia wonder why they're not seeing someone. And when you have to constantly, perhaps say that the reason this person is not here is because they've passed on, it raises a whole issue of because they don't remember. And so you may have that re traumatising, when they find out that someone has passed away. It's also a conversation with the family on how much do you actually talk about the person that's passed away? Or do you or don't you because they've forgotten?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 approachMeghan 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 yourself 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 analysis 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 practices. 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 can 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 learnt 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 based behaviour really looks like.Colm Cunningham:
There's so many things, about the individual and awareness of the space and the environment, there are so key. But Dawn you worry, 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 the children were removed. So, you know, the stolen generation, I think, is the 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, Aboriginal people are dirty, and you shouldn't What are you doing in this in this service, which traumatised 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 a 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 said, Yes, 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 of care. I mean, I don't know whether Meghan or Steph, you want to comment on that. ButMeghan Heatrick:
It's, it's certainly one of the main issues that I have come across, or challenges I've come across is definitely in the 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 in its 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 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 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 do, 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 Megan, are there other resources that you think are important or that you've really valued in your learning?Meghan Heatrick:
Well, for me, personally, I have as an occupational therapist, I'm all about understanding different aspects of people's lives and how that impacts on them. I've previously myself used what we call as the Kawa Model, which is an approach to caring, it's a traditional Japanese model. And I found that really quite, it like powerful and impact, really positive when someone was using it in pain clinics in Alice Springs. And it's no it is because it uses elements of the Earth, such as rocks, rivers, driftwood, it's to explain what are the barriers in your life? What flows really well in your life at the moment, versus what's going to stop your flow? What's going to stop you from being who you want to be? And what matters most to you. And I found that quite and it's quite an old model, like it's obviously about 20 years old. So, but it's a really good way to help someone connect to their life and connect to their country. And it's just elements of the earth that I found. quite positive.Colm Cunningham:
And Steph?Stephanie Charlesworth:
Yeah, I think, I think a book I found particularly useful was the little red, yellow black book, if you've heard of it, but have you heard of it, Dawn? Yeah. Yeah, it's a book which expresses really well about language, about approach about, about the history and everything all in a little book. And it's, 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.