Table 2  Thematic table with illustrative quotes for themes

Language used to talk about dementia

· They'll just say it's about memory problems or they're not the same as they were before. I don't hear the word dementia being used a lot by people… (13)

· It's not necessarily labelled in that sort of language if you get me….  It's just oh so and so's getting a bit old or that they're just forgetting things a bit…. I suppose that you could say that the symptoms are recognised and supported in community, but in terms of actually recognising that dementia or that could be dementia, that that hasn't been - it hasn't really been talked about like that (15)

· Not all the time.  No.  No.  They very rarely use that particular word [dementia].  They'll say, oh, that one’s a bit dookun or a bit… that one's a bit booky. You sort of look and see, yeah, they are a bit booky today. Some will just say, oh, that one's forgetful. (5)

Dementia diagnosis

· Few people in ACCHSs have been formally diagnosed with dementia: The client that we have that is formally diagnosed is just one client that's formally diagnosed, but we do have other clients that we're suspecting and we're pushing through with the GPs to do formal assessments, so that the geriatricians can do formal assessments. (4)

· Families as central to the diagnosis process: When you’re booking them in for the next check-up, you’d invite - ask them to consider bringing a family member with them. That’s where you do it… a little bit more collateral information... (11)Recognition of dementia symptoms: Usually it's not flagged. Usually either myself or one of the nurses notice something, some behaviour or some mental change in a client we've known for a long time - well not a long time but known for a while. There seems to be some change…- it's very rare that the community would report that. They may report some behaviours, some irritating or annoying behaviours, that sometimes come to light but mostly I think it's more the clinicians picking it up in the course of our work. (3); I guess we never get self-identification. There might occasionally have people come in going my elderly relative isn't functioning very well and I want you to check him out. That doesn't seem to happen. It's more picked up incidentally. (14)

· Screening tools for dementia: It's just an MMSE and we do start doing that for all of our clients in their health check but not until they turn 65. (1)

Care following a diagnosis of dementia

· Referral to a geriatrician: [T]he local geriatrician at the [x] Hospital start doing about quarterly memory and geriatric clinics initially under a research program. Now he has just continued them and that has actually made a big difference because there's lots more formal diagnoses now, rather than that oh well we know Uncle Arthur's not quite all there but he's okay, that kind of thing. (14)

· Geriatrician access issues: We can refer people in - again, depending on how advanced a person is, that involves a plane trip in to see the specialist so not all of our dementia patients go into that clinic. (3)

· Management of dementia patients by ACCHSs: This is the ideal avenue, we would then refer the patient to our health worker, who would follow up with any feedback the patient has after they’ve seen us. Whether they’ve got any further questions, whether other family members might need some education. Then usually there’s a reminder to review that patient, depending on each case, three months later for instance. Or monthly, or yeah. (11)

Enablers to high quality dementia care

· Routine Health Assessments as a mechanism for diagnosis: [T]he 715 Aboriginal and Torres Strait Islander health check. It’s actually an item number you bill through Medicare. That comes up due every nine and a half months. When you complete it, it actually comes up with an automatic reminder on our system that the patient is due. We can actually send them reminder letters or text messages to remind them that their health check is due. (11)

· Relationships within communities to support diagnosis and care: Awareness of our people.  We know our people… …Yeah. So it's just building that bridge and connection and making them feel safe and trust and helping them to be aware and know of these illnesses, that we are there to help them, not to lock them away. Yeah. (13)

· Community and family: The best way really I think at the moment is that they shuffle that person [with dementia] around within the community to different family members - that’s the way they handle it most… …But as long as they on their Country and in familiar environments, their regular community or people they know who speak the language - his language - then that's the least traumatic I think. (3)

· Comprehensive, multidisciplinary, and holistic care models: So we - within the service itself, we've got psychologists and we've got counsellors and we've got a social emotional wellbeing team and we've got our Aboriginal health workers, so we try and support them and keep them home as long as possible. (5)

· The use of tailored visual resources to support care: We try and do everything here visually, that I try and have visual supports for people. So for my staff, for the clients, the families, because it's how they understand it. I've got some families here who are very well educated and so I communicate differently with them. So I could give them written information and they would be able to read it and understand it (2)

Barriers to high quality dementia care

·Limited community awareness and understanding of dementia:There isn't self-recognition and there certainly is less family recognition that there may be an issue that is potentially treatable or requires extra services. (14)

·Denial and stigma: Yeah, because it's not treatable so it's a terminal condition, for want of a better description. I tend to find that's usually the biggest barrier and then the second biggest barrier is - like one is actually getting them to go to the doctors and being diagnosed, and then actually accepting that they have then that diagnosis. Because people don't want to and it's not them and they are only silly sometimes, you know? People will pass it off for a long time. (10)

· Dementia perceived as a low priority health condition:I think it's easy to just gloss over memory issues and certainly, clients at [service] present with a whole range of complex issues and usually competing priorities. I think memory is probably one of those things that are put to the bottom of the list and we often don't get to it, whether that's consciously or subconsciously. I think it's usually more pressing needs until the family presents in crisis sometimes. (1)

· Community literacy and the need for accessible and culturally appropriate resources: I think resources or tools that they can understand. Things that are more appropriate for them, to be honest. There's no point printing out something that you would give to a middle-class white person, here you go, here's some reading material. No, if you're going to - teaching needs to be about presenting it in a way that they can understand it and that's lacking. It's lacking across a lot of areas for Aboriginal communities, particularly around aged care. (2)

· Lack of staff knowledge, education and training about dementia: Having a documented coordinator would be really useful I think, just because as I said, at the moment we've got a de facto person just simply because the other work she does… …I'll give you another example where things are better - and that is that we have regular endocrinology [unclear] which are outreach from the hospital in our service and have done for many, many years. The diabetes educator coordinates that and so it runs like clockwork. People don't get left behind; they don't get forgotten. They get rung a day in advance just to make sure that they're still coming (14)

· Gaps in service delivery: The other thing - the biggest problem is distance. So sometimes respite care - so for people to go into respite care to give the family a bit of a break means travelling 400 kilometres into [town name] and then put into a place which they don't recognise and it's foreign. You know what that does - dementia people clearly become disorientated and become quite distressed in that sort of situation so that is a problem. It is a problem more for families to be able to get some sort of respite. (3)