Table 1 Themes, sub-themes and supporting quotations

Key principles of quality care for PLWD in hospital

(Understanding and integrating needs improves patient care)

- Understanding and integrating needs

- Communicating needs to staff

“That’s [integrating needs and preferences into care] your starting point. Everything else is extra… if you understand your patients’ triggers, you know what to avoid”. (Nursing_7 months in current role_#2)

“It’s [understanding and integrating needs and preferences into care] incredibly important, because a lot of what we do is so reactive here… So, I think it’s very clear that it improves patient care across the board”. (Medical_6 months in current role_#8)

“They [PLWD] just go back to whatever they were doing in their life, like some of them like to clean, and they want to clean the whole ward. Some are doing the laundry kind of things, the folding… They’re just happy to do those kind of things”. (Nursing_10 years in current role_#6)

“I was just thinking this morning, maybe I’ll take some juice in with me because he’s always had his tablets with a glass of orange juice, because that’s how he likes it. And I think with dementia, a lot of routine is good for someone with dementia and I think maybe he’s out of that comfort zone at the moment of having a routine… He’s always had most of his tablets at breakfast time with his breakfast and then one tablet at lunchtime and one at tea time. I mean when the nurse rang me the other night and said he won’t take his medication, that was 9 o’clock. It was quite late for that tablet”. (Wife of PLWD_#4)

“It’s not about trying to stop things happening. It’s about how can we respond and react in a way that minimises harm for both the patient and the staff”. (Nursing_8 months in current role_#10)

(Partnering with families enables person-centred care)

“They’re the ones that [Family of PLWD] spend the majority of time with that person [PLWD]. And you can get a lot of information from them around what is normal, what is not normal, and strategies as well. Sometimes they’ll sort of say, ‘This is the particular routine they follow and this doesn’t happen and this happens’. So, identifying routines is a really good strategy and I often sort of put that into the behaviour care plans or into my notes quite explicitly”. (Nursing_8 months in current role_#10)

“The thing that comes to mind the most prominently is probably utilising family members, even though it’s probably the most cliché thing. I don’t know, for me, that just resonates the most. It seems to help heaps with a face that can be recognised if they’re present, or if there’s a phone call or something”. (Nursing_1 month in current role_#5)

“I’ve showered him twice but I’ll do it again today. I don’t think he’s had one since Tuesday… I did say to the nurse on charge that night that he’s not incontinent. He doesn’t really need pull ups. I know sometimes he has a problem remembering how to urinate, so maybe they just thought it was easier to put pull ups on him. I’m not really sure. But they haven’t after that”. (Wife of PLWD_#4)

(Multidisciplinary teamwork and communication between staff facilitate holistic care)

“The behaviour huddles we have found are amazing because we can see different lenses for people. So, for myself, I come from a nursing background, whereas mental health, the liaison there is very good at identifying, ‘Well, they’ve started this new medication, these are the side effects’. And then we have our neuropsych[ology] as well, so they’re seeing it more from a psychological perspective. So those huddles… Anyone you speak to, they are a really, really effective way of understanding. I think getting that understanding of what’s going on, rather than just responding to what’s happening to that person”. (Nursing_8 months in current role_#10)

“I think it’s just the handover is the priority number one. It has to be done correctly. You can prevent all the injuries, all the code greys [emergency responses to aggressive behaviour] and all of that. That’s why a lot of people say our ward does do it well. I think because we sort of wait. We all take that time to talk to the people who are coming to do the extra care, to support us. And also, we want to support them… That takes a few minutes but it saves you trouble for the whole shift”. (Nursing_10 years in current role_#3)

(Learning to care for PLWD comes with experience)

“There is pretty much no teaching in undergraduate, postgraduate training around how to interact [with] or support a person with dementia. We might learn about what dementia is, but not actually how to care for the person with dementia. So, not in formal training in either of those disciplines, I can say confidently. And then, once you start working, it’s just real time experience, there’s no specific teaching”. (Medical_6 months in current role_#8)

“Through Dementia Australia and the University of Tasmania, there’s lots of online training courses now, which keep you up-to-date with what the latest evidence shows for these patients. A lot of them are very community-based for obvious reasons”. (Occupational therapy_5 years in current role_#11)

“It was empowering the junior staff, and I think that’s important. I think there’s a lot missing from their education in that actual side of things, I think they know clinical stuff really well, but it’s actually the behaviours they really struggle with”. (Nursing_7 months in current role_#2)

“It’s giving the staff some confidence in using those strategies and tactics… and being ok about ‘Yes, he’s unsteady, but let’s not stand directly beside him because that clearly upsets him and increases his falls risk rather than decreases [it]. And let’s just give him his own personal space’. So, it’s about giving them the confidence to implement some of the strategies we suggest and also being open to role modelling those as well”. (Nursing_8 months in current role_#10)

“I think the training needs to focus on understanding that person, understanding the disease, understanding that it’s a progressive disease, not a treatable one and focusing on what we can do, not to change behaviours, but to manage them within the setting. So, it’s not about trying to stop things happening, it’s about how can we respond and react in a way that minimises harm for both the patient and the staff… I know education isn’t the solution to everything, but I think in this case, until people really understand dementia and what it does to people, it’s hard to have that empathy and that patience with someone who is presenting with those challenging behaviours”. (Nursing_8 months in current role_#10)

Factors inhibiting quality care provision for PLWD

(Responsibility for understanding the needs and preferences of PLWD is unclear)

“Also, whose responsibility is it because a lot of the time, the expectation is on nursing staff and they are just so busy…. I don’t think that’s entirely clear whose responsibility it is… This is where the difficulty lies, as if it’s the responsibility of one person and that person’s not available, the system falls apart. If responsibility is on everyone, then it gets murky as to who’s going to do what… I think we should all be doing it, whoever’s in touch with the family, if those needs and preferences haven’t been sorted and someone’s going to be in touch with the family, well then that’s part of the conversation you have with family”. (Nursing_1 year in current role_#9)

(Current tools to understand and integrate the needs of PLWD are surface-level or reactive)

“It might be that I’m going to see a patient that has made a change in escalation and behaviour and I’ve got just some prompts right up on the bedside, which can actually really help me in that de-escalation situation. It’s not something on the computer that I’m trying to find. It’s right there in front of you… It gives you just some cues to just kickstart some conversation… If I was to do an audit, it wouldn’t be done as much as I would prefer”. (Nursing_1 year in current role_#9)

“The Sunflower tool is just a really quick snapshot, whereas the Behaviour Care Plan is, I guess it’s a more comprehensive plan that’s created actually through a behaviour meeting”. (Nursing_1 year in current role_#9)

“They’re very time consuming and they take a lot of resources. So, when we do these behaviour care plans properly, it involves either a geriatrician or a senior trainee, a senior nursing member from that ward, risk staff, a neuropsychologist, often a member from the consultant liaison psychiatry team and a cognition team. So, you end up having a huge number of resources put into that document, which is why they are so amazing, but it’s just not practical to do that for every person, which is why we pick off the most challenging patients to do that. But by far they are the most helpful documents going around for dementia care, if they get read and applied properly. But often they’re in the notes and they’re embedded deep and people don’t read them, they don’t know they’re there… But patients who don’t have behaviour care plans, I’m playing catch up, everything’s reactive”. (Medical_6 months in current role_#8)

“I think they ask, ‘Do you have dementia?’ or something. I can’t remember exactly what they ask and I can say, ‘Yes she does’, but there’s no further questioning about what are her needs, what type of dementia does she have, what do we need to know, that sort of thing. There’s no way to record any of that information”. (Daughter of PLWD_#2)

(Formal communication channels are lacking between hospital staff and support people)

“I think we have to work at different ways of communicating because there are carers involved and we can’t always be there”. (Son of PLWD_#6)

“It was just hard the other night when the nurse rang me about his medication and then [husband’s name] hung up and because it’s an unknown number I couldn’t call back… There’s no number to ring. I can’t just ring and get through to the nurses”. (Wife of PLWD_#4)

“Some formal way of communicating… I’d feel better with written because if I talk to somebody over the phone, sometimes people are distracted or they don’t hear or they don’t take it in, but if there was a chain of communication back and forth where you could raise a concern and have an answer back, that would be helpful… Ideally you’d want something every day because presumably they go in an see the patients every day, but if that’s not possible, is it possible to email something? Even if there was a book or something that you could write in, something that stays at her bed or something where you might be able to say, ‘Hey, can you keep an eye on her food intake today?’” (Daughter of PLWD_#2)

“I didn’t even know he was being brought to the ward the next day… That was the only bit of lack of communication that I’ve had, that I would’ve liked to have known where he is and what’s being done with him”. (Daughter of PLWD_#5)

(Lack of staff and time impact the quality of care received by PLWD)

“Patients with dementia need time. They need someone to listen, and if you keep fobbing them off, especially with the patients with BPSD [behavioural and psychological symptoms of dementia]… it starts to escalate. I can literally see it”. (Nursing_10 years in current role_#3)

“I talk to the patients themselves, and I think just trying to can be difficult some days, but try to find that time to talk to people. We rotate quite regularly and I find at night I like to take however long it takes to settle all my patients for the night. I’ll spend as much time as they need and work my way around, so I’m often still settling them quite late, but it gives me the opportunities to talk to them, ask questions, and I find that they settle and sleep better because they’ve had that one-on-one time”. (Nursing_7 months in current role_#2)

“The extra resources like RUSONs [Registered Undergraduate Student of Nursing] or health assistants or PCAs [Personal Care Assistants] and those type of things definitely allow those patients to have the one-to-one time which could help with the filling out of paperwork or talking about, doing those sunflower things… they’re the people that can actually help with that. It’s awful and you wish you had time to do it, but we just don’t have that time”. (Nursing_4.5 years in current role_#4)

“They’d assigned somebody to her so that when I wasn’t there, every time she went to get up or something, there was somebody there to say, ‘Hey, it’s okay, you’re in emergency [department]’… Which was really good because that’s what I was worried about… It was comforting for me to see in the morning when I got there that somebody had been keeping an eye on her”. (Daughter of PLWD_#2)

Considerations for future improvements to understanding and integrating the needs and preferences of PLWD

(Importance of a pre-emptive, rather than reactive solution)

“Just having something to refer to with these needs and preferences, because we all need that information in different ways and it would be amazing to have access to that”. (Occupational therapy_5 years in current role_#11)

“It’s actually being prepared when they walk in the front door, knowing what those preferences are”. (Nursing_1 year in current role_#9)

“If that something could be accompanied, so you could read some background about him. Because you’re not going to get information from him. He can’t remember… To have a copy of this, if you went off to hospital again, would give you an idea of the person you’re dealing with”. (Wife of PLWD_#8)

(Hospital admission kits should contain both information about PLWD and their familiar items)

“Well it definitely, definitely helped her. As soon as I took the photos out of the bag and put them up, she was there naming everybody in the photo. So that definitely orientated her. Yeah fairly quickly. And, as I said, it’s a point of conversation, it gives the staff something to converse about, if they can see a photo there”. (Daughter of PLWD_#9)

(Information about PLWD should be readily accessible)

“Whether we had a tool or something that everyone could use and could access, that everyone can see what’s already been established and what still needs to be done next”. (Occupational therapy_5 years in current role_#11)

(Variation in views regarding when hospital admission kits should be created)

“It really has got to start from the community and has to be pre-emptive rather than reactive. So, having something that family members, loved ones can put together in the community, when the person is relatively well and stable, that can then provide all of that key information, right from the first moment that person enters the healthcare system, with the ambulances and the emergency department. But there are obviously challenges with that, with older people and their ability to utilise technology, and to have time to do this, and having resources available to help support that to occur in the community in the first place”. (Medical_6 months in current role_#8)

“I think admission into the ward would be a great opportunity to go through things with the family”. (Daughter of PLWD_#2)

“I could have filled something in easily while I was waiting there… On reflection, I spent a lot of downtime there, reading emails and catching up on social media”. (Son of PLWD_#6)

(The utility of a hospital admission kit is likely to be limited by the advancement of dementia)

“The ones [information packs] that you get from the nursing home might have a bit of information about how they ambulate around the ward or maybe has some of the things that they like to do. But for the most part, the reason they’ve presented to hospital in these situations is either delirium, which is not their baseline, or something else that’s exacerbated their dementia and has resulted in a hospital admission. So, it’s a bit hard… the information that is in those packs isn’t always how they’re presenting to us”. (Nursing_4.5 years in current role_#4)

“He was a great golfer and loved his golf. Very proud of his hole-in-one. Shows everybody his plaque. In the last couple of months, couldn’t care less about that either. If I took his trophy in or anything, it wouldn’t mean anything to him. Where once upon a time he was very proud of it”. (Wife of PLWD_#8)